PMR

[Coralmary]

I have had PMR since 2012 and have after weaning myself off prednisone about 9 months ago am now weaning myself off Methrotexate . I was on a very high dose 27.5 mgs for over a year . When I moved and saw a different Rheumatologist he started me on a reducing programme I now am on 10 mgs once a week. I am not in the all over pain I experienced before diagnosis but find myself becoming stiffer by the day. My legs are very stiff and if I sit in the car for long or when I get up in the morning or just sit down for a short time I cannot get my limbs moving or straighten my back for a few minutes. Once I get going I can walk fine and for quite a long distance as long as there are no steps or hills! Is this a symptom of the PMR which I was told is in remission, or what? I would like to hear from anyone who is experiencing the same.

[PMRpro Ambassador]

The PMR is only "in remission" because you are on a high enough dose to manage the symptoms - drug induced remission. True remission will only happen when the underlying autoimmune disorder that causes your immune system to attack your body's tissues as being "non-self" by mistake has burnt out. There is no set time period for this - some people get off pred in under 2 years but then are more likely to relapse than others, a good half take up to 4 to 6 years and the rest of us take even longer. Some people even require some pred at a low dose for life to avoid a return of the symptoms while others need a bit of pred because their adrenal glands don't return to normal function.

Anyone who tells you that your PMR is "in remission" while you are still taking pred doesn't understand the nature of the disease or has been taught wrongly. There are doctors who will tell you that PMR only lasts 2 years and if it lasts longer it isn't PMR. They seem to be English-speaking - the standard German rheumatology textbook says an average of 5 years. The only way to know if PMR has gone into true remission is to reduce the dose of pred to zero with no return of symptoms. Some people manage to get to zero - but the symptoms return a few months later.

The generally accepted view is that methotrexate does not do anything on its own for PMR - it may help you manage on a lower dose of pred though that isn't guaranteed, in some cases it may even help you reduce to zero. But it may have been you could have done that anyway if you had gone about it in the right way - in small steps and slowly. MTX is the standard first line approach for RA, including LORA (late onset RA). Some people are told initially they have PMR but at some later point they have the dx changed to something else, often LORA. They can present in a very similar way and it isn't easy to choose between them. If these patients are put onto MTX it appears that their PMR responds to it or to a much lower dose of pred - it is, by the way, possible to have both.

The symptoms you describe are typical returning PMR symptoms, especially the myogelosis, the stiffening of the muscles after sitting for more than a few minutes. It may be that your PMR really WAS in remission when you stopped taking the MTX - or that it was very inactive. It is really only when the inflammation gets to a certain level that you start to notice the symptoms. After all that time on pred and then MTX damping down your immune system it probably remained almost inactive but, as a dripping tap eventually fills a bucket, the inflammation has slowly crept up to a level where it is now apparent again. And many of us can walk on the flat - but put a slope in front of us and golly, do we know about it!!!!

When my PMR first started it was just stiffness and I'd lost the spring in my step - I couldn't manage step classes any more. For 5 years I had to manage it myself because it wasn't diagnosed and Mon-Fri I went to a morning aqua aerobics class - after that I could move fairly well for the rest of the day. Even when I had the first major flare, I could barely get out of bed but I came here to my flat at the bottom of a ski run. In the morning I staggered to the ski bus and hauled myself onto it. At lunchtime when I came home I could walk almost normally! Once the muscles had been warmed up, the circulation had been vasodilated and blood flow got going it was not too bad. I could probably have managed for much longer like that but I started to develop quite severe bursitis in my hips - that was very painful and the more I did, the worse it was. But resting for that made the muscle stiffness of the PMR worse. In the end - pred was offered and the rest is history as they say.

[Coralmary in reply to PMRpro]

I found this very interesting although I am disappointed that you believe that my PMR is not in remission. I understand what you say and I am sure you are right but I like the sound of remission ! after all the misery of pain and anxiety. I had an operation for spinal stenosis in the middle of my PMR. I knew the severe pain down my leg was different from the pain from PMR and having the two conditions as the same time was not nice to put it mildly.

[PMRpro Ambassador in reply to Coralmary]

It may have been in remission 9 months ago - but you have to admit, it is at the back of your mind that this is a replay isn't it? A lady on a another forum had an almost identical experience to you - she was able, very slowly, to stop her pred but didn't tell anyone except me. About 6 months later she started feeling stiff when walking etc etc - she eventually called her lovely rheumy who said sorry - it's the PMR back.

What she does say this time is that she is far less bothered about the pred. They had postponed a holiday of a lifetime because of the state she was in with the PMR and were about to fly to SA on safari when it reappeared. She went straight to 10mg for the holiday and managed fine. The last I heard she was down to 7.5mg but says she is now as "cool" about that dose as her (truly exceptional) rheumatologist! Life is for living - and you only get one try at it...

Second episodes are often different from the first and provided you are sensible about the dose and don't try to skimp you often do much better. Aside from any other reason you have learnt a lot about management - or you should have.

[Hidden in reply to Coralmary]

Spinal Stenosis with PMR -NOT NICE. After 3 years of PMR/pred have now managed to reduce 20mg to 13/12 and then severe pain down left leg thought to be Sciatica. My Physio led me to scans and thus SS.I think I have managed to differentiate between the two, but feel at times the SS is causing pmr flares. Mark time with the pred reduction increase codyamol. I am due for an pain killer injection in the lower spine. Sadly have had to reduce body exercise including swimming but try when I can even though it might take a couple of days to get over it. Is there anything else I can do? any comment all, please .John -80

[Coralmary]

Thank you for your reply. I have been off the prednisone since November 2015. I am decreasing the Methrotexate and am down to 10 mg weekly. Down from 27.5 mg which was a very high dose . I moved to another area and saw a new doctor and rheumatologist and they both thought it was a very high dose. I was told that I was in remission by the rheumatologist . I don't have real pain like I did before taking the prednisone but as I have said I am very stiff particularly after sitting even after a short time.

To try to relieve the pain from the Spinal stenosis I had two pain killer injections in the lower spine . The pain relief lasted two days the first time and one day the next. I had the operation for spinal stenosis which was tricky as I had to lie flat on my back and not move for 48 hours as some sac had been ruptured during the op. However, after that things improved greatly and I made a good recovery and have no pain from my back or down my leg. This is a great relief and now I have time to concentrate on the PMR! 😀