Body Pain 4 wks post Prednisone
Posted , 11 users are following.
I just got off 3 years of Prednisone that started at 60 mg. for GCA. (Was on 2 years just before that for Polymyalgia was on 20 mg. Just got off that when GCA sarted. Have been off 4 weeks and am having severe muscle aches and weakness. My Rheumy thinks it unusual to go that long with withdrawal symptoms and that they are too severe, but blood tests all come out fine. Has anyone else gotten these issues after having been on high doses over a long period of time? Not sure where to go from here and need my life back.
1 like, 60 replies
renee39320 anapp
Posted
I'm off prednisone after 18 months of PMR. Lowered no more than 10% at higher doses, then 1/2 mg at a time. I have bearable aches and pains since lowering to 1 mg. my gp now tells me the aches and pains I have is "steroidal myopathy." My muscles weakened from the pred (ironic since we needed the pred because of muscle inflammation!). She suggested physical therapy and then exercise. Well I started PT last week, and I have to say I feel a bit better (psychosomatic?) my muscles hurt the rest of the day after PT, but the next day, after a nice night of sleep, I feel better! When I have these aches and pain, I just think of it as my "new normal"!
Oregonjohn-UK renee39320
Posted
Good to see you have reduced at the correct levels.
You will need to keep up the physical activity - but slowly and surely is the name of the game - it's been a long time of pred and it takes a while to get your muscles back to somewhere near normal. Don't overdo it, a little and often whatever the weather, and you will get there.
I'm still on at 1.5 mg and am steadily increasing my walking to regain my muscles but it's very frustrating! Best of Luck, John
anapp renee39320
Posted
Thank you Renee. When I was on 20 mg and reduced down (up & down during period of 1.5 years, I had no withdrawal symptoms at all. I can see where PT might help you because I find when I can muster up the energy to do anything, moving around seem to loosen up the muscles although movements such and up and down stairs and getting out of a chair are still difficult. Just trying to determine if this iin indeed withdrawal since Dr. didn't seem to think so.
elizabeth20640 anapp
Posted
Hi anapp were you completely pain free, when you were on pred?
I started off with flu like symptoms pain in neck on movement and then developed pain in thighs that was January 2015. til I couldn't walk, was diagnosed with PMR and put on 20g pred, I was told to reduce in 2 weeks, when I was down to 12.5 pred, I developed jaw pain and severe headaches,
I was admitted to hospital and had positive biopsy and dose increased to 60 and developed sight problems which was so scary, so dose increased to 80mg pred,
I'm down to 6mg but still have neck pain
And pains in my thighs have come back in last 5 weeks, so it's hard to know what to do. Take care
anapp elizabeth20640
Posted
elizabeth20640 anapp
Posted
Not sure if I had PMR or was it GCA from start, like pain in my neck when moving my head and then thigh pain like couldn't get out of bed or get up out of chair, that's what I started off with, but when they put me on 20mg pred and pain disappeared,
It was only when I was coming down dose or maybe reduced too quickly, that I developed I went to eat and couldn't open my mouth, and then I noticed arteries at side of temple bulging out and then severe headaches, I was admitted to hospital, had biopsy and diagnosed with GCA, I was fine leaving hospital no pain at all,
Next day developed bad headaches and went back to hospital, they didn't want to increase dose so prescribed painkillers, did nothing, pain so bad I couldn't put my head on the pillow, then the sight went in right eye so scary 15 mins it lasted,
I went back to hospital increased my dose to 80mg and had a couple episodes wher sight went. But they did an eye exam and said it was temporary, so lucky, I value my sight so much now, when I go walking I take in all beauty of everything,
I'm down to 6mg my ESR and CRP have gone up slightly so I was going to wait 2 weeks and get another blood test and if it goes up any further I wi increase the dose,
wish you well and let me know how you get onX
anapp elizabeth20640
Posted
Definitely sounds like PMR at the beginning. 20 mg. made my PMR pains disappear too. Took me about 1 1/2 years to get off Pred. for that. I cannot believe they diagnosed you with GCA and let you out of the hospital without Prednisone. 80 is a horrible dose. I didn't have to go higher than 60 but my Dr. split it 30/30 a day because when I was on only 40mg. I thought it would kill me the effects were so bad. It felt like every organ in my body was going to explode. So you totally have my sympathies and I hope things go better for you from here on in. My markers for PMR and GCA were good so I don't really know what's going on here but will keep you posted. Thanks and good luck.
