PMR 2+ Years
Posted , 5 users are following.
July 2014 diagnosed with PMR. Like most, I was blindsided by this autoimmune disease. I am allergic to Prednisone and have been taking another steroid, Medrol. I am down to 2 mg but can't seem to get below that. I have tried reducing to 1 3/4 a day (yes, I patiently cut the tiny pills) but that 1/4 mg less flares up my PMR. Yesterday had terrible pain in my right shoulder blade and aching leges. Went back up to the 2 mg and, so far I'm doing okay. (I tried reducing to 1 3/4 a few times but each time, I have to increase to the 2 mg). It is so frustrating because I cannot seem to lose the weight I have put on since I started taking steroids. Called Rheumatologist and she advised me to stay on the 2 mg until our next visit which is October 3rd. I want to get off these steroids as I fear it is starting to affect my bone density. I'm thinking of trying the reduction schedule suggested earlier in this post; New dose, old dose 4 days, etc.) Has anyone else tried this?
0 likes, 17 replies
Anhaga tpaggs
Posted
Maybe what you are on is what you need right now. Pred and its relatives don't cure PMR, just dampen the symptoms until the disease burns itself out in its own good time. All you can do to help the process along is to live as (boringly) healthfully as you can, avoid stress, get plenty of rest, and maybe try a few alternative strategies to help curb the inflammation, like anti-inflammatory foods and a few other things that work for some people.
You can help maintain your bones through diet and appropriate exercise and perhaps a few additional supplements like calcium, D3, K2, magnesium.
The dead slow nearly stop method is very popular and personally I know I couldn't have managed a successful taper without it. What dose of pred is 2 mg Medrol equivalent to?
FlipDover_Aust Anhaga
Posted
Good advice Anhaga!
If you need 2mg, so be it - it's hardly worth mentioning in the scheme of things and certainly doing you more good than harm at this point. I only wish I were down to 2mg after 2 years!
tpaggs Anhaga
Posted
2 mg Medrol is equivalent to 2 1/2 mg of Prednisone.
?I do try to eat healthy and I have exercised but not dilligently. I started walking 20 minues a day; that's supposed to help the bones. I have Osteopenia and have had it for several years. This past July, though I am still in the range of Osteopenia, there was a change in my bone density test. That could also be due to my age, though. I've cut down on red meat as I know that contributes to inflammation.
tpaggs FlipDover_Aust
Posted
Anhaga tpaggs
Posted
It seems that 2-3 years is the minimum to expect, unfortunately. In my own experience, so far about equal time undiagnosed and on pred, about 28 months total, I'm beginning to think there's a very strong emotional or psychological component. Not to say that it's all in our head, far from it, but I think that things other than medicine, diet and exercise do affect the progress or otherwise of our recovery. In other words, all of us should be in major "stress avoidance mode", at least as much as we can be.
tpaggs Anhaga
Posted
While I was told that stress does not cause PMR, it certainly doesn't help the situation. I am on Medrol exactly 2 years, 2 months. I must say that over 2 years ago, I was under a great deal of stress. My life is much calmer now and it's probably why I have been able to reduce to 2 mg. However, as my Rheumatologist indicated, I must try to avoid being around sick people, I must get the flu shot and my GP wants me to get the latest Pneumonia shot as a precaution, as well. (I already got the 5-year Pneumonia shot a few years ago; may be due for another. - Ugh!). The worst part of having PMS is that I nevery know when I'm going to get a flare-up. I can be perfectly fine one day and unable to move the next. I am 69+, I work and am pretty active, however, I get this sense of hopelessness when I get a flare-up. I thank God for my strong faith as that is what gets me through the tough days.
EileenH tpaggs
Posted
If only it were "just" 2-3 years. It isn't for the vast majority - about 25% are said by experts to be off pred in under 2 years and they are at a higher risk of relapse. About half take up to 4-6 years and the German rheumatology textbook says clearly that it is about 5 years. A quarter of us take longer - at a support group meeting recently I sat with 2 other ladies: 15, 13 and 12 years of PMR and still on pred.
Whoever told you stress doesn't cause PMR has never spoken to a lot of patients! It alone probably doesn't cause PMR directly - but anything that affects the immune system can play its part, be it environmental, chemical, trauma or emotional stress. They all affect the immune system and finally something tips it over the top and it goes haywire.
