S/O Tacrolimus for unexplained rash

amother

Taupe ↓

Tue, Nov 05 2024, 4:14 pm

amother Zinnia wrote:

My child was on tacrolimus to prevent rejection after a transplant. It's considered a chemotherapy drug/very potent immunosuppressant.

Yes, our experience is with its sister drug as chemo.
It’s not as potent in topical use, but I’m still very shocked that it’s prescribed just like that…
Personally, I would exhaust all options and try miracle clay or something else from inside out before this. But without knowing all the details, who am I to judge?

(Posting anonymously, even though I was the one suggesting a s/o)

But I hope this thread will attract some others who do have personal experience with the ointment version.

amother

DarkYellow

Tue, Nov 05 2024, 4:36 pm

My daughter age 7 was prescribed it for her excema. The dermatologist said to use the strong cortisone cream, mometasone, when it's severe, and the tacrolimus for maintenance. The pharmacist (when putting in an authorization request to insurance) told me "that's a great medicine. Much better than the cortisones." I thought he meant that it's v effective without the negative side effects of cortisone. I've been using it on and off for months. It seems helpful. None of the creams have been magic.

I did NOT know it's a chemo drug!!!!!! Quite shocked! I thought it's a mild nothing. Maybe this is a v v low dosage.

Btw changing to dye-free detergent (for the whole house) and soaps (just for her) seems to have helped her excema tremendously.

Hatzlacha.

amother

Tealblue

Tue, Nov 05 2024, 5:38 pm

I had the same experience with myself. I was given mometasone for eczema flare up and tacrolinus for maintenance.I didn't get it because it's expensive 75/ tube. I use the steroid cream when the flare up is beyond awful otherwise just use different moisturizer
Eta- the dermatologist said it is an nsaid cream- better for long term than steroids.

amother

Moccasin

Tue, Nov 05 2024, 6:47 pm

I didn't see the other thread.
My DC has extremely severe eczema (in addition to all related conditions like allergies, asthma, etc.) We tried everything for years and nothing made a difference. The only thing that finally worked a bit was the tacrolimus. It was $$$$$ but worth it. Now DC is on dupixent so we only use tacrolimus once in a while on really bad flare-ups.

amother

Amber

Tue, Nov 05 2024, 7:15 pm

My daughter was prescribed tacrolimus, and I also balked.
Guess what!
I also took her to an allergist who tested her for chemical allergies (it takes a few days).
Then they gave me a comprehensive list of products she can use - including cleaning products, make up, prescription meds, deodorant etc. ( it all comes off a database they subscribe to)
And, my doc also suggested zyrtec daily until she calms down.
It’s definitely been helpful to her, although she may flare sometimes…. That’s when I use cream.

amother

↑ OP ↓

Tue, Nov 05 2024, 7:43 pm

amother Taupe wrote:

Thank you for sharing your experiance even though its wasnt topical. I know iv its used as a chemo drug and I was given it as an alternative to using steriods. I developed sudden allergic reactions very badly and they also cleared up very suddenly except for now around my mouth. I would have rash on my face neck and arms and eyes become so puffy they were swolen shut. Ive never been allergic to anything and then I was suddenly running to urgent care on pessach and to many specialists for months after. I am hessitant to try any new products because this has been helping me stay off needing oral steriods, steriod creams and steriod shots. Any new product may bring the reactions back since we dont know what caused it. Allergist ruled everything out.

amother

↑ Taupe

Tue, Nov 05 2024, 9:02 pm

amother OP wrote:

It’s really amazing though how a drug that is so toxic in one form, can have no side effects in another form!
(we had to wear gloves when drawing up the med and diluting it before administering to reduce mouth sores. No dumping our extra meds down the drain etc*)

But in my little mind, it actually makes sense it works for allergies.

*eta, I’m not even discussing the actual meds side effects & monitoring needed.

devo1982

Tue, Nov 05 2024, 9:56 pm

It is the only thing that keeps my facial eczema under control and lets other therapies, like phototherapy, do their job. I've tried Opzelura and Zorevye and neither did a darn thing for me. One week back on Protopic/Tacrolimus and my face is looking better than it has in months - ear patches have stopped oozing, eyelids are no longer swollen, and patches are fading. B'H for tacrolimus in topical form.

amother

↑ OP ↓

Wed, Nov 06 2024, 12:42 pm

amother Taupe wrote:

Yeah its been the perfect help for me which is why I recommended it in the fat baby thread where the baby was on and off steriods. I have no side affects and only good things to say. Was wondering if anyone had different experiances.

amother

↑ OP ↓

Wed, Nov 06 2024, 12:43 pm

devo1982 wrote:

BH glad you are happy with it too.