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Date: 17.09.2012
From: bsk

Subject: new thread rhona, lynn, marlene

Thought it time to start another thread!

Rhona, sorry to hear you are still in so much pain. I wish I could suggest something to help.

Lynn, any news about diabetes tests?

Marlene, what about you? :)

Not so hot myself today. Bad joints and back seems to have gone as well. Dosed myself up this afternoon and will do the same when I go to bed. Hope enbrel kicks in soon.
xx
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Date: 18.09.2012
From: rhona

Subject: Re: new thread rhona, lynn, marlene

Hi Girls, Hope you are all feeling a bit better tonight. Hope your joints are a bit better bsk. My joints are really sore tonight, hands, wrist etc and my shin has become really painful for some reason, i have never had that before, just on my left leg. I got my blood results today and ESR and CRP still too high. I just never know what to expect next with this disease.
Hope you are ok Marlene and you too Lynn. xx
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Date: 18.09.2012
From: bsk

Subject: Re: new thread rhona, lynn, marlene

Oh Rhona, am sorry to hear that. You must be very disappointed about your bloods. Did you say you have and appt coming up with rheumy or was that just the blood tests? I hope you can get to see someone soon.

I'm ok today thanks. Really up and down all the time it seems. Just trying to take things day by day right now. Trying to lose some weight as have put on nearly a stone over the past 9 months. Cutting out sweet stuff for starters. Boring but none of my clothes fit and I'm not buying any more!

Take care. xx
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Date: 18.09.2012
From: rhona

Subject: Re: new thread rhona, lynn, marlene

Thanks bsk. yes i have an appointment next week so hoping i can try something else although i feel i am kinda running out of options.

I lost over a stone without trying but think it was all muscle that i lost, i have put a few pounds back on again i feel i have it all in the wrong places though. I have tried to cut out sweets too, i would buy the large bag of rowntree fruit gums, they were my favourite but i had to stop before i had no teeth left as i would eat the whole bag. Then again, i think we deserve a few wee treats. nite nite xx
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Date: 18.09.2012
From: marlene

Subject: Re: new thread rhona, lynn, marlene

Hi ladies, I am on the mend my elbow is less painful all the hot redness gone, just a little swelling left. My chest feels a lot better it got so bad it hurt to cough or take a deep breath. My chest bones feel less painful. My arthur pain is settling a bit as well.
I have lost 5lbs in weight and has given me a bit of get up and go to try to carry on losing fingers crossed. My apetite wasn't so good and still isn't not that it will hurt I am overweight.
Yes we deserve some nice treats now and again, but I have been overdoing it. Hope you feel better tommorrow Rhona and bsk.
Take care and sleep well xx
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Date: 18.09.2012
From: Lynnr

Subject: Re: new thread rhona, lynn, marlene

Hi ladies we r not all sounding good.... I'm the same I'm very stiff injection day is Thursday my diabetes test was clear that was a huge relief hope everyone improves I have my rhumy app end of the month
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Date: 19.09.2012
From: bsk

Subject: Re: new thread rhona, lynn, marlene

Good news about the diabetes Lynn. That is something you really don't need.

Yes, treats are good sometimes but I was having them every day lol! None of my clothes fit anymore.

take care everyone
xx
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Date: 19.09.2012
From: rhona

Subject: Re: new thread rhona, lynn, marlene

Glad to hear you are on the mend Marlene and good that your test was clear Lynn.

Good excuse to buy a new wardrobe bsk, or perhaps not, cheaper to diet lol.

Went to shop today to get my daughter a few things, she is off to London on Saturday then off to walk the Great Wall of China on Monday in aid of Marie Curie.

Take care xx
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Date: 19.09.2012
From: Lynnr

Subject: Re: new thread rhona, lynn, marlene

Aw rhona that sounds amazing what ur daughter is doing well done her great cause as well, hope you get on better at the hospital I go next frid, there must be something out there that can get the immflamation down x

Take care x
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Date: 19.09.2012
From: rhona

Subject: Re: new thread rhona, lynn, marlene

Thanks Lynn, i hope there is something to get it down. She is excited, they are camping most of the time close to little villages along the wall. x
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Date: 20.09.2012
From: Lynnr

Subject: Re: new thread rhona, lynn, marlene

Fingers crossed for you rhona x maybe humira would be good it really has helped my swelling x when is your app? Hopefully soon x

Tc x
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Date: 20.09.2012
From: rhona

Subject: Re: new thread rhona, lynn, marlene

Hi Lynn, i go on tue next week. One of the consultants told me if one anti-tnf didn't work then the others probably wouldn't either, he thought it best to try a different type that's why they gave me rituximab, so not sure what happens now, i remember they mentioned another one toxcilimab, not sure if that's the correct spelling, so perhaps they will give me that. x
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Date: 20.09.2012
From: bsk

Subject: Re: new thread rhona, lynn, marlene

I haven't heard that said before Rhona. Hopefully they will let you try another one. It's worth pushing for. I have heard that some breakthroughs are being made about targeting the right RA drug for the patient, to prevent this kind of situation happening. I don't know if the tests are in early stages but it might be worth asking consultant when you go.

Camping in China sounds great. I fear any of that sort of travel is completely out for me now. Always wanted to go to India but think I would get sick the moment I got off the plane. Shame!
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Date: 20.09.2012
From: Two hip replacements and still going!

Subject: Re: new thread rhona, lynn, marlene

Hi Ladies, did any of you see the Food Hospital programme on Channel 4 last night? They had a 29 year old woman who had suffered from RA since the age of 14 who had an ESR of 28. They put her on a Omega 3 rich diet for 10 weeks and was retested. She lost half a stone and her ESR had gone down to 18. She also said she was less stiff. Rhona, when Enbrel stopped working for me I was told by one rheumatologist that another injection wouldn't work and my only option was an infusion. When I went back the following appointment I saw my normal consultant and he put me on Humira, which has worked well for me.
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Date: 20.09.2012
From: bsk

Subject: Re: new thread rhona, lynn, marlene

Hi Two Hips,

Thanks for the heads up! Am going to watch it now. I know I'm low in Omega 3 as was tested for it years ago and prescribed supplements but I couldn't tolerate them, they made me sick - as does the smell of many omega rich goods such as salmon and sardines. Will check it out though as maybe other things I could eat.
xx
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Date: 20.09.2012
From: rhona

Subject: Re: new thread rhona, lynn, marlene

I didn't see it, sounds interesting. I think an omega 3 diet would help but not sure how hard it would be to keep it up. For a while i took fish oil capsules and i believe they did help a bit.

