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CELLCEPT QUESTION

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Hello Everyone,

It is me Nina. I have not been online for quite some time.

I have been taking cyclosporine to treat my PG for 10 years and now my kidneys and liver are acting up to the point where I was put on a lower dose of cyclosporine and prednisone was once again added. Currently I take 100 mg of Cyclosporine two times a day and 40 mg of prednisone once a day.

My Specialist (Infectious Disease) doctor is looking at trying something called CELLCEPT. So, my question, is anyone taking Cellcept to treat their PG and if yes, how much and is it working;. This new drug was recommended by another derm but the derm was not specific with dosing amounts or if it would even work. So my specialist is trying to find a derm who can help so I figured i would ask on this site and see what happens.

I would really appreciate any insight anyone may be able to offer.

Take Care Everyone.

Nina (PG Patient since 1996)

Re: Celiac and the Resemblance to Dermatits Herpetiformis

Hi Tina!

Thank you for your support. The Derms are truly driving me nuts, as

they do not agree with my diagnosis from the Gastro.

Since when do patients have to produce "evidence" of illness?

Aren't 120 lesions and bumps enough?

(So much for a picture speaks a thousand words.)

I will email you later - seeing Gastro today.

I'm beginning to think that some doctors are afraid of anything out

of the ordinary, and, EN is certainly that!

Have a nice day and thank you for your email.

Love,

:)

Tina Web- <twebwalkeryahoo (DOT) com> wrote:

Hi,

I had some blood test which cost over $1,000 if I recall. It ruled out Celiac Disease. But I do have gluten sensitivity, no matter what the blood test said. Whether or not this is a trigger for my PG, I don't know. But I do know that the ignorance of this (and dairy sensitivity) caused great strain on my immune system for decades.

It is not just wheat, but all sorts of grains which have gluten. And my ND says that I should avoid corn also. This is apparently a very common sensitivity for people who have problems with gluten. Beware, because nearly every "gluten free" product in the stores now contain corn.

Does anyone notice that intake of higher levels of sugar causes problems? I don't just mean refined sugar, but dried fruit, juices and even fresh fruit. This is in NO WAY to be read construing that I advocate sugar substitutes!

Please send the energy of patience and pain tolerance my way. My ankle PG won't stop spreading because I can't keep it imobilized and the dressing pulls the dried secretions whenever I walk. I had a biopsy of lymph nodes in my arm pit a couple of days before Christmas, so I can't use that arm strongly enough for getting around in a wheelchair. (I was very relieved to finally resume wearing a bra last week.) Today he pain of my ankle was overtaking the pain of my biopsy site so I used the wheelchair for the first time in a long time. Apparently that was not wise (especially since a "bone" sewn into the side of my bra was poking in just the wrong place with each push). Tonight I can feel that I really gave myself a setback in my biopsy healing. I am feeling frustrated and I can't figure out how to get around with this catch 22 (whether to favor the biopsy site or the PG).

What a relief to have understanding folks to relate to.

I am relatively new to this group. It seems that there are at least one or two new members every day. Is this typical, or just a recent fluke? I have to think of this many people suffering. The only really GOOD news I have read here about EN/PG is how rare it is. I wouldn't with this on anybody so I hope it is highly unusual to be getting so many new people so close together.

Tinaimapisawork <imapisawork@ yahoo.com> wrote:

Hello, My name is . Thank you for allowing me to join thisgroup. I have no family, so a support system is truly welcomed.I have had Inflammatory Bowel Disease since I was two.5 operations. Remission from UC for 7 years.No lesions or skin problems until a year ago.Had to take Amoxicillin for throat...made EN worse.Read this in some online data, penicillin can aggrevate EN.Has anyone else experienced this reaction?After some research, I noticed the "pendulum" effect ofthe EN appearing and remissing for short periods.Celiac Sprue can cause a condition resembling EN:Dermatitis Herpetiformis. (Commonly known as "Celiac Diseaseof the Skin.)Anyone who is having difficulty with remission may want toavoid wheat for a few days and see if there is any improvement.I did for 2 days and I have a few less lesions and bumps.However, I still have a long way to go...I hope this helps

someone.:)

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