Is my pain caused by the return of PMR or can it be the medication I am taking?

I have now been on Prednisone for two years now. My first rhuematoligist started me on 20 mgs. and I slowly reduced to 1mg. every other day - but the pain came back and got worse so I made an appointment with her again. She told me that I did not have PMR anymore (my blood tests were okay) and that Steriods affect your muscles to I should have physio therapy. Which I did. But the pain by now was excrutiating!

So I then went back to taking 10 mgs. of Prednisone a day and after a day or two, thankfully the pain disappeared. I was so angry with her for the pain and the money I spent, but especially for the lack of empathy that she showed and her insistence that it was no longer PMR. After that I spent another year going from 10 mgs. to 4 mgs. (but I discovered my lowest level without any pain was 5 mgs.). So I have just met with another rheumatologist who was so helpful and knowledgeable - unfortunately she did say that I might have PMR for life!! I had believed it could last for six weeks to ten years!

She told me that there was no cure or knowledge as to how it occurs, but did tell me that about 10% of people have positive blood tests, followed by negative blood test, and that was not a secure way to find out if it is still with you or not. Only the pain will tell you when you reduce too much, and that is what you have to go by. Yes, PMR can come and go, but without the relief of steroids when reducing them slowly, you will never be able to know whether this awful infliction has run its course.

I would be very interested to hear the length of these attacks, as 'for the rest of my life' sounds awful!

Suggest you google PMR&GCAUK North East Support and read up on it and find links to other places.

It is not uncommon to have PMR for rest of life - there is no known cause or cure, PMR has a mind of its own it comes when it wants and goes when it wants. Find the level you are comfortable at and then try Ragnar's method on the forgoing website. But look also under usefule links.

Hello again everyone. Thank you for your replies. I increased the dose of Pred. to 20mgs in an attempt to separate the pain of PMR from the pain of my back. It took about two weeks but now the obvious PMR pain in the rest of my body has gone, leaving me with the chronic back pain which I now know is an injury. So, the exercise was a success, but I am no nearer to identifying the exact problem or recieing treatment for it apart from pain killers. It has been 14/15 weeks and to date no-one has examined my back. I have been put on a waiting list for physio and for now my Doctor advises me to stay on the 20mgs. Obviously I would like to start coming down as soon as possible but will wait until I can strengthen the back as I am sure the PMR was making the pain worse. (I had become unable to dress myself without extreme deifficulty and putting on socks and shoes was out of the question).

'Two Years and Fed Up' - It's interesting to hear that your pain went when you returned to the lower dose, which would seem to lend weight to my theory that the Prednisolone can cause the pain.

Thank you Mrs K, again what you say makes sense.

'2 Years and Fed Up'

5mgs was a sticking point for me so following a flare at that dose my rheumy increased me to 10 with advice to slowly reduce back down to 5 via 2 weeks at 10, 2 weeks at 7.5 and two weeks at 7.5 and 5 on alternate days. He then kept me at that 5mg dose for between 5-6 months - it was where the flare had originally occurred so although I baulked at his suggestion, it made sense and it worked. Like you I thought this meant my dose for life, but I then started tapering the dose in half mg doses by way of 6 days at 5mg and one day at 4.5, 5 days at 5mg followed by 2 days at 4.5, etc. A snail's pace but it has worked and I am hopefully now in remission - I could probably be off steroids but I prefer to hopefully trick my body into not noticing the withdrawal so I am now on zero pred for 4 days followed by one day on half a mg - probably absolutely no therapeutic value to that dose but having taken so long to get here (5 years) I'm not going to rush the final hurdle (especially following an original diagnosis of both PMR and GCA) - well either that or I'm a woos!

Yes, there are a few people who are on 5mgs for life but the couple of people I know in that situation get impatient with trying to lower the dose as slowly as I have done - they feel good for a few days so reduce again without giving the adrenal glands long enough to kick back in to producing their natural steroid alongside the lowered artificial one. So go slowly and stay positive.

Be careful with physio - their usual techniques such as manipulating and stretching are contra indicated in PMR but it was my experience in the later stages that phsyio by way of gentle massage with heat to strengthen the steroid weakened muscles was of enormous help.

