Hi everyone I was diagnosed with PMR and GCA almost 3 years ago. I managed to reduce Pred from 40mg to 4.5mg by January this year but seem to have got stuck!
I tried dropping to 4mg in May but had a flare of symptoms so added 5mg for 8 days and then back to 4.5mg which seemed to do the trick. However I now have symptoms again and could hardly get up and down the stairs this morning.
I spoke to my very nice sensible rheumy this morning who suggested the possibility of adding another medication - Methotrexate, Leflunomide or Tocilizumab (Actemra) which I was told is only offered for 1 year and 50% of patients relapse once discontinued.
I'm reluctant to try another medication due to possible side effects but I do have osteoporosis, currently treated with Risdronate.
Rheumy suggested upping to 6mg
However I suggested adding 5mg Pred for 1 week and dropping to 5mg then reviewing next month which he was happy to do. I'm due to go on holiday - Norwegian Fjords - on 3rd August and want to be as fit as possible. Long-term, I'm not sure what to do.
Your advice would be much appreciated.
Many thanks
Written by
notsoperfect
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If you have got to 5mg on your own, I would resist adding methotrexate or any other steroid sparer since none of them, even Actemra, are guaranteed to get you off pred altogether and the potential adverse effects are considerable although many patients experience none.
I was stuck on heading for 20mg and climbing after a massive flare of PMR. I have been on Actemra for PMR for over 2 years and have only been able to get to 7mg - my rheumy didn't expect me to get lower than 5mg anyway. Methotrexate made me very unwell. I have never had bad problems with pred except the skin on my shins is very thin and damages easily now. Otherwise, nothing.
You are never heading relentlessly to zero, You are looking for the lowest effective dose and it seems yours is 5mg. Even slightly too low results in the unmanaged leftovers of inflammation each day building up until you reach a threshold where symptoms become apparent. Do the flare protocol again but don't go back to 4,5mg, that is too low at present. And don't try to force the reduction - that will make it even harder when you flare and end up in a yoyo pattern with dose.
Thank you PMRpro for your speedy response. I follow this forum every day and thought you wouldn't recommend a steroid sparer having got to a 'lowish' dose of Pred without one. I'm hoping my rheumy won't push for this, especially as he's concerned about my osteoporosis - although I guess the main damage is done.
It's always a bit disheartening to have to increase pred, even slightly. But at least it's a medication which gives us some sort of life! With regard to bones, have a look at my story as it may give you some ideas about how to improve bone health:
Agree with PMRpro - but you might find you need longer than a week on the increased dose… so long as you don’t stay longer than 14 days, it’s quite safe to drop back down to just above previous dose which caused the flare.
Yep - depends how much inflammation there is to clear -and that’s difficult to tell…but as you had a flare a couple of months ago probably more than you think,…
Hi, I was on methotrexate for 6 months. It worked very well and cleared all my symptoms. However I had very bad side effects such as nausea and exhaustion. I had to discontinue so I wouldn’t recommend it. Apparently it’s fine for some people.
Hi HollyDaisy1Thank you for sharing your experience of methotrexate with me. I am concerned about the possible side effects and it is a bit of a gamble!
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