MCTD Support Group

there is one that they have been considering for me....trying some others first, but it is a chemo drug that has shown some benefits and you get it by iv. I heard it is pretty harsh though.

THANK YOU AND IF YOU SEE OR HEAR ANYMORE LET ME KNOW

YOU CAN TELL IM STILL NOT GOOD ON THIS SITE. REPLY #2 WAS FOR BRUNOB NOT MYSELF. LOL

Hi Sand T, my rheumy tells me I am one of his most sensitive med patients he has. I also have RA so have researched many meds. None that I have found are without some serious side effects. It took me 3 tries of Methotrexate before my body could handle it and I still am only low dosed. When I tried the 1 ML it was bad and am back down to .4 ml. I couldn't do the pill form at all but for some reason the injection effects aren't as bad. I do okay on Pred and am on 20mg from lowering the MTX. I do not gain weight or crave food but give me any anti-innflammatory and I am sick to my stomach and the gerd gets so bad I can't eat or drink anything. I do know from the RA boards that with the biologics Humira, Enbrel, Remicade, Orencia, that the clickpen hurts alot worse then using the self mix needles. My rheumy will be adding one of these this month but I haven't picked one yet.
It took me 5 weeks to be able to give myself my own MTX shots and now it's easy.
gos

Hi all just a side note. Do not take possible side effects for granted, my aunt was on Enbrel and developed the RARE side effect of Hodgkins Lymphoma (cancer) she fought for her life twice and is in remission now, BE CAREFUL. try to only take what you absolutely need, drugs are not a cure-all. Try homeopathic ways light excersize, massage and mild anti-inflammatories before you get mixed up with injections and cancer causing drugs. She said if she were to do it over again she would have delt with the arthritis pain before using Enbrel again. My Rheumy gave me a topical gel that is like a localized dose of ibuprofin, I like it very much! Anyhow just my 2 cents.......
~Tara

Hey, Tara, welcome... if I haven't met you already, there's that damn brain fog again...

I think this is a well taken point. I have a very dark view of any drug developed after about 1978, as a lot of you well know. My hunch is, all the low-hanging fruit has been picked in terms of groovy new drugs for immune disorders.

Just as an example, some of the bone-growth drugs my buddy got after radiation for cancer? The "rarest" side effects seemed to present IMMEDIATELY, and it was supposed to be a pretty safe bet. I really don't pretend to understand medical research, I am just very, very suspicious.

There is just a lot about this disorder that is not known. My understanding is, there is even some controversy about whether the Anti-RNP antibody causes this-- or whether it is an artifact of some other process, meaning different conditions could cause it. Most people recognize MCTD as a distinct clinical entity, but they just are not sure. (This does NOT mean it is psychosomatic, no one is saying that.)

Best,

--Cat