Date: 25.05.2012
From: Lynnr
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Subject: New thread for rhona and bsk
Hi ladies it seems like ages since I have been on how are you both? Rhona have you decided about the infusion? I am still off all my disease modyfying drugs and I'm in agony, had a busy week with app had my impressions for my mouth guards and my dr and app at a pain clinic and today I'm heading to see the rheumatologist I've waited for this app I can't wait to see what he suggests now...... My dr has discovered my b12 is low so I'm on new meds and will b getting injections if it does not improve in 3 weeks, I am getting referred to a pain physio and a tens clinic and a few new meds to help with the pain and today I'm hoping for a new combo from rhumy also I have been flaring bad this week every joint feels like its grinding off the next 1 I am so grateful for the sun although it doesn't help the pain it does help my mood lol well I better go and hobble around getting ready for hospital I hope you are both doing well and enjoying some sun Take care xx
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Date: 25.05.2012
From: bsk
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Subject: Re: New thread for rhona and bsk
Hi Lynn, you have got a lot going on! Glad you are getting to see your rheumy this week. Will be interested to see what he says. I've had another bad reaction at the injection site. Initially nurse said to stop it but I wanted to give it another go but couldn't do it today as nerve gave out lol! I rang the nurse and she has arranged for me to go to the infusion clinic on Monday so will be in hospital if I have a reaction. I'm pretty sure I will be taken off it if I have another reaction so feel disappointed as my joints seem a lot better. So, I have the weekend off lol! Going to enjoy the sunshine and try not to think about the future.
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Date: 25.05.2012
From: rhona
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Subject: Re: New thread for rhona and bsk
You have had a busy week Lynn, I hope you get on well at the rheumatologist today and get something to help with the pain. I have been so sore and stiff and i had to call the hospital last week and I spoke to a consultant and he told me to increase the steroids but i am still almost as bad I have an appointment again to see about the new treatment, i probably will go for it unless there is something else, i have to go next month to discuss it again, i had hoped it would all have been ready to go by now but seemingly there is more tests to be done, by the time i get something i will probably have joint damage, getting so sick of it all. I get B12 injections every 3 months Lynn, think the arthritis caused the shortage. Hope you get on well on Monday bsk, it would be a shame to stop it if it is helping. Have a lovely weekend and make the most of the sun. xx
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Date: 26.05.2012
From: bsk
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Subject: Re: New thread for rhona and bsk
Sorry to hear you have had to put the steroids up Rhona. What are you on now? Remember they take a while to work - I find about 7-10 days roughly. I am trying to get mine down lol! Not easy and, although I think Enbrel is working to some degree, I've still got quite a bit of pain in my wrist, though shoulders seem to have settled down. Hope you both enjoy the lovely weather. I hear Glasgow was 27 degrees in the week, must have been glorious! Take care. xx
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Date: 26.05.2012
From: rhona
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Subject: Re: New thread for rhona and bsk
Hi bsk, I am taking 10mg at moment and to be honest i feel i could be doing with a lot more as they don't seem to be doing anything for me but then again i don't want to become dependent on them, like you said before, i am between a rock and a hard place. I am pleased to hear that the enbrel seems to be working for you, it had to work for one of us lol. The weather is beautiful in Glasgow, it is lovely to see the sunshine, just wish i could get into town and buy some nice new clothes, hopefully soon. xx
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Date: 26.05.2012
From: bsk
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Subject: Re: New thread for rhona and bsk
I've had to go up higher than 10mg before. You must really be struggling if that isn't working for you. I hope they make a decision about your treatment soon. I've got a feeling I'm not far behind you on that score. Not convinced things are going to work out on Monday. glad to hear you are enjoying the weather. I will be up in Glasgow next month and what's the betting it will be cold and wet lol! On a positive note, I have a new laptop. Fantastically good for my painful hands. Take care xx
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Date: 27.05.2012
From: Lynnr
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Subject: Re: New thread for rhona and bsk
