Methotrexate

[lindaoquilts]

New kid here - diagnosed with PMR May2016. Had a flare Feb./17, had to go back up to 15mg. Pred. The specialist also prescribed Methotrexate, he called it a "steroid booster". Side effects are appalling. In reading your posts, I have so far not seen any mention of Methotrexate. Do any of you have experience with the addition of this drug?

[SheffieldJane]

Hi lindaoquilts,

No personal experience of Methotrexate I'm afraid or thank goodness maybe. It's usually prescribed for Rheumatoid Arthritis isn't it? It is essential to take Folic Acid alongside to negate some of the side effects. If you have a simple PMR diagnosis it is not clear to me what value Methotrexate would add to Prednisalone. I was diagnosed at around the same time as you and am currently stuck at 7 mgs but always using the dead slow nearly stop method of reducing. I would rather take my chances with Pred I think, we understand each other now. Especially when you experience horrendous side effects. Of course I don't know your medical history.

I hope someone can enlighten you. Welcome to the site ( I tend to avoid primary care doctors now and get my support from the men and women here). I have a star of a Rheumatologist too.

Do you make quilts Linda - if so - how lovely!

[lindaoquilts in reply to SheffieldJane]

Thank you for your response, Sheffielfjane. Yes, I make quilts. I overheard my husband tell someone that he knew I was very ill because I hadn't been in my sewing room for 3 months.

[PMRpro Ambassador]

You can't have read a lot yet then! It gets discussed on a regular basis on all the forums!

Methotrexate MAY increase the effect of a dose of pred. Or it MAY NOT. I think a lot of people don't find it helps and the recommendations from ACR/EULAR are that it MAY be used but only after discussion with the patient. For many it just adds an extra layer of side effects - which can be quite unpleasant, as you have found. Some doctors think that it makes flares less likely - I'd rather use the slow approach to reduction we talk about here all the time and avoid flares that way : experts say that flares are most often due to reducing too far or too fast. Using the Dead Slow approach cures that!

An Italian group studied the use of methotrexate as a steroid sparer and found that yes, it did reduce the AMOUNT of pred the patients needed over a period of time. But long term follow-up showed the incidence of pred-related side effects was the same in both groups. So you are left to ask: what was the point? They also found that a third of patients still require some pred after 6 years.

clinexprheumatol.org/articl...

A new study has found that long term use of pred in PMR is not associated with any increase in adverse events compared with a non-pred using group except for cataracts. There is a lot of unjustified fear of the pred doses we use in PMR.

practicalpainmanagement.com...

Matteson, one of the authors is an expert on PMR/GCA and involved in drawing up the guidelines.

If you can take methotrexate without side effects and you feel it helps fair enough. Otherwise, I don't think anyone should be asked to use it. I wouldn't - and I have been on pred for 8 years, I have had PMR for 13. I have no significant side effects - and most of them can be managed when you know how.

[GerriMc in reply to PMRpro]

MTX helped me get below 17.5 mg pred. I struggled even though I reduced very slowly. It made me very tired and weak on the day I took it. On the advice of a friend who takes MTX for Crone's, I started taking it at night so I sleep through the tiredness and don't really have any significant side effects. My rheumatologist refers to it as "steroid sparing".

He has suggested we might look at Tocilizumab. That scares me a bit TBH.

Might try to stick to the slow taper and MTX for now.

[lindaoquilts in reply to PMRpro]

Great information, PMRpro, thank you very much.

[lesley2015]

Hi

It seems PRMpro has covered all the scientific points etc.

I did try Methotrexate tablets, and I could not tolerate them, I was already down to 10mgs, but thats where I struggle and the GCA symptoms seem to come again.

I felt sick, so tired and just really poorly on the Methotrexate - I gave up after just over a month, but we are all different.

However, I am now of leflunomide, using as a sparer, and first couple of weeks were difficult but I am ok now It appears with the GCA/PMR I now have inflammatory arthritis too and I do believe the leflunomide is giving me relief with this .... so time will tell.

Best wishes

[Brantuk]

Hi Linda - I'm on 25mg Mtx per week and though it does knock me out on the day I take it, I get no other noticeable side effects. I am thinking of taking it at night instead of mornings so I can sleep through it. It's been prescribed for me as a steroid sparer, like others above, for the past two yrs now. All I can suggest is you stay well away from ill people (colds flu etc) because it reduces the effects of the immune system and can leave you prone to picking up bugs. All the best.

[Ronswife]

I was diagnosed incorrectly as RA

And took methotrexate. I had the PMR pain forever. I felt so sick with methotrexate and one day fell asleep sitting up on the very edge of the couch for two hours. Woke to an extremely high dangerous fever and ended up in the hospital. My coworker had come to work with flu symptoms. It hit me hard and fast. Beware of infections.