Date: 20.06.2012
From: rhona
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Subject: new thread for bsk & lynn
Hi Girls, How are you both? I was at the hospital today, I got another injection into my knee and another all over injection, not ideal, as that is about 6 now that i have had in my knee in the last year. I asked if that was not too many, they said it wasn't ideal but i did need it. I go on Friday for the 2nd infusion, i have been worse than ever these last few weeks. I just hope to God it works this time. Hope you are starting to feel better lynn and hope you are still well bsk. Is it Friday you come to Glasgow. xx
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Date: 20.06.2012
From: bss
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Subject: Re: new thread for bsk & lynn
Hi Rhona, glad you have got some additional steroids. Hopefully you will feel more comfortable soon. I'm doing ok, knee a bit bad today but I did a lot of walking (for me) on Monday. Up to Glasgow tomorrow. Looks like rain for the whole time I'm there. What else is new? lol! Hope you are ok Lynn.
xx
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Date: 20.06.2012
From: rhona
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Subject: Re: new thread for bsk & lynn
Hi bsk, i think rain is forecast for tomorrow but hopefully it will clear up for the weekend, if not you can head to the Buchanan Galleries or the St. Enoch Centre for some retail therapy. Have a good time. xx
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Date: 20.06.2012
From: bsk
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Subject: Re: new thread for bsk & lynn
Buchanan Galleries already on the agenda! Planning on visiting Kelvingrove and maybe Museum of Modern art too, plus spending time with my nieces. Think it will be a busy weekend as long as my joints hold up! Looking forward to the break. Probably won't post til next week so good luck with the infusion on Friday. I really hope things start working for you soon.
xxx
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Date: 20.06.2012
From: rhona
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Subject: Re: new thread for bsk & lynn
Thanks bsk, Enjoy! Just don't overdo it, take plenty of coffee breaks. xx
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Date: 21.06.2012
From: bsk
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Subject: Re: new thread for bsk & lynn
Thanks very much! take care xx
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Date: 21.06.2012
From: Lynnr
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Subject: Re: new thread for bsk & lynn
Hi ladies rhona I'm sorry to hear you have been getting more steroids it's not ideal but as u know they are needed I hope the infusion helps soon u have been suffering a lot lately, bsk I hope you enjoy your trip to Glasgow hopefully the weather will brighten up for you, I have been feeling really sore and there is still not script for me and now I have a urine infection I see my rhumy nurse tomorow and will hopefully get some good news maybe about the humira I will try anything at the moment I have a wedding on sat so it will be nice to dress up I just hope I can get my heels on lol Take care ladies x
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Date: 21.06.2012
From: rhona
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Subject: Re: new thread for bsk & lynn
Thanks Lynn, I feel so much better today but that is after the two steroids, i managed to get to the hair dressers and get some shopping without taking my crutch, but it won't last. I hope the rituximab does work and soon. Hope you get some good news from the nurse tomorrow. Enjoy the wedding, hope it dries up for it. take care xx
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Date: 22.06.2012
From: Lynnr
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Subject: Re: new thread for bsk & lynn
Thanks rhona I had a better meeting today at the rhumy he saw my swelling and has decided to go ahead with the humira he says it works best with methotrexate so I have to build up starting with 5 mg then up to 10 mg if I start to get the sore throat I've to stop taking them and stick with humira on its on he says it can work quite well with psoriatic arthritis so fingers crossed got a urine infection so started antibiotic so I am going to wait until after we come back from holiday and start them both I still have not got the drugs from the pain clinic so I will probably leave them till after the hols too the drugs make me feel quite sick and I lose my appetitie and I'm so tired on them so I don't want to feel like that on holiday I am used to the pain and hopefully the odd glass of wine will take the edge of it. Take care hope your feeling better today
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Date: 22.06.2012
From: rhona
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Subject: Re: new thread for bsk & lynn
Glad to hear that you are at last getting somewhere. Probably sensible waiting til you get back your holiday, as long as pain not too bad. I got my 2nd infusion today so that's me had the course and if it works it will be approx 6 months before i get more. If it doesn't work they mentioned another one. They said that they can't say which drugs will help, as everyone is different and we all respond to different things. I hope the Humira is the one for you, take care and speak soon. xx
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Date: 26.06.2012
From: bsk
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Subject: Re: new thread for bsk & lynn
Hi Girls, how are you doing? Hope the Humira works for you Lynn and am glad you are moving forward with treatment.
Same to you Rhona. How was the infusion? Had a lovely weekend away, though it was rather wet, but have come back with a sore throat and threatening chest infection. Also, had a skin tag frozen off today as it was bleeding. Nice day! Am going to bed soon to see if I can knock this infection on the head so maybe chat tomorrow. xx
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Date: 26.06.2012
From: Lynnr
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Subject: Re: new thread for bsk & lynn
Hi bsk glad you had a nice time away shame about the weather, I've not started my humira yet hopefully within the next 2 weeks I'm still feeling really sore but we are going to Scarborough on sat so don't want to start taking my methotrexate till I'm home I'll just need to try and suffer hope you infection doesn't come to anything that's all you need.
Rhona how's things r you feeling any better?