Hi ladies well I am not in the least pleased since my visit to rhumy on frid he says the meds have caused damage to my bloods and there is too many risks to continue on these treatments it would be different if they were working a bit for me but theynr not, since I saw the pain consultant on thurs he wants me to try and see if the new pain meds he gave me help which I know they won't and then that doesn't help with the damage which I'm sure must be happning to my joints but to be honest I'm too tired to argue I see him on 20 th July and if pain gets unbearable to phone rhumy nurse!!!! I am not pleased at all my WBC has seemingly been low since feb and they started me on mxt wen it was low which the obviously shouldn't just so fed up Sorry to rant I'm glad ur feeling a little better bsk wud b a shame to stop as u say hopefully u will improve with each injection, and sorry rhona u don't seem to have it good either Take care hope things improve for us all soon xx
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Date: 27.05.2012
From: rhona
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Subject: Re: New thread for rhona and bsk
Yes i am struggling bsk, it's really getting me down, i'm on all these drugs and they don't seem to be doing anything. My hands are really sore, i can't bend my fingers and i am now getting pain from my hips, that's my moan for the day lol. I hope things go well for you tomorrow. You really have had your time of it Lynn, you would think there would be something that could help you without causing damage, I don't know if any of the homeopathic medicines would be of any help to you, I hope the new pain meds give you some relief. Take care xx
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Date: 27.05.2012
From: bsk
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Subject: Re: New thread for rhona and bsk
Hi Lynn, that is not good news at all and I'm sorry to hear it. Where do you go next? Did they give you any idea? Hopefully they will get you and Rhona on something that works soon. Nurse rang me this morning to say I've got to wait til Wed now for injection. No problem lol!
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Date: 27.05.2012
From: Lynnr
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Subject: Re: New thread for rhona and bsk
Rhona I'm sorry to hear your struggling it's not nice! hopefully things will improve soon regarding ur injection site bsk and you can stay on it it was my rhumy nurse I seen then she went in and spoke to rhumy and came back and said they were stopping all treatments for good she said I didn't seem to have an awful lot of swelling in the joints.... Well that didnt surprise me as that is my best time of day I have to get up 2-3 hours now before kids in mornings to get myself a little mobile it's a nightmare she asked me how I was coping at home I told her i wasn't she just said ok they dont seem to bother. Anyways the sun is still shining so that is a definite bonus enjoy the rest of your weekend take care x
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Date: 30.05.2012
From: bsk
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Subject: Re: New thread for rhona and bsk
hi girls, how are you doing? Good news about enbrel injection today. Rhumy nurse gave me a quarter dose and only a very small reaction. So the regime now is two injections a week. Hope I remember to do them lol! I'm pleased because it means I can give it more of a chance to work. Any news from either of you?
take care xx
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Date: 30.05.2012
From: rhona
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Subject: Re: New thread for rhona and bsk
That is good bsk and it does make sense, happy for you. I had been trying to get an earlier appointment with hospital and pleased to say they called today and i have to go in tomorrow, I will hopefully be starting new treatment soon, should find out tomorrow. Hope you doing OK Lynn xx
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Date: 31.05.2012
From: bsk
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Subject: Re: New thread for rhona and bsk
thanks Rhona. Good luck tomorrow. Look forward to hearing what they say. I was listening to my nurse explaining infusions to a woman next to me. There seemed to be several options so I hope they have one which works for you.
xx
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Date: 31.05.2012
From: rhona
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Subject: Re: New thread for rhona and bskut
Hi bsk, I'm not long back from the hospital, i have to go in next Friday for my first infusion then the next one 2 weeks later, they have recommended i try the rituximab, there was another one that you get monthly but i thought best to go with their recommendation. The sister said she doesn't think there has ever been anyone in Britain that's had the fatal brain disease with it, i am nervous about it but the way i feel i don't think i have any choice. take care xx
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Date: 31.05.2012
From: bsk
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Subject: Re: New thread for rhona and bsk
At least you are starting some new treatment. I really hope it works for you. I understand about not having any choice, that is how I feel too.
