Diagnosed with pmr in 2009 and misdiagnosed with GCA in 2014 which was rediagnosed as myasthenia gravis in 2018. I’ve had 3 yearly Dexa scans which have been fine until the last one a month ago which showed osteopenia. I’ve been on pred since 2009 and went onto mtx a year ago at 15mg per week and got to 5mg pred daily. The dexa scan spooked me so the Neurologist suggested going to 17.5 mg mtx and reducing pred so at beginning of November I went to the increased mtx and reduced to 4mg pred.
I think I should have waited for the increased mtx dose to take effect as it takes up to 3 months to work and not reduced pred so soon or by as much as 1mg. I feel more shoulder stiffness etc but it’s bearable. I am keeping a watch on the myasthenia but that’s not for this forum I guess. I was discharged from rheumatology some time ago when the myasthenia was diagnosed.
Do you think I should just keep going and see what happens or move to the very slow reduction method and how should I do that from where I am? Thanks.
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Rancho
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Just some reassurance - osteopenia isn't a severe problem - it just means your bone density is lower than average for a 30 year old! Pretty much all of us with PMR are old enough to have some level of osteopenia. I was osteopeneic before pred, I was still about the same after 13 years on pred.
Any reduction step should be as close to 10% of the current dose as you can manage - and at 5mg, 1mg was 20%! No wonder you are feeling it. Now it isn't just managing the PMR that matters, it is also adrenal function returning and that big a change is hard work for lazy adrenals after their holiday while you were on higher doses of pred. Stay at the 4mg dose for a couple of months before trying to reduce any more - let your body catch up a bit. From there just do 1/2mg at a time and use one of the slowed tapers too. DL's is probably the simplest but they are all to be found in the FAQs and you have obviously seen them before.
There have been a few on azathioprine (Imuran) but I really don't remember any on mycophenolate (Cellcept). They are not usually used in PMR and GCA and when they do, rarely help. But ask it as a new thread - no-one except me and DorsetLady will see your question here on an old thread.
As PMRpro said, osteopenia is not usually an issue. In fact where I live it's called "low bone mass" and they look at other risk factors to decide whether any treatment is advisable. As far as I can tell, the greatest effect on bones from pred occurs in the first few months you are taking it. I do not know why, but apparently this is the case. Although the effect still lingers until you are into vanishingly small doses it isn't as great and continues to diminish with tapering pred dose. I was actually recommended a bisphosphonate when my DXA scan showed "only" low bone mass, but they took the other risk factors into account. I refused and with weight-bearing exercise and some judicious supplements and diet I improved my t-score from -2 to -1.6 in one year, half of that year my pred dose was still over 5 mg. So while it is good to be aware of the low bone mass, it is in itself nothing to worry about. Just a heads up: more to be looking after your skeleton through the right kind of exercise and nutrition than to worry about quickly reducing a necessary medication such as pred, especially as you have been quite successful in reaching a low dose. If you haven't read my story yet you may find some ideas to help you through this stage. Btw I started pred in 2015, still take it, although most (not all) of that time, since initial 2-year taper, my dose has been at about 2 mg.
Others have commented on various issues, but on the Methotrexate one, all I would say is that - for me, and we are all very different - it has done me well. No particular side effects (other than even more dopey on MTX days) and it appears to have assisted me down to 2mg/day of Prednisolone so far. I am happy with it and have not experienced the negative effects that others seem to be prone to. If it gets me off Pred, that will be good, and I rather expect to have to stay on MTX a longer while yet. I am on 20mg/week and noone, yet, has suggested this is reduced. Wishing you well.
Thank you for that, I’ve also tolerated the methotrexate albeit on 15mg as my lymphocytes were a bit low but I’ve gone to 17.5 now with monthly blood test to monitor levels. Same as you if MTX works for me and gets me down or off prednisolone then that’s good. Best wishes to you as well and thanks for taking the time to reply.
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