New to PMR (possibly) with some questions
Posted , 5 users are following.
Hello everyone. I'm hoping someone out there can help me. I have a possible new diagnosis of PMR. I say possible because we don’t know for sure. My labs were normal. I am 49, I will be 50 next month. My symptoms are all consistent with PMR and the onset was very quick. It got so bad so quickly that I couldn’t even walk. My doctor has referred me to a rheumatologist but I do not get into see that doctor for another six weeks. In the meantime my doctor started me on prednisone. I had an immediate dramatic response. Within hours. The problem is, I was started at 60 mg which I know is high. I tapered by 10 mg every three days. By the time I got to 30 mg my symptoms were almost completely gone. As soon as I went to 20 mg I noticed the symptoms were not quite as well-controlled but I did have a few days that were symptom-free. However in the last week and a half I have had several days of what I would call a flareup. I increased to 25 mg of prednisone and this is now day three. I am still stiff and having some muscle pain. Granted, not as bad as 2 days ago. My question is is this even normal? It seems to me like the dose is awfully high, shouldn’t I be having better relief of my symptoms? And the ultimate question that I really have that no one has been able to answer, is should I be expecting complete relief from all symptoms if I am on the correct dose of prednisone? everything I’ve been reading sounds to me like one can expect to be completely symptom-free but I don’t know if that’s really true. Absolutely my symptoms are probably 90 or even 95% better than they were in the beginning. But I am concerned that I really did have a couple days that were symptom-free and all of the sudden symptoms are back. I have some stiffness in my neck and shoulders and thighs and I also have muscle pain in my thighs and biceps. At this point I’ve been on prednisone just over a month. thank you for any input!
0 likes, 4 replies
nick67069 kelly85331
Posted
You are correct, for PMR starting dose is between 15 and 25mg, so you have started way too high. When you had temporary all symptoms gone, that was unusual, not typical. Most patients have improved condition and 75+ symptoms gone. Very few lucky ones have all symptoms gone. It is also important to change your lifestyle. PMR is debilitating condition and you cannot just go back to doing things as before. Need to pace yourself and find out what your new limitations are and accept them, or you will constantly go back to the beginning, with flares. One needs to be patient with PMR. It is a condition that average treatment lasts 5.9 years, not just a month or two. So, settle at one dose ( say 25mg) and be mindful that your muscles are not as strong as before and you may get tiered quickly. I would stay on the same dose until you see rheumatologists ( which now is only few weeks away). People usually stay on the starting dose for 4-6 weeks to clear all inflammation before starting to taper. And when you start taper, do it in smaller steps, no more then 10% of the dose ( which is 2.5mg at this point). Hope that answers most of your questions.
kelly85331 nick67069
Posted
Thank you for your quick reply! Thats very helpful. Everything i’ve been reading has led me to believe that the symptoms should be basically gone. I kind of didn’t think that could be correct but I wasn’t sure. I really did not know what my goal exactly was. So in the months time I’ve only had one or two days that I would consider symptom-free. But still I did have a few days so that is good. I’m thinking the drop from 30 mg to 20 might have been too much. my doctor had told me to stay on the 20 mg until I see the rheumatologist but when I saw him I was actually having a good day. I’m thinking maybe I should go to 25 mg and leave it there as long as the symptoms are manageable. I think I was a little bit overstating when I said I was 90 to 95% better than I was before but definitely 80 to 80% better so that sounds like that’s a good target. i’m concerned about staying at the 20 though because the symptoms I’ve been having while at 20 mg is definitely more than I was having at any other time. That’s why I increased myself to 25. Originally I had thought I would stay at 25 for a few days or a week and then go back to the 20 but now I’m wondering if I should just stay on the 25 until I see the rheumatologist. Does anyone have an opinion on that?
kelly85331
Posted
Wow. Reading that makes me really sound like a rambling dolt. Basically what it boils down to is that I'm new to this and dont know what to expect. it appears that my expectations were a tad high. Any insight is appreciated 😃
EileenH kelly85331
Edited
There are doctors who will tell you you should be pain-free and totally back to normal once on pred - it is rubbish. Some people may be pretty well pain free, most get something better than 70% improvement quickly and that is what you look for. But that is for up to about 20-25mg.
I wouldn't be surprised if some of your problems are due to the start at such a high dose and then reducing so quickly. 30mg is a bit high as a starting dose but from here on you should be tapering in steps of not more than 10% of the current dose - 2.5mg each time and not more often than every 3 weeks or so. Going down by 10mg was 33%!!!
The pred is just a management strategy - the actual illness is still ongoing and the pred is relieving the inflammation to relieve the symptoms it causes and allow you a better quality of life until the underlying autoimmune disorder attacking your body and causing your immune system to attack your body and cause trouble. As a result your body is dealing with something like a really bad cold and you wouldn't expect to feel tip-top then - same here.
But you also have to do your bit regarding management - pacing and resting appropriately are also part and parcel of living with PMR whatever dose you are at.