does anyone know. Anyone that has had a complete recovery after taking prednisolone for approx a year. For pmr. I am asking when I come off the prednisone what to expect. Is anyone out there. Completely got there body back into shape to where it was before they took the first prednisone tablet. And also mental health. Completely returned to normal also internal organs. Completely recovered. Meaning are there people out there that are 100 per cent. Back to where they were before after taking it for about a year. And if so how long did it take.
I would be very grateful as there isn’t anything on the net about this. And that’s a worry
Would be grateful if anyone knows. Thanks
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zoey12
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It is very unusual for PMR patients to be able to get off pred in a year - and it isn't something over which you have any control, either you take pred for as long as the autoimmune part of the disorder is active and causing symptoms or you put up with the symptoms.
It is said about 1 in 5 patients is able to stop pred in a year - but that they remain at a higher risk of relapsing at some later date. There is no limit to the delay before a relapse occurs - it may be weeks or months, because the disease activity was very low and the patient stopped thinking it was inactive but then the inflammation built up again to a level that caused symptoms, or it may be years. Even 1 or even 1/2mg pred per day can be enough to keep the inflammation level such that there are no symptoms.
I have friends who had been symptom-free for several years before they relapsed. I have a few friends who have had PMR episodes twice with 3 or 4 years between but have now been symptom-free for several years again. Others seem to have relapses in the sense of increases in disease activity even without having been able to get off pred and then need to raise the dose. There is no way to monitor it except by symptoms - unsatisfactory really, there are other causes of the symptoms.
But there aren't many people on the forum with either experience really - most people want to forget a dark period of their life and go off to live life again. If they were able to start pred and get off it in a short time they often don't find their way here in the first place - in the earlier days of the forum we tended to be the resort of the patient who had outstayed their welcome at the doctor who was convinced that PMR never lasts more than 18 months to 2 years and if "it" did, "it" wasn't PMR. Now people find us much sooner so arrive before they discover it is lasting more than 2 years. Of course, the real experts know that is a myth - PMR doesn't know when your birthday was nor that you are celebrating too many anniversaries with it. PMR lasts as long as your version lasts - and there isn't a one-size-fits-all answer to it. Prof Mackie in Leeds, together with others, is working on that!
I suppose I forgot to address the other part of your question:
Has their body returned to its pre-pred state? Certainly some of them are out in their gardens as they were before. But it is very difficult for them to assess if there are any changes - they are a few years older and age - as is well known - doesn't come on its own. I have experienced the changes that can occur in a body in a matter of weeks due to age-related rather than pred-related events.
As a physiologist I'd say probably not - even a year of aging means your body has moved on. If you were on pred for more than a couple of years there is also that aspect to consider too - and while from 60 to 61 doesn't seem to make much difference. the older you get, the more happens in that year. I really don't think pred necessarily does tremendous damage to your organs and in some cases has protected them from damage by inflammation. and for some their mental state may not have been affected by the pred - but by the PMR and the associated inflammation. I really don't believe there are simple answers to the question you are asking.
Yes, age is a big factor in all this. It’s not a smooth journey either, the body changing in very different increments! I turned 70 in April and I feel like I suddenly fell to a lower floor and there is no way to get back up a floor. It’s not GCA or pred because I notice these sudden changes in others that happen in spurts.
Interesting - I turned 70 last week. I feel as if I fell off a cliff in February and have struggled ever since. I put it down to having had to hold everything together for OH - and now I don't. But being able to hold it together for me would be nice!!!!!!
It was so sudden I am wondering if it’s a problem of the mind. I told myself 70 was old and my brain accepted that. I know if I say the word diet I suddenly find myself eating everything in sight . I’ve decided it’s the brain controlling my actions in preparation for the coming famine.So, I’m going to try telling myself I’m 69 and see if I feel better 🤷♀️😂.
I think with what you have had to deal with, especially with family at a distance, is very difficult for anyone, but also things have been coming at us from all over the world which are out of control and can add to our distress....Hopefully by next year travelling et c will ease things, you are happy in Italy, that counts for a lot.........fingers crossed for you.......and all of us....
