Anyone using Protopic or Elidel and triamcinolone Acetonide--Repigmentation creams

Hi--

I'm using protopic (which is the active ingredient in rapamune) and this other long name steroid cream to try to repigment my vitiligo.  I was so happy at the thought of getting some pigment back into my white areas which burn so easily and actually get cold and numb sometimes.  The other approach is total depigmentation, which would be fine if I lived in a cave instead of the south.  Has any tried this or had any luck?  Any bad side effects.  I think the ointment is causing some of my headaches.  I still can't go out in the sun and when I woke up this morning and someone had opened the curtains in my bedroom, I was very sick to my stomach.  The sun sensitivity and nausea started before using the ointments but the ointments seem to be making it worse.  Thanks for any help you can give.  I went to a vitiligo site and they don't understand why I can't go out in the sun or under lights.  They just say since I'm sick I should just give up on what I look like, in a nutshell, that's what I got.  I know they didn't mean it that way, but you know.

No--I've been waking up really sick to my stomach with even one window have covered and sick all day. The thought of going out and driving in this blinding sunlight just seems impossible. I know I need to schedule with him, my urinary symptoms might be getting bad again. The sad thing is that I know that part of my problem is polyendocrine dysfunction and it progresses to Addison's disease. I have the hyperpigmentation of Addisons disease and talked to a young woman with it and she said that she doesn't have extreme symptoms but has it and is being treated and her mother died from it and she said its important to be treated early. I bet if they looked close enough, except for the antibodies to my heart and probably gi, they would find that most of my AI disease involves my endocrine, which is why its so screwy. The problem is that they all compensate for each other, my TSH isn't high because my pituitary doesn't work worth a crap, not because my thyroid is working, because it isn't either. I'm sorry. I'm having problems with the vitiligo cream on top of it and think I'm probably going to have to end up not doing it because I'm getting too sick and they never fix anything, it's like pulling teeth. My AI disease isn't well managed and its not my rheumie's fault, it's the endos, because it's hard for him to put me on pred when I have reactions from it.

Thanks Hippimom--

I really goofed up putting it on, I was off my synthroid for a thyroid scan and I really had a rough time just all the sudden quitting it.  On top of that my rheumie gave me a double pred shot from h*** and I was really a mental mess.  I could have sworn he said four times a day and I remember asking him two or three times, because I get so thick, my memory so bad.  I even had to recheck by looking at the prescription on the way to the pharmacy and I could have sworn it said qid.  So the most I could handle doing was three times a day with this steroid and twice a day with the immunosuppressant.  Anyhow, luckily I went out on a vit site and they said that seemed like way too much and I got really bad headaches, so I stopped it and am feeling better and called the dermatologist today and they said steroid cream once a day and protopic (rapamune ointment) twice a day. I'm back on synthroid and that is helping the vit more than anything, always had. I think tomorrow or the next day, once I get it all out of my system, I will start again with the right dosage.  i had only used it for two or three days and have stopped for two days already.  I know I probably shouldn't be trying to tackle it and it takes a good hour to get the ointment on, but I'll give it a try since medicare is willing to pay for it.  There is an interesting study on vitiligo being caused by hairdye and also about it being a result of too much hydrogen peroxide in the skin.  I believe both of these are true in some cases.  Mine was triggered by hair dye, bleach, that dropped on my skin and depigmented it. Then without any more dye getting on me that one spot spread.  Soon I was having other autoimmune problems.  My Thyroid Peroxidase antibody is always really high (TPOS) and this maybe has something to do with the peroxide level in the blood.  There is a company in Germany that has put out a product on these lines called PCAT and if I cant take the other ointments, I will try this.  It has virtually no side effects, is a calcium and catalase cream and is used in conjunction with dead sea salt therapy which always seemed to improve my skin when I put them in my bath. 

I'm using triacinolone acetonide ointment for my hands/rashes and I'm not particularly fond of it. It's a thick ointment and when my rashes are bad it stings like crazy when I put it on. So I don't use it too often.