Think about it - do you do more on your good days? That is the most common reason for apparent short-lived flares: your muscles remain intolerant of acute exercise and if you over-do it your body will remind you - and it will resemble a flare.
tpaggs EileenH
Posted
My Rheumatologist told me stress doesn't cause PMR.
?I can't imagine having this autoimmune disease for 12 years! I guesss it's better than the alternative. I just hate not being able to control this, naturally; without taking steroids. I assume they are doing lots of research so as to determine the cause and cure. All of the sites I've been on say that doctors do not know what causes PMR nor is there a cure. They only know how to treat it.
Anhaga tpaggs
Posted
http://www.ncbi.nlm.nih.gov/pubmed/12148368
FlipDover_Aust tpaggs
Posted
In my case I would say that stress was a major contributing factor. It's well documented that stress affects the immune system.
And you're right, it's better than the alternative!
FlipDover_Aust tpaggs
Posted
I've had it for not quite 2 years, and I don't expect it to be gone any time soon (I wish and hope for it, but know that it's unreaslistic to expect it!).
EileenH tpaggs
Posted
Then he is misguided - most rheumies agree that stress has a role to play. It isn't a direct cause, no, but there are many many patients who finally developed it soon after stress of some sort - injury, emotional or infection - far too many for it to be ignored. It was just the final straw for their immune system.
And technically - they don't know how to treat it since treatment implies cure. All they can do for it is manage the symptoms, more or less successfully. Most autoimmune disorders last for life - RA, MS, Type 1 diabetes and so on. PMR is in many ways very similar to RA but without joint damage.
I had it for 5 years before a label was admitted - I worked out what it was and told the GP who had "no idea what it could be". My only real complaint there is that the symptoms can be of cancers and other very unpleasant diagnoses and I'm not sure they were considered. Even the rheumy wasn't happy to say PMR, he wanted something nastier. However, the 6 hour dramatic response to 15mg pred was convincing enough for a different GP who DID recognise the symptoms.
You can live with PMR without pred - but it isn't pleasant and is quite lifestyle-limiting. As long as you have a car you can live fairly normally I suppose - otherwise mobility becomes a real pain, literally and metaphorically! And the unmanaged inflammation in your body is continuing to do damage to your tissues, especially the blood vessels, and that puts you at a higher risk of other diseases such as cancers further down the line.
A lot of people swear by turmeric in cooking as an anti-inflammatory - it may well help you reduce your pred dose further. Capsules are also available but that is something I know nothing about.
tpaggs Anhaga
Posted
Elijo tpaggs
Posted
I was dx last October on a large dose resulting in no pain. I recently very slowly got down to 3.5 mg. but began having symptoms again, stiff, difficulty moving etc. I've gone back to six, 5 in AM and l mg. after lunch. I'm just happy I can function. There's no reason for you to stay low if you are having flares. It's NOT worth it! Good luck!
EileenH tpaggs
Posted
However you try to reduce, if you have got to the dose that manages your symptoms you won't get any lower if the autoimmune part of PMR is still active. As Anhaga has said - steroids don't cure anything, they just manage symptoms.
Two mgs is a very low dose and probably doing very little to your bone density - especially if you are taking vit D and calcium supplements which have been shown to reduce the risk. Inactivity is a greater risk factor for osteoporosis - and without pred, you are likely to be unable to be active.
I lost weight while still on above 10mg of pred - I've put on weight this summer while back at a similar dose for one reason and one alone: I was away from home and it was next to impossible to eat my usual diet. When I eat more than absolute minimum carbs I either don't lose weight or put it on if i am eating too much carb. Try cutting carbs drastically - you should lose weight. Pred changes the way our bodies process carbs - and deposits them as fat in the usual places...
tpaggs EileenH
Posted
The fat deposits that have been quite noticeable to me is around my neck; my upper and lower abdomen. The roundness in my face basically went away when I got to the 4 mg level. (I started at 16 mg Medrol, which is equivalent to 20 mg of Prednisone). I've had several flare-ups over the past 2 years and it wasn't pretty; couldn't walk, bend, etc. The latest flare up was the end of June when I contracted Strep Throat from the grandkids. After being on antibiotics for 2 days, the throat was much better but the PMR knocked me for a loop and it took about 1 1/2 weeks before I started to feel better (and of course, I had to up my Medrol and then started trying to reduce once again.)
EileenH tpaggs
Posted