[MyFocus]

Hey there. I'm new here, posted an introduction in the introduction category.

I have lupus and myasthenia gravis and a few other buggaboos.

I take tons of medications that are on the rather serious side ...complications, side effects, requiring frequent doctor visits as well as lab tests (monthly) I think it's the meds that get to me the most ...

anyone else here on the autoimmune merry go round?

[Danialla]

Wow, both?

I don't have any auto immune, at least not to that degree. I had hashimotos thyroiditis, but my thyroid was removed a couple of years ago due to cancer.

I know that we have a few members with auto immune disorders, and I am sure they will drop you a line soon.

Take care of yourself and welcome!

[lenjan]

I have APS or here. I also (barely) survived extremely severe aplastic anemia (bone marrow failure), which may or may not have been autoimmune. (They never did determine for sure if it was due to one of my psych meds or was just really, really bad luck.)

My oldest sister has Crohn's disease and her son has alopecia areata, both autoimmune. All 3 of my sisters plus my mom have hypothyroid.

I do understand the constant running to drs. and the meds and feeling like a lab rat. I'm on blood thinners to deal with the APS and they are such a PITA to regulate that I feel like a pincushion most of the time!

I'm on the "nasty" med ride as well as monthly lab tests for quite a few years now but it's not for any auto-immune disorders.

But I can certainly relate! I am so SICK of Dr.'s and their creepy, toxic life-threatening meds.

http://mpdfoundation.org/about_mpd.htm

http://www.chemocare.com/bio/hydrea.asp

[(JD)]

I'm not on the med merry-go-round because I'm allergic to most of them, and I had cortisone so much when young, they are saving it for life-death issue. My immune system was never normal... being allergic to everything but clean air, pure water and cotton. (well, I wouldn't let them test me for cotton because I love it so and it feels so good.) They wondered how I lived without being in a bubble. I had state of the art allergy treatments in the 80s, which literally saved my life. I do see, as I age, some of the allergies creeping back in, and a few (mainly food items, and molds) are quite severe.



I had a good friend in the late 60s that had SLE.

[MyFocus]

Thank you all for your welcome!
Prednisone is tough drug. Unless I go into remission, I'll be on it at at least 5mg for the rest of my life.

I spent a good part of this year at 60 mg. I've been on as much 120 mg.(For 9 months, that was no fun)

I was on Cellcept (Immunosuppressive, that they use in kidney transplants) and it was a better drug, safer, more effective (Same risks, just less risky) than what I'd spent 10 years on ... which was Imuran.
Insurance has suddenly decided that ONLY kidney transplant patients ... period, end of discussion ... can have Cellcept.

So, As of yesterday, I went back on the riskier, less effective Imuran.
($105 for a months supply as opposed to $2000 for a months supply ...it all comes down to $$$$)

My prayer/hope is that the years on Cellcept will have brought enough 'healing' to me that the Imuran will keep me at least status quo. There is no scientific evidence to back that up ... I'm just desperately needing it to be that way.

We'll see over the next year to 18 months (yeah, these drugs take that long to be effective or show they've stopped working ..nice huh?)

I hope my liver tolerates it better this time ... last time I had a few close calls and I'm now on a couple of other possibly liver toxic drugs ...that I wasn't on before ..

here we go round the medical round ....

[Rhapsody]

Autoimmune Diseases - how I wish I would never hear those words again.

I have RA - Fibro - Sjogren's Syndrome and another one I can't think of right now.
Lupus for me is still questionable, as the blood work is negative, but the symptoms and strange rash I have say yes.

Life is no fun with all this and I am starting to grow tired of being tired and of feeling nauseated / weak every other day of the week.

BUT - Life goes on and so will I

[MyFocus]

Rhapsody .... isn't it a blast. I don't get why docs can't just pull their ... ok, I'll be nice.

If you've got the positive ANA needed to get the RA dx and the symptoms ...and you're being treated for the RA ... then the drugs treating the RA just may be giving you a false negative for the lupus ... (yes ... it is in the lupus books!!! ..happened to me with the MG ... while I was on Imuran, my labs came back normal for lupus, switched to Cellcept and lupus came flying out of the woodwork.)

I mean, just how complicated is it to figure out if you're taking the meds to treat the disease that is supposed to suppress the immune system that maybe ...just maybe they need to go by symptoms not labs?????

[NoBread]

I have Hashimoto's thyroiditis, an autoimmune disease. I also have celiac disease, which is thought by many to be the cause or catalyst for various other autoimmune dieseases. One of my younger brothers had Crohn's disease. I think it would be worthwhile for anyone with an autoimmune disease to research celiac and autoimmune. The research being done recently shows that foods people eat can sometimes "leak" into the blood stream and cause autoimmune disease. With celiac the treatment is to stop eating wheat, rye, and barley gluten. Celiac is a genetic disease and runs in families.

[kimmydawn]

Hi and welcome.

While I don't have any auto-immune diseases, we found out daughter had/has grave's disease in a time that quickly became critical...her first pregnancy...a huge no-no with uncontrolled grave's.

She was extremely ill and the pregnancy a huge risk. She and baby are fine, and she's now euthyroid (sp?). She's now and forevermore hypo, but doing OK at this point (weight being the biggest issue.

They were extremely concerned that she had a co-existing auto-immune disease (and still aren't completely convinced that she doesn't) due to her liver and organ involvement at times of hyperthyroidism. It became a life's race to get thyroid out due to liver.

They tested for both RA and Lupus just after the birth...both were negative. However, at this point she's had a couple of minor rashes that we can't account for, and I'm almost positive she had celiac disease which she hasn't been tested for. I feel she does due to her symptoms.

I just wish you the absolute best, and know that we're here to support you, vent with you, or even cry with you if needed.

Again, welcome.

KD

[(JD)]

(((hugs))) You certainly have your hands full just taking care of you!

I grew up allergic to everything (well, I wouldn't let them test me for cotton, water and air ) and had to be desensitized. As I age, some of the allergies are being provoked again. And my allergies to medications was never handled back then, there was no such help... I need to get back on the merry go round and I put it off. Too many times it nearly killed me.

Welcome to pc!

[NoBread]

Hi Kimmie,

Thanks for the welcome. I love your butterfly quote in your signature!

Sounds like your daughter could have celiac. There are blood tests they can do for the antibodies for gluten. They are not 100% accurate tests, they miss some cases. She would have to be eating wheat at the time she got the blood drawn for the test or the antibodies wouldn't show up. Of course she could do her own test by trying a gluten free diet for a while and see if her condition improves.

Some info on celiac is here:

http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/

Diseases Linked to Celiac Disease

People with celiac disease tend to have other autoimmune diseases. The connection between celiac disease and these diseases may be genetic. These diseases include

* thyroid disease
* systemic lupus erythematosus
* type 1 diabetes
* liver disease
* collagen vascular disease
* rheumatoid arthritis
* Sjögren’s syndrome

I thought this article was interesting also. It is about Crohn's disease, and talks about the presence of antibodies to bakers yeast in the blood of Crohn's patients. So maybe there is a similar mechanism in place in Crohn's where yeast can get through the intestinal barrier and cause problems, like in celiac where gluten (gliadin) gets through. I started a yeast free diet this week to see if it helps my condition.

http://www.pubmedcentral.nih.gov/art...i?artid=501007