I was diagnosed with PMR in January 2017 and posted a question here in August 2017 when there was a suggestion from my rheumatologist that I introduce Azathioprine in addition to prednisolone as my markers weren't coming down sufficiently. I decided against azathioprine then as I was pretty much symptom free and not really reacting badly to the prednisolone apart from my skin getting thin and crepey, particularly on my arms. At that stage I was down to 10mg of pred. In September 2017, and because of my previous history (breast cancer in 2013) , the rheumatologist ordered CT and bone scans (which were fine) and then, eventually, a PET scan too. That showed low grade vasculitis in my sub-clavian arteries and also vasculitis in my right calf which seemed to explain the cramp I was experiencing when walking.
Since then I have continued to reduce the prednisolone slowly (0.5 mg every 4-6 weeks) and am now on 5mg with no obvious symptoms apart from the leg cramp. But my CRP has remained stubbornly stuck in the low 20s and I have now been referred to a vasculitis consultant who wants me to start Methotrexate to try to reduce the inflammation further. He does not think the prednisolone is sufficiently tackling this and is concerned that there is an increased risk of further damage to my leg and blood vessels generally if the inflammation goes unchecked. As I feel clinically well and am very drug averse, I am reluctant to start methotrexate, particularly in the light of comments on this forum as to side effects. Also, from what I have read, there is no high quality randomised trial evidence that it works in cases such as mine.
He does appear to accept this and has said that I could continue as I am and 'watch and wait' instead, but his clear opinion is that I should try the methotrexate and get off the steroids as soon as possible.
My GP, who I trust (but who by her own admission is not a specialist), also thinks that on balance I should try it but, equally, would be happy for me to decide not to!
I feel totally confused as to what to do and would welcome any views.
Thanks!
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skye_blue
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I am in no way qualified to give an opinion. Your case sounds quite complex and as a layperson I can’t really understand the treatments you are being offered especially as you are feeling quite well. I hope someone more knowledgeable comes along for you. If you are unhappy with your Rheumatologist, I would suggest you seek another opinion. My second Rheumatologist was great. The first was not so up on PMR.
Thanks SheffieldJane, I appreciate your reply and also the suggestion of seeking a second opinion. I'm not really unhappy with my current doctors, just very apprehensive of methotrexate so will probably take the line of least resistance and 'watch and wait' for a while longer.
If I have understood properly, Methotrexate is an arthritis drug and it’s efficacy with PMR is a bit hit and miss, yet there are people on here who say that it got them on to a lower dose of Prednisalone. The side effects are significant but not as scary as Azathioprine!
It's role in PMR should be regarded as ONLY a steroid sparer - it is thought it changes the way the body processes pred so the effect of a given dose is greater. Or you get the required effect with a bit less. In addition, in some people it seems to suppress the immune system and reduces the inflammation so there is less to manage.
But PMR and GCA seem to be very heterogenous - so it will work for some and not for others.
After a flare & badly swollen ankle, my rheumoltologist suggested I go on methotrexate some time ago as a steroid sparer; I decided not to due to the possibility of rather horrible side effects which I thought were worse than pred. However, my CRP has been 1 for some time, so am in a totally different situation to you.
Thanks Janstr, its the possibility of the horrible side effects and no clear evidence of the benefits that concern me too. As I said to SheffieldJane, I think I'll probably 'watch and wait' for the time being.
You will have seen my other replies about this - the only way to find out is to try. That applies for both adverse and beneficial effects. I have always said I wouldn't but after a lot of thought and discussion with my rheumy I did try. I wasn't prepared to accept the downsides for long as I have always done well with pred and have next to no side effects. My ESR/CRP float along "in normal range" for the vast amount of the time - so I'm also in a different situation: something there that causes symptoms but next to no evidence...
The guidelines for large vessel vasculitis do say to add an immunosuppressant - but they are well over 10 years old, published in 2009, so I'd have thought rather out of date.
Thanks PMRpro, I haven't seen your other replies but this is very helpful. I accept that the only way to find out is to try, and that everyone reacts differently, I'm just reluctant to add another very toxic drug when I feel well. I think I will probably put off this decision for a while longer and 'watch and wait'.
I tried mtx for 4 weeks last summer - I felt that all it did in that time was make apparent effects that are normally ascribed to pred and which I had never experienced with the prednisone I am on. I had joint and muscle pain, was hungry and gained weight, my hair fell out in chunks and I was generally unhappy. The worst was fatigue that started after a week or so and steadily got worse - until I stopped for a trip to S Korea. I didn't start again because I couldn't face not being able to put one foot in front of the other for the foreseeable future! Not everyone experiences that though. You have to try to find out.
Thanks so much PRPpro. Poor you! In view of this and all the other posts that I've now read here, I've pretty much decided to hold off for the time being, although I may have to reconsider at some point I guess in view of the vasculitis complication. I must say that I thought PMR was now accepted as being a type of vasculitis but the consultant says that not everyone with PMR does show evidence of vasculitis..... Anyway, at least I feel well which is the main thing.
I was on Prednisolone for 7 years. I also tried all the medication you have mentioned, but had adverse effects. I decided to stick with steroids in the hope that they would do the trick. I had GCA. On 6th July 2018, I had me last steroid because after a PET scan April time, I had no vasculitis. I am not very well at the moment, with arms aching, but would advise - the decision is yours. Steroids are evil, but they do the trick and at least with just one medication you know where you are! If I can be of any further help, please do not hesitate to write and GOOD LUCK!
Thanks so much for this Sookiesue, I've now told the consultant I will hold off the methotrexate for a while which feels like the right decision. I hope your aches settle down and that you can continue without the steroids. Good luck to you too!
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