The consultant said to me if you have had no benefit at all from enbrel then there is probably no point in trying another anti-tnf, he felt it better to go for a biologic that targeted a different part of the immune system, although that hasn't helped much either. I will ask again when i go next week. Thank you for giving me that information and pleased to hear that the humira is working for you. x
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Date: 21.09.2012
From: bsk

Subject: Re: new thread rhona, lynn, marlene

Well, it seems I eat most of those things already. My friend who is a qualified herbal medicine practitioner told me you have to take vast amounts of turmeric to help and there is no guideline available as to how much you should have and no way of checking the active ingredient. It all seems just a wee bit unscientific for me.
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Date: 21.09.2012
From: Two hip replacements and still going!

Subject: Re: new thread rhona, lynn, marlene

I couldn't do the diet they put her on either as I am vegetarian and do not eat fish. I'm quite sceptical about diets I tried one before and did not see any benefit from it. I read somewhere about tumeric that to get any benefit from it you have to take the tablets. I also read some studies on it but there wasn't any conclusive evidence that it did help. Could her esr have gone down due to weight loss? Who knows. I think I'll stick with my rheumatologist as he is very good! :)
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Date: 21.09.2012
From: bsk

Subject: Re: new thread rhona, lynn, marlene

Interesting point! I wondered if it was just the normal fluctuation people have - who knows what meds she is on. My esr always low because am on steroids. I wasn't convinced. Now have had my sister emailing about the salt bath article in Daily express today. Sounded promising until I read it hasn't been tested on humans yet. Just mice lol!
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Date: 21.09.2012
From: rhona

Subject: Re: new thread rhona, lynn, marlene

Hi bsk, There are now some places that you can go to and float in a bath of salt water, someone left a message on here a couple of months ago saying they had been and they felt great benefit. I checked out one online and they use epsom salts so wonder if putting that in the bath would be same thing, only problem i can't get into bath and changed it to walk in shower. It would be lovely to soak in a nice warm bath before going to bed, hope you are all feeling well. x
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Date: 21.09.2012
From: bsk

Subject: Re: new thread rhona, lynn, marlene

Hi Rhona, Yes, I've heard about epsom salts, in fact saw a huge bag in a chemist the other day and wondered whether to try them.
The bath thing is a problem for a lot of people with arthritis, I can use one at the moment but when I'm really bad have to shower. A bit of a fly in the ointment.

How are you doing? I'm ok.
xx
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Date: 21.09.2012
From: Lynnr

Subject: Re: new thread rhona, lynn, marlene

I never saw the programme the other night but my nurse who does my bloods asked me if I had she said she was thinking about me when it was on lol. Rhona I don't think that can be right about if 1 anti tnf works then most won't I have no improvements with enbrel but loads with humira so fingers crossed they will get u onto something else, I. Got my bloods back today and 4 weeks off mxt my neutrofils r not improving I'm starting to really worry something else is going on or it's the humira I see my rhumy nxt frid x
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Date: 21.09.2012
From: rhona

Subject: Re: new thread rhona, lynn, marlene

That's good, enbrel must be helping. I'm not too bad, i seem to get worse at this time of night, i really stiffen up, probably sitting too long.

Have good weekend,

Nite nite x
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Date: 22.09.2012
From: bsk

Subject: Re: new thread rhona, lynn, marlene

I do too Rhona, usually can't walk to bed lol!

Lynn, try not to worry, it's probably just the drugs. My GP said they usually go down quite quickly with a break from the drugs. I had a similar thing with Cimzia which sorted itself out, though the name of that drug fills me with horror when I hear it - was SO ill on it.
take care. xx
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Date: 22.09.2012
From: Lynnr

Subject: Re: new thread rhona, lynn, marlene

Hope so bsk just was toid that things get back to normal pretty quick but 4 weeks seems a while and I was only on it a short time!
Goodness knows lol drugs eh x nite ladies xx
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Date: 23.09.2012
From: bsk

Subject: Re: new thread rhona, lynn, marlene

Hope things improve Lynn.

How was everyone's weekend?
xx
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Date: 24.09.2012
From: rhona

Subject: Re: new thread rhona, lynn, marlene

Hi Girls, had a lazy weekend, not feeling my best bsk, I went to hang some washing out today and hurt my knee going down the steps at the back door.

Hope things pick up this week for you Lynn.

Are you alright Marlene?

Off to bed shortly,

Nite xx
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Date: 24.09.2012
From: bsk

Subject: Re: new thread rhona, lynn, marlene

Sorry to hear you've hurt yourself Rhona. Is it an ice pack job or more serious than that? Thank goodness you have an appt coming up.

You must have had much better weather up there than us. Chucking it down all day. Never seen so much rain!

