Hi
I’m 52, had PMR for 21/2 years. I did get down to 7mg Pred about 18 months ago, but had a flare up and have not been able to get below 15mg since. I saw a rheumatologist on New Year’s Eve and he would like me to start on Methotrexate. I’m really quite concerned about the side effects. It seems that I have to make a decision but which is the lesser of 2 evils, anyone been here too?
Thanks, B xx
Your tapers have been steep and fast. This may be more of a factor in your current stuckness. Have you ever tried the dead slow tapers promoted on here? Even half a mg at a time. I would prefer that to another drug. There are people who succeed with Methotrexate though. They post on here.
PMR can last for years, statistically, you haven’t had it for that long. It took me nearly 3 years to get to 7 mgs from 20 mgs.
Why does he want you to try mtx? Is he less convinced about the diagnosis now?
I agreed to try mtx this summer - and it was an unmitigated disaster for me. Although I never experienced any nausea, within a few days I felt as if I had a selection of pred-related side effects! I have never been hungry with pred - I was now. I gained a good 2lbs over the 4 weeks I held out - and they haven't gone yet. My hair started to fall out in clumps quite quickly, I had sore muscles and then I started to itch. Then the fatigue set in - and got worse for the next 2 weeks until I said no more. I felt worse with it than I ever felt with untreated PMR (5 years of that) or on pred, whatever dose it had been.
That said - many people do take it and have no problems and it does help them reduce their dose of pred some for PMR. But I think that where it works may be the misdiagnosed cases who don't have "just" PMR.
I tried Methotrexate and it did not help me to taper at all. I was lucky that the only serious side effect was my hair falling out in clumps and then growing back curly- which I much prefer to my previous thin fine straight hair!
I tried methotrexate and it did nothing for me. No side effects, but no relief either. Every body is different. You need to weigh the risks and possible benefits. Good luck.
I seem to be one of the (few?) Methotrexate successes. A year ago I had a second major flare of GCA symptoms when trying to reduce to 25 mg pred. I started on 10 mgs per week of mtx, increased to 15 mgs after about a month. I've had no major side effects, apart from curls that I never had before. I also take 5 folic acid tablets per week. Since starting mtx, I've had no problem getting down to 10 mg pred per day. I must say that, at least so far, my particular rheumatologist hasn't been as determined to reduce my dosage quickly as some evidently are. I got down to 10 mg in November and she told me to stay at that level until I see her again at the end of February.
Ive had PMR since March 2016 and have struggled up and down with the steroids 9mg being the lowest and currently back on 12. Offered Mtx several times but resisted saying I preferred the dead slow reduction method. Rheumy happy enough with that. I now have problems with knees which are sore and left one swells. Have now added hydroxychloroquine to my cocktail instead of Mtx as its not toxic to the liver and hopefully will help. I’ve had regularly very elevated liver function tests hence my reluctance to go on Mtx. Rheumatology were always suggesting it as only alternative and I was reluctant.
So far I’ve been on new drug 6 weeks and all well until knee flared again last week. Not so bad but uncomfortable. Taking it easy and haven’t started a taper yet. Hoping to do so soon.
I recommend the slow taper unless you’re experiencing other symptoms. I have always felt under pressure to try Mtx as I couldn’t reduce ‘fast enough’ but the more I read on here gave me the energy to resist until other things happened and now I think I’m in the box where the diagnosis is PMR with ‘something else going on but we don’t know what it is’ box!!
Good luck.
"its not toxic to the liver" - but it is to the eyes - make sure they are checked regularly.
Yes I had an optician appointment just after I started the drug and have been seeing them regularly anyway since I’ve been on steroids so they have a good overall picture of my eyes.
However, I was only aware of this after reading about it here and in the medication leaflet. None of the doctors highlighted it as an important potential side effect! Another big thank you to those on this site.
I didn't know about that. I've noticed my eyes are deteriorating on pred and now I'm adding the MTX. Think I need an optometrist appt.
I was talking about hydroxychloroquine being toxic to eyes. However - mtx isn't innocent either:
MTX worked well for me. I was stuck at 17.5 mgs Pred and couldn’t get past it no matter how slow I went. after the first couple of doses of MTX I felt much better and could taper.
My Rheumy plots my blood results on a graph and it was interesting to see that both the CRP and ESR reduced dramatically after starting on MTX
The main side effect for me was tiredness. Taking it last thing at night helped a lot.
My rheumy suggested MTX because the pred didn't control the inflammation. I think she thinks something else is going on. I was nervous about starting but so far no problem. I take folate six days a week and the MTX on the 7th. Only had two 10mg doses so far so tomorrow is the first day for 20mg. Good luck.
Tocilizumab(Actemra) withdrawn
Mastectomy tomorrow!
blood tests
Tapering on split dose
Tapering from 2mg to 1 Mg 
