PROTOPIC? ()

[Guest guest]

HI . (thanks Ar for catching my eye on that one) ...

Yes I'm well aware of the Protopic ointment hon (another similiar one is Elidel) ... and I followed that drug even thru it's trials long before it was approved. With the hopes that a person could use that rather than a steroid since it won't thin the tissue as a steroid can if it's overused or for too long a time frame.

In fact this group and the LS group were the first to use it collectively *smile* they were the guinea pigs (I was well by then so never tried it)... The Elidel may be a little milder and is used on children so you might ask about that too. (They are 'very' similiar meds)

It can and has worked miracles for 'some' people if it's the V. tissue that's involved and the pain isn't from an infection or a radiating pain like pelvic floor dysfunction or say a gluten intolerance, etc., and originally was/is approved for psoriasis (since they too have to use steroids) but many dermatologists & gynes are using it to treat vulvar pain and lichen sclerosis esp. in chronic long time lesions or sores that just won't seem to heal and there are legitimate articles out there for that use even though it is 'off label' use... (sounds like you have a knowledgeable Dr hon)

BUT.... I will tell you that some had some pretty severe irritation with it (2 that I'm aware of that went to the emergency room with the inflammation so bad).... but others had no problem at all and loved it when nothing else worked for them.

Those who used it swore by it and it worked to heal the skin and with a minimal maintenance afterwards and only 'as needed'. BUT.... I most definitely would suggest you try just a tiny Q-tip spot first to see how YOU react hon. We're all different and of course there's no way of knowing.

(If it did burn? You don't use water to wash it off, it'll make it worse.. you'd use something like an oil to dilute it and then wipe but water was a no no for some reason)

Also the one thing "I" would personally suggest is to use the Estrace estrogen cream (E) topically (peasize as well) as that can nourish and rebuild the tissue and that V. tissue thrives on Estrogen (regardless of your age).

It's not a fast fix by any means nor is it for pain relief (sometimes it too can irritate in some people (the base) but I've never seen anything in years of research that is any better for rebuilding that V tissue to give it back it's color, tone, elasticity, etc.. One other is testosterone (T) but not as well known except for LS but is in some articles as well simply for the health of the V. tissue and not only for LS... I myself believe in both and use both the E & T creams to keep 'me' well and it's worked for nearly 8 years after 10 yrs of a nightmare with a minimal maintenance.

The Protopic is an immunomodulator (modulates and lowers the immune system) to give your body a chance to heal, if you have other known autoimmune diseases it may esp. be of benefit. The other (Estrace) helps to nourish and feed the tissue back to health. So they work in different ways.

Hope that helps a little bit hon.. and glad that things seem to be turning around for you if you're 95% better that's fantastic! *smile*...I can see why you'd be frightened to do anything that might reverse that, but hon IF that one spot does become chronic no matter what you do? Please don't fool around with that and get a biopsy if you need to.

I certainly don't want that to turn into anything pre-cancerous and I've seen that happen. Don't mean to scare you hon not at all.. and that goes for anyone here, but just because I care and would certainly hate to see that happen FOR SURE!!! but anytime a particular spot or lesion remains and is long time chronic and just simply will not heal is not a good sign. *sigh*

Hugs hon and good luck to you....

sounds like you really are on your way to wellness!

Dee~