Been like this for about 3 months, suddenly found I couldn't get out of bed without a struggle....fellt like a beached whale...... very alarming. Live on my own, no living family, so feel pretty much afraid re is this thing going to get worse? I gave up simple painkillers[paracetamol] for arthritic hips 18 months ago, felt I was making my body toxic after years on these , so was determined not to succumb to taking any for this but this is far , far worse than arthritic hip pain !!!!! Still havn't given in to taking any pain relief , stupid I know , though although I feel like screaming with the pain and
My doc says the only relief will come from steroids if the diagnosis is PMR. I really do not want to put these into my body. I just want this thing to burn itself out !!
Thank you for such an informative response. Yes I was diagnosed July 2009. A complete physical a few months before found me to be in "near perfect" health with bone density actually increasing, without taking any supplements other than a multi vitamin pill. When I could not hold a glass of water to drink or a book to read, along with what I now know to be classic PMR symptoms, I had testing done. What a shock to get PMR. You all know how severe the pain and fatigue and bloating and sweating and unpredictability this condition prsents itself. At least it is not fatal. I was started on 10 mg of prednisone and attempted to taper off 1 mg per month with some flare ups so at those times I went back to the previous dose. When I got to 5 though, this forum helped to realize that getting below 5 mg was very challenging so I began the slow taper method reducing by one half mg per month only. Basically I started with good health at age 68 and tried to exercise through PMR even though that was extremely difficult. Please note I am not advising anyone. My body was used to exercising e.g. yoga, acquatics( water exercise) , free weights, walking, golfing and curling. Mid December my daily walk increased to 3km. What a milestone for me. Also I rested a lot too. No choice about that because I could not move much at times. I upped my vitamin D beyond what is the usual for the calcium I now take to off set the possible prednisone effect on bone density. Still I know a long way to go yet. I so appreciate the sharing and caring that this forum provides. Again, thank you!Hi Casmana!
As you are in the UK (I'm also British but live in northern Italy
It eases off about 4pm because you have managed to get moving a bit and movement helps! Oneof the symptoms of PMR is the return of the stiffness and pain after a short period of not moving - like in bed overnight. Taking pain-killers doesn't help (or at least no-one I know says they do, at best they take the edge of some of the pain) - given your comment the bad news for you is that there is no cure for PMR - the steroids reduce the inflammation which is the cause of your pain and will allow you a normal life with a minimum of pain. However - if you go to the two sites I've mentioned you will find threads discussing the fear of steroids and articles about them. They are not as bad as you probably think and if it is PMR the relief you will get from 15mg/day of steroids will be both enormous and speedy. I took my first dose at 10.15 am and at 4pm walked downstairs normally - and back up again. Before that I could only go down like a toddler, one step at a time, and up it was on hands and knees. As to it burning out - I've had PMR for nearly 6years altogether, it wasn't diagnosed as my blood levels were all normal and the diagnosis was finally agreed to by a GP who had experience of it and recognised the clinical picture and the rapid response to steroids - which is a confirmation of a doubtful diagnosis - and whilst I had days which weren't too bad it never went away and I never had a day without pain and my lifestyle and quality of life was very limited as a result.
The Patient Experience UK site has a lot of contributors all of whom have had pmr, gca or both. Some report on ways of dealing with it without steroids (as I had done for 5 years). However, one thing to bear in mind is that nearly a fifth of patients with PMR will go on to develop GCA - which can be very serious and certainly if it manifests as temporal arteritis puts your sight at risk if it is not treated fast so do go straight to your doctor if you get headaches, jaw ache or any visual symptoms. It is likely that TA is more likely in patients with untreated PMR and any form of longterm inflammation in the body also increases any risk you may have of developing cancer - 2 good reasons not to reject steroids out of hand.
