I live in USA, I'm sick since February 2014, had seen many doctors till I was diagnosed with PMR and I still not 100% convinced I have it. My SED rate is almost normal now and my pain is not symmetrical: right side of the body which had different problems like sciatica, low back pain, right shoulder issue before I got PMR is much more painfully than my left side. I felt better in 3 days on 15 mg of prednisone, but I had so many problems with my stomach, I gained 10 lbs since I was on prednisone, and also my glucose lever raised, I decided to get off prednisone, but now have all my pain back. I take Zyflamend (supplement which has Turmaric) and started accupuncture, so far no improvment. Do you all have symmetrical pain on both side of your body. What kind of test did you have to confirm PMR?
Hi Nellie, sorry to hear of your problem. I am new to this site and by no means an expert. I was diagnosed in dec 2013 and until now my treatment plan hasn't encountered a single hitch, but now I'm m on 8mg of prednisone some of my pains and stiffness have resurfaced. But forget about me, I'm telling you this because most of us do not report exactly the same symptoms and do not respond to the treatment either exactly the same. You say that your SED rate is almost normal now. Well I would have thought that was good. I've had so many blood tests since I was diagnosed and the only one where my SED rate was high was the test whereby I was diagnosed. All the others the Dr has been over the moon about. Before I was diagnosed my pain was not always even. For eg, the first symptom I had was an excruciating pain in my neck - the right side of my neck whilst I only ever had a little pain on the left of my neck. So I think it depends on the person. I took prednisone and within 4 hours I was almost pain and stiffness free. In fact the results were so dramatic I cried I was so happy. I have never been completely pain free some days I get the odd twinge or say I get a cold or cold sore then pain in my hip joints and shoulder blades gets worse for maybe 2 or 3 days then things settle down to "normal". Also it is normal to gain weight, and have higher glucose levels. One thing you must never do however is just "come off the prednisone" please look on the websites for the drug. It is dangerous to simply just come off it. One of the ways they ensure correct diagnosis of PMR Is the fact that the pain and stiffness only responds to steroids and no other pain killer. You sound very anxious. Believe me, none of us like this condition precisely because there's no set end date. We all hope that we are the ones that have a relatively pain and stiff free ride and like me at 8mg i'm getting more neck and hip pains plus a bit of stiffness in my hips we must just get on with it. One thing that keeps me from feeling blue is knowing that PMR does burn itself out at some point. It might not be as quickly as we'd like it to be but it's not terminal and we will be ok in the end. Please try to keep positive and reconsider getting back on the prednisone and sticking to the treatment plans. Good luck, Tina
Hi Nellie, sorry that you had to find us, but welcome.
Not quite sure what you mean by a 'test to confirm PMR' because there isn't one. PMR is a diagnosis of exclusion - when everything else the symptoms might be is ruled out, then usually it is PMR. Although I had pain on both sides, my left side is the weaker of the two and that was always worse than the right.
My inflammation markers (CR-p, ESR) have been normal ever since I started with this stuff some years ago. About 20% of patients present with normal markers.
As you had a quick response to the initial dose of steroids that helps to confirm the diagnosis, and if you have now got all the pain back after stopping steroids
- well, I won't go further.
None of us likes being on steroids, but in many cases there is no alternative if some quality of life is wanted, and most of us do want! Like many others here I was unable to do even the basics of living, such as turning over in bed, getting out of bed (that was impossible without help) toileting and getting dressed. Moreover, if you have unchecked inflammation from PMR running through your body, there is a higher risk of presenting with GCA, which is usually the less painful but much more serious condition of the two as it can lead to loss of vision which is irreversible.
There are numerous side effects of steroids; no one gets them all and some get none. I got weight gain - much more than you - and sky high glucose levels amongst others but both returned to normal as the dose reduced. There are many things which can be tried for gastric problems when necessary. I decided that these problems were worth having if I was protecting my eyesight. I'm glad I did.
Hi Nellie, I also live in the USA. I was diagnosised eight months ago. In the beginning i thought I had a overuse injury with pain in my Rt. shoulder but over a years time the pain went to my left shoulder then right hip and then left hip. When I was in so pain i was falling and crying only then at the very worst did my labs register inflammation and I got the dx of PMR. I began on 15 mg of predisone and like magic within three days the pain was gone!!! I had to begin a faster then I would like wean down to 5 mg because I have to have gallbladder removal surgery in two days. I have been weaning 1 mg every two weeks but had to decrease that to .5 mg each decrease as 1 full mg just caused too much pain to return. Now I am down to 5mg and I am in pain again on both sides but again the pain is the most severe on the right side. I also have pain in the gord/tendon that runs on the inside of both upper thighs( I don't know its medical name). They tell me since my labs are normal that this isn't the PMR pain but withdrawal pain. I know there is withdrawal pain I get that, however I had months and months of terrible PMR pain with normal labs before I knew what this was. So it makes sense to me that you can have PMR pain with normal labs and the returning pain is in the exact same places as the onset pain. To answer your question I do have symmetrical pain but it isn't equal, right side is more painful for me. It seems if there were ten people, all ten would have this disease a little different. I was told there is no test to confirm for sure. The dx by symptoms and labs showing inflammation and how you respond to the steroids. This forum has been so good for me! This is a crummy disease but it isn't terminal cancer, things can always be worse.
Bilateral pain is typical in PMR, yes. Your response to 15mg pred with a great improvement of symptoms in 3 days is also very typical and not usually found in other forms of arthritis. You should have been offered stomach protection medication alongside the pred whichwould probably have avoided the stomach problems although those medications also can lead to gut problems.