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Date: 26.06.2012
From: rhona
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Subject: Re: new thread for bsk & lynn
Hi Girls, Glad you enjoyed your weekend bsk, sorry to hear you a have sore throat, perhaps a good rest and some hot lemon will help. Hope you have a good holiday Lynn and are not too sore when you are away. The infusion went fine although i woke up during the night with my eye burning but it passed by morning, dont know if it was anything to do with the infusion or not. I am still waiting on it working though. There was another lady in getting it when i was in and it was her 2nd one as well and she said she was starting to feel better, so hope that doesnt mean it's not going to work for me as i don't feel better and still have the steroids in my system. take care xx
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Date: 26.06.2012
From: bsk
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Subject: Re: new thread for bsk & lynn
I sincerely hope that is not the case Rhona. It could just be taking longer to kick in for you, don't give up hope yet. Hi Lynn, Scarborough sounds fun, I've always wanted to go there. Fingers crossed the weather holds for you. It makes sense of hold off on the mtx til you get back. I'm trying to decide whether to start antibiotics. My throat feels worse and my trachea is sore and I can tell it's infected. The sooner I take the antibs the quicker I will get better but don't want to admit I am ill. Nurse said one more infection and I'm off the Ebrel, What do you both advise? xx
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Date: 26.06.2012
From: rhona
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Subject: Re: new thread for bsk & lynn
Thanks bsk. I don't know what to suggest regarding the antibiotics. If you feel that there is an infection there then you might be better starting them sooner rather than later. I can understand you not wanting to come off the enbrel but hopefully that won't be necessary. If you have a hot drink and a good sleep perhaps you will feel better in the morning, if you think you could wait til then to see how you feel before starting them, it might have been the change of weather here that's contributed to it. take care. xx
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Date: 27.06.2012
From: bsk
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Subject: Re: new thread for bsk & lynn
Thanks Rhona. Time has decided for me, woke up with very painful trachea and obvious infection so started anti bs this morning. Why I don't trust my own judgement I will never know! So, a day in bed or in front of the tennis for me. Hopefully they will kick in soon. Praise be to the consultant who said I should keep a supply of antibiotics at home. So much easier than having to schlepp to the doctor's and plead with them to give me some! Hope you feeling ok today.
xx
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Date: 27.06.2012
From: rhona
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Subject: Re: new thread for bsk & lynn
Hi bsk, It is good that you had them on hand and hopefully you will feel better soon. I'm feeling ok this morning (not any worse anyway) hands still sore but feel a bit better. Still raining here but what's new. Have a day pampering yourself, plenty rest etc. take care. xx
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Date: 27.06.2012
From: Lynnr
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Subject: Re: new thread for bsk & lynn
His ladies rhona I really do hope this drug works for you and fingers crossed you maybe Just need a little bit more time and bsk what a shame you have had to go back on to antibiotics will they stop the enbrel?. I hope not we really are not having much luck with these biologics I hope humira works for me bsk did you say you have already been on that? Take care xx
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Date: 27.06.2012
From: marlene
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Subject: Re: new thread for bsk & lynn
Hi Ladies, just been reading your posts. I hope you all feel well soon. Bless you. I read your posts most days and love the friendship and support you all have. Take care sending best wishes xxx
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Date: 27.06.2012
From: rhona
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Subject: Re: new thread for bsk & lynn
Thanks Lynn & Marlene. It really does make a difference having people that understand what you are going through, i would be lost without this site now. I hope you are keeping well Marlene, we just have to get on with it i suppose. take care xx
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Date: 27.06.2012
From: Lynnr
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Subject: Re: new thread for bsk & lynn
Thanks Marlene x rhona I feel the same I would be so lost as you say at least here people understandxx
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Date: 28.06.2012
From: bsk
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Subject: Re: new thread for bsk & lynn
thanks all of you, it does help to chat to people who know what we are going through. I rang my gp last night who said I was right to take anti bs and to stop enbrel, She wants a sample to see if it is bacterial or not. Better for me if it isn't as consultant is less likely to stop the enbrel. Funnily enough, although my throat is still very sore and I feel pretty rough, am not coughing up such mucky stuff (sorry to be so graphic) seems a bit early for anti bs to have kicked in so maybe viral. So prob shouldn't be taking anti bs. However, have a history of secondary chest infections. Argh! What to do....? It's really hard, feel damned if I do and damned if I don't. Another day of tennis for me then :) Rhona, am rooting for you that the infusion works. Lynn, no, I haven't tried humira. Marlene,how are you doing?
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Date: 28.06.2012
From: rhona
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Subject: Re: new thread for bsk & lynn
Hi bsk, It is a difficult one, on the one hand you want to stop any infection from getting too bad and on the other you don't want to be taking antibiotics unless you need them. Hopefully you won't have to stop the enbrel. Enjoy your holiday Lynn, i hope the sun shines for you. take care xx
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Date: 29.06.2012
From: bsk
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Subject: Re: new thread for bsk & lynn
Good morning! Am sitting in bed still feeling rough with infection. I can feel my joints seizing up after just a week off the enbrel, which must mean it is working for me! How are you doing girls? (Is Lynn away?)
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Date: 29.06.2012
From: rhona
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Subject: Re: new thread for bsk & lynn
Oh that's not so good bsk, i hope it clears up quickly and then you can get back on the enbrel. Weather here s awful so bed doesn't sound too bad, lol. Lynn goes away this weekend, not sure if she away yet. I'm ok, although my hands are quite stiff this morning, i'm not sure if the rituximab is working yet or not, it's hard to tell as i got the two steroid injections last week. i have felt a bit better but that is maybe down to the jags, the next couple of weeks should tell. Take care of yourself and hope you feel better soon. xx
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Date: 29.06.2012
From: bsk
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Subject: Re: new thread for bsk & lynn
Thanks Rhona. Hopefully the steroid injections will cover you until the rituximab starts to work. The steroid injections should last about a month, six weeks or so in my case. I here the weather has been really bad up north. Nothing like that down here, it was 28 yesterday and sunny today, though windy.
Just glad I didn't choose this weekend to go to Glasgow!
take care xx
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Date: 29.06.2012
From: Lynnr
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Subject: Re: new thread for bsk & lynn
Hi ladies I'm not away yet leaving 1 st thing in morning it's rained here none stop so I am hoping in Scarborough it's much better and we see a bit of sun. Take care I hope you both feel better soon xx
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Date: 29.06.2012
From: bsk
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Subject: Re: new thread for bsk & lynn
Have a good trip Lynn. xx
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Date: 02.07.2012
From: rhona
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Subject: Re: new thread for bsk & lynn
Hi bsk, How are you today? I hope you are getting over your infection. Have you to start back on the enbrel when you've finished the antibiotics? I'm ok, although i was very sore again yesterday, i feel a bit better today though, i hope my jags are not wearing off already. The weather here is ridiculous for this time of year, it's been non stop rain. I think i should move to London lol. Take care and get better soon. xx
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Date: 02.07.2012
From: bsk
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Subject: Re: new thread for bsk & lynn
Not much better in London Rhona! I'm under a duvet on the sofa and it's raining outside. It's July!! Still not well. Felt good on Saturday so probably did too much. It's really hard to pace myself as I want to catch up on things then I overdo it. Must learn! Sorry to hear you are still in pain. I don't suppose the weather helps much. Are you watching the tennis?