However, I am determined to give Enbrel a decent chance and, with a bit of luck, will be able to stay on it.
xx
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Date: 31.05.2012
From: rhona
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Subject: Re: New thread for rhona and bsk
Thanks bsk, That is so true that you have to give it a chance. I've just looked at my card and it's actually Thursday i have to go, just as well i checked it. xx
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Date: 01.06.2012
From: Lynnr
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Subject: Re: New thread for rhona and bsk
Hi ladies rhona I'm glad to hear you are going for the infusion this just might be the drug for you I will keep my fingers crossed for u and bsk I'm glad they have managed to work out a way so you can stay on enbrel.....as for me well I'm bed ridden can't do a thing I just don't know wot I am going to do I'm really thinking of phoning my rhumy nurse and seeing if she can see me although she said I wouldn't get steroids so I am wondering if there is any point.... I am supposed to be going away to a lovely hotel next weekend for my 10 th wedding aniversarry then I have the girls gymnastics comp the following week and a full day weddin the following week then we r off to Scarborough for a week how am I supposed to do all of this I ask my self the pain is becoming unbearable and I know I am going to have to do something about it....... I just want to be able to get out of bed and take or pick up my kids from school instead of having to get other family or friends to do it :( sorry to rant ladies x
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Date: 01.06.2012
From: rhona
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Subject: Re: New thread for rhona and bsk
Hi Lynn, I am sorry to hear that you are still in so much pain, it doesn't seen right that you should have to suffer like that and with no medication, i do think you should speak to someone about it and explain that you have a holiday etc coming up and see what they can suggest. My hands are agony just now and that is with the medications, so i really sympathise with you having nothing, although i don't think they are working anymore, I am nervous about starting the infusions next week but i feel i have no choice. I sometimes wonder why it always seems to be the decent people that get all these horrible things and all the bad ones get nothing wrong with them. I hope you feel better soon Lynn, perhaps the rest will help. Take care xx
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Date: 01.06.2012
From: Lynnr
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Subject: Re: New thread for rhona and bsk
Hi rhona I phoned my rhumy nurse but she was on annual leave so I phoned my dr surgery and I spoke to the on call dr and he said he would give me a steroid jag and that it wasn't right that they expect me to have to wait 7 weeks with nothing before I see my rhumy I feel very let down by my rhumy team.
He also gave me slow realease tramadol to take along with my normal tramadol to help with the pain so I shall see how those work. I bet you are nervous but as you say what choice to we have and it's true about all the good ppl getting all the bad things it makes me quite angry at times but I suppose we just have to grin and bear it not much else we can do. Hope you have a lovely weekend and keep me posted about the infusion. Take care rhona x
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Date: 01.06.2012
From: rhona
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Subject: Re: New thread for rhona and bsk
Hi Lynn, I am so pleased that you have been given some help, 7 weeks is far too long to wait. My appointment was meant to be 19th june but i couldn't wait til then and i had to call the hospital so i am grateful they fitted me in earlier. I am nervous about thursday but this is no use, i went out with my daughter today and i could hardly get in and out of the car so i really hope this helps, i've had loads of steroids jags recently but i feel if you need them then you have to get them. I hope you feel much better Lynn and enjoy the holiday weekend and the sunshine. xx
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Date: 01.06.2012
From: Lynnr
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Subject: Re: New thread for rhona and bsk
Yeah I agree it should be up to us to us to say if we need a steroid not someone who has never felt what the pain is like I'm back in bed the maxi tram r quite strong and mixed with everything else I've been taking I'm feeling quite sleepy try not to worry too much about the infusion ur have made ur decision and hopefully it will work wonders for u I know it's easier said than done I will be thinking about u x
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Date: 01.06.2012
From: rhona
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Subject: Re: New thread for rhona and bsk
Thanks Lynn i appreciate that. Hope you feel better after a good rest. Take care xx
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Date: 01.06.2012
From: bsk
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Subject: Re: New thread for rhona and bsk