elizabeth20640 anapp
Posted
Hi Anapp, no when I was in hospital the rheumatologist increased my dose from 12.5mg to 60mg pred so I was on 60mg when I left hospital, sorry I didn't explain that very well
anapp elizabeth20640
Posted
Welll, have had my Adrenal Gland/Cortisol level test and all was good. Drs. have no idea why I'm having such weakness and pain in my muscles. I think they don't think it's withdrawal but they have decided i should go back on 1 or 2 mgs. to see if it helps. Sure hope so because pain and energy level are so restrictive. So much to do and too tired to do it, not to mention physical inabilities. Hope you are faring better.
lodgerUK_NE anapp
Posted
Put 'Bowen Therapy' in the search box, top right hand corner on this page and read the thread.
It worked wonders for me.
sue-dorset anapp
Posted
Hi, I've been off Pred for a month now - GCA -started at 80mg four and a half years ago. No withdrawal symptoms, although a few pains from arthritis, but I expected them.
Inclined to agree with Rheumy that it shouldn't be withdrawal pains this far in, were you complete pain free prior to stopping Pred? What reductions were you making?
I did reductions of 0.5mg down from about 7mg, and on a slow reduction plan, and to date have been OK.
As others have said, could be your adrenal glands, so sooner you can get them checked the better.
Or maybe your GCA has not yet burnt out, so you may need to take a very small dose until it does.
anapp sue-dorset
Posted
Hi Sue, could definitely be adrenal glands but my endochrinologist is dragging his feet about getting me in for appt. I have been reading elsewhere that withdrawal pains can last up to a year so who knows. I maybe should have tried a .5 reduction, but I did 1 day off/1 day on. Didn't work so did the 7 days on/1 day off, reducing the days on til you're at zero and then up to 4 days off/1 day on and done. Obviously didn't work either. Guess I should have kept going. Not GCA I don't think as not having headaches...yet. Worried about PMR coming back though. Thanks for input and congratulations on getting of Pred with no symptoms!
Anhaga anapp
Posted
I don't think withdrawal pains last for a year - if they do it probably isn't withdrawal. I believe what people are referring to is the complete return to normal of the adrenals and the other glands which have gone out of whack because of pred. I've only heard of continued tiredness associated with this, not pain. If the fatigue is extreme and doesn't improve then you need the test, which I guess is what you're waiting for, to find out if your adrenal glands can produce their own cortisol again.
lodgerUK_NE anapp
Posted
You carry your Blue Steroid Card for one year, as it says on the 'tin' it can take up to one year to become fully functional. It is the trio that needs to get into sync - Hippothalamus, Pituitary and Adrenals.
The test is necessary for those of us who have been on high doses or longterm users. We have aged as we have been taking our pred. Best test I have ever had, 4 hours and I fell asleep after the first 30 mins in the most comfortable chair, warm room I have ever been in a hosptial. They woke me up with a cup of tea and gave me my book which had dropped on the floor when I had fallen asleep I then went home 20 minutes later. Best sleep I had had in ages.
Withdrawal symptoms, in my experience, usually settle down after 5 or 6 days. Mind not if you are trying to stop smoking
anapp lodgerUK_NE
Posted
Have my Cortisol level test scheduled for Tuesday. They take blood, inject something 30 minutes later, then another injection an hour later or something like that. Not looking forward to it. Great that you could fall asleep.
As for withdrawal symptoms, mine have always extended beyond the normal time frame as I lowered each mg. I hope it doesn't take a year now. So far it's keeping me from playing pickleball which I love and interfering in my group walks.
And no, haven't smoked for many a year. I don't have a blue (or any other color) steroid card. Never heard of it. Don't think it's done here Guess I should order a medical bracelet.
Anhaga anapp
Posted
We don't seem to have the cards in Canada either. But I ordered a bracelet. Bought a more expensive one, but, hey, I'm worth it, and if I was going to be wearing it every day for years.... The particular kind I have comes with a one time fee for a lifetime online health record where you can keep track of all your meds and health issues, and update as needed, and which a first responder or other medical person has access to through a pin on the bracelet. The style I chose is not obviously a medical id bracelet.
anapp Anhaga
Posted
You're absolutely right. And I should have had one all this time, but will see about getting one now since I am going back on Prednisone. However, I probably will get an inexpensive one. Good for you getting what you want.