Hope you feel better in the morning.
nightxx
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Date: 24.09.2012
From: rhona

Subject: Re: new thread rhona, lynn, marlene

Knee seems a bit better this morning bsk. My daughter went down to London on Sat and said that, although she has enjoyed it and went to brick lane market yesterday and Soho last night, think they went all over. She is heading to the airport shortly and said the weather is minging (lovely word) lol .It was dry and sunny sat & sun here but rainy today,xx
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Date: 25.09.2012
From: bsk

Subject: Re: new thread rhona, lynn, marlene

Glad your knee is ok. Isn't today your appt? Best of luck,wait to hear what's happened.

xx
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Date: 25.09.2012
From: Lynnr

Subject: Re: new thread rhona, lynn, marlene

Aw poor you rhona sorry to hear your knee is playing up fingers crossed you get something new ASAP I had a ot visit last week and she was great she brought me in a shower stool a raised toilet seat and perching stool so I can stop half way up stairs and a wee hand grabber thing she is coming back out tomorow but what a difference these things have made already. Have any of you been referred to ot? X
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Date: 25.09.2012
From: bsk

Subject: Re: new thread rhona, lynn, marlene

I had OT visit over two years ago. She recommended lots of changes plus gave me some equipment. Very useful.
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Date: 25.09.2012
From: rhona

Subject: Re: new thread rhona, lynn, marlene

I got a few things as well Lynn the handrail outside my door has been a great benefit.

Had my appointment today with the Sister and one tomorrow with the consultant. Today was a review on the rituximab. She has told me my disease is still very active but she thinks the rituximab is helping a bit as she counted my swollen joints and said it was a bit less than the last time and recommends i have another course in Dec. but have to wait and see what the consultant says tomorrow. My hands have never been so sore and swollen and i would have expected a bigger improvement so don't know what to think.

Hope you are both well. xx
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Date: 25.09.2012
From: bsk

Subject: Re: new thread rhona, lynn, marlene

Maybe the consultant can throw some light on the situation Rhona. I feel disappointed for you. Can you ask for some complimentary therapies like hydro pool and wax baths for your hands? I hear they are very good and it might give you a bit of support too.
Good luck tomorrow and let us know as usual:)

Lynn, I got some hand grabs in the bathroom, don't know how I ever got out of the bath before! Also, magnetic electric gate as I couldn't use my last one.

I'm okish, just feel a bit unwell as usual.
xx
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Date: 25.09.2012
From: marlene

Subject: Re: new thread rhona, lynn, marlene

Hi Ladies, well the elbow is great the OA is off the scale. I haven't been on for a while hubby is going through a bad flare of sciatica, waiting on hospital appoinment. What a pair!!!
I am feeling really fed up with it all, so I thought I would come and see how you are all doing.
Lynnr so glad to hear you have been given some good aids for your home. Hope they all make life a little easier for you.
Rhona sorry your having so much trouble with your hands I do feel your pain as I have OA in my wrists and finger joints hugs for you xx
bsk hope you feel better tommorrow,
.
Hope you all sleep well to-night.
Take Care ladies xxx
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Date: 25.09.2012
From: Lynnr

Subject: Re: new thread rhona, lynn, marlene

Rhona wot a shame I feel for u let us know how u get on tomorow my app is frid my bloods haven't went back up so I'm wondering if he will stop the humira as well.
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Date: 25.09.2012
From: bsk

Subject: Re: new thread rhona, lynn, marlene

Oh gawd! Everyone is really struggling at the moment. Lynn, hope they don't take you of the Humira. Fingers crossed.

Well Marlene, glad your elbow better but sorry to hear about OA getting worse. Not surprised you are fed up. So am I if I am honest. Trying to distract myself but feeling a bit down today.
xx
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Date: 25.09.2012
From: rhona

Subject: Re: new thread rhona, lynn, marlene

Good to hear from you Marlene but sorry you are suffering so much, try and take it easy, this horrible rain doesn't help matters.

Hope your bloods ok Lynn and you can stay on humira.

Keep your spirits up bsk, give yourself a wee treat.

I think tomorrow i will ask for a different biologic, whether i get it is a different story.

nite everyone,

pleasant dreams xx
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Date: 26.09.2012
From: bsk

Subject: Re: new thread rhona, lynn, marlene

Good luck tomorrow R.
xx
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Date: 26.09.2012
From: Lynnr

Subject: Re: new thread rhona, lynn, marlene

Good luck rhona bsk and Marlene I hopeu are ok this weather would burst you.
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Date: 26.09.2012
From: rhona

Subject: Re: new thread rhona, lynn, marlene

Hi Girls, I'm not long back from the hospital so thought i would update you while i am having a wee cuppa tea.

The consultant was very nice and when he looked at my hands and seen the swelling he said he thought it best to try something else so he is going to start me on a different infusion, you get it every month in hospital but he says it's best to wait 3 months before i get it as it's not good to have too many close together. He said it takes 6 months for the b cells to return after getting the rituximab, they will write with an appointment, the new drug is called toxcilimab. I got a steroid injection today and he said they will just give me them until i get the new drug.

Hope you are all OK today.
xx
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Date: 26.09.2012
From: marlene

Subject: Re: new thread rhona, lynn, marlene

hi rhona sounds positive heres hoping xx

bsk sorry you are fed up as well. The rain and the fact my hubby is struggling doesn't help.
I am trying to do other things to stop thinking about it all, but its hard. I am coping but I don't want to cope I want to manage if that makes sense.
I am trying to take it easy but the fairies don't call on my home haha.
I hope you feel better soon.

Lynnr hope you are ok

Love to you all xx
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Date: 26.09.2012
From: rhona

Subject: Re: new thread rhona, lynn, marlene

Thanks Marlene, I know what you mean exactly, i don't want to just cope either, my husband thought i seemed a bit better after going onto the rituximab but i felt it wasn't good enough, i wanted to feel well enough to go on holiday etc not just get by. I made a mistake the infusion is called Tocilizumab. xx
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Date: 26.09.2012
From: bsk

Subject: Re: new thread rhona, lynn, marlene

Hi Marlene, me too! Made myself go out this afternoon rather than festering at home. I think the weather plays a huge part in my mood, the grey skies really get to me, though the sun has broken through now.

