Methotrexate and GCA

[gtate1914]

Has anyone with gca and taking methotrexate felt that it helped them to taper their pred?

[DorsetLady PMRGCAuk volunteer]

Hi,

You probably won’t get a lot of answers from the UK, it doesn’t seem to be used so much here as in other places, but there are a few patients on here so you may be in luck.

[Linny3]

I took it from the beginning for pmr. It did not help with the tapering. May have helped a little for the pain. I finally went off of it after 16mos. on it. I got so tired of mouth sores and hair loss. All the literature I read about it is very mixed. Although, There are a few countries that don't use prednisone and only use Metho.

[HeronNS in reply to Linny3]

Where would they only use methotrexate if pred is what prevents loss of eyesight? Are you sure it isn't methyl-prednisone, which I believe is administered intravenously to enable a very rapid treatment to save vision?

[Janstr]

And further to gtate1914s question, if it does help taper the pred, which drug has worse side effects , pred or methotrexate?

i.e. Is it better to be in pred for longer, or take meth as well so as not to be on the pred for do long!

[Hidden]

I have PMR/GCA. Took Methotrexate for about 3 months last year. No idea if it helped. I do know it made me feel ill with stomach pains, nauasia and even more hair loss. Stopped taking it and took a few weeks to recover. Hope that helps.

[gtate1914 in reply to Hidden]

what dosage of pred and methotrexate were you on the time and how are you doing now?

[Hidden in reply to gtate1914]

At the time I was still on 30mg following flares due to too fast reductions. Now just got to 22.5 dropping only 0.5mg every 2 weeks. Had got to 22mg in April but another flare put me up following removal oof squamous cell from nose and having to have my beloved dog Pippa put to sleep. Diagnosed Nov 16 so has taken a long time. Beenn put on Leflunomide which I started last Monday. Got a sore throat and cough so have to stop as can cause more serious problems! See my Dr tomorrow. I can cope with the Pred but do I need other drugs to make things worse. This is the first time I hae had any other infectons no colds or anything since I was diagnosed so gutted.

[gtate1914]

Been on methotrexate for 11 weeks and so far it is not helping me to reduce by even 2.5mg. Not sure if I am going to continue it.

[Daisychain12 in reply to gtate1914]

It’s been suggested to me but I am resisting out of fear of it xxxx

[Linny3 in reply to gtate1914]

Methotrexate takes 3 months to start working. It will take an even longer time to affect the prednisone. This is not a quick fix. When you take it, it is for the long haul.

[Cally55]

Did 9 weeks on methotrexate along with 13.25 pred. Felt weird most of the time, as if intoxicated! Also awful bowel effect. Saw consultant last week who said I was intolerant of it and prescribed leflunomide. Haven't started yet as have a bit of a cold, a recent cataract op and the heat wave. I was prescribed it because still on about 14mg of pred after 2.5 years and have had v bad pred effects. I really wanted it to work, but although I feel a bit rough now after 10 days off it I think the GCA type symptoms are actually less than when I was on it. Of course these may well have got better anyway.

My only concern it that the leflunomide may take 12 weeks to get going during which I won't have reduced the pred, making a total of 5 months.

[Sho-Sho]

I took methotrexate last year to try and help reduce my pred dose.

Diagnosed with GCA in August 2016, by January on 22.5 mg of pred and struggling to reduce - prescribed methotrexate by my Rheumatologist, took it for 4 months but felt so ill came off it. However I was able to reduce down to 17.5 so possibly it did help. I do know it takes at least 12 weeks for the drug to start working. Having researched it a lot there is a school of thought that unless you take it right at the beginning it's not effective.

Hope this is helpful.

[gtate1914 in reply to Sho-Sho]

Can you remember where you read unless you take methotrexate right away it’s not as effective for GCA? My Rheumy is insistent I go back on it, quit it 2 weeks ago after on it 11 weeks... but I started it late in my diagnosis of GCA, at about the 4th month.

