Can we post pics of the face rash?

laurid8967 · Posted: Thu Jun 19, 2008 7:48 am Post subject:

Oh my gosh, Kathy,
Thats horrible - but THank God, the meds work most of the time. I know you have a very long history with your disease, and I give you alot of credit for dealing with it on a daily basis with grace and dignity.
God Bless,
Lauri
_________________
God grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference...

KathyW1958 · Fierce Wolf Joined: 12 Jun 2008 Posts: 594

Hi Lauri

I started getting this nasty rash on my hands and feet at the age of 14. I had a lot of the other symptoms for Lupus, but had no idea of what Lupus was for many years. I came from a very poor family and unfortunately I did not get to see a doctor very often if at all. I was forced out of HS in my senior year by the Principal. He told me that the rash on my hands posed a health hazard to the staff, faculty, and the other students in the school. I had gone to the doctor, but he did nothing about it except perscribe hydrocortizone which did not even touch the rash. You can not imagine how I felt when I tried to explain to this pricipal that there is no cure and that I have tried to get the rash to go away. He acted mean and cruel to me and told me that I could no longer attend the HS and put me out. I had no other choice but to take the GED. The rejection I felt was terrible. I went into one of the worst depressions of my life and very nearly committed suicide and almost succeeded at that endeavor. I ended up having to get serious psychiatric help to deal with my anger issues and rejection issues. I often thought about suing the board of education in the state of NY for failing to allow me to have an equal, unbiased education, like that stupid, ignorant principal had. I definietly should have been allowed to complete school and graduate. Well that happened to me and there is nothing I can do about that, but believe me if I hear of a student being put out of school like I was, I will do anything in my power to help that student get right back into school. Oh well.

Kathy
_________________
Lupus for many years. Like most of my life. Sjogrens that started at 35 and Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

Medications:
Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

jaideni · Big Hamster Joined: 16 May 2008 Posts: 95

Sorry you had to go through that kathy that sounds awful to be put out of school when they should have found a way to help you. I left hs in my last year because I felt like maybe something in the building was causing me to be sick. and although i got my ged I still felt depressed about leaving so I cant imagine how it felt to be forced out. Glad that your new meds help because that does look painful

KathyW1958 · Fierce Wolf Joined: 12 Jun 2008 Posts: 594

Hi Jaiden

The Imuran helps a lot. I don't have as near of a bad flareup of the Pompholyx blisters as I did before I was getting any type of treatment for this problem or the Lupus. My hands and feet were in very bad shape when I first got diagnosed with SLE. My Rheumatologist told me that this condition was not related to the Lupus directly, but could be indirectly. At first he put me on Dapsone along with all of the Lupus medication and it cleared it up like a charm. When he decided to taper the dosage my body decided to totally reject the Dapsone. That was very depressing big time. He told me that he would either have to go to Methaltrexate or Imuran. I asked him to try the Imuran first and see how that worked and he agreed. It works great. I still get very small out breaks of the blisters, but that is ok. I can deal with that. You know it was not right to be forced out of HS, but I did get my GED and I scored the highest of anyone in the previous 5 years in my hometown in NY and believe it or not I got a letter from Albany State University that told me that I was qualified to take any course of study they offered and that I would not even have to take the entrance exam. I had the pleasure of taking that letter right down to that ignorant Principal and showing it to him. He did not have much to say. I don't let it get to me anymore as I have two associates degrees and I have gotten on with my life. I raised two wonderful children and now I have a beautiful little grandson named Tyler.

I hope that your medications are helping you out as well. When were you diagnosed with Lupus? I was diagnosed in 1996 and they believe that I have had it since I was 5 years old. God Bless.

Kathy
_________________
Lupus for many years. Like most of my life. Sjogrens that started at 35 and Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

Medications:
Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

karengervais · Posted: Sat Jul 05, 2008 5:02 pm Post subject:

Hi Kathy:
I have gotten blisters like you have on your hands several times over the past few years.
Just this morning I got up and my hands were itchy like crazy and I looked and I have all these small blister like bumps all in my thumb area. If you follow up from my thumb, at the top of it by my hand is where I get it all the time. I never knew what that was and would have never even thought to mention to my doctor. So is this something related to lupus?
I am still awaiting diagnosis, no positive ana, but my doctor has just started me on plaquenil a few weeks ago.
Is there anything else you can tell me about this, I always thought it was me and my weird rashes and I never want to tell my doctor because I do feel I sound like a hypochondriac.
Thanks for sharing.
Karen

sits_inthe_corner · Posted: Sat Jul 05, 2008 5:23 pm Post subject:

Kathy and karen!

You two are the ONLY!!!!!!! people I have EVER met who have the same problem as me with the blisters on the hands!!!!! OMG!

I have felt like an utter freak for years cause NO one else had ever had that happen to them.

For me...I seem to break out if the acid content in my system is too high.

I have broken out like this since a was a wee small child.

Oranges lemons limes grapefruit with bust me out for sure.

But even pealing and chopping a bunch of carrots or tomatoes will do it to me.

My hands get hot and itchy and all these groups of little liquid filled blister cover my palms and in between my fingers. After a couple of days they dry out and my hands crack and bleed.

I was tested for food alergies, because my mom always figured I was allergic to citrus fruite...the test came back negative. That I was not allergic to it.

No I think it's over all acid levels. Since I've started controlling more of what I eat in a balanced way. I've had less break outs. They still happen sometimes...but not as often and not as sever.

Thank you both so much for talking about this...it's nice to know I'm not alone.
_________________
Oh look ... a cookie

Jax812 · Posted: Tue Jul 22, 2008 7:56 pm Post subject:

Kathy, Karen, and Sits in the Corner...

ME TOO!!

I had a horrible outbreak of this same rash all over my hands, feet, elbows, and knees last March. I saw a dermatologist who said it was dyshidrodic excema (same as Pompholyx). It cleared up on its own with a little topical cream. I've had a few patches since but nothing as bad.

I mentioned this to my cardio/rheumie at my last visit there (about 6 mos ago) and he didn't think much of it.

I had NO IDEA that this could be related to Lupus. I think I'll bring it up with my doc again. Right now, he thinks i have Undifferentiated Connective Tissue Disease because I don't have a positive ANA.

KathyW1958 · Fierce Wolf Joined: 12 Jun 2008 Posts: 594

Hi all,
I am posting again to let you all know that I do believe that the Pomphlyx is somehow related to an auto-immune illness. I still think it is somehow related to Lupus, but my doctor is now telling me that he thinks that since I have now been diagnosed with Celiacs Spru and Pernicious Anemia (Megaloblastic) Anemia that it may be related to that too. Shoot they do not know! I know that the Imuran is helping me a lot with this as now I have few flareups of it and yes acidy foods do tend to set if off. I do not cut up tomatoes, oranges or anything like that due to this. Have you guys asked your doctor about putting you on Imuran for it? It sure helps me a lot.

Hugs,
Kathy
_________________
Lupus for many years. Like most of my life. Sjogrens that started at 35 and Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

Medications:
Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

Jax812 · Posted: Wed Jul 23, 2008 4:35 am Post subject:

Thanks Kathy, that's interesting. They never know! I don't think I'll go on medication for it because at this point its not breaking out. But thanks!