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Date: 02.07.2012
From: rhona
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Subject: Re: new thread for bsk & lynn
I do the same bsk, the minute i feel a bit better i overdo it then usually suffer the next day. I hope it's not too long until you are back to normal. I've been watching a bit of the tennis. I would like to see Andy Murray winning.
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Date: 02.07.2012
From: bsk
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Subject: Re: new thread for bsk & lynn
Thanks, feel slightly better this evening. Yes, I would like to see Murray win too. It's about time he won a grand slam!
take care
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Date: 03.07.2012
From: Yasmin
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Subject: Re: new thread for bsk & lynn
Hi bsk:), You sound so run down...Everyones been so quite on the site last few days, I was wondering what was happening with everyone?...Are you suffering from a chest infection...Best thing to do these days is hide under the duvet (if you can:)with the weather as its been lately... I pray you get better soon...xox
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Date: 03.07.2012
From: bsk
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Subject: Re: new thread for bsk & lynn
Thank you Yasmin. Am on the mend now though the weather, as you say, doesn't help. would love a few moments in the sun.
Hope you are well.
x
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Date: 03.07.2012
From: marlene
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Subject: Re: new thread for bsk & lynn
Hi all bsk, I need the sun deperate as I am so low on vitamin D. My GP has been flodding me one day a week with a capsule of Vit D and 2 calcichew-D3 a day. It just doesn't seem to be helping too much, so I need sun. LOL what else can I do???
So glad to hear you are on the mend, myself hubby daughter and son had chest infections three weeks ago after two lots of anti-biotics i'm still coughing. Asthma has been playing up as well. Might as well have it all to-gether rather than one at a time. OA through the roof.
On the news seems they are making headway with OA but not to hold our breath 5-10yrs before any help. It is good to hear that research is getting somewhere.
Take Care sorry to but in on your thread ladies.Love to all xx
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Date: 04.07.2012
From: bsk
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Subject: Re: new thread for bsk & lynn
You're not butting in at all Marlene, nice to see you on here. I think there have been a lot of chest infections going around. Even my dentist and his assistant were coughing yesterday! Good thing they wear masks. Yes, I read about the OA advances. I do wish my mother was alive to hear the news as she suffered so badly with it. I don't have very much at this point, just a dodgy thumb joint, which is bad enough. The rest is RA unfortunately, though they are making headway with that too. Fingers crossed for us all.
take care.
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Date: 08.07.2012
From: Lynnr
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Subject: Re: new thread for bsk & lynn
Hi ladies getting away was nice but I was really sore so I've just started my gabapentin I didn't want to take them while I was away so far so good I'm getting really really sore in mornings it's almost unbearable my humira has not been delivered yet I'm going to start my methotrexate tonight 5 mg this week 7.5 mg next then 10 mg the third week I doubt it will make much difference but you never know third time lucky on the mxt u never know just wish they would phone me about my humira, how have you all been getting on?
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Date: 08.07.2012
From: rhona
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Subject: Re: new thread for bsk & lynn
Hi Lynn, Good to hear from you. It's always nice to get a break away. Hope you had better weather than we had here. I'm getting sick looking at all this rain. I hope you get on well with the Mtx this time and you've not got too long to wait for the humira. I'm not too bad at the moment although my hands are still stiff and sore, i have a few fingers that i cant bend at all and i think i have pulled a muscle in my back. I'm not sure if the rituximab is helping yet as i was given 2 steroids less than 3 weeks ago. I should know soon if they are kicking in or not. Hope you are feeling better bsk, disappointing about Andy Murray but he did well, perhaps next year he will do it. xx
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Date: 08.07.2012
From: marlene
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Subject: Re: new thread for bsk & lynn
BSK, I second that fingers crossed for us all.
Hope you are all ok. Yep shame about Andy Murray but the boy done well as they say. Heres to next year.
Take Care xx
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Date: 09.07.2012
From: bss
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Subject: Re: new thread for bsk & lynn
Hi Girls! yes, disappointing result yesterday but he played well, Federer just too experienced me thinks! Glad you had a good break Lynn, though sorry to hear you are still waiting for the humira. I found it took a while for the drug company to deliver and a phone call to my nurse helped speed it along. Aren't we all so fed up with this rain Rhona? I don't know if it makes things worse but it doesn't half affect my mood. I just long for a few minutes in the sun. On a more positive note, think I have finally got over infection and due to start back on enbrel on wed, same day I see my constant. Hoping he will allow me to continue on it. I'm going to make a good case for it anyway. Marlene, how are you?
xx
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Date: 09.07.2012
From: Lynnr
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Subject: Re: new thread for bsk & lynn
Hi ladies well I took my gabapentin last night and I felt quite out of it so I'm hoping that will improve because it's not a feeling I like and I can't afford to be drowsy all time as I have kids to look after but my hubby is still off this week so it's nice to give some of the work load to him lol x bsk I'm glad ur getting back on the enbrel I hope no more infections for a while and rhona i do hope you start to get some improvements soon.
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Date: 09.07.2012
From: rhona
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Subject: Re: new thread for bsk & lynn
Hi Girls, Perhaps it just takes a wee while for your body to get used to them Lynn, although if they continue to do that then i would be speaking to them to get something different. Glad to hear you are over the infection bsk. I wish there was someone i could complain to about this weather lol, another day of heavy rain here grrrr. Hope you are feeling better Marlene, i know you have been suffering too, think some sunshine would help us all. take care xx
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Date: 10.07.2012
From: bsk
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Subject: Re: new thread for bsk & lynn
Thanks Rhona.
