Can anyone tell me the difference between PMR and Fibromyalgia please. I was diagnosed with PMR Oct. 17. I am also type1 diabetic and under active thyroid.
I was put on 30 mg of prednisilone lowering the dose every month after blood tests. I am currently on 10 mg but am still getting pains in my arms and now hands, I don’t get too fatigued but am quite depressed. When I first went onto prednisilone it played havoc with my diabetes, as makes you resistant to insulin so I was on almost double insulin during the day, blood sugars running very high and at night when the steroids had wore off I had terrible hypo’s. I did my best with help from the insulin pump team. I also put on a stone in weight and cannot lose anything in spite of a good diet.I am confused the GP says the PMA has all but gone form my blood but I am still getting pains. I have tried pushing myself and being normal, played bowls and just about managed with pain killers but now I seem to be going backwards. Am I being impatient.
Would value your opinions, thank you in anticipation, Kathy x
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Kathy21
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Thank you, I did respond to prednisilone, but now down to two for 3 weeks I am struggling. Going to GP tomorrow and see what he comes up with. I will go to that link and hopefully be better informed.
Sorry, I'm confused. You said in your post you are at 10 mg pred, but here you say two? If you are on 2 mg no wonder you are struggling. It would take most of us a couple of years to get to that level and many take far longer. To be at 10 mg after seven or eight months is not bad at all, but you could be experiencing steroid withdrawal pains and should not taper again until those have gone, as your body adjusts to the lower dose. You need to make sure it's "only" steroid withdrawal and not PMR activity.
The GP has no way of knowing whether your PMR has gone into remission. Only you can know that. If your blood tests show your inflammation markers are normal this only means that pred is doing its job, not that your disease has gone. Pred is not a cure, it only works to control the symptoms so you can lead a normal life until PMR goes into remission, which can happen in a couple of years but more commonly takes up to six years. Patience was, indeed, the first lesson PMR taught me!
Polymyalgia and fibromyalgia are completely different illnesses, sharing only the word "myalgia" which means pain. For our purposes the main difference is that fibro is not inflammatory and does NOT respond to pred, but there will be others along who can explain the actual differences in how the illnesses work.
You must continue to take enough pred to control the symptoms, the pain in your muscles, and only taper the dose very slowly to avoid steroid withdrawal pain. Keep in mind also that you have a fairly serious disease. It doesn't kill us but it does require us to be kind to ourselves. Don't push yourself to perform as you could before you became ill. Treat yourself kindly and make sure you get enough rest, especially in the first year, where you still are. Gradually you will start to regain your strength and it's good to be active.
Blood sugar can be controlled through being very strict with diet. I had to virtually give up carbs, especially those from grains, and sugar, and many others have found this dietary approach is very helpful in controlling weight gain. Both of these issues will gradually improve as you taper the dose.
If you have severe changes in how you feel during the 24 hours of a day you may be one of those who do better when splitting the dose between morning and evening. Again, there are many who have done this and can give advice, but I happened to not need to do this.
It rarely goes away in under 2 years, it takes up to 4-6 years for 75% of patients to get into remission - and your doctor doesn't really appear to understand the use of pred in PMR. It does not cure the cause of the symptoms we call PMR, that is an underlying autoimmune disorder that makes your immune system attack your body by mistake, thinking it is "foreign". All the pred does is manage the inflammation so you can live reasonably comfortably and normally until the autoimmune bit burns out. As long as you are on enough pred to do that the blood markers remain low, even normal, because the inflammation is mopped up each day and is never there long enough to stimulate the liver to produce the proteins that produce those raised markers.
However, the a/i bit is still there, chugging along in the background and attacking your tissues, leaving your muscles intolerant of acute exercise and you feeling slightly flu-ey. This means that if you overdo it they are unable to signal to you that you are doing to much and the DOMS (delayed onset muscle soreness) that pretty much everyone develops when doing things they haven't trained for is worse and lasts much longer.
I'd suspect that is your problem - you have been doing things using your hands and arms in "being normal" and they are protesting. I have the same problem - when I do a bit too much cleaning (wrestling the vacuum cleaner) or gripping things getting stuff out when we are camping my hands hurt for several days. Too much and my forearms hurt too.
The difference between fibromyalgia and polymyalgia rheumatica is fairly simple: PMR is an inflammatory condition which means in 80% of patients the blood markers ESR and CRP are raised at diagnosis. Pred is a very powerful antiinflammatory drug and so reduces the inflammation. Fibromyalgia is a problem with pain perception - it isn't that it is imagined or anything like that, the brain is unable to decode the signals it receives from the body properly. There is some but disputed evidence that fibro may also have an autoimmune component - but it isn't inflammatory. The blood markers that signal PMR are never raised and pred has no effect on the symptoms at all.
The whole thing is confused because some of the so-called trigger points doctors go on about in fibro overlap with some trigger points which are found in something called myofascial pain syndrome. It is often found alongside PMR - so patients with PMR may also have tender trigger spots. And patients also often have muscles that are tender to touch when they have PMR.
Thank you so much for this detailed reply, I am so grateful and feel I at least have some understanding of what is wrong with me. I will Talk to my GP tomorrow and discuss going back up to 2.5mg after reading your reply I think I have reduced to quick. Problem is I have seen 3 different GP’s with this complaint and I do seem upbeat as I am a half full person but not inside and I have to be more honest with them. Hate being ill. Bad enough coping with Type1 and Thyroid without PMR just a lottery really and we have to get on with which is what I do hence over doing it.
Thank you again, I do t feel so much of a whimp now.
