Hi again! I just wanted to say I'm so glad that I found this forum! I've read a lot of the info on the web, but reading all of the topics here on this forum from you guys has helped somuch more! I almost feel as if I know you! My family and friends are sympathetic but none have heard of PMR. My brother has RA, my sister has autoimmune hepatitis so PMR is no big deal to them. So it's nice to chat with those who really understand what I'm going through!
I developed a week long fever of102f at the end of Jan. and about a week later started getting pain in my left hip. It slowly got worse and my Dr. prescribed Tramadol which wasn't much help so he sent me to a rheumy. My CRP was 5.4 so he sent me to an orthopedic surgeon to see if I had a hip infection. MRI's and Xrays were negative, so back to the Rheumy. By this time the pain was worse than the two broken ribs I once suffered. Also my CRP had jumped to 20 and he said that I may have something very serious. I told him the pain had spread to the right hip also and about the fever a month or so before. He said my symptoms weren't typical but that he suspected that I might have PMR. No shoulder or neck pain, and only in the one hip had thrown him off. He gave me 10 mgs of predisone at the office and a prescription for moreand said if this helped in a couple of days that would confirm the diagnosis. Well, the rest of the story is history.
Some web sites suggested the problem should resolve itself "in a few weeks" on prednisone! I'm glad I read all the comments on this forum! I still have good and bad days, and have some trouble after sitting on a straight back chair for a while. I discovered too, It's not a good idea to mow the lawn first thing in the morning! Or maybe not at all!
I also have some othe conditions that complicate matters- diabetes, glaucoma, cataracts, moderate kidney failure, and a few other things. Sometimes I feel a little overwhelmed but I'm getting a handle on it. One regret is that I lost so much weight and now put about half of it back on
Well, again, I'm happy to have met you guys and all the good advice I've recieved from you! Thanks!
Hello pcmanic
I went through a similar introduction to PMR: Fever, pain, X-Rays, MRI (orthopaedic consultant thought it was my slipped lower spine playing up) in spite of which I still ended up for a year undiagnosed and spent 3 months of that in bed. I was ony diagnosed a year later by a different rheumy(!) when a whole bundle of new symptoms arrived which turned out to be GCA (a close relative of PMR and probably contracted because I hadn't been treated for what we now knew was PMR!).
Like you, I also have cataracts, high occular pressure (treated as for glaucoma) and moderate kidney disease - this is classed as CKD3 and my eGFR has ranged between 44 and 53. Do you know what your kidney function reading is?
Yes, isn't that frustring when the only good side effect of all that undiagnosed pain is weight loss, only to put it back on with the steroids. I was lucky in that I only gained 7lbs or so but I tried to stick to a low carb diet with anti inflammatory foods and increase my daily walk as pain allowed. Now having reduced from 40mgs 4+ years ago down to 1mg I have lost 9lbs, so I'm one happy (Easter!!) bunny!
You are so very lucky that a starting dose of 10mgs has been successful for you as it's usually 15mgs, sometimes 20mgs for PMR (unfortunately for me with GCA as well it was very much higher at 40 but some GCA sufferers start on 60mgs).
Yes you do have to be careful what web sites you read. The very best proven and expert professional medical advice you can read will be the guidelines on our UK PMR-GCA North East Support website, where you can also read other people's stories and in some cases their recoveries - Ragnar's (a gentleman in Sweden) method on how he successfully reduced and came of steroids is also there.
My very best wishes.
So glad you found us if you feel we are a help to you! Well - I suppose you COULD say that the symptoms of PMR resolve in a few weeks on steroids, just you have to keep taking the tablets or it comes back! That's the whole point - the steroids aren't a cure, they just allow us to manage the symptoms and have a life. Unfortunately a lot of doctors don't seem to understand that and try too hard to get patients off the steroid dose.
I'm sure too that your family with RA and autoimmune hep aren't too impressed with you "only" having PMR - however, last night I watched a programme about a young woman who works in a circus as a bare-back horse rider. She has a severe form of arthritis but gets an injection every 2 weeks and is able to continue with her circus career! I know they don't work for everybody, sometimes it takes a while to find the right drug - but RA is sometimes less of a curse than PMR because there are many different approaches to dealing with it, especially with the new biologics - some of which have been tried in PMR and have had absolutely no effect other than making some patients ill. If a doctor sees a patient with RA they seem to be a bit more sympathetic, there is the joint damage aspect after all, but we are just older patients with a bit of stiffness. There's a bit more concern for the GCA patient - they after all could go blind.
But things are looking up - people are starting research!
MrsE
Interesting that fever seemed to be the starting point for us. I ran a low grade fever and just didn't feel well off and on for several months before PMR really showed itself. I'd go to the doctor thinking an infection but they could never find anything wrong with me. Then I had a series of injections at my Pain Management doctors with the last injection being one where they heat the needle to deaden the nerve called radiofrequency ablation. The next day my fever was up to 102 and PMR went crazy.
I looked up my symptoms on the net and PMR came up. I begged my PM doctor for prednisone and have been on it since. Just went down to 6mg after 11 months. Along with PMR I have fibro and bone spurs all along my spine (facet syndrome). I was on some strong narcotics when PMR started and they did nothing for the pain before steroids were started.
Good Luck with the PMR and remember to take it easy when your body says to.
On-going low-grade fever is recognised as one of the signs/symptoms of PMR - one I never had! In fact, my temp was slightly low - the only typical things I had were the bilateral stiffness that was worse in the mornings and the bursitis, but that WAS textbook. No-one ever picked up on the complaint of stiffness and yet that was the thing that set me onto the search about PMR when a blog doc commented he had been waiting for a patient to come in and wondering what to do as she complained of shoulder stiffness but her ESR (sed rate) was only 40 which is borderline. He gave her a trial of pred - and a few days later she came bouncing in, beaming all over her face! That clinched it as far as he was concerned - oh that there were more of his ilk!
And isn't it amazing how pain-killers of any sort just don't help? You'd never find me at the ER trying to get anyone to give me narcotics! Had morphine once after having a metal plate removed from my leg - never again, I felt SO ill, BP in my boots!
Happy Easter/Passover or whatever to you all - hope there are plenty of eggs and other goodies,
MrsE
Hi pcmaniac,
Also glad you found this forum. What do they say... "misery loves company?" Yeah right, but at least it helps to know you're not alone. Glad to hear you're starting to get a handle on this. What I found out after starting on 20mg pred, I felt pretty good 1 or 2 weeks, so I thought it was okay to do lots of projects around the house (one of the 82 known side effects of Pred is energy). I found out I had to take a bit slower and ease into it.
In your search for info on PMR you may have already found the ones linked below. If not, they're pretty good.
American College of Rheumatology:http://www.rheumatology.org/practice/clinical/patients/diseases_and_conditions/polymyalgiarheumatica.aspOne from the UK:http://www.patient.co.uk/health/Polymyalgia-Rheumatica.htmHopefully your venture with PMR will be a short one.
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