How are you doing today?
xx
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Date: 10.07.2012
From: rhona
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Subject: Re: new thread for bsk & lynn
Much the same bsk, not too bad, i feel the next couple of weeks will be the test. hope you keeping well x
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Date: 10.07.2012
From: bsk
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Subject: Re: new thread for bsk & lynn
Glad to hear you aren't too bad. I'm ok thanks. Seeing rheumy tomorrow so will see what he says about enbrel. Am sure he will want me to continue on it lol! Tried to do a bit of gardening in-between rain showers today and got soaked to the skin. I'm determined to have a bit of a summer! Have you managed to get out at all?
xx
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Date: 10.07.2012
From: rhona
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Subject: Re: new thread for bsk & lynn
It has been so wet here, i didn't go out at all today. I had a chiropodist at house today to get my toe nails cut lol. It was too much of a struggle as i can't bend my index finger. I also got my shopping delivered from asda today. My daughter is due back from Spain tonight as she was over visiting her sister, so hopefully get out a bit more. Hope all goes well at the hospital tomorrow. xx
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Date: 10.07.2012
From: marlene
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Subject: Re: new thread for bsk & lynn
Hi everyone, just a quick post hope you are all keeping well. This rain is tough on us all and I agree it somewhat dampens my mood excuse the pun.
I am avoiding going out I am fed up with getting caught in the downpours. Summer what summer.
My joints and muscles are driving me to distraction. But I am coping thank goodness (just about)
BSK hope all goes well tomorrow.
Rhona thanks for caring.
Lynn glad you enjoyed your break
Yasmin little ray of sunshine. Take Care XXXXXX
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Date: 11.07.2012
From: Yasmin
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Subject: Re: new thread for bsk & lynn
Marlene:), As much as I love rain, this dreary, dull weather has dampened my spirits alittle too...the last few days been feeling unwell, with sore throat, heavy head and aching joints...I have kinda overdone the running around and my bodies kinda paying the price now;) Trying to get as much rest in as possible...Just popped in to see how everyone doing...Miss you all when I'm not on...Lets hope the sun will be making its entrance very soon...we can all do with warming energy at mo... Until we meet again, look after yourself Marlene...big hugs!...xox
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Date: 11.07.2012
From: Lynnr
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Subject: Re: new thread for bsk & lynn
Hi ladies I'm getting my humira delivered tomorow so as soon as its here I'll be injecting it lol getting desperate and crossing my fingers and toes that I don't get the infections on it like enbrel!!! Bsk how did you get on with the rhumy? Have you to continue with the enbrel? Fingers crossed x This weather is so depressing I don't think it has been off here for and period longer than 10 mins at a time!!! Not good when I have 3 young ones on school hols and can't get out to play :( Xx
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Date: 11.07.2012
From: marlene
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Subject: Re: new thread for bsk & lynn
Maybe we can have christmas dinner in the garden. A big BBQ that would be novel. LOL
Hope it gives up soon so all the young ones can enjoy school break.
Take Care xx
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Date: 12.07.2012
From: bsk
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Subject: Re: new thread for bsk & lynn
Hi Girls Lynn, glad you have finally got your humira! Hurrah! I sincerely hope it works for you. Rheumy appt went well. He agreed that I should stay on the enbrel and review in six months. My view is that I will get sick on any of the anti tnfs so may as well stay on one that seems to be helping. He thought I was doing much better. So do I, until I undid all the good work by walking way too much today. Long story but was with my dad and we got lost! Am sitting with my legs up now. Had a few sunny moments today, until the rain came down again. I've resigned myself to having no summer and intend to adjust my expectations! Had the heating on a couple of times this week. How are you all doing today? How's the throat Yasmin?
take care xx
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Date: 12.07.2012
From: Lynnr
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Subject: Re: new thread for bsk & lynn
Hi bsk so glad they are going to keep you on enbrel that's great and hope you don't get too many infections on it, my humira arrived and 5 mins after I had injected it and boy did it hurt wow!!!!! I really wasn't expecting it to because i had tried enbrel so thought it would be the same but nope I said a few words I would not like to repeat on here lol then a big lump came up on my leg but tonight it's calmed down I have had a really painful knee the last few days so I'm on couch resting it, we had a lovely sunny day here today with no rain although it's looking dull now. Take care ladies xx
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Date: 12.07.2012
From: bsk
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Subject: Re: new thread for bsk & lynn
Will keep my fingers crossed for you Lynn. Is it an epi pen style of injection? I had that with enbrel to begin with and found it very painful.
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Date: 12.07.2012
From: Lynnr
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Subject: Re: new thread for bsk & lynn
Yeah bsk it is but it's different than the enbrel pen and much sorer lol maybe the next one won't be as sore well fingers crossed I couldn't do the other injections I hate needles and with the pens u don't need to see them if u don't want. X
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Date: 12.07.2012
From: bsk
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Subject: Re: new thread for bsk & lynn
Ouch! I thought the enbrel pen was bad enough. I'm sort of getting used to the injections now. Hated them at first.
take care xx
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Date: 14.07.2012
From: Lynnr
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Subject: Re: new thread for bsk & lynn
Yes bsk I was getting used to the enbrel and didn't even think about pressing the button but with humira I will be a nervous wreck in fact I've told my hubby he will be doing it next time, I have been on the gabapentin a week and increased them today and the last 2 days I've felt a great improvement in the mornings although I'm still stiff and in pain it's more of a dull pain from the severe pain of before so I'm hoping it will continue going like this. Hope you both are well xx
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Date: 14.07.2012
From: bsk
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Subject: Re: new thread for bsk & lynn
I'm so pleased to hear you are feeling an improvement - about time :) I'm ok, feeling pretty good today actually.
xx
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Date: 14.07.2012
From: rhona
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Subject: Re: new thread for bsk & lynn
Hi Girls, Glad to hear that you are both feeling better. I really hope the Humira works well for you Lynn. I'm not too bad, although i had terrible pains shooting through the back of my head today and yesterday, it seems to be easing off now, thank goodness. xx
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Date: 15.07.2012
From: Lynne
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Subject: Re: new thread for bsk & lynn
I am hopeful that we are all getting some improvement at the moment I am having to experience a spaced out very tired feeling but the pain is no where near as severe my hubby was very worried last night as he thought I was over sleeping and said I was very spaced out but I'm hoping that all will pass when they get into my system.