Hi Lynn, pleased to see your gp has helped you. I agree it is wrong to leave you in pain like that. 7 weeks is a long time if you have pain, I know cos it was agony while I was waiting for my first rheumy appt, I think I must be very lucky with my hospital as they are very responsive, esp the nurse. Hope the steroid kicks in and the tramadol gets to some of the pain. It's probably not a bad idea to sleep and rest as much as you can if you have so much coming up. Rhona, I am sure you will be fine on the infusion. I would be nervous about it too but there is a limit to how much pain you can put up with. I didn't want to go for the hard core drugs no choice really. Have a good weekend. xx
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Date: 02.06.2012
From: Lynnr
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Subject: Re: New thread for rhona and bsk
Thanks bsk well after what I would call not a bad nights sleep I have woke up still in agony too soon for the steroid to kick in but I do think that adding the maxi tram with my normal tramadol have helped I was very woozy but I know it will just take time for me to get used to them I'm going to get breakfast soon and take my morning 1 thanks both of you it helps to know you care Have a lovely weekend and bsk I will be taking this weekend slow Take care xx
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Date: 04.06.2012
From: Lynnr
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Subject: Re: New thread for rhona and bsk
Hi ladies just a wee update I'm getting no better from my steroid in fact worse woke up this morning and I couldn't weight bear my left leg my hip is agony rhumy nurse still on hols so I had to take a trip to a&e back home with a set of crutches this whole thing is a nightmare I'm so fed up with it :( Sorry for ranting again!!! X
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Date: 04.06.2012
From: rhona
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Subject: Re: New thread for rhona and bsk
I'm so sorry to hear that Lynn, i think a lot depends on where they give you the jag and who does it, i have had a few that had no effect and others that made a huge difference. I know how you feel, i have been sitting around all weekend, i haven't even bothered to get dressed as i have been so sore, my hands are killing me and me hips are sore too. Surely there is someone else at the hospital that could help you. I hope things improve for you soon, will be thinking of you, take care. xx
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Date: 04.06.2012
From: bsk
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Subject: Re: New thread for rhona and bsk
Hi Lynn, sorry to hear you've had to go to A&E. What did they do for you there? I'm also wondering whether you were given a full dose of steroid or a half one. I've had the half one one occasion and it didn't do very much for me. Can you check with your GP as you might be able to have more if not the full dose? Are you taking oral steroids as well? That might be a possibility to get this under control. Rhona, I'm sorry also to hear you are having a bad time too. I hope you can start your infusion before too long. I've got a problem with one of my wrists but am doing ok. Did my second injection yesterday morning and managed to mess it up completely and had to chuck it out - that's two in a row! Only got one left for next week so can't mess it up next time. It seems to be helping to some degree and a friend told me at the weekend I looked much better. So far so good. Anyone watched the concert tonight? I thought it was terrible and switched over to watch Bond film! xx
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Date: 05.06.2012
From: rhona
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Subject: Re: New thread for rhona and bsk
Hi bsk, It will just be a case of getting used to it, especially after using the pen, the main thing is that they seem to be helping you which is great. That does make sense what you have said to Lynn, i have wondered at times if i got the full dose. I am going on wednesday to get my blood checked at hospital before getting the infusion on thursday, i'm starting to get a bit worried now, especially when i read about the side effects. I just watched the end of the concert tonight, the firework display was nice, i thought you would have been in the crowd taking part in all the celebrations lol. xx
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Date: 05.06.2012
From: bsk
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Subject: Re: New thread for rhona and bsk
ha ha! I would have watched the firework display if I'd known it was on. Did see a bit of pomp and circumstance with my father on Saturday as we came across the rehearsal of trooping of the colour in the mall. He loved it and I was able to stand,so that was a result!
I'm jubileed out now! To change the subject, you should remember the drug companies have to list every single side effect but it doesn't mean you will get any of them. If you are anything like me, the relief of not getting pain is worth the risk. I made that decision when I first got this illness as the pain is so extreme and debilitating. Also, don't forget you will be monitored and at the first sign of anything will be treated. So don't wait if anything happens,get on the phone!
