Average dose 18months into PMR/GCA

HI All

Just a query, I am 18 months into PMR/GCA and having another flare. I have been put up to 20mgs for a week -then 15 for a week then all being well back to 10 (I was on 9mgs when I flared). I know it is different for all of us but just an average would be great to know.

So, is this extremely high 18 months into this, or average?

I am seeing my doctor next week and I believe he is going to want me to go on methotrexate which I really don't want to do .........

13 Replies

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  • Your post could have been mine. After titration down to 9 mg using the dead slow method my symptoms returned over 2 weeks and although I initially went back to 10 mg this didn't stop a flare. Dr put me back up to 15. I stayed there a week and over 2 further weeks I am now at 12. Will be back to using the dsns method now staying at 12 for a month before starting. I've had pmr for 18 months now too.

    I'm not sure I've answered your question but you are not alone. Hoping you have a speedy recovery from your flare.

    I should say I was at the rheumy a couple of weeks ago and he also tried to press for methotrexate, while at the same time saying there was absolutely no evidence it was of any use. I said no.

  • Thanks Cjval

    Is is so frustrating isnt it? Thank you for your reply, I was feeling like a complete failure!

    So just get my head round to beginning again. And like you I will decline the Methotrexate for now.

    Best wishes - I hope your reduction also goes well.

  • I have had PMR for 12 years, 5 of them with it undiagnosed and unmanaged. Six hours after my first dose of 15mg pred I walked down and back up the stairs normally for the first time in years. It took me nearly 4 years to get below 9mg - and that was after a major flare and being switched to different form of steroid. Then I steadily reduced to 5mg, got to 4mg, tried 3mg but got stuck at 3.5mg with increasing fatigue and went back to 5mg. Then this early spring I had a flare and was back to 15mg - I've just got back to 9mg at the third attempt I think it is. It's early days - but I think it is OK.

    US experts said some years ago that 25% of patients get off pred within 2 years but are at an increased risk of relapse at some point - it may be soon or years later. About half take up to 4 to 6 years to get off pred. The rest of us take longer and may even be on pred for life - but that may be due to adrenal insufficiency. Those figures really do represent what I have met on 3 different forums over the last 7 years or so although I know rheumies who would dispute it.

    So from my experiences, I would say that 18 months is pretty early days for the majority of patients with PMR. You can't force the reduction - all that will happen is that you will have a flare, you will have to go back to a higher dose and the next reduction may well be more difficult. It does appear that the more flares you have from forcing the pace the more difficult it becomes.

    On the forums we do push the idea of being tortoises and the "Dead slow and nearly stop" reduction approach was born out of that. Using it, a lot of people have been able to reduce far further than before. You won't get below the lowest dose that will manage the symptoms - which is what you are looking for - but by sneaking down very slowly/gently your body seems to accept the change in dose far better. This is being tried out in a clinical study in the north of England and it or similar schemes are being used by several experienced rheumatologists already. Patients have shown it to their doctors and had it approved.

    healthunlocked.com/pmrgcauk...

    PS - re methotrexate, there is very little evidence it helps reliably in PMR. But PMR is a set of symptoms that CAN be caused by other things. One is late Onset RA and it is not uncommon for patients to be told later that it isn't PMR, it is LORA. Methotrexate would be the first line medication for many (not all) forms of inflammatory arthritis. You MIGHT be one of those. For others it does seem to reduce the amount of pred they need - at the expense of adding in another set of side effects. Quite a few people who have been "threatened" with mtx have managed to reduce much lower than they were at at that time using "DSANS" so it is worth trying and seeing how you go.

  • Thank you PMRpro

    Like you diagnosed for about 5 years before diagnosis and treatment.

    When I see my GP or Rheumy, they almost make me feel it is my failing not to have reduced, as if any of us like being on Preds!

    Thank you - I won't panic quite as much then - and will begin again. I was doing the dead slow method but I think three things happened together, a stressful meeting left over from work , an uncomfortable hairdressers session and most probably more to the point, I was tapering from 9.5 to 9mg I was still having discomfort at 9.5 mg and most probably should have either sat there longer or gone back to 10mg. Lesson learnt!

    Thanks as always

  • If you have niggles at any dose - no further reductions!!!!

    I know - anybody would think people LIKED taking pred! I do wish there was some way of getting through to them that actually - since this is the only thing that makes life worth living, would they please stop panicking on our behalf. If a patient has RA do they threaten to take the pills away because the patient is doing well at a dose but not at one slightly lower which would have fewer side effects?

  • Their attitude, It really doesn't make sense does it? - and yes I will take on board what you have said, I think I made 'excuses' for the niggles, I had planed to be at 7.5mgs by end of January - Mmmmmmm best laid plans.

    Thank you for your support :)

  • It honestly is pointless making plans for the dose you are aiming to reach when. When it doesn't happen - and it rarely does - you are disappointed and you (or your doctors more likely) feel you have failed. PMR or rather, its cause, doesn't listen - or if it does, it is with the aim of thwarting you.

    Doctors tell patients it lasts 2 years, "you'll be on pred and feel fine and off pred and everything will be normal again". No it won't. The patients find that out the hard way - and come to the support groups heartbroken and depressed for us to have to pick the pieces up and set them on their way, We've asked the doctors why they do it - they HAVE to know it will be as it is. They tell us it is because they don't want to upset the patient at the outset. They just postpone it instead. - and try to blame the patient for having done/not done something. It isn't fair.

  • Mine started by saying 3 years, but then seemed to change the goal posts with the pressure to reduce.

    So, lesson learnt, slowly slowly again - thanks once again.

  • At 18 months into PMR I was on 30mg, having been diagnosed with Late-onset Asthma following the PMR diagnosis.

    I suspect the question will have as many answers as there are patients here.

  • Thank you polkadotcom,

    even if there are many answers it is nice not feeling you are the only one struggling with reduction after 18 months, which is how I have been made to feel by my doc/Rheumy.

    My Rheumy seems to change his mind, when first diagnosed he said I would still be on 20mgs up to the first year, then when I hadn't got below 12mgs within 18 months wanted me on methotrexate - which on a slow reduction I would not have been on less that this at 18 months.

    This forum give so much support.

    Thanks to all

  • I had a videoconference with my rheumy this week....it went well, we have a plan, as much as you can plan as we know....but my jaw literally hung open when he said once I got down to 5 of Pred I would stay at that dose for two years....it's been proven in his research that this protocol has kept flaring down and fewer relapses at the end....I was/am rather upset but will see....not enough time to discuss further, maybe it's negotiable.....

    Cheers

  • It is a very low dose with few side effects. The Bristol group kept their patients at 10mg for a year and got excellent results in reducing the rate of flares. Dr Hughes at Chertsey also likes to keep his patients at 5mg for up to 9 months (rahter less I know) because that makes the rest of the reduction easier because the adrenal function is able to catch up.

    If I could reliably get to 5mg I'd be happy to stay on it for life...

  • ....and perhaps if I have an awful time getting to 5 I might be happy too.....it just sounds like a prison stint at this point lol....but have been thinking it probably is a reasonable way to go....it will be a little while off anyway....

    Cheers

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