It has also been my experience that the back pain from either PMR or spinal injury can be relieved by wearing a support girdle for a few days during such painful bouts.

DaisyBee

The last two paragraphs of my reply to '2 years and fed up' are really meant for you but I forgot to put your name in front of them!!!! One day, hopefully, we will have an edit button for our posts on this forum!!!

MrsO

2 years and upwards - you have found a treasure of a rheumy! Hang on to her! The PMR symptoms are caused by (probably) an underlying autoimmune disease which causes the body to attack itself and leads to inflammation and swelling - that is what leads to the pain and stiffness. The pred reduces the swelling and so the pain as well - that's all, it manages the disease as long as the underlying problem is continuing. If the autoimmune part "burns out" or goes into remission it stops causing the problems and you could stop taking the pred but there is no way of knowing that.

If you reduce your pred dose very very slowly, not more than 1mg at a time and preferably even less at the lower doses, you will identify the dose that is right for your disease level at that time - the stiffness and pain will return when you get to too low a dose, go back to where you were comfortable and wait some time before trying again and then, again, try a very small reduction. Some doctors will try to get patients to reduce at 2.5mg at a time as they do with other illnesses - it just doesn't work in PMR. If you reduce by these tiny steps you shouldn't have to jump back to a much higher dose to control the symptoms. You may be able to get lower some time later - or maybe not.

The main cause of these attacks as you call them, flares as others refer to them, is reducing the pred dose too far whilst the underlying disease is still active. If you reduce too far and let it get away you might have to go back to a higher dose - and often then it is more difficult to reduce the next time. I had the return of symptoms at about 8mg/day but didn't work out what was happening intially. Now I actually need a slightly higher dose to keep stable. I have had PMR for about 8 years now, 5 undiagnosed as I was in my early 50s and have had no elevated blood results, EVER! I can only know what is going on by the symptoms.

I'm intrigued by your 6 weeks figure - one of the criteria used to be that the symptoms had persisted for more than 6 weeks as other things can cause them but PMR lasts longer. Many doctors still believe the "lasts about 2 years" line - if only! The medical literature says that about a quarter of patients recover and are off pred in one to two years - but they are at a high risk of having a relapse. Another half recover in somewhere from 2 to 6 years and are less likely to relapse later. The rest are longer term - either needing longer to get off pred or needing a low dose for life. So anyone who was "cured of PMR" after 6 weeks probably didn't have PMR according to the stricter definition in the first place. And that first group possibly had a period where the disease was inactive, stopped pred successfully but some relapsed.

Does this help?

Eileen

DaisyBee - 20mgs is a pretty high dose for PMR, the usual starting dose is 15mg (and a new study shows 12.5mg is enough to resolve the symptoms after a month in 75% of patients). If it were me I would try small but steady reductions - possibly 2.5mg but preferably less every 2 weeks and see if you are still PMR-pain-free. After all you were happy at a lower dose before weren't you?

20mgs is a highish dose to be on for any length of time in PMR. As you get closer to the dose you were happy at before reduce by just 1mg or even 1/2mg at a time and stop reducing as soon as there are any PMR type niggle, go back to the last good dose and stay there. If it works, it would be much better for you in the long term to be at 12.5mg which is where you were still well last time than the current 20mg.

How does your physio referral work? Is it to be at the GP practice or at the hospital? It is often worth ringing the physio dept that provides the service and explaining the problem and telling them you would take a short notice appointment when someone cancels - mind you, if you say that, be ready to drop all and go when they call and offer a space! You can't then say, oh no, not convenient today...

Looking forward to the next instalment :-)

Eileen

I am a physio with PMR and do not recomend exercises , except later in the day when pain is lower to try and make sure that every affected joint is put through its full range to prevent joint stiffness, I never try early am when the pain is at its worst !!

I hope this helps

always good to hear from someone in the professional field required will take this onboard considering getting a dvd on pilates carolk

I am 2 1/2 years into PMR , bad morning this am , I am considering putting together a leaflet with an exercise program that should only been done when the pain is low , just to help prevent /minimise the long term effects on the muscles and joints.

Would anyone be interested ?

I know only too well how PMR gives limitations

Thank you Anniec (hope that's correct spelling)

A leaflet would be so useful. I find that PMR is not totally understood. Recently I went to a Chiropractor for an assessment and although I told her I had PMR she put me through an enormous amount of pain without any sign from her she thought it was excessive.

