Is this really ever going to get better? Is it really even PMR?
Posted , 10 users are following.
I saw my rheumatologist today she likes to see me once every 3 months and she always checks at least my inflammation markers. It's been a year this month since I've been diagnosed with PMR. And I started at 20 mg and I have gotten down to 10 briefly and I am now back up to 14 mg. I am very frustrated with my body and my rheumatologist is starting to think that this is not PMR. For two years before my diagnosis I had an elevated sed rate and I ran a low-grade fever in the mornings. My GP assumed it was because of my bad back so we did not act on it. But then when I came to him a year ago complaining of body pain and not feeling well he found that not only with my sed rate elevated it's so as my CPR. So he cucluded from that that I had PMR. It took 2 months to get in to see a rheumatologist and during that two months my body alternated berween aches and pains and the general feeling sickly to feeling normal. But I never had the pain in the shoulders or upper arms for the upper back. My pain was predominantly my upper legs. And of course my back hurt but it hurt anyway so it's hard to say if PMR was affecting my lower back. So based on everything I told my rheumatologist she puts me on 20 mg of prednisone and explain to me how to taper down. Over this past year I've learned so much from this group as well as other groups that I belong to and so when her tapering schedule was not working for me I asked her if I could do it my way and she said yes. Well my way was half of a milligram every two weeks. Doing it that way I was able to get down to 10 mg very briefly and then I got sick and spent four days in the hospital in May. Since they thought my breathing problems were allergy-related they bumped my prednisone up as high as 50 mg so when I got out of the hospital I really didn't know what to start on and the rheumatologist suggested I start at 15. (I went from 50 for 3 days then 30 for 3 days then 15). That was in May, now its September and I'm on 14 mg. I was at 13 and a half was due to go to 13 and I couldn't do it. I have horrible pains in my hands and it sometimes go up to my elbows and sometimes I have horrible pains in my lower legs from the knees down. Well just today I learned that a new MRI that I had done indicates that there's good reason to think that the pain in my legs is sciatica and not related to the PMR. Which leaves my hands and lower back that hurt. I know that I have OA in my thumbs and my neck and I know that I do not have carpal tunnel because I've been tested. So I'm feeling pretty confident that my hand pain is due to PMR. And when I taper down to low my body responds and my hands start hurting and then I start getting an all-over sickly feeling kind of like having the flu. After visiting with my rheumatologist today she wants me to try Gabapentin. I've already tried methotrexate and since my liver enzymes were up quite high for a long while I can't take it any more. I also am not able to take Ibuprofen. She wants me on something that would help inflammation thinking that might help me get my prednisone lower. But she's offered me Gabapentin twice and the first time I said noway because I know it can affect your memory. But this time I said I would try it and if it doesn't work I'm going to try Logic which will help reduce the inflammation.
I'm really sorry this is so long but I wanted you to know what's been going on with me. I am to the point where I am so tired of the pain in my body and I am so fatigued I have not got the energy to walk to the bathroom and back without collapsing on the couch afterwards. And yet maybe this is not even PMR. And if it is PMR why the hell can I not get my prednisone tapered any lower. Someone please tell me something that will make me feel better.
0 likes, 14 replies
Bethune amkoffee
Posted
Amkoffee, I'm so you are having such a hard time. I believe that there is a percentage of PMR sufferers who do not necessarily ever achieve complete remission, and continue to need prednisone or some other medicine that replaces prednisone. However, my understanding of PMR symptoms is that the pain is primarily in the hips/pelvic region/ and upper legs, and also the shoulders/neck and upper arms.
Could the hands be something else? OA or even RA? Sciatica can certainly cause nerve pain all down your legs, and stenosis also can cause nerve pain in many places.
I hope you find some relief.
Sorry I don't have more advice or helpful personal experience. I've had PMR for 6+ years and was only med free for 6 mos of that time. I've been on prednisone and tried Aravia, Methotrexate, Actemra and now Cimzia to help get me off prednisone. None have really worked.
celia14153 amkoffee
Posted
I'm fairly new to all this so more experienced people than myself will be able to help you. But I do know that lonely feeling of just you and the pain and the weariness, and just wanting it all to go away so that you can get back to normal. I am glad that you have a sympathetic rheumy who is prepared to try new approaches. Whatever the cause of your symptoms it sounds as if some are alleviated by Pred, so do you need to taper further while investigating the others? I give you a big and very gentle virtual hug and say that you are not alone
Sheilamac_Fife amkoffee
Posted
Oh Amkoffee, you are having a really horrible time! Did somebody tell you that PMR would be gone in about a year? It's more like 3-5 years with some exceptions. One year is nothing to PMR, I'm afraid. As the Prednisolone doesn't treat it, just deals with the inflammation while we wait for remission, you have to take enough to keep the pain away. If you still have so much pain, you aren't ready for the low dose you are trying to reach. PMR is in charge not us and certainly not the medics. What is the rush? Acceptance helps a lot, I found. Not a whole lot of new drugs with their side effects.
As to whether you have PMR or not. Did the steroids help initially? If the pain went or about 70% went then it's likely you do have it. You cannot take less steroids than keeps that pain away.
Personally I have been on steroids for just over 3 years and am at 4-4.5mg right now. I have had P MR for almost 4 years, but I believe it may be going into remission now. I need the steroids to slowly decrease while my adrenals start to work properly again.
We all have different experiences but you can't rush it. It seems to take longer if you try to.
Good Luck!