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Date: 15.07.2012
From: bsk
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Subject: Re: new thread for bsk & lynn
Just got the copy letter my consultant sends to gp and he'd written 'good luck' at the bottom of it. Sweet :) Feeling a lot better now back on enbrel and no itchy rash when I injected this morning. We do all seem to be feeling improvement, as you say Lynn. Long may it last.
xx
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Date: 17.07.2012
From: Lynnr
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Subject: Re: new thread for bsk & lynn
Aw I feel terrible today took my mxt last night and I feel so sick never felt this sick before but it's maybe the combination of all the new drugs I'm on hope it passes soon xx
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Date: 17.07.2012
From: marlene
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Subject: Re: new thread for bsk & lynn
Oh Lynnr, sorry you feel unwell, I hope it all passes as the day goes on. Chin Up Best Wishes xx
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Date: 17.07.2012
From: rhona
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Subject: Re: new thread for bsk & lynn
That's not so good Lynn, it may well be a combination of the different drugs, that's the worst of it when you are taking a few different drugs. I don't feel right either, the shooting pains in my head have stopped but my head feels so heavy and i have pains above my ear, think it's the jaw joints, and my elbow is now swollen, i don't know what to think now about the new drug. Hope you feel better soon. xx
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Date: 17.07.2012
From: bsk
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Subject: Re: new thread for bsk & lynn
oh gawd! Sorry to hear you are both feeling rough today. Lynn, mtx made me feel very sick and the enbrel sometimes. have you got an anti emetic drug - metoclopromide is good. Worth having some at home. Rhona, sorry to hear you are bad today. Hope you feel better soon.
xx
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Date: 18.07.2012
From: Lynne
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Subject: Re: new thread for bsk & lynn
Thanks guys thankfully I feel a little more human today I think it is just the new mix of drugs hopefully it will settle soon, sorry to hear your not great rhona such a shame we seem to get a few food days then back to sore again I felt much stiffer getting up this morning!!!! Take care
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Date: 19.07.2012
From: bsk
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Subject: Re: new thread for bsk & lynn
Good to hear Lynn. Long may it last. I'm feeling a bit worse today, this after telling my rheumy nurse I feel great! Done a lot today probably why. How are you rhona?
xx
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Date: 19.07.2012
From: rhona
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Subject: Re: new thread for bsk & lynn
Hi Girls, that's good that you feel a bit better Lynn. Hope after you've rested you will feel better bsk, just take it easy today. I still don't feel too good, my jaw is sore and my head feels so heavy and my hands are still swollen, my legs do feel a bit better, to be honest i expected more from the rituximab and just hope this isn't as good as it gets, sorry for the rant. xx
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Date: 19.07.2012
From: marlene
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Subject: Re: new thread for bsk & lynn
Hi Guys, just to say chin up girls thinking of you all.
Sorry you don't feel good Rhona
Lynne glad to hear you feel better to-day.
bsk sorry you are paying the price for overdoing it.I know the feeling.
Take Care all xx
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Date: 19.07.2012
From: bsk
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Subject: Re: new thread for bsk & lynn
Thanks Marlene, how are you doing yourself? You rant away whenever you like Rhona! We understand. I hope, as well, this isn't as good as it gets for you. How long before it is supposed to work fully? Keep your chin up and we will help you along. Take care. xx
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Date: 19.07.2012
From: rhona
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Subject: Re: new thread for bsk & lynn
Thanks girls, i'm not too sure bsk how long it takes to work, when i asked at the hospital they would't say. I have read about 6 weeks or so, it will be 6 wks tomorrow since the 2nd infusion, i suppose my mobility is a bit better but i had hoped for more, i hate feeling my head this way and i start worrying about side effects from the drug.
I hope you are feeling better Marlene, when do you go on holiday? some sunshine would help us all, pity we couldn't get some on prescription. Take care xx
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Date: 19.07.2012
From: Lynnr
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Subject: Re: new thread for bsk & lynn
Hi ladies rhona I'm really sorry ur not feeling great maybe you could phone my rhumy nurse just to tell her how ur feeling and with ur head and not feeling great it wouldn't hurt, bsk and Marlene thanks its nice to know ppl care and know how we all struggle daily, the school holidays are busy for me with 3 young kids but they help me out if I'm feeling down bsk we never learn from doing too much then paying the price the next day. Take care
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Date: 20.07.2012
From: r
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Subject: Re: new thread for bsk & lynn
Thanks Lynn, i was at the nurse just to get blood taken this morning, i had her look in my ear just to make sure that the pain wasn't coming from it but she said it was clear, so look like it is the jaw joint, i was feeling a bit dizzy but not so bad today, i will wait to see if it settles over the weekend, if no better i will call hospital on monday i have pain in my neck that i didn't have before, when i turn it from side to side i can hear crunching noises, think i will have a glass of wine later and see if that helps lol. xx
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Date: 20.07.2012
From: bsk
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Subject: Re: new thread for bsk & lynn
Hi Girls,
How are you all today? Rhona, I had earache for over a year and they couldn't find any cause for it. Since I've been on Enbrel it has disappeared so must have been arthritis related - probably in the jaw. Regarding your neck, crunching is usually cartilage, I think. Have you been tensing up you neck and shoulders because of pain etc? The reason I ask is that I also had years of pain in my neck where I could hardly turn my head. Transpires it was general tension, particularly in my shoulders and neck area. Not dismissing what you are saying or that it is not arthritis related but it can be extremely painful and debilitating. Stretches and pacing myself sorted it out nicely. Glass of wine should help too lol! Marlene, how are you doing? Hopefully not struggling so much. I am ok, fingers crossed. Aches and pains and a bit of a chesty cough but nothing I can't handle lol! Hoping to get some sun soon. Been raining heavily here but bright sunshine in between so looks more promising. Always helps the mood! take care xx Lynn, 3 kids to manage - tough! Hopefully the weather will be better next week and you will be able to send them outside to play!