Thank you. A honest answer. Sadly yes even though I have been on pred just 7 months I feel I have aged a lot. Quickly. And most of my fitness will never come back. I am angry about that. As I am down to 2 mg and still not got pain. I wonder. Will it come back. Or did I really have it. Or something I read last week. I sub version of pmr. Brought on by. Vaccine s. Flu jab chest infection antibiotics all within about 1 year. Too much for body. Maybe. I will never know. Unless the pmr comes back then I will know. My go is useless. So I have shall we say. Doing a diy. Job. Reduced every 4 weeks then 2 weeks on 4 and 3 mg. thanks for your knowledge
His bio only tells the start of the story - in the autumn of 2019 he participated in a climb on Annapurna IV - the story of which you will find if you scroll down his posts.
That’s really great what he has done thank you for sending me the link. What people can do is fantastic I wish I had his determination. I will have to. Try and motivate myself. I am so angry for going on this pred and loosing my fitness and looks so fast. I really wish I just didn’t go to the doctors and didn’t take pred in the first place. Chinese medicine is my next move but looking into it a lot
If you hadn't taken pred you might also have been in a wheelchair as John was. Believe me, PMR without pred is no joke and you would have lost fitness just through that. I gained a lot of weight - because I was unable to exercise as I had previously. Just because a lot of people blame pred for everything doesn't mean it was necessarily so.
As far as I can ascertain the recent poster to one of my threads DeepThgought2 could be one such although I think he may have still been on TCZ but off pred. 55, male, living in Germany and a very fit cyclist, runner. PM him and ask
Hi,I have GCA, I was diagnosed 6.5 years ago and I’m down to 2.5 mg prednisone. From the start I changed my diet and made sure I walked every day. Right now I walk 4 miles (6Km) every day. I try to do some upper body occasionally. I’m in pretty good shape, however I know I will never be “completely” back to my former self because I am 6.5 years older now. Age is creeping in!
I was on Prednisolone for 9 months after my GP diagnosed polymyalgia, I felt terrible most of the time but had good days and bad days. It was 6 months before I saw a rheumatologist who said he didn’t think it was PMR and I should start tapering and go back when I was off Prednisolone. I have to say I was doubtful but was surprised that I didn’t have any bad side effects. Eventually had an MRI scan and diagnosed with bursitis. I finally ending Prednisolone in June, and yes, I do feel normal and have my energy back. I am 78 though so still get stiffness and a few aches and pains. Did I have PMR and managed to recover, I’ll never know but the rheumatologist discharged me. I am still wary though and won’t leave this forum, it was a source of great comfort during my bleakest moments. Good luck wherever you are on your journey.
Thank you for reply sorry it took so long. I am glad you are ok Interesting that you got off pred and don’t think maybe you didn’t have pmr after all. Yes you will never know. I think I am similar been on pred 7 months down to 2 mg never had any pains since I went on pred hopefully it won’t come back. I am reducing doing it myself as doctors is useless. They said at beginning to stay in 18 months. But why be on 7 mg. when I am ok on 2 mg. see how it goes. Or maybe I don’t have pmr. Or maybe I did and it’s ok now. I too will never know unless of course it comes back soon. It takes so long to taper off pred. I am feeling the effects of tapering at the moment x. Take care good luck
I didn’t have PMR, but GCA (undiagnosed for 18months) and on Pred for over 4 years.
In fact after being off Pred for almost 6 years, having 3 replacement joint surgeries, ageing 12 years since first symptoms, and being widowed during GCA, my mental and physical health is probably better than before.
I am presently at injections every 10 days (without any problems). Had a rheumy appointment today and he is very positive but also says there is no need to hurry. 14 day intervals from October and 3 weeks (if all goes well) beginning of 2023; and then next spring trying to stop. Sounds like a reasonable plan for me.
Yes! I had complete and total remission after 5 loooong years on prednisone (a lot of those years on very low dose 1-2 mg. I just couldn't seem to get off all the way w/o a lot of pain. Then suddenly, I stopped and felt fine. It's been about 6-7 years now. Occasionally I feel like I'm getting flares, but they've never been enough to get me back on preds.
Thanks for reply. Great glad you got off pred and have managed to stay off it that’s brilliant so you are back to normal health wise. Fitness etc. Do you think your adrenal glands have kicked in properly now or not sure. You know to Kerala your body working right. I hope so
As I remember (and it was years ago) I went to see an endocrinologist who did an adrenal function test as I was coming off the pred, and they were fine.
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