Rhona, that's great news. I'm so pleased consultant has another drug up his sleeve. Don't know anything about it but hope it works. Hope the steroid injection kicks in soon.

love to you all too :) xx
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Date: 26.09.2012
From: rhona

Subject: Re: new thread rhona, lynn, marlene

Thanks bsk, i feel the steroid working already, what a difference, i even managed to take the dog a short walk tonight without pain. long may it last x
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Date: 26.09.2012
From: Lynnr

Subject: Re: new thread rhona, lynn, marlene

Great news rhona ill keep my fingers and toes crossed for you I've not heard of it but hopefully this will be the one for u shame you need to wait but if u get the steroids then that should help. I have been really sore today and tired but won't be long until I see the rhumy on Friday.
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Date: 27.09.2012
From: bsk

Subject: Re: new thread rhona, lynn, marlene

Good morning everyone!
So pleased for you Rhona. You deserve a break!

Lynn, wish you all the best tomorrow with your rheumy.

How are you doing Marlene? Feeling any better? I'm a bit less mis today. Made myself go out yesterday and went to my book group last night. The girls always cheer me up. None of us had read the book lol!
Got a 'free' day today - no obligations and am wondering what to do.....
xx
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Date: 27.09.2012
From: marlene

Subject: Re: new thread rhona, lynn, marlene

Hi bsk, feeling a lot better to-day. pain is not good but i am conditioned to that. going out later decided to have lunch out with hubby i think we both need it. the sun is out to=day this helps i suffer with S A D and by reading your posts it sounds like you may also suffer with this. grey skies i just hate it.
its nice to get together with the girls and have a giggle. I am sure you will find something to do try not to make it housework lol.
well i suppose i better have a shower and get myself decent notice i didn't say beautiful. take care catch you later xx
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Date: 27.09.2012
From: bsk

Subject: Re: new thread rhona, lynn, marlene

How was lunch Marlene? Wasn't it a lovely day? I think you might be right about SAD. My gp thought I had it a while back. What do you do for it? (apart from going to lunch...)

DID do housework today lol! Cooked a curry as well, which I find therapeutic. Eating it even more therapeutic!
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Date: 27.09.2012
From: marlene

Subject: Re: new thread rhona, lynn, marlene

Well we started out picked up a few bits for my tropical fish. Then popped in the supermarket and we both decided to come home and we had a nice meal at home. Then I groomed my dog which beleive it or not I find relaxing as she enjoys it as well. Then we gave the fish tank a clean. From six o'clock we just got our pjs on and lounged around. Its now 11.0'clock and I am just looking around forum before I get tucked in for the night.
I take Beroca (spelling) its orange flavour fizz drinks I don't know if it works, I would say not as I still get really low on grey days, the winter is fine as long as it is bright. It is just a lack of sunshine I suffer with low vitamin D anyway I do take a supplement for this.

I like cooking as well curry sounds good and therapeutic! It must be the turmeric LOL
I did some housework as well before we left the house I still don't have any fairies!!!
I hope tommorrow is sunny again it is raining again at the moment.
Well sleep tight chat tommorrow xxx
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Date: 27.09.2012
From: bsk

Subject: Re: new thread rhona, lynn, marlene

Sounds very relaxing Marlene, just what you needed. Lounging around in pjs exactly what I did myself this evening! The curry was good, made my own garam masala and put plenty of TURMERIC in ha ha. Haven't noticed any discernible difference yet lol!

Sleep well. xx
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Date: 28.09.2012
From: marlene

Subject: Re: new thread rhona, lynn, marlene

Hi bsk, just had a call from my son his wife is going in hospital in the morning to be induced a bit early. She has trouble with pregnancies this is her fourth but they only have one child.(bless)
I am going over to-night to look after the little one so hopefully by the week-end i will be a nan again.
That has cheered me up, a little worried until baby arrives but i am sure all will be well again this time.
Let you know as soon as xxxxx
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Date: 28.09.2012
From: marlene

Subject: Re: new thread rhona, lynn, marlene

Sorry everyone hope you are all well and had a good nights rest xxxx
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Date: 28.09.2012
From: bsk

Subject: Re: new thread rhona, lynn, marlene

Best of luck for your daughter-in-law. I hope it all goes well for them. Have a great weekend.
xxx
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Date: 28.09.2012
From: rhona

Subject: Re: new thread rhona, lynn, marlene

Hope all goes well For your daughter-in-law Marlene.

How did you get on today Lynn?

Are you alright bsk?

I had to go and get a new laptop last night, my old one had been on its last legs for a while but i didn't want to part with it as it was comfortable to use. I'm still trying to get used to this new one.

It is so cold and windy here today, i just stayed in and caught up with my ironing. I am fine at the moment but don't know what i'll be like when the steroid wears off.

Take care everyone xx
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Date: 28.09.2012
From: Lynnr

Subject: Re: new thread rhona, lynn, marlene

Hope all goes well with ur daughter in law Marlene glad your feeling a wee bit better rhona.
My rhumy had decided that mxt is a no no for me thankfully I don't think I could go back on it so was quite glad to hear that although he thinks the humira won't work just as good but I'm happy to be taking it on it's own, my bloods from yesterday has risen a bit too so it was defo the mxt and not the humira so I was glad to hear that.
I'm going to have a lazy weekend I think.
Hope you all have a lovely pain free weekend take care x
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Date: 28.09.2012
From: rhona

Subject: Re: new thread rhona, lynn, marlene

That is good news Lynn, i wouldn't take it again either if i was you, you had more trouble than benefit from it and that is good that your bloods are rising again.
A lazy weekend doesn't sounds too bad when it's as cold as it is.
take care xx
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Date: 28.09.2012
From: bsk

Subject: Re: new thread rhona, lynn, marlene

Hi Lynn, pleased you are off the mtx. It wasn't very good for me either and you won't have to have endless blood tests any longer. Worth it just for that lol!

Enjoy your new laptop Rhona! I got one earlier this year. So much better!

It's not so cold down here. Yesterday was beautiful, lovely autumn day. I've got a wedding party to go to tomorrow night but knees not too great, don't think I will be doing a lot of dancing but will try my best!

Mood still very flat. Just got to sit it out I guess.
Hope you all enjoy your weekend.
xx
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Date: 29.09.2012
From: rhona

Subject: Re: new thread rhona, lynn, marlene

Hi Girls, How are you all today? Did you enjoy the wedding party bsk? hope you managed a few dances.