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Date: 20.07.2012
From: rhona
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Subject: Re: new thread for bsk & lynn
Thanks for that bsk, I do feel tense, so what you say makes a lot of sense, i will try and stretch a bit more, funny when i do stretch it actually feels quite good and i do feel the shoulder and neck area is where a lot of it stems from. I also removed one of my pillows and now using a nice soft feather one as think having two was hurting my neck. So once again i am very grateful for your sensible advice. I think the forecast for next week is better, lets hope so as i'm beginning to forget what sun is. I'm so pleased that the enbrel is helping you, it really had to help one of us lol. Make sure you look after yourself and do what you can to chase that cough away. Perhaps a hot toddy would help (not sure if that's how you spell it) whisky and hot lemonade i think. Have nice weekend and hope you all stay well. xx
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Date: 20.07.2012
From: bsk
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Subject: Re: new thread for bsk & lynn
Thanks Rhona. Hot toddies are always a good idea! The theory behind stretching is that you should stretch each muscle group in your body equally. I will try and find some info on the web about it if you like. The theory behind pacing is that you should move your position every 20 mins, whatever you are doing, get up if you are watching tv or stretching if you are at the computer etc. It takes a while to get into it but makes a massive difference in the long term.
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Date: 20.07.2012
From: rhona
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Subject: Re: new thread for bsk & lynn
I will definitely make a point of stretching and moving around more. I do tend to sit too long on my laptop and watching TV. As they say, if you don't use it you lose it, so fitter days ahead. Take care and thanks again bsk. xx
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Date: 20.07.2012
From: Lynnr
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Subject: Re: new thread for bsk & lynn
His ladies I have a lot of problems with my TMJ joint so get a lot of ear infections pain etc it's not nice but just another part of this disease..... Bsk the 3 kids are hard work but it is them that gets me out of bed in the morning and I'm so blessed to have them. The weather has been a bit better not brilliant sunshine but not pouring rain, think its to be better over the weekend so fingers crossed. Enjoy your weekends x
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Date: 20.07.2012
From: bsk
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Subject: Re: new thread for bsk & lynn
Thanks Lynn, you are very lucky to have children and I'm sure they keep you going. I guess you have to keep going!
You have a lovely weekend too.
xx
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Date: 20.07.2012
From: marlene
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Subject: Re: new thread for bsk & lynn
bsk, I wish I could say I was feeling better this pain is a nightmare, but do you know what, it seems like I am getting so use to it I carry on regardless. I like you am not going to let it beat me.
The sun was shining for a while so I went with hubby to buy some more tropical fish. By the way this is my latest venture. I have always wanted a fish tank but could never afford one leave alone the time to take care of it. Three kids a job and hubby and the home to take care of.
I have only had it a month and I am just enjoying the challenge.I am retired now so this is a bit of me time.
Well take care everyone and I am praying for the sun this week-end. xxx
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Date: 20.07.2012
From: bsk
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Subject: Re: new thread for bsk & lynn
Hi Marlene, sorry you are not feeling good. Fish are supposed to be very relaxing to watch so sounds like a good hobby. Might take your mind off things. What kind have fish do you have? I've got a sweet cat - well, she is mostly sweet but has a feisty spirit if she wants. A bit like me! Hope you get some sun this weekend. Where in the country do you live?
take care xx
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Date: 22.07.2012
From: marlene
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Subject: Re: new thread for bsk & lynn
Hi I have guppies very pretty and Tetras and Tiger something or others lol. Just a novice at the mo.Oh yes and a couple of plecs for helping to keep the tank clean.
I also have a German Shepherd unfortunately I am unable to walk her any more that has now become my hubbys job. I miss the walks, it certainly used to help keep the weight off. She is so lovely seven yrs old going on nine months. She has never left the puppy stage behind. She has very bad IBS and is on a strict diet and has to have enzines on her food. Bless her!! She is my third shepherd. I had a cat along with my first shepherd they had a love hate relationship LOL.
The cat was the boss, although when she passed away the dog pined so badly hence german shepherd no2.
I live on the outskirts of London. I am waiting for my husband to retire then hopefully we are going to try to move out in the country.
I have been in the garden most of the day, pottering and I am paying for it now, but it was worth it. I love gardening, that was my me time when the kids were young.
My husband did a BBQ, he loves the barbie but not the cooker!!!
Now he is doing a 12 hour shift, poor thing.
Take Care bsk nice to have a chat.
Just thought I would mention the other half has a pond with water fall his pride and Joy. He has a mixture of fish, but the Heron had the biggest Carp for breakfast last year. So now the pond is netted.I hope he enjoyed it,can't repeat what my hubby called it. I tried to make light and said how do you know thats his name LOL. I am signing off now. Have a Lovely day tommorow in the sun.
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Date: 22.07.2012
From: bsk
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Subject: Re: new thread for bsk & lynn
Cats are always the boss, that's why I like them. My cat is def my boss lol! I'm in London too but further in than you I think. I love the city as there is so much going on that I don't think I could move to the country, though I was bought up there. I've enjoyed the lovely weather today and hope you have too.
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Date: 22.07.2012
From: marlene
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Subject: Re: new thread for bsk & lynn
I have been in all day with a thumping head. I woke with it and still have it now. But it was nice to have all the windows open and the door open all day for the dog.
Hope its nice tommorow. Take Care and enjoy this weather. xx
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Date: 23.07.2012
From: rhona
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Subject: Re: new thread for bsk & lynn
You are lucky to be having the nice weather Marlene, it is raining as usual here. Headaches are not nice, my head is a still a bit strange and heavy. take care x
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Date: 23.07.2012
From: marlene
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Subject: Re: new thread for bsk & lynn
Hi Rhona, we have had a glorious day to-day, hope some came your way.
To-day my head feels numb, but at least the headache has gone.
Hope your head feels better soon, I can't cope with all the arthur pain and a bad head to go with it.
To-day my neck got fixed, I did panic a bit,after gently moving my head around a big crack and my mum was horrified as she heard it the other side of the room.It did hurt but at least it loosened my neck off. What we have to put up with. LOL not.