I will be thinking of you on Thursday but expect we will chat before. xx
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Date: 05.06.2012
From: Lynnr
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Subject: Re: New thread for rhona and bsk
Hi ladies I checked with my gp and it was the full dose I had....just my luck the very first steroid I had did nothing but others since have gave me relief I'm in torture aching from head to toe the hospital told me to get on to my rhumy nurse when she is back on Thursday they didn't want to X-ray me as there wundnt be a rhumy to have a look at it so because I couldn't weight bear they sent me home with crutches so I had to get into a wheel chair which thankfully we have (it was my grans) so its not a good situation and these new pain meds that the pain consultant gave me the script is still not there and my dr r closed until tomorow as for the oral steroid I was on them briefly but my rhumy nurse keeps saying aw we don't want to give you steroids or your only 35 and too young I get angry because it should be my decision I'm the person that's suffering here, it's our 10th wedding anniversary tomorow and I'm due to go away to a lovely hotel frid and sat with my hubby I just dont know if I'm up to it :( Bsk I hope your next injection goes better but it's great your feeling and looking better and rhona try and not worry too much just keep saying to yourself you need this drug and hopefully it will work wonders I'll be thinking about you x Take care
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Date: 05.06.2012
From: bsk
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Subject: Re: New thread for rhona and bsk
It's a difficult one Lynn with the steroids. No-one wants to take them but they do get you out of trouble and I agree it should be your choice to take them to get you through a difficult patch. I find it hard to believe you are being left in this state. You could phone the on call doctor for the script and they often carry pain meds with them so might be able to do something for you today if you ring. By the way, many congratulations on your 10th anniversary! I do hope you will be able to get away as you need a bit of luxury right now. xx
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Date: 05.06.2012
From: rhona
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Subject: Re: New thread for rhona and bsk
Thanks Girls for the words of encouragement, it does help. I just hope it works this time. Congratulations on your 10th anniversary Lynn, i hope you manage to get away ok, it will do you good to get a break, you may need to get another jag if that one didn't work. Take care. xx
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Date: 05.06.2012
From: Lynnr
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Subject: Re: New thread for rhona and bsk
Thanks ladies bsk if I phone my dr or out of hours dr all they say or do is give me a voltorol injection which gets u about 4-5 hours relief and tell me to get in touch with the rhumy team and when I phone them I don't get much joy they have made me not want to call its terrible I feel much better tonight but still really sore I've started making a start to the packing its a nightmare not just me and my hubby's stuff the 3 kids to sort out as well I definitely do need a break so really looking forward to going away. Bsk it was from my consult last week with the pain consultant so I'm not entirely sure what he prescribed I did mention to my doctor about finding out they just told me I would need to wait on the letter coming through it's just 1 thing after another the now but thanks for your suggestions I will go down to surgery tomorow and see if there is any sign of it.
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Date: 06.06.2012
From: bsk
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Subject: Re: New thread for rhona and bsk
Sorry Lynn, of course you have exhausted all possibilities - just trying to suggest something that would help. I hope you get your prescription today. Will keep my fingers crossed. Have you got anyone who can help you with the packing? Happy Anniversary!!
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Date: 06.06.2012
From: Lynnr
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Subject: Re: New thread for rhona and bsk
Aw don't be sorry bsk it is always helpful as sometimes there is things you miss I'm just glad of the support and knowing that you will know how I feel really helps me, as for the script still not in surgery it's a nightmare grrrrrr
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Date: 07.06.2012
From: rhona
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Subject: Re: New thread for rhona and bsk
Hi Girls, well that is me had my first infusion of rituximad, i went in just after 10am this morning and left just after 4pm. It all went very smoothly there was no discomfort at all and no infusion reactions (so far) I sat in a big comfy chair with pillows the staff were excellent, checking BP and temperature constantly, then lunch was brought to me. I just hope it works. Hope you are both well x
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Date: 07.06.2012
From: bsk
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Subject: Re: New thread for rhona and bsk
Well done Rhona! So pleased it went well and I hope it works too. My knee has flared up badly today, probably because reducing steroids. Very reluctant to put then up. Will wait and see. Has the script come through yet Lynn?
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Date: 09.06.2012
From: Lynnr
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Subject: Re: New thread for rhona and bsk
Well done rhona I'm so pleased for you glad it went smoothly and no reactions I am away for the weekend there was no script before I left of Friday it better be there on Monday I'm having a good time and trying not to think about the pain but to be very honest I'm in agony but it is nice to get away take care I'll let you now when I get the new meds xx
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Date: 09.06.2012
From: bsk
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Subject: Re: New thread for rhona and bsk
Have a lovely weekend Lynn, you deserve it xx
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Date: 09.06.2012
From: rhona
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Subject: Re: New thread for rhona and bsk
Thanks Girls, I hope your knee is a bit better bsk and hope you have a good time Lynn. Take care xx
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Date: 09.06.2012
From: bsk
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Subject: Re: New thread for rhona and bsk
Thanks Rhona, feeling a lot better today!
