Hi there does anyone have experience of RA "breaking through" relatively high dose pred? I went to bed ok and woke up with a raging fever and unable to move - as though I was on nothing at all. And I hadn't reduced for 5 days - was due to go down one more mg tomorrow. Does anyone know what this means? I feel at the end of my tether .
Sorry Again to be so upset but I just don't know what to do or who to talk to.
Thanks in advance for any help you can give me.
When you cut down on steroids y0u must take a good while to reduce. It takes months to actually come off steroids not weeks or days as i had found out when i did it the first time. Sorry your suffering and this is all i can add. Big gentle hugs from me.xxxxx
If you have a raging fever then are you sure you haven't got an infection of some sort? Steroids can lower your immunity and make you vulnerable. Odd really since they are great at reducing inflammation, but all the drugs we take have pluses & minuses.
Anyway, if your temperature is high then try to get a doctors appointment.
I hope things are starting to improve as the day goes on.
Hi, Sorry to hear you are feeling so rough. Do you have a RA nurse specialist helpline I have used this service before and they have been great and spoken to my specialist and got advice for me. You could have an infection or it could be a flare up of your RA, is there a trigger for your flare up? Did you have a busy or stressful day yesterday? I know certain foods and stress cause me to have a flare up regardless of what meds I am on but sometimes it is just our bodies way of saying I need to rest so try to enjoy a duvet dy and I hope you are feeling uch better soon.
Thank you. I have been working full time through all this and behaving as though there is nothing going on even though I know it is a"mask"because of the pred. I had to stop silfasalazine last Monday because of high liver numbers and back to the drawing board with just pred .due to see the registrar on Friday. I took a naproxen and things have calmed down somewhat but at 3 am I literally could walk or move my hands. Could it be anything to do with stopping the sulfasalIne??
Yes, that sounds quite likely to me. These DMARDs work gradually, so we don't get a dramatic improvement like with steroids, and sometimes we don't think they're doing much until we stop taking them... 
Hopefully the registrar will put you on another DMARD quickly. But talk to your GP about whether you can take extra NSAIDs or anything else to see you through.
Thanks again to everyone. I have calmed down a bit now. i am struggling badly to have an acceptance of my situation. I have taken a naproxen and seem to be able to move again but wow
I sweated so much as it kicked in and brought my temp down. Difficult to accept the idea of ones own body being out to get you. I think I am depressed. Feel tearful most of the time and have even called the Samaritans twice. Do you think I will always feel
This way?
Xxx
No you should not always feel this way. Unfortunately it takes time to find the right drug or combination of drugs to control this disease and because of the time they take to work it does seem like ages and ages. Keep in contact with your rheumy team. If you recognise you are depressed an appointment with your GP may be needed as this disease goes hand in hand with depression as it changes your life so much but get the right drugs and things should be better. hugs Farm
No, I honestly don't think you will. A year ago I was miserable and down and angry and scared and felt like I was on a downward spiral. I wasn't suicidal, but a few times I did think that if it wasn't for my kids, it wouldn't matter if I died, and at least the pain would stop... But I started hydroxy in Nov, then mtx in Feb, and increased to 25mg in June, and now I feel MUCH more cheerful - I'm in much less pain, I feel like I'm gradually improving and my hope has returned! 
You need help to get your disease under control, and then I bet you'll feel much better!
Here, compare these two posts of mine...
Miserable 10 months ago: healthunlocked.com/nras/pos......
And really upbeat last month: healthunlocked.com/nras/pos...
Dear Flow
Thank you so much for taking the time to show me these two links. I so hope that my situation will change for the better as yours has. It is certainly encouraging. I probably wouldn't feel so bleak if I didn't feel "it" advancing bit by bit even over the pred. I am seeing the registrar on Friday so maybe I will walk out of there with a plan!!!
Thanks again
You're welcome. I really hope you look back on this period in a few months as a bad time that has passed...
I'd suggest preparing for your registrar appointment, by making a list of all your questions and a few specific points you want to make and aims you want to achieve... From what you've said, that might include telling him clearly that you're in too much pain and you're not coping well, and you want to try an increased dose of mtx and some additional NSAIDs...
I'm going on hol so won't be around to hear how you get on, but I'll look when I get back!
Oh hun i am exactly the same. I think the steroids have a lot to answer for where our emotional state is affected too
I had that happen recently. I was in hospital for a couple of days for chest pain, they ran tests but found no problems. I had been off my methotrexate for several weeks. On discharge, the doctor prescribed methylprednisolone dosage, 6 pills the first day, 5 the next, 4, the next, down to 1 pill on the last day. I took all 6 pills the first day at once because I picked up pills late in the day and package said you can do that. The next day, I had no RA pain at all! I felt so great, that day I took 5 pills, then followed instructions in taking the rest. I noticed on the 4 pill day, slight pain was coming back into my joints. By the time I got down to 1 pill left, my joints had all returned to their painful state. Woke up with swollen fingers, hurting wrists and pain all the way up to my shoulders. Shortly after, my rheumatologist put me back on Methotrexate plus he told me to take the methylprednisolone 4mg pill each day. I took both, but noticed my condition got worse taking both, I got knee pain added to the mix plus my feet started hurting when I walked. So I stopped taking the methylprednisolone and now I think I'm starting to improve. It's only been two days off the steroid, but I think I will just stick with the methotrexate once per week for now to see how that does.
You're working full time, burying your head in the sand and in denial !!! And no i don't blame you at all. We have all gone through the various stages - yes it sucks. The consultant will diagnose you but fails to mention all the emotions you will feel along with the struggle. Try putting things in perspective, Find/try ways round things. Do things differently, use any aids where it be cutlery, walking stick, splints. Don't expect too much of yourself, be patient..... Above all no matter how bad it may get - Don't Give Up. Take care xxxx
Hello Hun bless you. I'm going through the same thing, I've been taken off all ra meds as I've not long got out of hospital where it was discovered that I have rheumatoid lung, so I'm currently only 30mgs Prednisone daily and will supposedly taper in four weeks gradually to a 10mg maintenance dose, my body is swelling rapidly, much as it did when first diagnosed with rheumatoid arthritis. I'm so scared of the pain coming back so full on. I'd only just got to getting to the toilet with my aides and adaptions fitted, only just managed to get in and out the bath using my bath lift without my children having to try dragging me in or out....I really don't want to go back there. But ultimately i won't survive long if I don't just stick with the prednisolone...sorry to be so morbid but I'm sure you understand the pain and discomfort that's coming from. So what do we do? Well in your case personally I would take 1 extra mg of Prednisone for today and contact your Rheumatology Helpline to let them know the tapering is not going as well as hoped and your ra is flaring, they will probably tell you the same thing to up the dose slightly to regain control of your symptoms then try again to go down by 1mg next week. Good luck x
WILL I EVER START TO FEEL NORMAL AGAIN ???????
So sorry to be here.
Can't get any help. Should I go to A & E? Am I just a big nuisance to everyone?
Could this be Measles ?? PLEASE HELP