I was anxious to get off Pred as soon as possible because I was scared of the potential side effects but this forum is reassuring and I hope that my original question and all your support will help someone else who is embarking on the PMR Challenge for the first time.

The son is shining bright here on the south coast - I hope you can all share a little of it today.

Annie

Thank you - that sounds an excellent idea and I'm sure many people would welcome it.

A physio gave a presentation at our last PMR/GCA Support meeting last week, explained to us all how PMR was contra indicated in PMR and circulated a handout of suitable exercises following which he guided us through them with each person only raising their arms and stretching their legs within their individual comfort ranges. With feedback I have received, everyone enjoyed the session immensely, no-one seems to have suffered any untoward after-effects and,if nothing else, it was fun!

I have found Tai Chi to be of excellent benefit in my few PMR years with its gentle stretching, balancing and breathing techniques.

MrsO

DaisyBee

I see you live on the South Coast and I thought you might be interested to know that a couple of ladies have recently set up a PMR/GCA Support Group meeting in the Worthing area. I have a group in Surrey where some people join us from the South coast area. I'm sure one of the above-mentioned ladies will join in and post more details shortly.

The sooner we have the facility back on here to send personal memos to each other, the better! The other forum mentioned previously has the facility to do this - pmrandgca dot forumup dot co dot uk - hopefully that will appear!!!!

MrsO

anniec

Please google PMR&GCA UK Northeast Support it is our website, there is a contact email and telephone number on it. Interested in proposed leaflet. Also there is a National Charity.

Anniec - hi, and how nice to hear from a physio who knows the restrictions that should apply in PMR. MrsO will concur I'm sure as she had a bad experience with an unaware physio! I had PMR for about 5 years before it was diagnosed, luckily relatively mildly, but I was only able to keep going because Mon to Fri I got to the gym by 9.30-ish some days, late morning on others and did an acqua aerobics class at the level that I could manage (it was a fairly warm pool). Having done that I could cope with Pilates and Iyengha yoga classes that were adapted for me.

After it hit very hard 3 years ago, I was stopped from driving because a consultant didn't listen to me and decided I might have epilepsy and I was pretty much housebound in the UK because of the PMR (still undiagnosed). I came here to my flat at the bottom of a ski run and was able to ski in the mornings. I managed to walk to the bus, my skis and boots lived at the bottom of the lift. I only did very short runs, resting between on the lifts ;-) and I noticed very quickly that whilst the walk to the bus was hard work, the walk back was fine despite having skied for up to 2 hours. The action in skiing was perfect to loosen up the hips! Since then, at the beginning of the season I can manage only a couple of runs before needing a good rest and I cannot ski every day but after a month or so skiing twice a week the amount I can do has shot up and by the end of the season can spend up to 4 hours up there quite happily. This winter has been a disaster as it has been so cold and windy for nearly 6 weeks - and then it went all summer overnight so the snow is rubbish and I haven't built up the legs :-( Never mind, next season will come!

If you are having bad mornings when on pred there are two possibilities you might like to look at: one is the dose you are on is simply not quite enough, 1/2mg is enough to make a massive difference at the borderline. The other is that you might be a person who could benefit from either splitting the dose and taking the bulk (2/3) in the morning and the rest at night and that should improve the morning stiffness - used by a few people in the US we know. One lady in the UK finds taking the pred at night does the same and avoids some of the side-effects she suffers (jelly legs) - it takes about 2 to 3 hours to reach the maximum level in the blood anyway and doesn't affect her sleep pattern, her doc suggested it as a stab in the dark and it worked. There is current research being done on a delayed release pred formulation which will be taken at night at a dose of about 10mg from the outset for a year which will help massively with the morning stiffness problem. They haven't intimated what happens next though!

Have you found the other pmrandgca forum at forumup dot uk? I have a section there with useful info and have added in some exercises provided by other member's physios. I'd be delighted to add an exercise program from you if you can do it in a format we can upload. It is a much more active forum than this has ever been (nearly 22000 posts in just over a year since it was started) and over 400 members, some of whom are here too. Come and visit - bit different from here!

Eileen