How are you after your infusion? Any side effects?
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Date: 10.06.2012
From: rhona
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Subject: Re: New thread for rhona and bsk
Glad to hear it bsk. I've had no side effects at all after infusion (so far) anyway. Hoping i will feel a benefit in a few weeks but not sure how long it takes. xx
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Date: 10.06.2012
From: bsk
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Subject: Re: New thread for rhona and bsk
I think I overheard my rheumy nurse telling another patient it takes 12 works but don't quote me on that. My knee is much better today but hands still painful, though don't suppose all the gardening I did yesterday helped much! Trying to get out before it rains again.
xx
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Date: 10.06.2012
From: rhona
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Subject: Re: New thread for rhona and bsk
Thanks bsk, when i asked they just said it can take a while, i looked at the arthritis research site and they say between 2-16 wks but i have a feeling you are right. i wakened yesterday and my hand was the sorest it has ever been, thank goodness it's eased slightly today. take care xx
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Date: 10.06.2012
From: bsk
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Subject: Re: New thread for rhona and bsk
Hope it kicks in sooner rather than later. I've found the enbrel helped almost straight away so might be the case for infusion too. Interesting that with Mtx it never really worked for me, partially because I had to stop taking it so often due to infections. I feel this half dose of enbrel just might be the solution, fingers crossed lol! Also think the wet weather we've had lately hasn't helped. Am up in Glasgow week after next for family birthday do.
take care xx
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Date: 10.06.2012
From: rhona
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Subject: Re: New thread for rhona and bsk
I still take the mtx but i don't think it does anything for me but i have been told to stay on it and i am frightened i will get even worse if i stop. That is good that you feel the enbrel is helping, i think it does work quicker than some of the others. I hope the weather picks up for you before you come to Glasgow, it is just a weekend you are coming for?
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Date: 11.06.2012
From: bsk
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Subject: Re: New thread for rhona and bsk
More or less the weekend though might stay on to look for a car. Mine has died and can't find much here so might look around there for a small automatic. Mind you, it's a long way home lol!
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Date: 12.06.2012
From: Lynnr
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Subject: Re: New thread for rhona and bsk
Hi ladies how's things today? Rhona any improvements?? Bsk I hope your still tolerating the enbrel with no more infections, I am getting worse by the day the pain consultant that saw me and prescribed the pregbalin is on holiday so the script has not been signed so this is why I've not got it yet as for the pain I just can't handle it any more I called my rhumy nurse yesterday morning and she left me waiting until after 5 pm to call me back to tell me the rhumy is off til, Wednesday so she will call me in Wednesday afternoon, I can hardly bend my left hand the fingers r so swollen and sore I ache all over I will keep you posted.x
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Date: 12.06.2012
From: rhona
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Subject: Re: New thread for rhona and bsk
Hi Lynn, Poor you having to suffer like that.That is bad that the script hasn't been signed, you would think someone else could sign it. Did you manage to enjoy your weekend away? it's horrible having sore hands, my right hand feels like it is broken and my fingers are all swollen. I think the infusions take a while to work (could be a couple of months) but not too sure, i just hope they do, i think i will go mad if i get no benefit this time as it really wears you down. I hope things get sorted out soon for you, take it easy. xx
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Date: 12.06.2012
From: bsk
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Subject: Re: New thread for rhona and bsk
I'm shocked, Lynna, at the lack of care your rheumy department seems to offer. Any old doctor could sign the script - it will all be in the notes so I don't see what the problem is. If you don't get any help tomorrow, I suggest you call the consultant's PA and bet them to expedite it asap. Sorry you are both feeling so rough.
xx
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Date: 13.06.2012
From: Lynnr
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Subject: Re: New thread for rhona and bsk
Hi ladies I spoke to my rhumy nurse today and she says she will see me next Friday!!!! I can't believe them down there she says I wasn't showing much signs swelling and fluid but what they do not realise is I am mega thin and may not look as swollen as some but I am...... I'm in agony and my pain meds are still not here!!!!! Grrrrrr wot is the point really!!!! X
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Date: 14.06.2012
From: bsk
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Subject: Re: New thread for rhona and bsk
I'm so cross on your behalf!
