Dx with PMG in January, 2017, on top of an existing dx of Parkinson's Disease. It's like a double whammy but I would have the PD any day in preference! Started on 25mg pred and now reduced to 2,5mg but my GP has missed the pain/dosage intercept - but I haven't. I think my GP is more concerned with the side effects of pred than my 8/10 pain experience. I run my own practice in clinical psychology and work has been a challenge to keep up but at the same time a valuable distraction. The challenge is to get over iT! At the end of the day, when IT'S gone, IT'S gone. Most likely never to return and without residual damage or scar. Despite the days of extreme discomfort, that's a prognosis I can live with compared to some septuagenarians I know. In 12 months, maybe sooner, I'll be back on my surfboard and running 10kms fun runs. I don't intend to submit to this rubbish!!!
Getting over IT!: Dx with PMG in January, 2017, on... - PMRGCAuk
Getting over IT!
12 months? Please understand that PMR doesn't follow a predetermined timeline. As it is you've done well but will need to go back to a higher dosage to get your inflammation under control. Also, not to be a pessimist but I am finding the lower dosage I'm on, the harder it is to taper. Hopefully it will be easier for you. I do find that I can enjoy some exercise. I started slowly and carefully built more into my day/week. You can do it even now. It's not a case of wait until PMR is gone and resume what you were doing before. You need to build the muscles and your stamina back up carefully. Good luck on your journey. I know a positive attitude always helps! 😃
Hurrah! For you Johnknox, I like your style and vim and vigour. My money's on you to get just where you want to be.
That was a precipitous reduction though mate - ouch!
It does feel like rubbish, doesn't it? And I certianly hope that in a year you are on that surfboard and out running. How wonderful that will be for you. However, in the meantime why are you living with pain that's an 8/10? Call me crazy, but I'd rather be on a higher dose of Pred and living each moment more in the 2/10 range. As I've learned here, it's not a race to zero but a lesson about managing symptoms.
Hi John,
What’s the benefit in having 8/10 pain on a daily basis?
You’ve obviously learnt to live with PD, which for most of us would be more scary than the PMR, at least we all know that PMR will one day go into remission (unless you are one of the very few unlucky ones).
You will get over it, and probably quicker than most on here, males do seem to have an easier time, but, and it’s a big but, PMR decides when it’s going - not you!
You may well be back on your surfboard and running in 12 months, and good luck to you, but if you need the Pred between now and then -take it. Any dose below 5mg is low (despite what some doctors may think) and gives you very little in the side effects line, but it does allow you to continue life.
You have accepted that PD is part of your life, I think you need to do the same with PMR. It’s not something to try and conquer, you have to realise that temporarily you have to live with it, so do that!
Acceptance doesn’t mean giving in, it means being realistic.
Thanks DorsetLady! Part of me is angry and I guess that's understandable for each of us. I shall get the dosage right as I'm barely functioning at present. But I won't lose my competitive approach with this thing. I enjoy the attitude of fighting it and am not at all depressed at the condition. Your advice is sound and appreciated and acceptance is an important factor no doubt!
Hi,
I think many of us were angry at outset, but that doesn’t really achieve much.
By all means be competitive, but as I said you have to accept that you cannot banish PMR just because you don’t like it.
You can learn to control it though - but sometimes that’s achieved by a softly softly approach and not a sledge hammer!
Hi there! Not super angry I guess but more confused about treatment. My GP that I must come off pred soon as possible as, in his opinion, the cure is potentially worse than the disease. Yet other advice on this site from contributors are of the view that negative side effects are not an issue and then there's conflicting views on that. What's the optimal pathway I wonder? An interesting search!
Hi.
Unfortunately lots of doctors have that opinion, but Pred is no worse than any other drug. Yes there are some unpleasant side effects but they are manageable. I started at 80mg so I know - and I lived to tell the tale!
No one knows how long you will have PMR, but whilst you have it you need the Pred - and at the correct level. You obviously don’t want to take too much, but no point in not taking enough!
Take care
The optimal approach is allowing the patient to take the dose they need and listening to a top rheumatologist in the field from the Mayo:
practicalpainmanagement.com...
Most GPs are terrified of pred - but getting you off pred too quickly will just result in a return of the symptoms. For an unknown duration. He may think it is worse than the disease - he obviously doesn't have PMR.
Not a lot to add to what the others have said.
Except to say that MAYBE your PMR will be gone in a year. But it is far more likely it won't. For 75% of patients PMR takes between 2 and 6 years to go away. The rest take even longer and 5% of us have PMP for much longer, even for life. I'd had it for 5 years without pred, I had 7 out of 10 on a permanent basis. For 8 years I have taken the amount of pred I need to function at a 1 out of 10, I have no side effects worth mentioning. Officially - no diabetes, no cataracts, no osteoporosis, gained weight and lost it all again (most of the weight gain was due to PMR and immobility not to pred).
As for pred side effects in PMR - read this from a top PMR rheumy:
practicalpainmanagement.com...
And you might find that acceptance of PMR and learning to work around it might well do you better than " I don't intend to submit to this rubbish!!!"
Thanks for the article. Interesting but I read some other comments and they suggest that their hip and shoulder deterioration was caused by the steroids and operations are necessary. Also, my skin is paper thin and tears at the slightest insult. I do accept my condition but I guess that's the anger coming out. Anyway, another day thank God!
The shoulder deterioration is fairly unusual although the skin problem isn't, many people have that to live with. Avoiding using soap products and moisturising a lot helps some. Double base or Diprobase products are useful.
But what I'm saying is that PMR lasts as long as it lasts - and that can be anything from 2 years to 6 years for 75% of patients and for the rest of us even longer. My PMR hasn't gone away in 13 years. You either take enough pred or you don't - and if you don't, the symptoms will come back.
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