Morphea duffuse: I wrote a post... - Scleroderma & Ray...

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Morphea duffuse

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I wrote a post sometime ago as i have morphea my NHS apt was cancelled again, forcing me to seek a private consultation in Leeds, glad I did, as we know it tends to be caused by an external source, and according to professor goodfield quite often a deer tick ew Treatment is a blood test for borrelia to see if I have the virus, and then methotrexate once a week followed by folic acid daily. I have to have a blood test every fortnight as it can effect the liver. Not looking forward to taking methotrexate, nauseous, hair loss etc. Anyone else taking the drug and what symptoms are you having, as a previous cancer drug, it is quite potent. Miserable.com

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dianekjs profile image
dianekjs

Hi Hidden , the methotrexate dose used for morphea is usually about 1/50th of a chemotherapy dose, so really not the same thing. You do need to monitor liver function, but that's a safety measure for many drugs. Be sure you are taking folic acid along with the methotrexate and give yourself time to adjust to the drug. Some people feel tired or a little ill for a day or two after taking the medication, but most do well otherwise. It may take awhile to get into your system and start to work

When you say diffuse, do you mean generalized morphea? Diffuse scleroderma is usually used to refer to a systemic form of the disease, as opposed to morphea, which is localized. Infection by a tick bite might be able to theoretically trigger morphea in an individual, but this is neither proven nor commonly suspected as a cause. Lyme disease caused by a tick bite can cause a characteristic rash, but it is different than the lesions or plaques caused by morphea.

I hope you do well on the methotrexate and start to feel better soon. Please let us know how it goes. 🍀

in reply todianekjs

Thank you for your reply, the professor just said mine is diffuse morphea, it is quite extensive around my body, not looking forward to starting the methotrexate but if the dose isn't as strong as used for cancer hopefully it won't be as bad as what I'm thinking, I'll keep you posted.

dianekjs profile image
dianekjs in reply to

It sounds like he is referring to what is technically termed generalized morphea, the type of localized scleroderma that has a wide distribution of skin involvement as opposed to a more circumscribed one. I hope MTX helps your symptoms. :-)

MilkMaid profile image
MilkMaid in reply todianekjs

Hi Nikki64

I am currently on 15mg Methotrexate a week and have no serious side effects, it took about 6 weeks before I noticed any improvement but it does seem to work for me. Try to stay positive & keep smiling

in reply toMilkMaid

Thank you, that's really helpful and positive.

dramatic profile image
dramatic

My daughter had 15mg weekly for 4 years. It is a much lower dose than for chemotherapy and apart from slight nausea had no problems . Her hair didn't fall out and it definitely helped . Good luck

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