Anyone taking methotrexate for Behcet's - Behçet's UK

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Anyone taking methotrexate for Behcet's

nuggetscorner profile image
12 Replies

Anyone taking methotrexate for Behcet's? My scalp is so bad I am starting it Friday. Desperate this time, so rheumatologist thinks we needed to step up to this level of immune suppressant drugs.

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nuggetscorner
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12 Replies

I am taking Methotrexate and Infliximab infusions.

Have you ever tried Azathioprine as it's the usual starting immunosuppressant for Behcets?

Lorrie profile image
Lorrie

I have been on methotrexate for 3 yrs & it has definitely made a difference for me. I started on tablet form which made me feel quite sick but since I went on to the injections the ulcer outbreaks have reduced considerably. I hope it helps you & you find some relief. All the best. XX

Guna1003 profile image
Guna1003

I was on methotrexate for almost a year and it didnt help reduce my symptoms. Everybody's different so it may turn out to be exactly what you need. I've moved on to injections recently, still no change but I'm still Hopeful!

Alex97 profile image
Alex97

I m due to start this drug instead of cellcept on Monday after a particularly bad flare. I m also on 3 weekly infliximab infusions. Hoping this will sort me out!

UKbehcetsLady profile image
UKbehcetsLady

I am on Mtx. First I was on tablets. I had occasional sickness, but I know others have found this side effect problematic I.e. when taking mtx in tablet form. Despite my feeling it helped a lot I was switched onto something else for a while. Now I am back on mtx, but this time the weekly injections. I’ve been on the injections 2-3 years now.

I had scalp problems for years before the Behcet’s was identified - I rarely get problems there now.

So don’t worry at all - but do be aware you are more susceptible to infection, and will need flu jabs etc.

UKbehcetsLady profile image
UKbehcetsLady in reply toUKbehcetsLady

Forgot to say that on Mtx I get very few outbreaks of ulcers.

jzeis profile image
jzeis

Hi nuggetscorner,

I had bad scalp problems for years from BD (painful lesions) and my rheumatologist prescribed Capex shampoo (fluocinolone acetonide, a steroid). It works great for me -- maybe you could ask your MD about it?

All the best,

Joanne Z.

(We used to have a yellow lab named Nugget :-)

OpsDave70 profile image
OpsDave70

I’m on Methotrexate, Humira and Plaquenil. The combo is starting to work. Started Methotrexate in addition to my other meds back in November. Pills made me neuseous, so I went to the injections, which work much better. 24 hours or more after injection, I take Leukovorin Calcium to shut the Methotrexate off. It has been working remarkably well.

Zuzu798 profile image
Zuzu798

Hi there I was on Methotrexate for about 6 months but had very bad side-effect to it as the cartilage in my nose started thinning and a ulcer there have almost left a whole between the the nostrils

swanseakev profile image
swanseakev

Hi.

Been taking MTX injections weekly for last 3 years with no problems

I Recently started on Humira with the MTX....only lasted a month on this before had to stop Humira injections and the MTX

Suffering a really bad flare up since Christmas when i started Humira and stopping MTX

Got an ulcer on my eye last 2 weeks as well as other problems

But MTX has been a great help over the years

Good luck

Kev

Zevas profile image
Zevas

I tried methotrexate but it made me really sick so I had to come off it I now have infliximab infusions and take Dapsone for scalp and skin issues and this works amazingly.

I started Methotrexate about six weeks ago and my Rheumy just increased it from 10 to 15mg per week. I do the injections. I also take 4-24mg of prednisone per day,as needed (trying to wean it down to 4mg every other day and then finally to only during flares). I DO think that it is helping, with joint pain and skin/mouth issues (rash, ulcers above and below, feeling like someone is scraping a sunburn, etc) I really like that the genital ulcers are very much reduced and the sores in my ears are almost gone, already.

Good luck with this- I hope that it brings you relief!

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