I tried dead slow method to reduce pred from 20 to 19 and am now in big flare up. My SED rate went from a high 42 a couple months ago to 53 last week, ouch. I also have a bad knee which got hurt so that I had to use the walker to walk, which made my arms, shoulders, legs ache more. And I also have sciatica pain in my left leg which is to be treated with an epidural in two weeks. I'm miserable. I had such hope and resolve and now I'm shot down. I can hardly finish this typing.
I know the frustration of the unpredictability that the pmr condition brings to the table, and I hope that your flare-up of symptoms doesn't last long.
I don't know your history with pmr or your pred dosage history, but have you been quick to make a minor adjustment to dosage whenever a flare-up begins?
I know that my doctor never mentioned any adjustments be made, only that I taper at 1mg per month, but when that stopped controlling my symptoms I took things into my own hands.
As years went by and I requested refills, the doctor by then knew I was using the pred by my own perceived need, and never advised me otherwise, so that's what I would advise others to do, while keeping their doctor informed. Especially with your injury, you need to keep as many of your joints as possible working effectively.
Best wishes in your recovery!
I had sciatica recently and had a fall my ESR went up to 58 and my CRP from 7 to 20. A month later my CRP had dropped to 9 but my ESR was 57 as it is much slower to catch up.
I know how you feel, I'm ready to hang it up too. I can't seem to get below 20mg prednizone, everytime I drop (1mg) I have a flare, pain plus it effects my breathing and I go into congestive heart failure. My RA put me on a new med 2 months ago (in the hopes of getting me off steroids) and 4 weeks into taking it, I had a very bad reaction to it (all the severe side effects); I ended up not being able to walk, I'm just now (4 weeks later) starting to walk a little without the walker or cane. My legs and arms are still very weak and if I do to much one day I have a lot of pain the next day. I guess we just have to accept the fact that we are now, as they used to say, cripples. I'm trying hard to keep a positive attitude, but it is hard. Here us yesterday's conversation with my husband, after my purse fell down my arm and tore the skin off. Me: I just can't take this anymore. I can't walk, I can't do anything, I just love going out with big bandaids all over, Husband: looking beautiful to me. Me: ankles like a cow, chipmunk cheeks and FAT FAT FAT to boot. Husband: looking beautiful to me. That is what he answered to all my complaints until I laughed. So laughter at ourselves is the answer, we are lucky, we are alive and not dying of cancer.
jeanne333, I'm glad there is at least one like me, unable to get below 20 mg pred, even though I wouldn't wish it on anyone else. I laughed at your husband's smartiness, sounds very like what mine would have said. He passed away a few years ago. One time I apologized to him for having gotten fat, and he said, "I don't see your fat; I just see you are a woman." Generally I am cheerful with people and animals through the day, but sometimes just drop in mood and cry and complain a little (maybe a lot?).
I always feel so much empathy when I read postings like yours as I have felt the same way as you and Jeanne who responded. The pain, the changes in life it brings, the physical changes all become overwhelming at times. Sometimes you just have to let yourself cry and rail against it and then you pick yourself up and keep going. It's a tough road but I always tell myself not to complain too much as things could be worse..... so many suffer so much more than this. At least we can share these things with one another here
and that helps a lot. You know the old adage " misery loves company" I'm hoping some relief comes your way. :-)
Debbie, " I feel like I'm liviing a stupid life, what should I do ? " Oh my, how often have all of us felt that - but you have been the one to say it out. Well done!
The next thing that occurs to me it that you must be fairly new to the PMR experience. (?). I'm sure someone who knows more than I willl advise on your Pred. reduction but the principle seems to be that if you have a flare after a reducing, then you may have been attempting to reduce too quickly and you should go quickly back to the dose where you were fairly comfortable (20mg.?) and stay there for while before you attempt another reduction. . . .
Back to feeling bad again - I think that depressed feelings are part of the PMR thing. I certainly became depressed, especially for the first few hours each morning where EVERYTHING was too much for me, even the simplest task. When I wasn't feeling this way, I felt quite high and agitated . . . I all improves, but it takes time. My brother is a GP and he confidently states that "after 50, the wheels start to come off the wagon" what he means is that older people's disorders can appear, indeed should be expected- and that we should be thankful today that we can avail of what modern medicine can offer which can greatly help.(Hope you're not 29!) At the time of my PMR diagnosis, a close friend was diagnosed with agressive breast cancer and she's not doing well. This fundamentally altered my perspective. PMR, arthritis, bad knees etc are treatable and unless you have a serious fall or accident none of these will kill you. Pleas try and be more positive , even sometimes, but it's also just fine to have a really good moan - and you were a lot braver than I to do it here!! Kind thoughts to you, J
PS. Samuel Beckett - " I can't go on, I'll go on."
Sorry to hear about your Husband .. at least I have mine to help me thru this .. I was always thin (wore a 6 or 8 USA size) untill I had a massive infection 18 years ago and since then I've been off and on steroids at least 6 months out of the year .. now my husband has gained another me .. lol .. I now wear plus size 18 to 20 USA size .. my Baby Sister was always on the pleasenly pump size (18 to 20) and was always going on a failed diet .. she used to say .. If the weight "really" bothered me I'd give up my Nutter Butters .. she passed away and a year later her husband married a woman the same size .. so love is in the eye of the beholder .. may God never take our sense of humor away from us ..
I feel so bad for you!! In my 2+ yr. battle with PMR I have learned that anything and everything effects the PMR! All aches, pains, manifestations are part of the PMR. Nothing to be done but endur. Dan is correct tho...upping the prednisone temporarily real help....then you can swiftly adjust back down. Eileen would say....the PMR rules all....don't fight it...you are where you are...try to control the pain and the collapse of various body parts! Forget the reduction....you are not ready! My best to you on your journey...💕