Just seeing this, after posting my follow up comment above. Yes, 2 is very quick especially as you started at quite a high dose. The usual starting dose for PMR is 15 or 20, and tapers should never be more than 10% of the current dose. Below 10 a taper should never be more than 1 mg at a time, and one should stay at each new dose for a month or six weeks, or longer the lower the dose, to make sure you don't overshoot the maintenance dose you will probably need for months or even years.
You are certaily not a wimp! The average doctor has no concept of the pain and discomfort we go through.
I'm a bit confused too - to be at 10mg in 8 months is pretty good since you started with 30mg - a bit high really and probably the cause of your BS problems - but if you have got to 2mg at some point that is just a bit silly on the part of your GP and no wonder you are now having problems.
But probably pacing and resting appropriately would be a help too:
Sorry I think I misled you , I am on 10mg pred. not two, I may have said two 5mg tablets. I think I will go up to 12.5 when I have seen GP tomorrow and be kinder to myself. X
Probably what both Heron and I thought was the case - but yes, try 12.5mg and get things under control and then try 1mg or even 1/2mg at a time. Or there are slow tapering schedules around on the forum that also seem to fool the body into not realising you are asking it to deal with less!
Thank you Heron NS, yes you are right, I had a blood test every month and on the result lowered my ode by 5mg. They only started me on 30 mg because of my diabetes, because even that dose made my Blood sugars dangerously high which made the first few months of PMG very challenging, I felt really terrible. Up to about 3 weeks ago my body felt battered with one thing and another but when out of the house I am a good pretender and just say I am a bit better when most of the time I don’t feel better at all ha ah. I find people don’t really want to know if you are still ill.
Thank you for your help, much appreciated. Kathy21
It isn't an "only 30mg" thing- unless you have GCA 15 or 20mg should be plenty for PMR and anything higher as a starting dose is likely to lead to more side effects. You probably had 2 months of unnecessarily high pred. Never mind, what's done is done.
My Endo for diabetes said if I dint have diabetes I would have been on 50mg for about Severn weeks to give it a good blast but as it is I was put on a lower dose for longer. I only know that he agreed with GP on that. I have already gone back to 12.5 today and will stay on that for a while. We went to see our daughter in Australia for most of April and I wanted to get down to 10mg before I went as I thought I would lose the puffy face before seeing my grandchildren but that didn’t work anyway, so I was pushing for that. Ha ha. What is GCA please.
Only if you had had GCA, you should never use that high a dose for PMR.
GCA is Giant cell arteritis, it is closely related to PMR but affects the arteries in the head and can affect the blood flow to the optic nerve. If the blood supply is reduced for long enough or a lot briefly the optic nerve can be damaged beyond repair and you can go blind. 30mg for longer would be unlikely to deal with that risk - it is imperative to reduce the inflammation quickly using high doses to reduce the risk of loss of vision because once it has happened it won't come back. The risk is such that no rheumatologist would risk using a lower dose.
PMR can be a symptom of GCA - but the high doses of pred are really only used where there are symptoms that suggest that the inflammation is affecting the head: headache, flu-ey feeling, sweats, weight loss, visual symptoms.
DorsetLady can tell you far more - she lost the vision in one eye because of undiagnosed GCA symptoms.
GCA is a different form of this condition where the inflammation goes to the arteries in your head and sometimes the upper chest rather than the muscles as in PMR. The main risk is blindness. People with PMR can go on to get this and people with just GCA, like me, can go on to get PMR. GCA requires much higher doses of Pred and sometimes as much as 100mg. This is why it doesn’t pay to be impatient with reducing. Regarding puffy face, I’m on 5mg and it is still puffy, but I find that any salt in my diet makes it worse. I also don’t eat, pasta, rice, noodles, bread and flour or potatoes and haven’t had any blood sugar or weight problems.
Yes you are being impatient - sorry! YouR doctor obviously doesn’t understand PMR very well either, so hasn’t explained things. This may help you understand your PMR a little better -
Thank you all so much for all your comments. They have settled my mind not to try and get of the prednisilone too quickly and give myself a chance to get better, where as before I thought it was dragging on too long but now realise it is a slow process.
well here is the issue - I said this before I know - I "apparently" had fibro for a few years before I got PMR (with all the raised inflammatory markers, unable to use arms, etc.,) - when I was put on the Pred - ALL the pain went - and no-one has been able to tell me why/how - if this is fibromyalgia - did it respond to the pred! This would have been severe leg pain and general pain - I still have this issue with my GP while tapering down the pred - and the so called fibro pain rears its ugly head again. It also means that in their rush to get me off the pred - all this other pain is taking over and they won't leave me on the pred to help this!! Even though the actual PMR is definitely not gone as my arms get real bad on the very low dose. Sorry if I've rambled! But its all so frustrating to most of us to get a handle on all of this. I had to raise the pred a bit recently because of the leg and foot pain (my so called fibro). Oh I don't know how you played bowls!! Even with the pred controlling things - I would not be able to use my arms like that! I hope you get your insulin controlled. Best wishes with it all.
If you had raised inflammatory markers - it wasn't fibro. When the pain returns - it is because the pred dose is too low to manage the daily morning boost of inflammation and so the original (or similar) symptoms return. That will only stop when the autoimmune part of the disorder burns out and goes into remission. No a/i activity, no inflammation, no swelling, no pain - and no pred needed.
Trouble is I didn't have raised markers for years - I only got them when I got the actual PMR - but even when I used to get steroid injections in my lower back for pain - the pains in my legs would go for a while til it wore off. So whatever it is - it does respond to the steroids. So all very odd!! Thank you.
I've not had raised markers the entire time - until this flare. It is not unusual for patients with other or no diagnoses of their pain to have a steroid injection for something else and to realise that their more general aches and pains have gone. Investigation then establishes that the dx is PMR.
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