It is also possible and not uncommon to have other muscle problems alongside PMR such as myofascial pain syndrome or piriformis syndrome, both of which could cause the sciatica, lwo back pain and one-sided shoulder problems. Your sed rate should fall with pred and once it has dropped does not always rise again with a flare.
If what you have IS PMR, then stopping taking pred will allow the symptoms to return - as you have found. The diagnosis of PMR is made onthe basis of the symptoms plus blood tests which suggest the presence of inflammation in the body - a raised sed rate and CRP level.
I don'tr want to sound unsympathetic - but for many of us a gain of 10lbs would have been great! Many of us have gained double or even treble that. Raised blood sugars are also not unusual, they are common pred side effects. Both can be controlled to some extent by reducing your intake of carbs whilst on pred. Both problems reverse as the dose of pred is reduced - that is the next stage: you reduce to find the lowest dose of pred that controls the symptoms. There is no cure at present, you must manage the symptoms to allow a decent quality of life.
You have a basic choice. You trust your doctors, accept the side effects of pred and have a relatively pain-free and normal life, just a couple of clothes sizes bigger or you accept the pain and stiffness of PMR. It is also not a case of pred is bad, no pred is good. Long term uncontrolled inflammation in the body make it more likely you will develop cardiovascular problems of various sorts and can also make you more likely to develop certain cancers. It is possible that not taking pred makes it more likely you will develop GCA - there are mixed opnions on that. But what is certain is that if you DO develop GCA then there is a rather startk choice: you take much higher doses of pred than for PMR or risk going blind. There is no cure for GCA, pred can control the inflammation but once you have lost vision, that is it. It cannot be reversed.
And we haven't yet found anyone who has used acupuncture or diet to achieve total remission - out of hundreds of patients on the forums.PMR will go into remission - maybe in 2 years, maybe longer. But it doesn't kill. It isn't cancer. But without pred it can be very disabling.
Thank you so much to all you fellow sufferers for you quick respond. I did not get off prednisone by myself, I was under doctor's supervision and follow his advice on how reduce dose. I loved prednisone for 10 days after being in constant pain for 7-8 months it was a such relief, but trust me I'm having real issues with my stomach and colon willing to stop prednisone. I'm taking Nexium on regular basis, and that wasn't enough to calm my stomach. But I would probably have to go back on prednisone since no other choice. Thanks again! I wish you all painless life.
Were you already taking nexium BEFORE starting to take pred or was it given to you as stomach protection because you were taking pred?
There are many patients who cannot use PPIs - Nexium is a PPI - as they themselves can cause extremely unpleasant stomach effects and at least one lady on a forum here in the UK had uncontrollable diarhea to the extent she was unable to leave the house. For others they cause bloating and gas as well as pain. If you have colon problems - it may be the Nexium and stopping that might be better than stopping the pred.
I didn't suggest you stopped pred on your own and after a short time it is easy to stop pred with no problems, it is only after several weeks the adrenal risks start.
Hi Nellie
I was diagnosed a few months ago, at first I thought I had strained my muscles lifting heavy objects, but I continued to get worse and could not get out of bed, get up from a chair or get in and out of my car. Every muscle was painful. After a few weeks I improved but still had problems down my left side, shoulder, elbow, hip, knee and ankle so my dose was doubled. I felt really bad on this dose, my appetite went through the roof, I have gained alot of weight which is so depressing as my Son's wedding is coming up in March, timing could not have been worse.
Now back down to 10mg, still need to eat alot more as my work is physical which causes muscle shakes. But trying to cut back and rest more.
My doctor did every blood test under the sun so cannot be precise. But I am sure someone else on this forum could give you exact details.
My doctor gave me Lansoprazole capsules to take before food and before taking Pred, they are gastro-resistant capsules. The high dose made me sick but the lower dose 15mg seems to work. Ask your doctor.
Hi EileenH, I was diagnosed with PMR in July been on 15mg of Prednisolone. Now following the Bristol reducing plan. Just managed to get to 14mg now without much trouble. I have a very good GP. I gave him a copy of the paper written for doctors and he was very interested in it. He has suggested that I stay on 14mg for another 4 weeks before slowly going down to 13mg as my ESR had gone up very slightly when I first started to reduce to 14mg. I am hoping the rise was just because of the lower dose initially and I am hoping it will have gone down again at my next blood test when I will then have been on 14mg for 8 weeks. Is a rise in my ESR something to expect each time I lower my dose.
Could you please explain something else to me. In your reply to Nellie14381 at the end of your post you mention "adrenal risks". Could you please explain what this means. Thanks to everyone for their posts. I don't know where I would be without this site. There is such a lot to learn about this complex condition. Thank you.
Brilliant GP - hang onto him!! He's reducing even more slowly than the Bristol plan and that is a good thing.
Your ESR can be affected by a lot of factors - including colds, upper respiratory chest and urinary tract infections. If it stays about the same as you reduce that is good, if it climbs steadily then it may be the inflammation is too much for your current dose of pred. It shouldn't rise - but it is only a guide and it is the symptoms that are most important. If they come back - you would need a higher dose.
When we take pred the adrenal glands stop making the natural steroid, cortisol because they are told there is plenty in the system via a very complex feedback set-up of hormones. Cortisol is necessary for life, especially for responding to stress of any sort including injuries and infections. Down to 10mg there is no problem, you are taking enough for most eventualities but below that if you were under any severe stress it might not be enough (don't worry, it usually is). The lower you get the more likely it would be to have problems and if you suddenly stop taking pred or reduce in a big step quickly it is risky - and some people can become very poorly just because of that. It is easy to sort out but you must always tell any healthcare staff that you have been on pred for a long time when you are undergoing any procedures like minor ops if you have an accident. The symptoms of an adrenal crisis include being very tired and feeling poorly and wanting to sleep a lot - but it is very rare.