Posted 04 June 2010 - 09:04 AM
We just came home from our visit today and they would like to start methotrexate injections once a week, 25mg, to help with the onset of skin and joint issues for our son. He is 12. They also put him on one aspirin a day for the swelling issues and blood vessels...does anyone have information on this drug and how it has helped and do you think its the right way to start? This is the first time we are going on medication for him...thanks for the help
Posted 05 June 2010 - 03:04 PM
Can you get a second opinion? I was diagnosed with CREST in '98 and have had a lot of experience with Rheumatologists. They all have different opinions when it comes to SD.
Posted 06 June 2010 - 04:45 AM
Thank you for the info. I just have this gut feeling that we need to think outside the box, especially that my son has a genetic disorder on top, 48xxyy, plus felt like things weren't explained to us very well. Not saying that he doesn't need to start the treatments, just making sure we go about it the right way, its so hard..but we did go on the main page here and went into experts and will call on Monday to the doctor at Jefferson Hospital in Philly. Did start to read his papers and its interesting to see that there is protein connection anyway, I am so grateful we found this group so we can make sure we go down the right path with our son.
Posted 06 June 2010 - 07:09 AM
Methotrexate is one of the immunosuppressants used in scleroderma, we have a lot of information about methotrexate you may want to look at as well as information about the other immunosuppressants.
I am on methotrexate having had to stop mycophenolate (Cellcept) because of side effects. I take the tablet form and it the beginning it did make me very tired and a bit nauseated but nothing unbearable. When I saw 2 rheumatologists last Thursday their remark to me being on the methotrexate was "we like that".
PS I am on 15mg by tablet form, I understand that injections lessen any nausea and gut problems.
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Posted 06 June 2010 - 03:18 PM
I was put on methotrexate immediately after diagnosis. My rheumatologist tapered me up to the maximum 25 mg / wk injection over a 3 month period. Methotrexate did help me tremendously. I did have skin tightening on my fingers and hands at the time, but it never went past my wrists and in fact, it actually softened after about 6 months. I have no skin involvement at this time (6 years later). I was on MTX for 3 years with out serious side effects.
I'm sorry that your son is so young and having to deal with this. It does sound like you have found a good rhematologist that wants to nip this ASAP. I hope it works. Please keep us up on how things are going.
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Posted 06 June 2010 - 03:20 PM
It's quite a coincidence that you should post this now!
My (new to me) rheumatologist told me that children respond very well to Methotrexate, with regard to the skin softening, as well as help with the joints.
However, I am not versed with information, to answer your question about your son's genetic disorder.
I will say that I was using MTX for a total of 13 years. I first began taking pills on a daily regimen, then, I drank it in juice, 1X/wk and lastly, due to nausea, I injected 1X/wk sub-cue, in my thighs, alternating every week. Folic acid should be taken the day after injecting, to help with nausea.
I am sharing my point of view as one who has experience with Methotrexate, should your son be able to move on with this medication therapy.
I hope that you are able to get answers to your questions to your satisfaction.
I wish all of you the best!