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Hi all

 I have generalised morphea undiagnosed for 4 months. All over front, most of back, legs and arms.

 

Started methotrexate (MTX) two weeks ago - test dose 2.5 then 2 doses of 15mg each with a 5mg folic acid two days after. Feeling very tired, nauseous. This weekend particularly tired and nauseous. This morning - 3 days after MTX developed a sore in the corner of my mouth. Rang registrar as per instructions on the MTX leaflet. She said stop taking it until I'm seen in clinic. I said that I had read that many people seem to need more folic acid when on MTX. She said as I've reacted so soon don't take it because I would then have to be admitted to be given folic infusions? Does this make any sense to anyone?

 

I'm the first case that the registrar has treated and she's having to ask the consultant for answers for all my questions - am I wrong to feel worried?

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Hi Chris,

 

I'm sorry to hear that you're experiencing such unpleasant side effects from the methotrexate and although I've never taken this particular medication myself, I have heard of others who've had similiar problems to you.

 

A good friend of mine was suffering tiredness and nausea when she first took MTX; she was also told to take more folic acid to counteract the side effects, but actually never really got on with the medication at all and eventually discontinued it.

 

I'm afraid your registrar would not be instilling much confidence in me and it would surely be easier for everyone if you were dealt with by the actual consultant, rather than a sort of whispers from the registrar to the consultant and back again, everytime you have a query.

 

We do recommend that our members consult a listed scleroderma expert, in order that this complex disease is dealt with by someone who has specialist knowledge about it.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Chris,

 

I'm also resident in the UK.

 

The list of specialists in my previous post below does include experts from all over the UK, including the Royal Free Hospital, of which I am a patient.

 

I do hope that you'll find the list useful and are able to get a referral to a consultant who will be able to help and advise you.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Chris,

 

I did a little digging and discovered that you were right; as it happens, the page you were looking at on our main site does not include the Royal Free Hospital, as they haven't submitted their page listing yet.

 

However, they are listed in the Eustar and SCTC lists, so I've added those resources to the web page. Bear in mind, those resources are generally not updated as regularly as our pages. Also to save you a bit of time going through the more cumbersome lists, here is the link to the Royal Free Hospital London contact page.

 

You may also be interested in our Morphea Treatments resources. Perhaps you could ask your expert about the possibility of phototherapy.

 

:hug-group:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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