Sheilamac_Fife amkoffee
Posted
PS
steroids are the only drug that controls the inflammation but you have to take enough of it.
and Ibuprofen doesn't affect PMR pain but we mustn't take it alongside Steroids because of its effect on the gastrointestinal tract, so it's not an option anyway.
amkoffee Sheilamac_Fife
Posted
Well I can't take Ibuprofen anyway tell it's not an issue. And it might pointment yesterday my rheumatologist brought up taking ibuprofen for the swelling and I reminded her that I can't take it. So evidently she doesn't know that it's not a good idea to take with prednisone.
And I'm sure you're right, I'm rushing this. I just have had the year from hell and I blame it on PMR. It seems that everything is going wrong with my body ever since my diagnosis. I don't remember if I mentioned in my comment but I just went through it tongue biopsy and had to wait two weeks for the results which were negative thank God. But it was the longest and worst two weeks I have ever had. It really wreaked havoc on my body.
EileenH amkoffee
Posted
Of course it did - PMR and stress don't make good bedfellows!!!!!
may66088 amkoffee
Posted
EileenH amkoffee
Posted
Why can't you get your taper lower? Because everyone is different in their response to pred and also everyone absorbs different amounts (the bioavailability). I may absorb 90% of the dose - you may only absorb 50% so if we are both taking 10mg that is a massive difference in the effect we will get. You've also only been on pred for a year, and you probably had ongoing PMR for a couple of years before. Patients who have been misdiagnosed or ignored often have a harder time getting things under control - it took me a good 4 years to get reliably below 10mg prednisolone. When I was switched to Medrol even 20mg didn't do as good a job, plus the side effects were awful. With Rayos/Lodotra - I'm cooking on gas! And you have had a serious illness in the meantime - that is bound to have set you back.
Have they said WHY you have sciatica? PMR plus myofascial pain syndrome can cause pretty good going sciatic - all muscular - but you say there is MRI evidence?
Someone has suggested the hands may be something else - hands and feet can definitely be part of PMR. The Leeds research group looked at inflammation in hands and feet in PMR patients - yes, part of PMR.
Sheilamac has already said a lot of what I would have said. I know it is dispiriting but PMR doesn't go away quickly. Less than a quarter are off pred in 2 years. Half need up to 4 to 6 years, and Italian study found that one third of patients overall still need some pred at 6 years, whether they had been put on methotrexate or not. And a quarter of us need it for longer. even for life.
Fighting against it, messing about with other drugs in an attempt to stop the pred, often makes it all harder. If the rheumies would accept these facts and stop worrying so much about the pred we would benefit a lot. Gabapentin is unlikely to help PMR - it MAY help other things but I wouldn't hold my breath. I accepted a long time ago that this was a long journey and I won't compromise. I take the pred I need and I reduce VERY slowly. I have flares - but never because of over-reducing, it is an increase in disease activity. That's the way it is. But I live well with it 99% of the time. When I have wobbles it is nearly always due to something else.
amkoffee EileenH
Posted
As always Eileen you are full of good information. I did just get an MRI and it shows that my back has gotten worse since my last MRI which was many years ago. I have most of my discs from my thorax on down to my lower back have bulging discs. When I first started with back pain it was only two discs in my lower back. There is some impingement at some of those discs locations. No significant impingement though. There were a couple other findings but none of those had any bearing on back pain.
And it was interesting to know that a body can only use a certain amount of the prednisone and that it differs from person to person. Because it's the same way with opiates. Which is why some people require a much stronger dose of opioids the another person would need.
EileenH amkoffee
Posted
"Which is why some people require a much stronger dose of opioids the another person would need"
Exactly - and they don't get their underwear in a knot when one person needs a higher dose - so why do it with pred? Pred at least isn't addictive...
Anhaga amkoffee
Posted
Amkoffee, what a mess, I'm so sorry you are going through this. Have your doctors run all the other tests they should do before confirming that PMR is the right diagnosis? I get the impression that PMR is what you have once everything else has been ruled out. At least that's the theory, I'm pretty sure not many other things were checked for me because I had the sought after miracle response to pred, but you are still in pain although your dose is really what you'd expect would work for PMR. I also would question the wisdom of messing around with other medications which are shown to be less effective for PMR than pred is before having more investigations done.
I did have pain in my lower legs when I was reducing pred, and all my doctor said was she wasn't worried about it and after I figured out if I kept my legs warm at night I didn't hurt I didn't worry any more either. But I didn't have pain elsewhere, and certainly didn't feel I had the flu.
Why not look up polymyalgia rheumatica differential diagnosis and see if there's anything there which matches your current slate of symptoms?
Hope you feel better soon.
amkoffee Anhaga
Posted
I like your idea of looking up PMR differential diagnosis. I'll have to see what I find.
daniel08939 amkoffee
Posted
I am on my second adventure with PMR and I believe from both experiences:
# Reducing from any starting dose to 10 mg is easy
# Reducing from 10 mg to 5 mg harder - 1 mg/month works
# Reducing from 5 mg to zero is extremely hard
The final reduction, 5 mg to zero can take three times as long as the first two reductions. One mg a month may be two fast. I am currently planning 1/2 mg a month and if pain returns I will move up to the previous level and stay there for another 30 days.
From 2010 to 2013 I had PMR and reduced prednisone to zero and never had a flair From 5 mg to zero took 743 days. That is almost 5 months for each 1 mg reduction. I am not suggesting that is a good reduction schedule but I am stating that from five to zero has to be done with great caution. 1 mg every two months or 1/2 mg per month seems to be a reasonable approach recognizing that if pain returns to have to revert to the higher level.
Anhaga daniel08939
Posted
I agree completely, Daniel. Until I unfortunately tried to speed up my taper I'd done just as you did, and it took a little over a year to get from 15 to 3, then another year to get from 3 to 1.5. Back at 3 now because of ill-advised effort to go to 1 mg too soon. A whole year of tapering lost, though hopefully it won't take another year to get back to former low dose. 😕