Do you ever find when you get steroid jabs that they make you go to the loo more often. I think i was up every hour last night and just wondering if that could be the cause.

Nite nite xx
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Date: 30.09.2012
From: bsk

Subject: Re: new thread rhona, lynn, marlene

Hi Rhona, I did dance and in heels! The alcohol helped dull the pain considerably and, although my knees are very sore, I'm very glad I did it (though we'll see how I am tomorrow!) Great fun, lots of good people and music. Just the tonic I needed.

Not aware of steroids doing that but I guess it is entirely possible as they give everything a bit of a boost, kidneys too probably. How are you feeling?

xx
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Date: 30.09.2012
From: rhona

Subject: Re: new thread rhona, lynn, marlene

I am pleased that you enjoyed your night bsk, sometimes a good night out is all it takes to lift your spirits.

Hope everything is well with you and your daughter-in-law Marlene.

I'm doing alright just now, what a difference to be able to walk without too much pain.

Take care everyone xx
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Date: 30.09.2012
From: bsk

Subject: Re: new thread rhona, lynn, marlene

long may it last Rhona!
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Date: 04.10.2012
From: marlene

Subject: Re: new thread rhona, lynn, marlene

Hi ladies, glad to announce baby grandson Luke arrived 1st october after some scary moments. He weighed 5lb 11ounces but he is doing great. I was shattered when i got home forgot how hard a two year old is to care for. One day turned into four but it was worth every second.
Hope you are all good!!!
Take care xxx
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Date: 04.10.2012
From: rhona

Subject: Re: new thread rhona, lynn, marlene

That's wonderful news Marlene, you will be relieved it's all over. Is that two grandsons that you have now? bet you are so proud. I hope you managed to get a good rest when you got home.

Hope you are well bsk and Lynn.

Take care xxx
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Date: 04.10.2012
From: bsk

Subject: Re: new thread rhona, lynn, marlene

Congratulations Marlene, that is wonderful news. Great name too. One of my favourites! Hope you all get some rest. xx

How are you doing Rhona?
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Date: 04.10.2012
From: rhona

Subject: Re: new thread rhona, lynn, marlene

I'm doing ok bsk. I went into town today and that is the first in a year, it was a great feeling walking on Sauchiehall St. The last couple of days have been the best in a long time. i even took my rings into a jewellers yesterday to get altered, my fingers have swollen and i haven't had my rings on for months, it's the first in ages that i have actually felt like doing things but i get worried that it won't last for long.

Are you doing alright? I think we are all due a wee break.
xx
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Date: 04.10.2012
From: marlene

Subject: Re: new thread rhona, lynn, marlene

Hi Rhona and bsk thankyou. I have been home two days and feel rested a bit my shoulder and back are suffering from picking up the two year old. Cuddles nanny what can you do???
I have two grandsons and two grandaughters now. Proud as punch as the saying goes.
Awww so glad for you Rhona fingers crossed that it will be for a long long time as good as it is now.
It sounds like you had a good time at the wedding bsk good for you!!!
Lynnr i hope you are ok.
Take Care xx
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Date: 05.10.2012
From: bsk

Subject: Re: new thread rhona, lynn, marlene

Excellent news Rhona. If I remember correctly, didn't your rheumy say they would repeat the steroid injection if you need it? Try not to worry about the future too much and get out there and enjoy yourself!

You can but enjoy the cuddles Marlene lol!
xx
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Date: 05.10.2012
From: Lynnr

Subject: Re: new thread rhona, lynn, marlene

Congratulations Marlene that's lovely news xx rhona I'm glad you are doing ok I'm feeling much better being off the methotrexate keeping my fingers crossed x
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Date: 05.10.2012
From: bsk

Subject: Re: new thread rhona, lynn, marlene

Good to hear Lynn.x
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Date: 05.10.2012
From: rhona

Subject: Re: new thread rhona, lynn, marlene

Thanks girls, yes they said i can get the injections to tide me over, i was counting them up though and i've had at least twelve in the last year but as you say bsk no point in worrying. Hope you are feeling well too.

Good to hear you are feeling better Lynn, i think you are much better off without the mtx.

Hope you have recovered Marlene and the new baby is thriving.

Have a good weekend girls.

xx
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Date: 06.10.2012
From: bsk

Subject: Re: new thread rhona, lynn, marlene

Is that twelve systemic ones or are you including ones into the joints? You can have both I think. They won't give you more than is safe - let them do the worrying! I believe it is so important to seize the moment when you have this condition. None of us know what is round the corner.

It is a beautiful sunny day here in London. The six (!) lime trees at the end of my garden were reduced last week and the light is pouring in. I love the privacy the trees give me in the summer but it does overshadow half of the garden. Hopefully the roses will do better next year and the green tomatoes remaining will ripen.

Hope you have a good weekend.xx
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Date: 06.10.2012
From: marlene

Subject: Re: new thread rhona, lynn, marlene

Hi ladies, well i feel rested now. The little one is doing well. I feel so much better knowing he is here safe and sound. The little family is complete now so the whole family are so happy for them.
Well I hope you all have a good week-end,mine chilling out. Went for a pub lunch to-day as mum is out for the day. (bless my other half) so easy to please thank god.
Tommorrow I am going for the full on sunday roast.
Take care evryone xxx
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Date: 06.10.2012
From: rhona

Subject: Re: new thread rhona, lynn, marlene

Hi bsk, I have had approx. 5 systemic and 7 joint injections over the last year. I don't think they count them so hope it is safe but then i did need them.

Beautiful day here too and a lovely sunset tonight so expect the same tomorrow.

Glad all is well Marlene, enjoy the roast.

xx
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Date: 07.10.2012
From: bsk

Subject: Re: new thread rhona, lynn, marlene

You sound very happy and contented Marlene! Weather supposed to be lovely tomorrow.

