It turns out I do have PMR after all!!

[suzy1959]

I posted back in November that, after a consultation with Prof. Dasgupta, he considered I did not have PMR and had not needed the pred. that i had been taking for a year. Luckily, he also ordered lots of further tests that I had not had before including a PET scan in case I had any other form of Vasculitis. Again luckily I had private medical insurance up to the end of the year and managed to get the PET scan done in December. I don't know if I would have been able to have it on the NHS as it is so expensive ( £1,250!!). The PET scan did show definite signs of active PMR, so I finally, after 2 years, have a definitive diagnosis, despite not having a typical presentation-e.g. no morning stiffness, and only 52 years old at onset. I would like to think that any of us could have a PET scan when diagnosis is so difficult.

Anyway, it means I am back here and trying to get better- I have managed to get down to 8.5 mgs pred.( the lowest I have been so far), helped a lot by the Amitriptyline that Prof. Dasgupta prescribed, but I have hit a wall now. The Amitriptyline has also helped my sleep no end. He is now going to put me on Leflunomide ( a DMARD) which, he says has better results with PMR than Methotrexate, which I took for over 6 months with no benefit at all, and should help me to taper the pred. I will have had the PMR for 2 years in March, and been treated for it for just over a year now. I am really hoping to see some progress soon !

[PMRpro Ambassador]

Sorry to hear you HAVE got PMR after all (as I wouldn't wish it on my worst enemy) but equally pleased that even the great are prepared to admit they got it wrong and acknowledge that there are atypical presentations! The literature does say that the younger patients often don't turn up with the same sort of presentation as older ones - and I am firmly convinced there are a lot of younger patients who are unidentified and given other diagnoses - including mental health problems.

I was 51 when mine started and it did so with thigh claudication - the stiffness didn't appear until several months later and even then I wouldn't have described it as morning stiffness until much later. If I was stiff at the start it was all day and I couldn't lift my arms above my head for long either. Normal bloods - my ESR has never been above 7 even when I could hardly move - and CRP stubbornly normal too!

I also got stuck at 8.5mg - with a few other side-events that necessitated a return to 15 and even above - but have steadily reduced to now 5mg since being put on Lodotra 16 months ago. I wonder if Dasgupta would consider that - it is commonly used in Germany for PMR and I know there is meant to be a trial of it for PMR in the UK. Not only have I got the dose down but since going on it have also steadily lost the weight I'd put on, first because I couldn't exercise pre-pred and then with Medrol, a total of about 30 lbs so far. You take it at 10pm, it releases early morning so you don't have to wait for it to kick in and they hope to see fewer side-effects with it. I think it is brilliant.

£1,250 isn't that expensive for a scan of that sort really - there are lots worse (and they are done on the NHS when required)!

[Celtic PMRGCAuk volunteer]

Suzy, welcome back! Although obviously I'd rather you didn't have PMR at all, you must be so relieved to finally have a definitive diagnosis, all thanks to the PET scan.

Hopefully, you will fare better with your steroid reductions when on Leflunomide. I was at a meeting a couple of years ago at which Prof Dasgupta talked about the very good responses they were experiencing with this drug.

Just so that you know what to expect, and in case you are not already aware, the literature produced by Arthritis Research states that Leflunomide doesn't work immediately. It may be 6 weeks or more before you notice any benefit and may even be as long as 6 months before you feel the full effect. If we learn anything from suffering with PMR/GCA, it is patience! All good wishes.

[Robert17]

Suzy

I have not been on this forum for long and have only just spotted your post from 3 years ago although I believe I remember you from the initial meetings of the Kent support group

I am now with Prof Dasgupta after a series of flares over the past 4 years with each one leading to increasingly higher pred doses from which to start tapering again. The last one took me back up to 15mg. Since the steroids no longer seem to be working for me in managing my condition I am in the process of undergoing a whole series of tests including a PET scan looking for large vessel vasculitis amongst other things. The scan was negative but I have just had an ultra sound scan which revealed a significant thickening of the arteries implying that the PET scan produced a false negative. Apparently this is not unusual when taking high doses of Prednisolone (over 10mg according to the professor) and he is certain that the problem is indeed LVV.

He is very anxious that I get the pred level down to safer levels and has recommended Leflunomide. I have read a lot about the potential side effects of this drug but the longer term effects of the Prednisolone which I am now experiencing are probably worse.

I would be very interested to know how you or indeed anyone else has got on with Leflunomide and whether it helped you make the progress you were hoping for.

[suzy1959]

Hi Robert, it is interesting reading my posts from 3 years ago- not a very pleasant experience as I am currently on 15mgs. and have made no progress really in the 4.5 years I have had PMR. I did go on Leflunomide for quite a while and then had a massive flare when reducing as well as my blood pressure shooting up due to it, so Dasgupta agreed it was not working. Since then, I have changed Rheumys because I found him very unsupportive , so concerned about my pred. intake that it made me feel like a failure, and he did not give me more than about 10 mins.each time, despite seeing me privately. I have also developed OA in both knees so my mobility is seriously impaired.

I now see Dr. Hughes in Chertsey on the NHS and have had a much better time with him! He is less panicky about the Pred., realising that there is not much we can do to change the progress of the PMR. At my request and because I am so fed up with the lack of progress, I have started to take Mycophenylate ( which Dasgupta had suggested) to see if it might work, but I'm not holding out much hope. It does seem as if there is a significant number of us who do struggle more and for longer , where, as Dr. Hughes says, the PMR does not seem to have read the textbook! He assured me last time that I am not the only one.

The only positive so far that I have been able to lose all the Pred. weight and more ( 4 stone in all so far) which has helped me to feel a bit more in control and I hope has helped my knees.

Your news has unsettled me a bit- should I be having more investigations or is it more about coming to terms with the condition and the necessity of having the Pred. for as long as I need it? This, I think, is a constant dilemma for those of us with the more atypical presentations and our Rheumys too!!

Do keep in touch and let me know how you get on.