Take Care xxx
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Date: 24.07.2012
From: rhona
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Subject: Re: new thread for bsk & lynn
Hi Marlene, Oh that does sound sore but good that it feels better now. I still feel a bit dizzy and nauseous, i never got headaches until i got the new drug (rituximab) i hope it passes soon. The sun didn't head our way at all today, it's poured down all day and think tomorrow has to be the same. I feel sorry for all the kids on school holiday just now, although i think wednesday has to be better. Hope you are doing well on the humira lynn and hope you are well bsk, i see it's to be 30 degrees in london. wish i was there. xx
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Date: 24.07.2012
From: marlene
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Subject: Re: new thread for bsk & lynn
Hi Rhona, Lets hope you get the sun soon.
I am sure the side effects will pass, fingers crossed.
Take care. sending best wishes to every one.xxx
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Date: 27.07.2012
From: bsk
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Subject: Re: new thread for bsk & lynn
Hi Girls,just back from a few days break in the west country, visiting my father. Fab weather (sorry rhona!)and very nice time was had. Paddled in the sea yesterday, glorious!wrecked my wrist though, lifting case onto rack as there was nowhere else to put it - so writing this with a wrist splint on and full of pain killers. How are you all doing?
xx
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Date: 27.07.2012
From: rhona
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Subject: Re: new thread for bsk & lynn
Hi bsk, That sounds lovely, you can't beat a paddle in the sea, the salt water would help you. Pity you lifted the case, there is no way i could even attempt that, hope it eases soon. I'm not too bad, head feels better and moving a little better but i am quite disappointed as i thought i would have been better, i am still walking very slowly and cant go too far and my hands still very swollen but at least i can now get off a chair provided it's not too low. I would like to be the way i was last year when my mobility was normal. I should be grateful i suppose. Take care xx
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Date: 27.07.2012
From: bsk
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Subject: Re: new thread for bsk & lynn
Hi Rhona, that is so disappointing. Maybe it is taking longer to kick in for you as you seem to have some improvement. Do you wear wrist splints at night for your hands? I find they help a lot. I've had a bit of a setback as am on antibiotics again as have throat infection. Felt a bit rough this week but didn't think much of it but was worse this morning so saw the doc. My father is also ill so one of us gave it too the other I think. It means another delay in taking enbrel. got to ring my nurse but am putting it off as she might tell me to stop altogether. Got a couple of friends coming over later to watch the opening ceremony and don't know whether to put them off or not. hmmm!
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Date: 27.07.2012
From: rhona
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Subject: Re: new thread for bsk & lynn
I hope it is just taking a bit longer bsk. I do wear the splints when my wrists are sore. I sometimes kept them on in bed and they did seem to help. I heard one of the nurses telling someone not to wear them to bed though. That's a shame you have another throat infection, it seems to happen when you have overdone things. I hope it passes quickly, just take things easy this weekend. xx
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Date: 29.07.2012
From: bsk
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Subject: Re: new thread for bsk & lynn
Hi Rhona, I was told only to wear them at night! The explanation my consultant told me is that, apparently, we move our hands a lot at night so it can help to protect them. Also v important to prevent joint damage as you prob know! Did you watch the opening ceremony on Friday? I loved it! what did you think?
xx
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Date: 29.07.2012
From: rhona
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Subject: Re: new thread for bsk & lynn
Hi bsk, I felt that it helped wearing them at night but when i heard her telling someone not to i asked her and she said it's to do with the circulation, i think i might just start wearing them again. I suppose if it's not too right then there shouldn't be a problem. We had visitors on Friday night so i didn't get watching the opening ceremony which i now regret, i just wish i would have recorded it. Hope you are feeling better now and got over your infection. take care xx
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Date: 29.07.2012
From: bsk
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Subject: Re: new thread for bsk & lynn
I would check with your rheumy about splints. You can watch the whole ceremony online on the BBC 2012 page. It's really worth it as it was fabulous. I am feeling a bit better this evening though still have a slight temperature. Been watching the gymnastics most of the day! take care xx
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Date: 29.07.2012
From: rhona
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Subject: Re: new thread for bsk & lynn
I had been trying to get it online and coudn't find it bsk, so thanks for that, i have just watched the bit with the Queen and the helicopter...excellent. will watch the rest later. When i think of it, i wore the splints without any problems, only once i wore an elasticated strap on my wrist to bed and my hand was badly swollen in the morning, and the splints are different so sure they be ok. Hope you better tomorrow xx
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Date: 29.07.2012
From: bsk
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Subject: Re: new thread for bsk & lynn
Pleased I could help! Still amazed the Queen agreed to act in a film! Hope you enjoy the rest of it. I find wearing splints at night reduce my pain levels quite significantly. I was also told if I had done something like gardening to wear the splints afterwards to give your wrists a rest. Can't live without mine.
take care
xx
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Date: 30.07.2012
From: marlene
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Subject: Re: new thread for bsk & lynn
bsk can I ask you where did you get your splints for your wrists? I have some soft sport splints, they do help but I could do with some extra support. Take care xx
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Date: 31.07.2012
From: bsk
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Subject: Re: new thread for bsk & lynn
I get them from rheumy dept at hospital but they are widely available buy - but I would check with your rheumy to make sure you get the right ones.
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Date: 31.07.2012
From: marlene
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Subject: Re: new thread for bsk & lynn
OK thanks a lot. I will get advice first as having OA not sure if they would be helpful or not. Don't want to be causing myself more harm than good.
I hope you are all well.
Not too good to-day loads of joint pains all over. Well never mind, whats new?
Take Care xx
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Date: 31.07.2012
From: bsk
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Subject: Re: new thread for bsk & lynn
I'm not sure about using them for OA either but is worth asking.
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Date: 01.08.2012
From: rhona
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Subject: Re: new thread for bsk & lynn
Hi Girls, How are you Lynn? you haven't been on in a wee while, i hope it's just because you are busy with the kids off school, this weather has been dreadful for them. I have a park across from my house and normally at this time of year it would be busy with children playing but hardly a kid to be seen. Hope you have got over your infection bsk and are not overdoing it. Hope your joints are a bit better Marlene. xx
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Date: 01.08.2012
From: marlene
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Subject: Re: new thread for bsk & lynn
Hi Rhona, thank goodness my hand is a lot better to-day but my back is its usual painful self.LOL
Hope you are good!!
