Hi folks, Mark here. This looks like the right place for me. I was diagnosed with PMR earlier this year. I can't recall exactly when because although the pay started in early December of last year, it took some months before I was referred to a Rheumatologist (I had to wait several months for my appointment).
I was put on 20mg of pred and started feeling better, but then I started feeling terrible...mostly fatigue. Time went by and several doctors and tests later and it seemed I was having a raging attack of Epstein Barr....Mono. That meant I had to wean off of pred entirely to let my immune system bounce back and put mono in remission. 8 weeks and an unholy hellish amount of pain later and I've just restarted at 10mgs pred.
I also have a sugar issue, but it seems I may have that under control. One story I'd like to come across here is someone saying: "well, I'm off prednisone completely and I feel fine, I'm in remission. Everything I've read says it happens in 6 months to a year, or 1 to 3 years or some variation of that, but I've never come across any stats, and doubt its been studied much. Anyway...Howdy!
Fatigue has been a huge component on my PMR, more so than the pain, which was actually helped by pred. I can't imagine have started on pred to then have it taken away!
There are a few people on here who are in remission - but they tend to stop visiting once they recover - but you won't find a lot of people that have gone into remission in 1- 3 years - and probably none in 6 months! By all accounts, and a woman on here by the name of Eileen will know better than me, but the 'average' length would appear to be 4-6 years I think. There are a number of studies, links can be found bookmarked on the PMR forum page.
Is the 'sugar issue' related to pred or an existing condition? Pre-diabetic? Diabetes will effect your use of pred, but again, I'm not up on that aspect, sorry.
Mark, having been diagnosed with PMR in June 2014, I was under the impression it would last.2, possibly 3-years. According to what I've read on this forum, that's only true for about 25% of the people diagnosed with PMR.
My GP said I would be on pred for 18 months and then I'd be better. My rheumatologist has my pred plan secured out for one year. We'll see how I do on it time goes on since I just started.
You may well get some shocks as you browse through this forum. We do have a couple of patients still posting who have gone into remission and I hope they show up soon.
I'm at the other end of the scale, been on Pred for 15+ years and again, I know of a couple of others like me. I'm also diabetic, but I'm still here and no, it wasn't steroid related.
There is research going on like crazy in the background - look at the website and get the latest on it all.
I had a bit of fatigue with the PMR, but because my blood sugar went wild and I had a flare up of mono, nobody could tell which the fatigue was related too! So one by one I had to work to eliminate each. I was pre diabetic, and I've been working to fix that...its a whole thing, and I'm going to post at length on it in another discussion. The really terrible fatigue turned out to be the mono, and after getting off of pred, my immune system bounced back and apparently beat the mono into remission (still to be verified by the doc). So now I'm back on pred. Its possible I do have some fatigue, but I was pretty lazy before PMR, so its hard to tell ;-)
Counting my undiagnosed year and a bit and thirteen months on pred, I've been ill with PMR for well over two years. Considering I'm otherwise mostly healthy it's pretty disappointing I still have PMR. Down to a low dose but by no means over the disease yet. I thought I was cured after my first few days, never mind years, on pred as my doctor hadn't told me pred wasn't a cure!
Actually I think pred affects one's use of sugar and carbs! My blood sugar went to pre-diabetes level early on with pred, and I have since then virtually eliminated refined carbs and sugars from my diet. I do have wheat occasionally now that I'm at a low dose of pred, but no longer eat a sandwich as a matter of course at lunchtime, and only have small helpings of whole rice, that kind of thing. My blood sugar has gone from a high of 12 to currently 5. But I never thought of reducing pred any faster than I did. I just watched my diet and exercised as much as I could. I have to say it was probably the blood sugar scare that enabled me not to gain any weight.
My Reumatologist also has quite a positive outlook that I could beat this short term. Not likely on pred, but I have another idea that I'm going to bring up in another discusson. :-)
You can't "beat" PMR. You really can't. You can learn to manage the doubleheaded dragon of PMR and Pred, and make sure they are going in the right direction, namely towards recovery. But it's not a target like losing weight, or bringing down blood sugar levels. It's more subtle and insidious, and requires living a life as healthily and free of stress as possible. More a question of managing, rather than defeating! 🐉🐉
Don't be disappointed if it takes longer. I'm a very big believer in not going the drug route, but I took prednisone without complaint and thirteen months later I'm at a very low dose (3 mg) but there is no way PMR has gone yet. I'm happy, my doctor is happy, that the dose is so low, and I will keep on working to get it even lower. But obviously one year or eighteen months would have been completely unrealistic (I had PMR for at least fourteen months undiagnosed before pred). I do hope your journey turns out to be as relatively uneventful as mine has been since starting treatment. Touch wood!
you are absolutely correct - pred mucks around with your blood sugars. I'm the same as you - it went up so I've cut out all grains (other than the most delicious pizza and then cake for my birthday earlier this week!). I'm getting the results of my latest fasting glucose test on Tuesday next week.