Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl Welcome! >> Introduce Yourself/Share Your Story >> Introducing myself & looking for New Treatments ~ http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1299336654 Message started by Matt68 on 03/05/11 at 02:50:54

Title: Introducing myself & looking for New Treatments ~
Post by Matt68 on 03/05/11 at 02:50:54

Good morning,
I'm glad to have found this site. I have cutaneous mastacytosis. I was diagnosed about three years ago, but noticed the spots begining to develop about five years ago. Since then the spots have multiplied significantly. Testing for systemic has been negative so far. I have been treated with narrow band, which seems to help reduce the spots, but within six months of stopping the spots return. I take Zyrtec daily to control the hives, and that seems to be quite helpful. Recently my dermatoligist has been experimenting with cryosurgery to reduce some of my spots. He uses a q-tip and presses liquid nytrogen on them one spot at a time. (Stings a bit, but not too painful). Within two weeks they are healed up and the spots are completely gone. It's a very effective treatment, but quite daunting since I have SO many spots! It's a treatment probably best used on smaller areas that are of cosmetic concern, like the hands or arms. Overall I am not in any discomfort or pain, I am just concerned about the spots multiplying. I would be very interested to hear if anyone has tried any other successful treatments for reducing the spots. I do not want to try PUVA, because of the risks involved, but would be open to other ideas. Has anyone had good success with a topical steroid? I tried one early on, and it did nothing.
Thx in advance for taking the time to read this and respond~

Title: Re: Introducing myself & looking for New Treatments ~
Post by missybean on 03/05/11 at 03:50:57

Hi Matt, I have TMEP and have tried topical steriods, and they didn't do anything. I tried clobatosol, which is pretty strong....while it works on hives pretty good. It doesn't get ride of the masto spots, it will make the skin around my spots very light, I believe it's because it constricts all the blood vessells, but 24 hours later it looks the same. I have never heard of the cryosurgery. Very interesting. I'm considering laser but not untill my symptoms are better controlled, but from what I here most of the time they just return in 18 months.
Melissa

Title: Re: Introducing myself & looking for New Treatments ~
Post by Matt68 on 03/05/11 at 04:00:56

Hi Missy,
Thx for replying. What kind of laser surgery are you considering? I have read about YAG lasers being used to some success, but that is a very limited/isolated treatment - not really helpful for "all over" treatment. My dermatologist thinks "Non-ablative" laser treatment would work because it goes into the lower layers of the skin where the mast cells collect, without disturbing the upper layer. But again, used in small areas - not "all over". Are you aware of any medication that successfully slows down the production of mast cells in the body? Even that would be a blessing at this point! Thx~

Title: Re: Introducing myself & looking for New Treatments ~
Post by Riverwn on 03/05/11 at 04:37:16

Hi Matt and welcome!!!
Im glad you seem to have simple symptoms right now.. and there is no reason fo you to get more if youre careful and live smart.

Even though you symptoms are light, you need to be aware of what will "stimulate" those bad little mast cells to action and keep them quiet as much as possible.

Mast cells are part of the natural healing process... when you have something that needs healing, they will rush to that site,, and never leave. They can "party" and act up after that, so please do think twice before doing things that makes your skin react. I have SM and UP, I dont care about the spots... I want the mast cells to stay asleep and not get active :)

You need to read about the low histamine diet and take it seriously, until you find out exactly which things trigger you. You also need to read about REMA protocals and know you should never have any medical procedure done without pre-mdicating and taking protective steps before it.

I want to see you live a longggggg , healthy life with YOU in control of it, not mast cells...that takes time and educating yourself about this--and there is so very much to learn!!
Its GREAT to have you here...ask anything, the people here are the VERY BEST!
Hugs,
Ramona