Take Care xx
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Date: 02.08.2012
From: bsk
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Subject: Re: new thread for bsk & lynn
Hi Girls, how are you doing? You don't say how things are for you Rhona. Hope you are ok. As usual, I overdid it yesterday, complicated reasons but ended up walking too much and today am in pain with swollen knee. It's so difficult, I want to do stuff but always suffer when I do. \Glad your hand is better Marlene!
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Date: 02.08.2012
From: rhona
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Subject: Re: new thread for bsk & lynn
I know it is difficult bsk, when we feel a bit better we do tend to overdo things. Hopefully after a rest your knee will be ok. That's good that your hand is better today Marlene, wouldn't it be lovely to have a day completely free of pain. My knee is also swollen now and my hands are so sore, i'm beginning to give up hope with this latest biologic, i don't know why they don't seem to work for me. Take care xx
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Date: 02.08.2012
From: bsk (aka Sally)
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Subject: Re: new thread for bsk & lynn
Thanks Rhona, I am resting up this evening so think I might be ok. I am very sorry to hear you are still in a lot of pain. You must be very disappointed with your drugs. I have read that there is research going on that is trying to link the right drugs to the person to stop this kind of thing happening. I think you are very unlucky, as are others, and myself but didn't you say there was another one to try? Don't let your knee get too bad before you call your rheumy. I find this forum very supportive as most people don't really understand the ups and downs of arthritis. Keep your chin up and I am thinking of you.
xx
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Date: 02.08.2012
From: rhona
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Subject: Re: new thread for bsk & lynn
Hi Sally, it is nice to know your name, i have often wondered what it was. If you prefer i will continue to call you bsk. It would be a big help if they could find out which drugs were suited to the individual, what a difference that would make and also the money that would be saved. I also find the site very supportive, it makes me realise i am not alone and I look forward to hearing from you all. They did mention another infusion but not sure if i would have to wait a while as the rituxumab removes the b cells for at least 6 months, as far as i know the b cells are the memory cells, it is really quite interesting when you read about it. I had hoped by this time i would have managed to get a wee break away but at the moment it's looking unlikely. take care and sleep well xx
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Date: 02.08.2012
From: bsk
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Subject: Re: new thread for bsk & lynn
bsk stands for Bash Street Kid. My sister used to call me Plug, after one of the characters in the comic. I'm much better looking than Plug (who is male in any case!) You can call me what you like I just like to be anonymous! (she says,posting on the web!) You take care too. Chat later.
xx
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Date: 02.08.2012
From: rhona
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Subject: Re: new thread for bsk & lynn
That is a good one, i would never have guessed that in a million years lol, i remember reading the beano and Dennis the Menace etc and i do remember Plug, although i must admit i was a bigger fan of the "Broons" i will continue to call you bsk lol and it will make me smile when i think what it means. xx
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Date: 03.08.2012
From: bsk
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Subject: Re: new thread for bsk & lynn
Plug was dead ugly lol! Typical sisterly comment.
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Date: 03.08.2012
From: Lynnr
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Subject: Re: new thread for bsk & lynn
Hi ladies I've not been on in a bit as my step dad was killed last week in a car accident I'm stressed out to the max we have the funeral tomorow.... I will get back on soon and read how things have been with everyone take care ladies x
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Date: 03.08.2012
From: rhona
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Subject: Re: new thread for bsk & lynn
Oh Lynn I am so sorry to hear that, that is awful. I will be thinking of you. Take care of yourself. xx
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Date: 03.08.2012
From: marlene
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Subject: Re: new thread for bsk & lynn
Lynnr, bless you and all your family. Will be thinking of you tommorow.
Take Care sweetheart xx
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Date: 03.08.2012
From: bsk
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Subject: Re: new thread for bsk & lynn
Lynn, that is terrible news, I am so sorry. I willl be thinking of you tomorrow too. xx
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Date: 04.08.2012
From: Lynnr
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Subject: Re: new thread for bsk & lynn
Thanks ladies it means a lot today was difficult I'm just so drained ... X
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Date: 04.08.2012
From: marlene
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Subject: Re: new thread for bsk & lynn
Hi Lynnr, try to take a bit of a rest sweetheart. Off course you feel drained love to you all. Take Care sending hugs xxxxx
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Date: 04.08.2012
From: bsk
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Subject: Re: new thread for bsk & lynn
Hi Lynn, I feel for you going through such a difficult time. When my mother died I got a lot of comfort from being with my family. It is such a huge thing to lose someone so suddenly it is hard to comprehend and takes time. As Marlene says, try and rest as much as you can. Take care and love to you all. xx
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Date: 05.08.2012
From: rhona
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Subject: Re: new thread for bsk & lynn
Hi Lynn, I hope you are taking time to look after yourself and do try and rest as much as you can, you can't afford to let your health suffer especially when you have the kids to look after, although i bet they are bringing great comfort to you. Take care and we are all thinking of you. xx
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Date: 06.08.2012
From: Lynnr
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Subject: Re: new thread for bsk & lynn
Thanks ladies it means a lot I am getting there as you say it's takes time I had to stop taking my methotrexate last week as I had far too many units of alcohol so thought I'd better stay off it a week going back on tomorow and still getting on ok with the humira as well at the moment I am not in as much pain all time so that's a bonus, hope you are all hanging on in there take care ladies xx
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Date: 07.08.2012
From: rhona
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Subject: Re: new thread for bsk & lynn
They do say time is a great healer Lynn, hope your Mum is coping ok. So pleased to hear that you are doing well on the humira, sometimes i think we would be better throwing the mtx away and sticking to the alcohol lol. I'm not doing as well as i'd hoped but perhaps slightly better than i was. take care xx
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Date: 07.08.2012
From: bsk
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Subject: Re: new thread for bsk & lynn
Hi Lynn,
Good to hear you are doing ok under the circumstances and am glad that humira is doing something for you. Take it easy, as Rhona says. I've been off Enbrel for a couple of weeks but back on it again today. Fingers crossed I don't get another infection.
xx
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