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Drugs other than Prednisone

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julie13233
julie13233

Im a 58 female and have been battling PMR for 18 months now with not a lot of success. I started on 20mg prednisone but had to double that to 40mg to get relief. My Rheumatologist then started me on Methotrexate but as prednisone reduced inflammation went back up. She then changed this to Azathioprine which made me vomit. Then we changed to Leflunomide and this worked really well and I managed to get down to 6mg prednisone and inflammation was suppressed. Then....after routine blood test they discovered my liver decided to pack it in and I had to stop Leflunomide immediately. That was 4 months ago and as this drug has slowly left the system the inflammation has gone up slowly each month and the stiffness some days is unbearable. I have gone upto 10mg prednisone and the Rheumy wants me to try mycophenolate but am really concerned that this is drug no, 4 and each one has come with a new set of problems.  A recent eye test has shown early signs of cataracts bought on by long term prednisone use.  On really bad days I also take 200mg Celebrex which is not ideal but has few side effects.  Am I a freak?

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6 Replies

  • lodgerUK_NE
    lodgerUK_NE julie13233

    Posted

    First of all you are not a 'freak'.

    1)  Cataracts  -  do you wear glasses, if so get your optician to change your prescription to re-actolite rapide lense.   We were told about this by an optician who was a guest speaker at a support group meeting, whose Mother has PMR and pred and sun can encourage the growth of cataracts.   I had never known the reason why my optician had insisted I change when I was first diagnosed with GCA and on high doses of pred.   I did have the start of cataracts, but 10 years down the line, they have hardly grown at all.

    2) I stuck with pred and just refused steroid sparing agents, BUT and I want to empahsize the BUT, that is a very personal decision to make. I did it on the basis that pred was the oldest and we knew all the side-effects and there are many.  Why should I add other 'sparing agents' that bring along other side effects.  I added them up and thought - no my body has enough to deal with BUT THAT IS a PERSONAL decision and we all have different ideas. 

    3) 18 months is not long and how have you been reducing your pred, perhaps to fast in your hurry to get off pred.   If so this can and does lead to problems. 

    Follow this link to another part of this site and read up:  https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

    Web addresses in the first post, my "dead slow and nearly stop" approach to reduction in the replies. This thread is a fixed one at the top of the list of forum discussions on the "front page" of the PMR/CGA forum - where you can also see every thread there's been. Ever!

    https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708

    Hope this helps.

    https://patient.info/forums/discuss/polymyalgia-rheumatica-and-steroid-side-effects-new-findings-608738

     

  • ptolemy
    ptolemy julie13233

    Posted

    I am sure others must have mentioned that it is not advisable to take an NSAID such as Celebrex with steroids. Also if it works well it may be helping something that is not PMR as NSAIDs have very little effect on PMR. 
  • EileenH
    EileenH julie13233

    Posted

    It may not be PMR of course - especially since you have had such good results with leflunomide and you needed such a high dose to get the symptoms under control. That is often a sign it is another form of inflammatory arthritis. Does the Celebrex help? It rarely does in "just" PMR and that can be another signpost.

    I really wouldn't worry about the cataracts - they are easy to operate on and then never return. I'm sure you'll laugh - I keep HOPING they'll find them but after nearly 8 years on pred there was still no sign redface  - it would mean I would be able to ditch one pair of the specs that are on my nose every waking hour! It is my dream...

    How much effect does the 10mg have? It took me well over 4 years to get reliably below 10mg - some people just have more active disease than others and rheumies messing about forcing patients to try to get to too low a dose just sets them back. Getting into a yoyo pattern with the dose often makes the next reduction harder and it is never a good idea.

    Ten mg is a PMR- level dose and many people take it for years for ther things without self-destructing. A recent study has shown that PMR has a median (average) duration of just under 6 years - and most of the so-called pred side effects occur in an age-matched population who never took pred:

    https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings

    After 18 months I think your rheumy has been pushing his luck. A little masterly inactivity might have got you both rather further without the unpleasant intervals.

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