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Date: 14.06.2012
From: Lynnr
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Subject: Re: New thread for rhona and bsk
Thank you bsk I'm really getting p****d off now excuse my language but I've been in agony for weeks now and ur expected to have to wait nearly a week and half to see someone it's a joke :((
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Date: 14.06.2012
From: bsk
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Subject: Re: New thread for rhona and bsk
Maybe you could complain through PALS at the hospital. I've never found them much help but some people say they are good! Or just ring the consultant.....?
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Date: 14.06.2012
From: rhona
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Subject: Re: New thread for rhona and bsk
Hi Girls, that is a long time to wait lynn when you are in pain, i don't know what to suggest. I am in extreme pain today, my back is agony, i think it is coming from my shoulders and my knee has swollen again and my hands are so sore. I hope the infusions are not making me worse. I was listening to the weather forecast, they say that England has to get a months rain tomorrow, hope it is not too bad where you are bsk. Take care and hope you improve soon lynn. xx
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Date: 14.06.2012
From: bsk
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Subject: Re: New thread for rhona and bsk
Hi Rhona, oh dear, I'm sorry to hear you are still feeling so rough. Are you still on steroids or have you stopped? Perhaps you could talk to your nurse about putting them up for a week or two? You shouldn't have to suffer like this, nor you Lynn. A month's rain tomorrow? Ye gods! As if we haven't had enough. The garden looks good but it's been grim this week. Thames Water has reversed the hosepipe ban here lol!
Take care. xx
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Date: 14.06.2012
From: rhona
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Subject: Re: New thread for rhona and bsk
I am still taking them bsk. I want to try and get off them soon though, especially now i am getting the infusions. xx
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Date: 14.06.2012
From: bsk
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Subject: Re: New thread for rhona and bsk
I can understand that but don't be in a rush to get off them while you are feeling this bad. Normally, I put them up for a three days and drop gradually down again. It has certainly got me out of trouble. But of course, you must follow your instinct :) It's chucking it down here already. it had better improve in Scotland for next week when I come up!
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Date: 14.06.2012
From: rhona
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Subject: Re: New thread for rhona and bsk
I might have to do that, if i am the same way tomorrow i might put it up a wee bit. Do you ever do it on alternative days, say one day at 7.5mg then the next day at 5mg. They haven't told me to do that but i wondered if that would be an option. Think it's to rain here this weekend as well so you might be lucky for next weekend. xx
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Date: 15.06.2012
From: bsk
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Subject: Re: New thread for rhona and bsk
I don't do that when I put the steroids up as it is better to give them a chance to work. You prob should ring your rheumy nurse for advice as s/he will tell you precisely what to do. I do alternate when I am dropping down though. Just been told to do that. x
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Date: 15.06.2012
From: rhona
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Subject: Re: New thread for rhona and bsk
I have just got out my bed, i felt bad today but feeling little better now, i have an appointment to see consultant on wed and infusion on frid so will try and persevere til then. Hope you well, have a good weekend xx
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Date: 15.06.2012
From: Lynnr
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Subject: Re: New thread for rhona and bsk
Sorry to hear your not feeling great rhona it's terrible we really have not had a great time of it with these so called excellent new drugs!! Well it's the weekend again and still no script I saw the dermatologist today who put me on a 3 month course of antibiotics and more cream for my skin and my blood results were back but I've to make an app to speak to her and repeat them it's probably my b12 I'll probably be heading for injections soon, I have a very busy week with my daughters gymnastics which isn't ideal when I feel as stiff as a board but needs must Have a good weekend both of you take care xx
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Date: 15.06.2012
From: rhona
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Subject: Re: New thread for rhona and bsk
Thanks Lynn, i must admit it is all starting to get me down, like yourself i am p..... off with it all.
If you do need the b12 injections they will make you feel better, it's a shame you have got to go on the antibiotics now. At least the kids activities might help to take your mind of things for a wee while. take care xx
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