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.
I am unsure what exactly you mean by 'got off'.
Are you saying the the GCA was diagnosed two years ago and you are now off pred? What dose did you start on?
What date you 'got off' assuming you mean 'stopped pred'?
ESR & CRP are sometimes never raised in both PMR & GCA patients,
Sorry I am really confused here.
As LodgerUK has said we need more details?
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"!
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
Let me see if I can be more clear:
Was on 20 mg. Prednisone for Polymyalgia for about 1.5 - 2 years. Almost immediately after getting off the Prednisone entirely, I was diagnosed with GCA. Started at 40 mg., went up to 60 mg. and reduced down and back up and down again over the course of about 3 years. Took my last 1 mg. tablet on Aug. 24th. Body aches and weakness were not too bad...difficulty climbing or going down stairs or climbing in and out of cars. Now my muscles ache even more and more weakness. Tired and no motivation to do anything and I am a very active person, have been even through all the Prednisone. 4 mile walks (reduced to 2 after a back fracture) and 2-3 days a week of Pickleball. Doing nothing now due to lack of energy and body aches. Dr. does not think it's withdrawal, but I kind of do think that. Just wondering what others have been through after getting off long term high dose Prednisone.
Have you been checked to find out if your adrenal glands are functioning fully? You may need a maintenance dose of pred just for that for a while longer.
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.
Not yet. My appt. with Endocrinologist isn't until Feb, but Rheumy sent up my blood tests to see what he thinks and if he wants to get me in earlier. Was also thinking along those lines although I hate having to take any Prednisone at all. If it's just a matter of time, I can deal with the aches. Was just worried that it wasn't withdrawal from the Prednisone. Thanks for responding.
Don't know if this would be relevant in your case, but when I first started on pred, my GP (I've not seen any other medical ppl other than the eye doctor) said many patients keep a supply of 1 mg tablets even when they are "off" pred which they take as they need to. Eventually the idea is the need happens less and less often and eventually they don't take pred any more. It sounds to me like a continuation of a dead slow taper just to keep pred withdrawal or any lingering PMR in check until the disease is finally in complete remission. I haven't got to that stage yet, so can't vouch for its effectiveness, but it does make sense to me.
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
Hi Elizabeth, I had some pain off and on while on Prednisone so was up and down on the Prednisone. Towards the end, I just had weak legs when I went to stand up our of my recliner, but I was very active and playing pickleball then. Now my legs ache more as well as my arms and shoulders and extremities feel a little weaker. ~So do you currently have both PMR and GCA together? Usually while on Prednisone, if I had reappearing symptoms, I had to increase my dosage and work my way down again. Sure wish you luck. It is not easy.
That's a good and reasonable thought. The thing is, the very last pill I took after the dead slow method when I was 5 days off and 1 day on, made me feel worse than the days I hadn't been on any so am not anxious to try another one. Would not surprise me if that was my endo's recomendation. Just glad to know these symptoms probably are withdrawal and not something else. Don't know where you are on y our dosage, but with you luck with it. Thanks for response.
Your response to my query needs a much longer answer and a tiny bit more information please.
When you went into remission with your PMR, did you have any aches and pains or were you completely pain free?
If the former, then if it was still lurking and not in remission, this could explain the onset of GCA.
What was the date you were diagnosed with GCA. It is still unclear to me for how long you have been treated with pred for GCA. It is clear you stopped your pred on 24th August 2016.
I see you have you been referred to and Endocronologist for a Synacthen Test - is it possible your GP could expedite this test?
When you respond I will answer as quickly as possible.
I don't think I can be anymore clear than I have been with the exception of answering your question about Polymyalgia. No, when I went off Pred for Polymyalgia, I was not having any more pain. I was having headaches which is why I was biopsied for GCA. I've asked my Dr. if she thinks it can be my Polymyalgia coming back but my markers are clear. By the way, just out of curiosity since you asked for clarity about this, what does it mean in the UK when someone "gets off" something? Here it means they were on something such as a medication and then then they got off of it. How many meanings can there be?
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
I smiled at the 'get off', it can mean so many different things in the UK. Although a small island it has many accents and dialects. Even I can get confused just being 50 miles away from home.
Thank you for the answer re PMR. I did wonder if the PMR had raised its ugly head again along with the GCA. The ESR and CRP can and do not always be raised.
It sounds as though you have a good Rheumatologist and I sincerely hope that when this problem is solved you come back and tell us all the result. We live and learn.
I don't think I can help anymore except to say that I do hope you get
That's an interesting comment. I'd been finding as I tapered that at a certain point in the taper I also would find I didn't feel so great the day after taking the higher dose. I've reached my lowest possible dose for the time being, which seems to be 3. I didn't have any days when attemptng to taper to 2.5 when the higher dose made me feel worse. That could be another signal, one to keep in mind when I'm ready to attempt another reduction.
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.
Thanks lodger...your response evoked a smile from me too...those two words can be used here too as slang for something totally different...just didn't think anyone would go in that direction. 
Take care.