Just as well you are keeping count then Rhona!
xx
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Date: 07.10.2012
From: marlene

Subject: Re: new thread rhona, lynn, marlene

Hi bsk I am in a lot of pain but if that is my lot so be it. Life is good with the family and stress free (maybe I shouldn't say that). It hasn't been for the last nine months so yes at this time very happy and contented.
I wish all you ladies the same xx
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Date: 07.10.2012
From: bsk

Subject: Re: new thread rhona, lynn, marlene

I'm pleased for you Marlene. I can see how much your latest grandchild means to you.

xx
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Date: 07.10.2012
From: marlene

Subject: Re: new thread rhona, lynn, marlene

Thank you bsk. I love all my grandchildren to bits. This little one is the icing on the cake for my youngest son and his wife.
They are so happy and this makes me a happy bunny. Being mum and nanny.
I have jjust finished the ironing and at 9:45 I am in bed full of pain killers and suffering!!
The Sunday Roast was good.So another good day.
Nite everyone sweet dreams xxx
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Date: 08.10.2012
From: rhona

Subject: Re: new thread rhona, lynn, marlene

Hi Girls,

Hope you are all enjoying the nice weather, what a difference it makes to see the sun shining.

Hope your pain is easier today Marlene, my fingers are still very sore and stiff, i spend too long on the internet so that doesn't help. I have been on the Debenhams site buying a few things in their sale.

Take care all xx
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Date: 08.10.2012
From: bsk

Subject: Re: new thread rhona, lynn, marlene

Ha ha Rhona, it's been chucking it down all day here!
You can put your hands in a bowl of hot water if they get too stiff. See if it helps. What did you buy?

Had my flu jab on Friday and my arm is red, swollen and sore. I've also got neck and shoulder pain so am feeling grumpy today. I signed up to The Expert Patient Prgramme this morning. Don't really want to go but guess it might be useful for something lol!

take carexx
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Date: 08.10.2012
From: rhona

Subject: Re: new thread rhona, lynn, marlene

Hi bsk,

lol, i thought you were having it nice down south, oh well it must be our turn to see the sun.

My daughter got her flu jab this morning as well, at least that's you had it. I don't think i can have mine because of the rituximab, i read somewhere that is would be a waste if time until the b cells return and that should be december.

Perhaps it's the damp weather that's making you sore, hopefully you will feel better tomorrow.

I didn't buy anything too exciting, just a few nice jumpers, i got one for my youngest daughter and a cross body bag for myself, i find them much easier to use now.

What is the expert patient programme?

Take care xx
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Date: 08.10.2012
From: bsk

Subject: Re: new thread rhona, lynn, marlene

Thanks Rhona. I've had a look at debenham's website but there is so much stuff!

The expert patient is a six week course for people with long term health conditions - supposed to help you manage them. If you google it you can have a look. Don't know if you have one in your area but you can check if you are interested.
xx
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Date: 08.10.2012
From: marlene

Subject: Re: new thread rhona, lynn, marlene

Well ladies the rain and cold hasn't helped one bit pain through the roof. That will teach me for having a high after the new arrival.I had my flu jab to-day she couldn't understand why I opted for my right arm as this is the hand I use. I just couldn't be bothered to go through all the whys and wherefores of my OA in the left shoulder and hand. It would of only taken a glance to see my swollen hand. Oh well she is only my practice nurse.
Rhona shopping sounds good, hope to hit the shops tommorrow with my daughter. Fingers crossed
Night girls sleep tight xx
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Date: 09.10.2012
From: bsk

Subject: Re: new thread rhona, lynn, marlene

I had a reaction to flu jab this year Marlene. Very red, swollen and itchy . Not normal for me. Same as you with joints yesterday and weather. Usually it's lovely this time of year, well, not as wet at least. Hope you have better luck shopping than me, couldn't find a thing to buy when I went last week. MIght try later in the week. I took a whole load of clothes to charity shop in the summer and now have nothing to wear!!
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Date: 09.10.2012
From: marlene

Subject: Re: new thread rhona, lynn, marlene

Hi bsk I had a bad reaction three years back finished up in A&E. My Dr wasn't convinced that the hospital had it right. I haven't had a reaction since so who knows!!!!
Well off shopping soon, i hope i find some summer bargains going to Canary Isles in four weeks.
I am going to have a clear out after hols!!! Should be fun.
Well Sun Is Shining to-day but my joints are all swollen still and my feet are killing me upper part if that makes any sense.
Let you know if I get any bargains, bye for now xx
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Date: 09.10.2012
From: marlene

Subject: Re: new thread rhona, lynn, marlene

Oh dear just had a phone call from the mother-in-law. She was all set for her gall bladder op on the 5th Nov and to-day she has a letter saying because of her circumstances they have cancelled it??????????? Have no idea!!! going over tommorrow to see what I can sort out.Oh to be in demand!!!!LOL
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Date: 09.10.2012
From: rhona

Subject: Re: new thread rhona, lynn, marlene

Good Morning Girls,

Sorry to hear you are suffering Marlene, you were probably overdoing things last week, when the adrenalin is high it is amazing what we can do and then we suffer for it when things get back to normal. Best take things easy this week.

Do you think you could have had a reaction to the flu jab because of the enbrel bsk? just a thought. It should settle down soon though.

The sun is still shining here so i better make a move and make the most of it, i will get my washing hung out, i do like to see a washing blowing about, although not much wind today.

