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Thread: What a difference a small reduction in steroids can make and not a nice one either

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    Thumbs down What a difference a small reduction in steroids can make and not a nice one either

    I have been on preds for a year now for sjogrens, and on 5mgs for a large part of that (much higher to start with) - coupled with MTX injection and Plaquenil. Because I am steroid sensitive, I gained weight easily and cannot shift it on the 5mgs.

    I had pestered the Rheumy to reduce my steroids so I could try and lose weight, I must have been mad as everything was going as well as it could be in terms of symptoms and I should have been grateful.

    I went down to 4mgs and thought 'yes, this is easy' and then two weeks later I had a relapse, the dry lungs, rash coming back on my face, my feet - oh my poor feet feel as though they have been smashed with a hammer - havent had that since before I was diagnosed, it hurts to breathe and my pain is so high nothing is working.

    As I dont see the Rheumy for another 3 months, I put the dose back to 5mgs - that isnt the problem, he wont have an issue with that as I have altered doses before as long as I keep my GP and/him informed.

    What is the problem is that I have been back on 5mgs for a week now and I am still feeling so ill, weak, tired, in pain that I could cry, I am hurting now as I type this, I cannot go all night without drinking, I am due to have my flu shot tomorrow so god knows how I will react to that.

    I just hope I can climb back to where I was but who would have thought that a 1mg in steroid reduction could have turned things on their head like that.

    I never realised Sjogrens could hurt so much or make someone so ill to the point of my 'everything' hurting.

    Anyone else have any similar stories of reducing preds?

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    Hi Corella,

    The rheumy puts me on pred, when I am in bad flare, but only for a short time, he doesn't believe in a long term pred dosage. When I start with usually 60 mg, tapering every three days, I feel great, but as soon as 5 mg hit, the pain is back. I never take it long enough to gain alot of weight.
    I was diagnosed with Lupus and RA in 2006, but added Sjogrens last year, all three are the culpret for pain and breathing problems.
    I can understand, that you would like to loose weight, I would do the same thing, but it is not worth it? We ( women) need to put our need to be thin on the back burner.
    I hope, you can back to the way, you have been before, with much less pain.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    Corella (03-18-2013)

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    Hi Corella

    I am weaning off Prednisone (at docs advice as he thinks it may not be lupus but fibro) and 1mg can make a heck of a difference can't it! You're not the only one. I gained lots of weight and my personality changed - even at only 5mg I still experienced those problems. Now I'm down to 1mg and oh god do my joints hurt. There's no difference to my muscles but that old familiar joint pain is back. I'm determined to come right off them, have my next set of bloods and go back to rheumy and see if anything at all shows up because my bloods have always been vague, low positives or borderline - nothing to say YES it's LUPUS!

    You will climb back to were you where as you increase the pred again. I know a lot of us may complain about his med but perhaps its things like those that you experienced when reducing it that make us realise we're better WITH it, than without it; that the pro's outweight the cons.

    Big hugs, I know it feels like a battle you don't have the energy for right not but you'll get back there xx
    I spent 2 years travelling Australia. Check out my travel blog at http://travelpod.com/members/helenlear

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    Corella (03-18-2013)

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    Quote Originally Posted by Shine View Post
    Hi Corella

    I am weaning off Prednisone (at docs advice as he thinks it may not be lupus but fibro) and 1mg can make a heck of a difference can't it! You're not the only one. I gained lots of weight and my personality changed - even at only 5mg I still experienced those problems. Now I'm down to 1mg and oh god do my joints hurt. There's no difference to my muscles but that old familiar joint pain is back. I'm determined to come right off them, have my next set of bloods and go back to rheumy and see if anything at all shows up because my bloods have always been vague, low positives or borderline - nothing to say YES it's LUPUS!

    You will climb back to were you where as you increase the pred again. I know a lot of us may complain about his med but perhaps its things like those that you experienced when reducing it that make us realise we're better WITH it, than without it; that the pro's outweight the cons.

    Big hugs, I know it feels like a battle you don't have the energy for right not but you'll get back there xx
    I didnt think preds worked with Fibro, I have a mild positive ANA and raised CRP, Consultant last mentioned possible Lupus with Sjogrens overlap even though I am sero negative and he said what supports that is 'normal healthy people' shouldnt get pain relief from preds and also the preds make a huge difference to my dryness and as for the MTX injections, they help me so much although make me feel bad the day after. I think he believes me that I am sick, I cant fake my rash and swollen joints and I am sure he wouldnt put me on such toxic medication if he didnt believe me.

    Like you my bloods have been borderline, that is so annoying isnt it? I would pray for a positive result but doc says its like a jigsaw puzzle that can often take years to put together. I have no time for those that dont think I am sick any more - friends/family although it is normally family that do the disbelieving. I think it is sad that we have to want a positive blood test, my eye specialist said bloodwork means nothing to him as he has seen people test positive for Lupus and Sjogrens and display no symptoms and vice versa so he goes on treating and listening to the patient and not the blood work which helped me get my diagnosis.

    The fact that you are so much better on the preds, I bet there is something else going on other than Fibro. Do they normally give steroids for that? Here's hoping you get a firm diagnosis soon xxxxx

    Today I feel marginally better, I am having my monthly bloods done today when I get my flu shot, hope I dont react to the flu shot as i am on MTX.

    Yep, I have decided to accept my weight - or try to, I weigh 13.6. stone, am a size 16 on top and 14 below, I can squeeze into a 12 but that just makes me feel fatter and one thing I have learned, I have been so ill since reducing the preds, carrying a bit of weight is a small price to pay for being normal.

    Having an AI disease is like having an unwanted house guest, and I guess we are just going to have to learn to 'get along' and accepting all that goes with it - including the weight issues.

    Time to do some online shopping and buy something nice to make me feel fabulous (or try to.)

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    Sorry for the late reply Corella, I'm a bit all over the place at the minute.

    I hope you found yourself something nice? And I hope it helps you feel as fabulous as I'm sure you are! I'm not sure of my weight but I think I'm similar to you as I'm the same sizes.

    Prednisone isn't diagnosed for fibro as it isn't useful. The docs idea was that by reducing the pred we would know if it was working or not and therefore have a good idea if there was something auto-immune going on. Well, I've come off the pred and been back to see him as I have got much worse - the joint pain is giving me so much jip. But I don't get much joint swelling or redness. He said "I'm still skeptical about an autoimmune diagnosis" so he wants me to come completely off the pred (i'm honestly not looking forward to it, even though a few weeks ago this was my dream!) and see what comes up in my bloods. I'm still on plaquenil so if nothing shows up then i'll come off that and see what happens. It's such a long winded process. I also want to look into the possiblity of Drug Induced Lupus as one of my meds I take for bipolar disorder can cause it - it's very rare, but with my vague bloods and what not it's a possibility.

    Best of luck with the flu shot, i hope you continue to feel better!
    I spent 2 years travelling Australia. Check out my travel blog at http://travelpod.com/members/helenlear

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