Although the usual starting dose is 15mg/day, the aim is to get the dose down as low as possible as quickly as possible without the symptoms reappearing. Although steroids are credited with causing 82 different side-effects of differing degrees of seriousness - MrsUK points out she has not yet met anyone with all of them! As the dose reduces so usually do the side-effects - I got a chubby face and a bit of facial fluff, I'd put on weight with not being able to do the usual amount of physical exercise, but that is all either gone or going slowly. The best side-effect is that the pain is almost entirely gone! You may still feel the fatigue and you will still have to learn to pace yourself but you will be able to lead a much more normal life and the lack of pain will make such a difference - that I can promise you. Last week I posted on Pat Exp UK under something like "how long does PMR last". A quarter of patients are off steroids within under a year, another 44% within 2 years but something under a third need the steroids for much longer. This probably indicates different forms of PMR but the positive is - 2/3 will get off steroids and wihtin 2 years, you might be part of the really lucky group. You might not have any side-effects. But the crux is: you don't know untilyou try.
Good luck, keep in touch as someone will answer any questions you may have however daft you might think they are. GPs have little time. rheumatologists even less, and many of them know very little about PMR once they've diagnosed it and written the first prescription. The resources I've pointed you to fill that gap and include Diagnostic and Treatment Guidelines for PMR/GCA drawn up by real experts in the field (Brit Ass of Rheumatologists) as well as info about reducing the dose once you get to that stage - and there is a minefield if you like! Everyone reacts differently, both in how their disease manifests and how they eact to steroids and reducing the dose.
See you around.
MrsE
Hi Casmana,
So sorry to hear about your suffering. Your symptoms sure sound to me to be PMR. Of course it's up to you, but taking steroids (Prednisone or Prednisolone) really helps with the symptoms so you can lead a normal life. Prednisone (or Prednisolone) is not an anabolic steroid but
corticosteroid. Much different. And as was said, no one gets all 82 side effects.
Here's are two links that MrsE was referring to in case you couldn't find them with a web search:
(Polymyalgia
Rheumatica)
RickF2010-10-16 12:23:38Thanks Rick - you're a gem! One day I'll remember how to do it! Isn't this so much simpler than PatExp - I know why they do it but I do think they've thrown the baby out with the bathwater!!
Thought you'd all gone AWOL or on holiday!!
MrsE
Thankyou so much both of you!!
I'm having a really difficult time explaining to my best friend that painkillers are not the answer so it's good to read your confirmation about this.
I don't think I'm suffering from fatigue , more like my brain simply will not slip into place and come out of the fog and move at the pace I expect of it at times , and in fact I forgot to mention this to my dr . Lots of people diagnosed with Fibromyalgia[ as opposed to PMR] complain of this I think?
Casmana - brain fog is part of PMR too!! And just to make things more complicated, some people find they get brain fog with steroids1 In fact - there comes a point where you aren't sure whether what you feel is the disease or the "cure" (as there is no cure for PMR, just management until it chooses to go away). Lucky you if you haven't got the fatigue bit as it can be as bad as the pain and doesn't always disappear with steroids. I'm sure fatigue is listed on the diagnosis guidelines - if it isn't it should be as it is very characteristic of all autoimmune diseases.
Having PMR will show you which of your friends really listen to you and take notice of how you really are - many of us find even our spouses just don't get it either. We don't have obviously twisted knarled hands like rheumatoid arthritis sufferers - and they have tremendous problems getting their problems taken seriously by others "Oh, yes, I've got arthritis too". Osteoarthritis hurts, we all know that, but it can be dealt with by painkillers and a joint replacement when it gets too bad. And it has a cause - over-use of the joint concerned. Autoimmune disease isn't the same - it's inflammation due to our bodies attacking themselves for no known reason as yet. If they knew why they could look for a cure.
Lucky, I'm another one of the oddballs with PMR that has never had an elevated sed rate. My symptoms were typical though and I had very fast results with 15mg prednisone. My syptoms were normally better from 10am until 4pm. I do agree that it is different with everyone and probably has to do with when you are most active during the day.
