I'm new here

[Robert17]

This is my introduction as requested

I am 69 and was diganosed with PMR IN March 2012. I have had some success in tapering very slowly and by April this year was down to 2mg but the progression has always been interrupted by flare ups of varying degrees. The last one was in July and I had to increase prednisone dose age to 15mg not far from where I was over 4 years earlier. Clearly the medication isn't working and my condition hasn't been managed well. In order to get back in control I have now gone to a specialist consultant and am in the progress of undergoing a number of diagnostic tests but am still awaiting the outcome. In the meantime it looks as if I will not be clear of prednisolone even if all goes well for another year.

[DorsetLady PMRGCAuk volunteer]

Hi Robert,

Sorry to hear about your trials with PMR, and your frustration with not being off the Pred yet.

Maybe you are just one of the unlucky few that cannot get off Pred as easily as some, sure those in the same situation will be along shortly to give you advice.

Unfortunately the more flares you have along the way, the more difficult each subsequent reduction seem to be. But you have to do your bit in trying to manage the condition - and I'm sure after 4 years you know what to do - and what not to do.

Don't want to sound patronising (my journey's been as long as yours) - so I will ask the questions anyway - have you been using a slow reduction plan - i.e the DSNS plan; once you got to 5mg or 6mg have you tried reducing by 0.5mg a time (I found between 6mg and 3g very difficult due to lazy adrenals, and had to take things very slowly); have you ploughed on through your reductions without making sure you were okay each time; do you rest and allow your body to regenerate after activities?

Hopefully seeing a specialist will help - maybe he'll suggest steroid sparing drugs as a way forward.

Do hope you get some closure soon.

[Robert17 in reply to DorsetLady]

Hi DorsetLady

Thank you for your comments. In answer to your questions perhaps I could refer to to my reply to PMRpro which covers the same ground. I'll report any progress once I have the test results

[PMRpro Ambassador]

"Clearly the medication isn't working and my condition hasn't been managed well"

The medication (pred) will only work as long as you take enough to manage the symptoms. It does nothing for the disease itself, an underlying autoimmune disorder that causes your immune system to attack the tissues by mistake, thinking them to be "foreign", leading to inflammation which causes pain and stiffness. You need the dose that is enough to manage the daily new dose of inflammatory substances that are shed in the body every early morning until the autoimmune part of the illness burns out and goes into remission - which takes anything from 2 to 6 or even more years.

When you reduce you are only reducing to the lowest dose that manages the symptoms - not necessarily to zero unless you are very lucky and the reduction and the burn out process take about the same time. Otherwise, if you reduce too far you will have a return of symptoms. If you try to reduce in too big steps then you may have what appears to be a flare but is actually steroid withdrawal rheumatism. You cannot set a date by which you will be "free of pred" - PMR comes when it wants and will go when it wants. I will grant you that I am unusual - but I have had PMR for over 12 years and as far as I know it hasn't gone away in that time! It certainly didn't in the first 5 years when I had to manage without anything as it wasn't recognised and I have now been on pred for over 7 years. I have been as low as 4mg but had a flare in February and went back to 15mg. I'm down to 10mg now but any further isn't working.

Even the best specialist consultant in the world can't yet cure PMR I'm afraid! But to comment on DL's comment: yes there are so-called "steroid sparing" drugs such as methotrexate. They may or may not help you get to a lower dose of pred (they potentiate the effect) but they won't replace pred and there is no guarantee they will work and they come with their own set of side effects. They may be worth trying - but only (in my opinion) if they don't cause trouble themselves.

[Robert17 in reply to PMRpro]

Thanks for all the information and am sorry you have had such a long haul.

I have been working to a very slow taper rate of 1 mg per week so it takes 7 weeks to reduce the daily dosage by 1mg. I have recently seen a graph of my CRP marker for the first time and this shows rising trend over the last two years whilst I was tapering. The doctor had not told me about this or made any suggestions about increasing the dosage. It all came to a head recently with an acute flare which took the CRP almost back to where I started in 2012, hence the comment about lack of management. In fact that is the comment made by the consultant to whom I have now been referred. He also made the comment that the medication (Prednisolone) clearly wasn't working. At times whilst on the taper regime I felt the PMR symptoms returning but imagined this was normal and dealt with them by taking paracetamol.

I am not expecting any medication to cure my PMR but now by seeing a consultant who is a well known expert in the PMR/GCA arena, beginning to undergo a number of diagnostic tests and maybe getting accepted on one of his field trials I feel I am back in the driving seat and that in itself makes me feel much better.

I have also appreciated many of the comments on this forum about creating space to rest, not trying to do too much, about pacing yourself and being prepared to say no when asked to take something on. That has been a problem for me over the years which I am sure has something to do with my flares PMR is a difficult illness to get across to other people. They have probably never heard of it anyway and it's not like you are walking round with a broken arm in plaster. I will be saying NO more often from now on

So far I certainly feel taking charge of the condition is starting to be beneficial

[DorsetLady PMRGCAuk volunteer]

Hi again,

Your doctor obviously has little knowledge about PMR if he allowed your CRP levels to increase over such a long period without taking any remedial action! No wonder your new specialist wasn't impressed, hopefully with the new tests you can get to a sensible solution.

No Pred won't cure PMR, as there is no such thing, unfortunately, but hopefully the correct dose will control the inflammation caused by it until such time as it goes away on its own accord. That, again, unfortunately is a unknown as well!

Do hope you start to feel that your are in control at long last, as the saying goes - it is a steep learning curve, and very often, certainly at the beginning, we all feel alone and bewildered. Just remember you're not anymore!

[Robert17]

The doctor who first diagnosed PMR was very good but retired early about 3 years ago following a stroke. Since then I don't think I have seen the same doctor more than twice despite quite a few visits.