Take care xx
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Date: 09.10.2012
From: marlene

Subject: Re: new thread rhona, lynn, marlene

Well I went shopping and found a few bargains. Two tops for the evenings and some undies. I also bought mums birthday present. Oh and a couple of day t-shirts. Pleased with my shopping.
I also got some baby clothes for mum to give the little one!
Had a nice few hours out with my daughter.
Made dinner and now I am chilling out with loads of pain and yes my feet are still really hurting me.
My elbow has swollen up again, need to visit Dr . I feel like I should just camp out there.LOL Not that I am laughing at all.
Hope you have all had a good day take care sleep well xxx
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Date: 10.10.2012
From: Lynnr

Subject: Re: new thread rhona, lynn, marlene

Hi ladies I've not been on for a bit not having a great time my hubby was given his notice the other day I think the business is closing down so I have been stressed out and worried sick about the future didn't feel great at start of week felt my throat was sore and I just felt sluggish but wore this morning much worse and my nurse says I've got huge tonsils and ulcers on them and I have nitrates,leucocytes and protien in my urine so I'm off back down to see dr soon probs need an anti biotic!!!! Typical when it's injection day tomorow my joints a very sore and stiff :-(
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Date: 10.10.2012
From: bsk

Subject: Re: new thread rhona, lynn, marlene

Oh Lynn! I'n so sorry to hear your news. As if you didn't have enough on your plate. You must be under a lot of stress, probably doesn't help your immune system a great deal. Hope you get some antibiotics quickly. Sending you a very big hug.
xx
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Date: 10.10.2012
From: rhona

Subject: Re: new thread rhona, lynn, marlene

Sorry to hear that Lynn, that's the last thing you need. I hope he manages to get something else soon. I think worry makes our conditions worse, i know when i get stressed i get even more sore. I hope you feel soon feel better.

Take care xx
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Date: 10.10.2012
From: Lynnr

Subject: Re: new thread rhona, lynn, marlene

Thanks ladies yeah I think stress does play a big part I'm in agony tonight and coughing a lot hope it stays clear of my chest early bed for me.
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Date: 10.10.2012
From: marlene5

Subject: Re: new thread rhona, lynn, marlene

Hi Lynn, sorry you are going through a tough time at the moment. Your hubby must be going through it to, hope it all sorts its self out soon. Take care of yourself and hope you feel better soon.xxxxxxxxx
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Date: 11.10.2012
From: marlene

Subject: Re: new thread rhona, lynn, marlene

Well another miserable day in my neck of the woods.
Off to Drs in the morning to see if I can get this elbow sorted out once and for all. Hope you ladies are all OK!!!!
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Date: 12.10.2012
From: rhona

Subject: Re: new thread rhona, lynn, marlene

It has been a miserable day here too Marlene and i think it's affecting my joints, either that or the steroid is starting to wear off. My feet have been really sore today and i feel quite down, perhaps the miserable weather is making me feel miserable as well. Hope you get your elbow sorted and find out why it is swelling again.
xx
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Date: 12.10.2012
From: marlene

Subject: Re: new thread rhona, lynn, marlene

Hi Rhona, you are right this weather is the pits grey skies all day.It does make us feel worse.
I have just got back from Drs and now they say my elbow is a cyst, I dont care what it is just sort it LOL. Anti-biotics for chest infection and anti-biotic spray for my ear. Doing well at the moment.I bet some people would be quiet jealous of the attention i am recieving haha.
I feel pretty fed up also.
I suppose we just have to get on with it.
Take care chin up xx
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Date: 12.10.2012
From: bsk

Subject: Re: new thread rhona, lynn, marlene

Beautiful day here today compared to yesterday. Really lifts my mood and been out in the garden cutting down beans etc. I love this time of year when it is like this.

Hope you all feeling a bit better today. Marlene, I'm very jealous of all the attention you are getting lol! Cyst must be very painful - ouch.

Rhona, hopefully just the weather that is affecting you. Lynn, how are things going?
xx
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Date: 12.10.2012
From: Veronica

Subject: Re: new thread rhona, lynn, marlene

Joining in! It is such a beautiful day here in Wemmel where I live in Belgium. We are lucky to have a garden which we have really enjoyed this year, even getting our first hedgehog which we have had fun looking after. Everyone is so friendly on here and I look forward to lots of chats. Have spent this morning learning how to transfer photos and music to my tablet to get ready for next week's visit to the hospital. Success! I just remind myself that this time next week and it will be home time again.
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Date: 12.10.2012
From: marlene

Subject: Re: new thread rhona, lynn, marlene

well much better day to-day sun shining.i have been fed up the last couple of days but i'm ok now.I have been pottering in the garden as well.Good for the soul.It seems a lot of us ladies love the gardening. fresh veggies from the garden sounds good to me.
Veronica sounds fun looking after the hedgehog,I love to see the birds feeding from the bird house outside my kitchen window.
Your operation will be over and a distant memory before you know it. Glad you joined the forum, it is a great support to us all.
Love to you all and take care!!!!!!
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Date: 13.10.2012
From: Lynnr

Subject: Re: new thread rhona, lynn, marlene

Hi ladies bsk I'm no better in fact worse i think my throat is getting bad and I'm dreading the weekend I tried to tell the receptionist at dr today but she wouldn't listen and they didn't give me my results for bloods and the urine that got sent to hospital I'm feeling really fed up at the ,moment :-(

I hope everyone has as good a weekend as they can have under these circumstances

Take care x
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Date: 13.10.2012
From: bsk

Subject: Re: new thread rhona, lynn, marlene

What do you mean Lynn? Wouldn't they give you an appointment? Just go to out of hours service if you still feel bad tomorrow. I often do that,though I have antibiotics to keep at home these days which makes things much easier. Let us know how you get on.

Hi Veronica, welcome to the forum.

Hi Marlene, wasn't it a glorious day? Made such a difference to my mood.

Hi Rhona, how are things up your way?
xx
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Date: 13.10.2012
From: rhona

Subject: Re: new thread rhona, lynn, marlene

Hi Girls, sorry to hear that your throat is sore lynn, try not to worry about the blood results, if there was anything too bad they would have to have got in touch with you. I agree with bsk, go to the out of hours if you no better, when you are on biologic drugs they should see you right away, you could always call the hospital for advise.

I don't feel so good bsk, i went out to the supermarket today and it was a bit of a stuggle, my feet and hands are hurting, i think the steroid is probably wearing off and it was so cold that i couldn't wait to get home.

Glad you are feeling better Marlene.

