Alternative to Methotrexate?: Hi all, My... - Vasculitis UK

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Alternative to Methotrexate?

PhoebeO profile image
8 Replies

Hi all,

My hubby has Rheumatoid Vasculitis and is on lots of meds, including Methotrexate 15mg (just come down from 25mg). He hates this weekly injection, which he does himself, as he says it completely wipes him out for a couple of days. He has got to the stage where he is physically sick before injecting.

Can anyone please give any advice or whether there is an alternative to methotrexate.

Thank you so much :)

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8 Replies
Albasain profile image
Albasain

I too have Rheumatoid Vasculitis and was initially prescribed Methotrexate to which I reacted badly. I was then prescribed Mycophenolate mofetil (MMF) oral and have had no ill effects from it.

Perhaps your husband should discuss this with his consultant and have his medication changed.

PhoebeO profile image
PhoebeO in reply toAlbasain

Thanks Albasain. Hopefully he'll be seeing his consultant soon (waiting for the appointment) and I'll tell him to mention the Mycophenolate. I've not heard of this medication.

How long have you been diagnosed?? My husband was diagnosed last year and is having a pretty bad time. He is able to work but is still in so much pain, even with all the meds. He also has Rituximab infusions and I'm not sure if they help or not.

Would appreciate any advice.

:)

Albasain profile image
Albasain in reply toPhoebeO

I was diagnosed three years ago in 2012 and initially the bottom fell out of my life with the pain of it. However I am quite resilient and determined to beat this disease insofar that today I can do mostly what I want to do. Of course there may be occasional flare-ups and these are to be expected but they are becoming less frequent and more rare nowadays.

I did a lot of research in the beginning and the Vasculitis UK site with its Routemap to vasculitis booklet was a lot of help. I also had a good team of consultants at the hospital with whom I worked with so overcame much of the conditions associated with this disease much earlier than they expected. It has been, for me at least, a very steep learning curve. It has been fun too at times so recovery has also much to do with your attitude in acceptance that you have this disease and finding ways to make the best of it. So I give your husband HOPE and wish him the best will and determination to lead as normal a life as he can.

It is the partner who does bear much of the rump what with the worry and concerns they may have of their other half ( My wife will testify to that!) but it is with your support that helps immeasurably in the recovery too. So my sympathies go to you too.

PhoebeO profile image
PhoebeO in reply toAlbasain

Sadly my husband doesn't have your resilience, but I hope it will come. I must admit it has been a very difficult couple of years as diagnosis took some time. Originally he was told there was nothing wrong by one Rheumatologist. By the time he was diagnosed, the nerves in his feet were damaged and he was left with a dropped foot. This has now returned to normal but he still has painful feet. He is very fortunate that he has been able to return to work and he has thrown himself into that. I think he works too hard and really don't know how he does it.

I spoke to the Rheumy nurse this morning and she has just called back after speaking to the consultant. Hubby can come off the Methotrexate as he is also on sulfasalazine and hydrochloroquine. He will be very pleased about that!!

Best wishes to you and thanks again :)

Suzym2u profile image
Suzym2uModeratorVasculitis UK

There is an alternative to the Methotrexate injection and it is a pen, many have found the pen has less side effects but not all.

My husband John has WG and has been taking MMF quite successfully for 9 years now. He was diagnosed almost 15 years ago.

As Albasain says, best to have a chat to his consultant to discuss the possibilities of an alternative.

Best wishes

Susan

orsen-trapp profile image
orsen-trapp in reply toSuzym2u

I'm finding the MTX pen much better than the oral meds. No nausea and stomach feels happier. And it's so easy to use! I'm still wiped out for a couple of days but less so than I was. Some of that fatigue might have been the steroid withdrawal which has been going on alongside the MTX, though. Consultant did say MMF was an option if I couldn't get on with MTX but I don't want to risk another set of side-effects just as I'm getting used to the ones I have!

PhoebeO profile image
PhoebeO in reply toorsen-trapp

He is already on the Metoject pen (15mg) and is having six monthly Rituximab infusions. He is also slowly coming down on the Prednisilone. Since my original post, his consultant has told him to come off of the methotrexate as the other meds he's on should be sufficient. We will see how it goes.

Best wishes :)

BronteM profile image
BronteM

The most important thing is to know that there are alternatives. My first consultant told me that I had no choice and it was Methotrexate or nothing. I was a bit green then, and didn't question this; also the MTX made me feel so awful I wasn't even up to doing so! But I did eventually ask for a second opinion and discovered that there were several other options. Cyclophosphamide didn't work for me, but rituximab combined with the usual steroids did. We are all different and you just need to keep going until you find the best drug or combination that works for you. I hope your husband gets the right answer for him.

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