immune suppressant drugs

[mopinko]

well, playing the old game of bleed the patient dry, see if we can figure anything out. it is looking like it might finally be a solid answer, after 4 rheumies and a constant shuffle of "is it lupus, is it not." i think the large case of reynaud's, on top of a shoulder that is hurting and burning in all the connective tissues will finally settle it, maybe.
anyway, i have already had several courses of plaquinel, and a few of prednisone, to no effect. i refuse to take either again. (every rheumie has to see for themselves that they don't work.) plus just about every anti-inflammatory known to man. i presume the next step up is immune suppressants.
which brings me to the question- how many parts of the immune system do we know how to supress? do we supress different parts for different diseases? my kid has been on them for chron's. i know that particular drug suppresses tnf, which leaves you open to cancer. since i have already had one pre-C polyp removed, i'm guessing that either this approach will be ruled out, or i just get to have more frequent colonoscopies. yummmm. i know this is also the factor that causes RA. are there other drugs out there for other factors? other diseases that are caused by this same factor?

[Lurking Dem]

1. Define "courses" of plaquenil?

The drug takes nearly 6 months to even START working so I'm confused by that.

If you haven't been to http://www.butyoudontlooksick.com/ , hie thee there. They have a great message board and her "Spoon Theory" is a must read.

[mopinko]

2. courses being 6 months plus.

yeah, i know that. been to that website, also.

[Lurking Dem]

3. Okay.

I really don't know much about the immunosuppressants except that it seems they are using them for more and more auto-immune inflammatory illnesses and the new ones seem to be much more tolerated by patients.

I couldn't do steroids because of my diabetes and I'm allergic to NSAIDs so I have just stuck with the plaquenil and organizing my life between and around flares.

I have found a product called CLA Plus a little helpful. (conjugated linoleic acid)

I get no real respite between flares because of my diabetes complications so I try to remain grateful that my lupus isn't nearly as bad as it could be and I'm still on top of the grass.

[mopinko]

4. still on top of the grass

yeah. every day i have to think up a reason to stay that way, it seems.
thanks for your input.

[Warpy]

5. I'm sure your rheumatologist knows your history

of having a polyp removed and will prescribe with appropriate caution.

Immunosuppressants can increase the risk of neoplasm down the road. They can also buy you some good time now. It's a tough choice to make, but your doc is your best guide in making it.

Immunosuppressants are still a scattershot approach. The same ones work for a lot of different autoimmune diseases.

The good news is that there is probably something out there that will modify your disease without putting you at undue risk of dying quickly from the big C.

[mopinko]

6. having left my last internist on not so happy terms,

he has incomplete past history. but i will bring him up to speed on that. right now we are sort of at an impasse about where things are. i am having an enormous pain outbreak right now, which has gone on for over 2 months. he finally ordered some bloodwork, and as usual, ssa is normal but ssb is elevated. previous high was 220 something- this time it is 340. connective tissue one is also somewhat elevated. he says- can't be lupus. wrong ss, does not respond to plaquinel, or prednisone. cannot be sjogrehn's because it does not respond to prednisone. so, what is it? i dunno, have some vicodin.
got a couple more tests to do, but i am about at the point of demanding a trial of suppressants, just to see what happens. i really need to have a life for a while before i die. i can make the world's greatest art, but if i don't have the energy to go out and push it, i am talking to myself. and at 53, it will be tough enough. i can't take it.