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Has anybody found methotrexate to help with plaque morphea?

morphea localised morphea plaque morphea methotrexate

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#1 Bethany8

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Posted 27 August 2015 - 06:21 AM

Hi,

 

I was diagnosed with localised scleroderma back in 2010. I started with one large patch at the very top on the back of my leg. 5 years on I now have 2 larger plaques and 4 smaller plaques. Based in the UK, I was referred to a specialist a few years ago and since then I've tried the steroid creams, PUVA light treatment and now I am on methotrexate. 

 

At 22 years of age, I don't really want to be taking methotrexate but I felt I had no other options. I want to know if anybody else has found methotrexate works for them? I am on 10mg (4 x 2.5 tabs each week) and take folic acid every other day apart from the day I take the methotrexate. I cannot drink alcohol on these tablets and I need to be careful in the sun and whilst I understand health comes first, I enjoy socialising and going on holidays. 

 

I don't know how long I will be on the methotrexate for and I often think about coming off it but then I worry in case any other patches appear? At the minute it seems to be stable (ish) and I haven't had new plaques appear since being on methotrexate.

 

Hope you can help.  :happy: 

 

Beth



#2 Joelf

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Posted 27 August 2015 - 09:48 PM

Hi Beth,

Welcome to these forums!

The PUVA is now the recommended first-line treatment for morphea, but as you've already had that, I suspect that's perhaps why your consultant has prescribed Methotrexate for you.

I've never taken that particular immunosuppressant, but I take Azathioprine, which is very similar and has the same warnings about sun exposure (not that there's been much chance of that this summer!! :wink: ) I can understand your reluctance to take this medication, but would caution you about coming off it, without speaking to your consultant first. Perhaps you could speak to your consultant's secretary and ask if he could review your medication and if it would be possible for you to discontinue it? (I usually try and pester speak to my consultants' secretaries, if I have any queries regarding medications etc.)

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#3 Amanda Thorpe

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Posted 28 August 2015 - 04:27 AM

Hello Beth

Welcome to the forums! The good news is that morphea is never going to be life threatening and although a 2003 study showed that about 25% of cases developed one non skin related symptom and 4% two such symptoms, at follow up, NONE had developed the systemic disease.

Although I have morphea I also have bullous morphea and systemic scleroderma so my experience of methotrexate isn't really going to be a good comparison for you. I know that information says plaque morphea can begin to fade, even without treatment, between 3 to 5 years and whether it fades or not, it can improve and worsen spontaneously. You know all of this because 5 years on you're experiencing new patches. How do the original patches look? If they've faded or began to fade that might give you an idea as to how the new patches will behave over time.

I know that your disease isn't life threatening but it can still be serious, causing disfigurement and even affect your mobility. I don't expect you'd want a plaque appearing on your face or neck nor would you want a plaque to impede a joint, say knee or elbow, if the morphea also affects the underlying tissue, it could.

Whether to medicate or not is the big question asked around here and it's asked often. We all have different issues to consider, for me the key issue is quality of life, not quantity but as I have a life limiting disease that's kinda easy. I actually think it's more difficult for you, not so cut and dried! Do you wait and see how the morphea progresses, remaining free to consume alcohol and enjoy the sun but risk appearance of a high visibility plaque or curtail your vibrant social life, run the risk of side effects and all for something that might never happen anyway because remember that morphea can improve, even without treatment. Yeah, so let me know how you get on making that decision!

Of course you could try the methotrexate for say 6 months as it does need time to bed in. As for **drinking, you only take the methotrexate once a week so ask your doctor how many days either side of your weekly dose you can have alcohol. I know the leaflet that comes with it says never but I have had a doctor suggest otherwise. BUT as I have also had a doctor suggest scleroderma patients are easy to cannulate, check it out for yourself!

Take care and let us know what you decide.

** When I say drinking, I mean moderately as within the current UK guidelines. If someone is going to binge drink a) don't take the methotrexate as they might just destroy their liver and then morphea would be the least of their worries as they turn yellow, swell up like a balloon as their body retains litre upon litre of water. I ain't joking either, I am describing what happened to an actual person.**
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Also tagged with one or more of these keywords: morphea, localised morphea, plaque morphea, methotrexate