I would like to comment though regarding Mrs. E's comment regarding osteoarthritis being dealt with with pain killers and a joint replacement. My osteoarthritis is in my entire spine, especially the facet joints. Mine is hereditary from my father and my sister also suffers from the same thing. I've tried the painkiller route, injections, surgery, NSAIDS, muscle relaxers, you name it for 8 yrs with little relief. Then fibro kicked in in 2006 after lumbar & cervical fusions in the same year. 2009 the PMR appeared after a series of nerve block injections and radiofrequency ablation in my lumbar spine for osteoarthritis.
My sister-in-law just had a hip replacement for arthritis pain and is now pain free and I am happy for her. Believe me I only wish they could do a spine replacement, I'd be first in line.
Just wanted everyone to understand that not all osteoarthritis is from over use and not all types can be corrected with joint replacement. I hope I didn't come across too harsh but with so many things going on with my body it gets difficult trying to figure out what is what with my pain. When tapering steroids I'm never quite sure if it is PMR or a fibro flair, then again it may be the weather playing havoc with my arthritis.
Sorry russelcat - you're quite right, spinal arthritis is awful and I'd forgotten about it. My comment was really aligned with the complaints of lack of understanding made by many RA sufferers who, when asked what they have, are dismissed with "oh yeah - I've got that too" when what the listener has is the early stages of a knee objecting to too much running with the wrong shoes. You are in another realm - and that's actually another piece of evidence that the term "arthritis" is totally misunderstood. Like cancer, which is not one disease but hundreds, there is not "just" arthritis.
BTW - do you find the weather also affects the PMR as well as the arthritis?? I used to have pain and clunks in my knees and hands that one rheumy dismissed as "just arthritis, I can feel it" whilst missing the PMR that was already manifest. I know steroids help with other forms of arthritis - but all those discomforts that were there then have disappeared now
all the best, MrsE
Don't worry about it Mrs. E, we're all learning together in this. Not sure yet how the weather is going to affect my PMR since I haven't went through a winter with it yet. Winter is the worst with my osteoarthritis. Some of the fronts really knock me for a loop. My whole body will ache and feel swollen and nothing helps it.
Last winter I was on oxycontin, oxycodone and gabapentin but still had daily pain so I'm now narcotic free and using tramadol along with tylenol.
I thought I had osteoarthritis in my knees and hands also but the steroids helped those tremendously. So those must have been PMR related but the steroids haven't really helped my back or neck symptoms so those must be fibro or osteoarthritis related.
My PMR symptoms of waking up in the middle of the night with every muscle locked up, inability to stoop down, hands felt swollen but no signs of swelling, low grade fever with chills and just overall not feeling well are gone with the steroids. I am in the process of tapering from 11mg to 10mg as of today. I guess the symptoms I mentioned above will be my only indicators that my body doesn't like the new dosage. I can't really use my back or shoulder& neck aches and pains as indicators.
Really do wish the fatigue would let up though. Ever since I had my episode when tapering to quickly and ended up in the ER my energy levels haven't been the same. But I've also slowed myself down and now pace myself more and rest more to alleviate some of the pain that comes along with overdoing it. I wanted off the narcotics and the only way was to slow down and take better care of myself.
I've had diagnosed PMR since July last year (2009) and am on 17.5mg/2 days now after all that time - I'd had it for years pre-diagnosis though. I've been lower but have had a flare over the summer and went back up. It's beginning to make me wonder if it was the pre-history that makes it so slow for me to taper. My indicator for the new dosage is my right foot - the sensation of treading on broken glass mixed with sharp pebbles returns very quickly. The left takes longer! Either way - NO, steroids are not that bad, I can't do anything when my feet hurt like that even though the shoulders and everything else are fine.
Do you find the fatigue is better on the days you can just do what you want to? When I can just stay in bed and wake up naturally (about 9.30!!!!!) and then go back to bed about 9.30pm I find I feel so much better and can do so much more - trouble is, that's only when my husband is away working. Otherwise he's out of bed at 7, tea's made and TV on and that's the day started. Except he comes back to bed for 2 mugs of tea and the first hour of news. He's meant to be semi-retired and working freelance for goodness sake!
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