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JeniGreat

Methotrexate

14 posts in this topic

If you are on methotrexate, can you share information about why you were put on it? Were you on other meds and they no longer worked? Was it due to a particular symptom? Please explain.

 

Thank you,

Jeni

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Hello JeniGreat

 

Welcome to the forums! As it happens I am on methotrexate for diffuse systemic scleroderma with heart involvement. I was initially on mycophenolate for 10 months but stopped it due to side effects. They're both immunosuppressant drugs, as scleroderma is an autoimmune disease the idea is to suppress the immune system to try and slow the disease down and its effects on the body.

 

Has methotrexate been suggested to you by your doctor(s)?

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Amanda,

 

Thank you for your quick response. It has not been suggested but, I hear of so many people that take it and feel so much better. I was curious as to whether this is a drug that is used as the disease(s) progress and do not respond to just one drug such as plaquenil, or if it is prescribed because the disease has affected the heart, lungs, etc.

 

Thank you,

Jeni

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Hi -

It was added to my regimen to help with overlapping joint and myositis issues. My joints love it and it's helped us lower the prednisone dose.

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Hello Dorothy and welcome to the forums, I missed welcoming you at your first post. How long have you been taking methotrexate for, I think I've been on it for nearly 2 years and don't know how long I'm going to be on it for. I never thought to ask!

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hello JeniGreat

 

Methotrexate can cause lung issues so it may be contraindicated for people with lung fibrosis.

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi, I have been taking Methotrexate for almost 18 months, like Amanda I was on Mycophenolate prior to that but had to discontinue due to a problem. I was prescribed the Methotrexate (and Mycophenolate) to slow down skin tightening which had started to progress more rapidly.

 

Lizzie

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Jeni,

I was put on methotrexate (MTX) the day after diagnosis. It's an immunosuppressant so its purpose was to slow the progression of the disease. I was not prescribed it due to any one symptom. It worked for me, and I was on it for 3 years, quite successfully. It definitely slowed the disease's progression! After 3 years I was diagnosed with mild pulmonary fibrosis, so I had to come off it and put on different drugs.


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hi There!

 

I've been on both methotrexate and mycophenolate mofetil for most of four years!

 

We're hoping methotrexate comes through as my long term maintenance drug for all three - skin, muscle, joint. I know some people with RA and dermatomyositis that have had great success with it. Luckily, I've never had any sign of lung fibrosis, though we check regularly.

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Hi Dorothy,

 

I'm not sure I've had a chance to welcome you to Sclero Forums yet. I'm very glad you've joined us! I'll cross my fingers in hopes that methotrexate works for you long term. The folks without any lung involvement seem to speak pretty highly of it.

 

Would you happen to have any advice for newcomers to the forums, on how to go about posting their first message? Was it easy for you, or worrisome, new or familiar?


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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Hi Dorothy

 

Welcome to this friendly and informative forum. :bye:

 

It sounds like Methotrexate has been very successful for you, especially if you're going to be able to stop taking Mycophenolate long term.

 

I've been taking Azathioprine since January 2010 as I have lung fibrosis. To begin with I had a problem with my liver enzymes but they settled down after a little tinkering with the dosage.

 

I'm looking forward to reading more of your posts. :)


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Jeni,

 

I would also like to welcome you to our Scleroderma Family, where our goal is to support one another and share experiences, with the hope of (hopefully) helping each other.

 

You asked how Methotrexate has used, throughout this community...I haven't had to use MTX for 5 years now. However, I was originally put on MTX (which is also used, in certain cases, to treat cancer, as well) to control my Psoriasis/Psoriatic Psoriasis, as nothing else was effectively working as well as the MTX did. I used MTX for a total of 13 years and took Folic Acid to help control the nausea, yet I found it was better (for me) to take it at night and on the weekend as I still had 2 days when I was sick to my stomach, despite efforts to avoid it. Of course, not everyone experiences that as I did.

 

Jeni, I am very glad you found us and my hope is that we hear from you often :)


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi,

 

I have been on methotrexate for 9 months now a dose of 12.5mg with 1 folic acid tablet weekly as well. I haven't noticed much of a differance in my symptoms but my ESR level has come down so it must be doing something I am also on steroid tablets daily. I have systemic sclerosis.

 

I was put onto methotrexate as the steroids alone weren't taking my inflammation down as much as the consultant wanted.

 

After taking the weekly dose I feel very tired a couple of hours later and have to go to bed, its the best nights sleep I get in the week. Up until a few weeks ago I had no other side effects but now I have 4 mouth ulcers.

 

I hope this his helped.

 

winnie97

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Hi winnie,

 

You may want to call your doctor's office and see if an increase of the Folic Acid would help...or if there is something else that might help with your mouth sores.

 

I was also susceptible to mouth sores, but taking more Folic Acid seemed to help, along with the gargling of (warm) salt water.

 

I am glad to hear that you are sleeping so well the night of the dose!

 

It's also great news that you aren't experiencing any MORE side effects than you are, too!


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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