[Marijo1951]

I was diagnosed with GCA and PMR a year ago and started on 60 mg per day of pred. Twice when I reduced to 25 mg I had a sudden major flare of GCA symptoms and had my dosage increased to 40 mg. The second time was just after Christmas and at point I was also given 10 mg of Methotrexate per week, later increased to 15 mg which is still my current dose. Since then I've managed to taper down to 17.5 mg of pred per day without flares and I go down to 15 mg next week.The most obvious side effect has been some bouts of diarrhoea. My rheumy increased my dosage of folic acid from one tablet to 5 per week to help with that. I also found that if I took the Meth in the morning, I felt even more fatigued than I did already. I now set my alarm for 11 pm each Thursday and take it shortly before I go to bed and thus avoid the crippling tiredness. On the whole I think the Methotrexate has helped me to reduce the pred.

[gtate1914]

Methotrexate benefits sound dubious. With 11 weeks on it I notice no benefit. Whenever I bring up side effects to my rheumy she instead wants to attribute them to the pred, which could be true, but together I think these two drugs do a real number on us. Presently I am trying to stabilize at 47.5mg pred, but may have to up (again!) to 50 mg., am only tapering by 2.5mg each time, will only do so if no gca symptoms.

thanks for the input on methotrexate and your experiences!

[Daisychain12 in reply to gtate1914]

Hello darling I just can’t cut down in fact I want more Pred but I have query re glaucoma which will be a disaster. If I cannot take Pred I will be in trouble xxxxx

[Linny3 in reply to gtate1914]

You can take it by giving yourself a shot and that alleviates most of the stomach distress. I had to switch to shots and it was hard to remember to take it once a week.

[PMRpro Ambassador]

If it is started right at the start - which top experts in GCA say seems the way it should be used, started within the first month - it is a bit difficult to know if it is helping or whether if you had tapered slowly and carefully (the way we bang on about) then you would have ended up in the same place anyway. The experts say starting it later in GCA doesn't seem to achieve anything. Many feel that while it may be useful in PMR but doesn't have a role in GCA.

I know a few people who have used it in PMR and who say it DID help - judging by the return of symptoms when they stopped taking mtx for some reason. One lady had no bother at all with mtx but it only allowed her to get to a slightly lower dose of pred. When she tried leflunomide she says she felt it kick in suddenly and then she was off pred in 8 months pr so. Now she will try to get off the leflunomide.

I think it is probably worth trying providing you have no adverse effects - but first you have to know how your body copes with pred so they can't blame anything on the pred. Having tried mtx for 4 weeks I can say that taking the mtx resulted in the appearance of PRED side effects that I hadn't suffered since I was on Medrol (methylprednisolone) for several months and which was horrendous. I also felt as if I was in a flare of the PMR with joint and muscle pain and sweats again. And then I had the mtx effects. Four weeks was more than enough for me!! It took a good 10 days to feel any better - although the overwhelming fatigue went fairly soon thank goodness.

[gtate1914 in reply to PMRpro]

I did not start MTX until almost 4 months into my GCA diagnosis. I'm thinking I will stop it. It's hard to know which drug causes what when they both cause so many of the same side effects.

[gtate1914]

PLUS, MTX puts one at higher risk of infection. Rheumy wanted me to take Bactrim for prophylaxis which I stopped a couple weeks ago because of side effects. (only took it 3 times) . She will be very unhappy with me at my next visit, but it is my body.....come whatever may.......

[PMRpro Ambassador in reply to gtate1914]

I'm sure Prof Mackie said prophylactic abx are usually used in other countries for severe vasculitis - and doesn't feel it appropriate for us. I prefer to cross bridges when I get to them - and Bactrim is horrible stuff even when you really need it

[gtate1914 in reply to PMRpro]

I agree. Wait until there is a need then address it, don't pollute with more poison.

[Daisychain12 in reply to gtate1914]

Yes! It’s scary to say no to them. Xxxx