Have a good weekend all.

xx
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Date: 13.10.2012
From: bsk

Subject: Re: new thread rhona, lynn, marlene

Gosh Rhona, that didn't last very long. What a shame. Are you on oral steroids as well?
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Date: 13.10.2012
From: rhona

Subject: Re: new thread rhona, lynn, marlene

Hi Girls,

It is a very wet Saturday here so i don't think i will be going too far today.

I haven't taken any oral steroids since starting the infusions bsk although i have been getting an injection about every month. My knee feels a bit odd today, i hope it's not going to start up again.

Are you feeling any better today Lynn?

Take care everyone. xx
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Date: 13.10.2012
From: bsk

Subject: Re: new thread rhona, lynn, marlene

Wonder whether you should ask them about taking a low dose - just to see you through to the new drug. Trying to get off mine of course so shouldn't really suggest it but they do help a lot. xx
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Date: 13.10.2012
From: rhona

Subject: Re: new thread rhona, lynn, marlene

I still have a supply left from the last time and if things get too bad i will start them again although i didn't find a low dose helped me. They did say i could have the injections when i need them but don't want to have too many of them either unless it's really needed.

I have had a really lazy day, i think this weather depresses me. i have been on my laptop for hours, i have been looking at holidays in warmer climates lol but i think i would feel too nervous to go as i never know how i am going to be from one day to the next, then i tell myself to take the chance and go. I don't seem to be able to decide on anything just now, i am beginning to think i am depressed, probably between this condition and the weather, oh well, i guess i will just have to get on with it.

Hope you are doing ok,

Take care xx
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Date: 13.10.2012
From: marlene

Subject: Re: new thread rhona, lynn, marlene

Hi Rhona, when I was unsure about going abroad with so many health issues,pacemaker OA Asthma I spoke to my GP. He said to go away in the winter would do me the world of good. But to make sure I had an insurance that covers everything. You could maybe try a short flight to start with. I know it is very hard to make a decision sometimes we just have to bite the bullit.Maybe a short break would be good for you for a tester.I always make sure I have plenty of all my meds.
The weather for us is a real downer. I get proper fed up in the winter.
I had a visit from my son and his family to-day, his daughter (13yrs) is turning out to be a real lady.
Well heres to a bit of sunshine for us all tommorrow.
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Date: 14.10.2012
From: bsk

Subject: Re: new thread rhona, lynn, marlene

Hi Rhona, I agree with Marlene. I was really worried about going away earlier this year but booked anyway and planned it all within an inch of my life! All went well and it felt such an achievement.
xx
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Date: 14.10.2012
From: rhona

Subject: Re: new thread rhona, lynn, marlene

My daughter says the same as you both, it is something for me to think about. Are you going away soon Marlene? I seem to remember you saying a while ago that you were going away around oct/nov.

I can't believe i am still up and it is after 2am. i couldn't sleep last night for some reason then i was late getting up, i better get to bed now. xx
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Date: 14.10.2012
From: bsk

Subject: Re: new thread rhona, lynn, marlene

p.s you can ask for a steroid shot before you go. Can't believe I went to bed at 2am and am up at 6. Went to dinner last night and had a very rich meal so got indigestion! Also, wrist very painful and woke me up. Must get back to sleep lol! xx
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Date: 14.10.2012
From: Lynnr

Subject: Re: new thread rhona, lynn, marlene

Hi ladies I'm not really any better but not much worse but i will be giving my gp a ring 1st thing in morning when I asked to see someone last week I was put into nurse practitioner who phoned them thru and said I need to be seen by a dr each time I come in as I have a very volatile WBC and neutrophils so I had to go away and come back I was not pleased felt awful so I will b demanding a new app tomorow I now have a mouthful of ulcers and my throat and urine infection are no better my joints are awful :(

Hope everyone else is having a better weekend x
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Date: 14.10.2012
From: marlene9

Subject: Re: new thread rhona, lynn, marlene

oh lynnr sorry you are still feeling rough. You poor thing I hope you get better once you see your Dr. Hugs for you on the way!!!

Rhona go for for it!!! Yes three weeks and I am off to Fuerteventura for 14 days can't wait to get in the sunshine. I also cant wait for the massages that cost £17.50. a go at least I can afford to have them once a week there. I have to pay £40-£45 a week here out of my price range LOL.
Take Care another sunny day here Lovely.XXXX
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Date: 14.10.2012
From: bsk

Subject: Re: new thread rhona, lynn, marlene

You do sound very unwell Lynn, hope you get to see someone tomorrow.
xx
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Date: 14.10.2012
From: rhona

Subject: Re: new thread rhona, lynn, marlene

I hope you start to feel better soon Lynn, you seemed to be doing well for a wee while with the humira, i hope this is just a minor set back. Let us know how you get on tomorrow.

That is lovely that you will be off to warmer climates soon Marlene, my daughters love Feurteventua, they were there last year for the 3rd time, beautiful beaches. A massage and sunshine is just what the doctor ordered.

Went out for a meal tonight and a couple of small glasses of wine, it does make me feel a bit better.

Hope your wrist is a bit better bsk.

Take care xxx
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Date: 14.10.2012
From: Lynnr

Subject: Re: new thread rhona, lynn, marlene

Thanks ladies Marlene can I come with you lol my throat seemed a but better today but its really sore again tonight and the ulcers in my mouth r agony ill phone surgery in morning and see if I can see someone.

Will keep u updated x
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Date: 15.10.2012
From: marlene

Subject: Re: new thread rhona, lynn, marlene

Lynnr, I would slip you in my hand luggage if I thought I would get away with it.LOL

This will be my third year also. I love it the people so friendly. When I went down with a chest infection along with the other half, the treatment was excellent no messing antibiotic jabs, along with a fantastic cough syrup.I was well within three days and able to get on with my holiday.
Good insurance they paid out within two weeks of sending them the Bills.
Why don't you go with your girls for a holiday you would love it.

Hi bsk sorry your wrist is hurting I can totally feel your pain!! Hope its better tommorrow.
Its 1o'clock monday morning sleep is still far away I can just sense it.
Well take care hope the new week is good for you all.
XXXXXXX
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