Discussions that mention pepcid

Rare Disorders board


Hi,

One thing I forgot to mention is the importance of you starting your own medical file. Whenever you have tests done get a copy of the all the results. Either from the doc or the lab. I keep copies of everything, I even pick up my CT scans and MRI films and keep them. It makes it much easier if you have to go to another doc so things don't go missing if docs are passing around info. Also it makes it easy if you have to go to the ER. If your doc doesn't know much about mastocytosis check who your providers are from your insurance list. Then call the hematologists on the list and ask them if they how to treat masto. My regular doc here in town is an Allergy/Immunology doc. Surprisingly he has 4 other masto patients but he says they are not as advanced as me. Although one of his masto's has a problem with bones breaking but her bone density is normal. That is another problem with masto. He had sent one of patient of his to MD Anderson in Houston but they found his mast cells were normal not malignant/Atypical like mine so he didn't get into the Gleevec Clinical trial like I did. However the Gleevec didn't work for me and I have refused to try Super Gleevec or Ontak chemo they offered since they wouln't give me any specifics on liver toxicity. I can't wait to see how your tryptase turns out. As I said before mine is only high right after an attack. Are you on and H2 blocker? Pepcid, Zantac anything like that? Since you are on a H1 blocker the h2 blocker works with it and really helps. Do you get brain fog? Its like you can't think or remember and get really confused? I get that all the time. I am on Lexapro (anti depressant) its suppose to help with brain fog but it doesn't really help but for that but I also get really cranky like the worst PMS and it helps for that. Masto's have a lot of neurological symptoms. Cranky, brain fog, fatigue, confusion etc. But if you only have the skin form of masto you may not get all these other symptoms. I use to go the Mastocytosis Society web site and they have a chat line thing but it seems most people there have no diagnosis and have tons of allergies and that is not what masto is. Some of the people on line there tried to tell me it sounded like mine was an idolent form of systemic masto even though my oncologist said my mast cells are malignant. Hate to say but I go with what my doc tells me. The people were trying to tell me its too rare for masto to turn malignant. So I stopped going to that site. It was crazy. Well I better go hope your doing ok.

Wendy
I think the kind of specialist you see for successful treatment can vary widely, at least from my personal experience. In my area (D.C. Metro), some of the most significant research into this disease is being done at the NIH. My diagnosis came completely by accident, I was not seeking treatment, nor did I know this disease was working its way into my system. I happened to see my dermatologist on a completely unrelated matter 8 years ago. She recognized the lesions on my legs, having had mastocytosis herself, and was treated at NIH for over a decade. She now takes referrals from that institute. Her own masto was knocked out after chemo treatments for breast cancer.
As my disease began to turn into something more serious several years later, I saw a GI specialist (who did everything he knew to do, and then suggested I called NIH), an allergist (who had to look it up), and one of the leading hematologists in this area. The last doctor had heard of masto of course, but had never treated a patient. He also called the NIH to find out what kind of tests to do for diagnosis. I ended up back at the dermatologist who prescribed high doses of Pepcid (160 mg every 6 hours) and Allegra. My severe GI problems are now under control, although I am beginning to experience some significant joint pain. The upshot is, if you can find a doctor who knows what the disease is, and is willing to work with you, that may be your best shot at getting some help. I have been embarrassed, angry and made to feel foolish by going through a litany of specialists.
My optometrist, of all people, (a celiac sufferer) suggested probiotics as a support to my medication for the GI issues. I have also seen great benefit from that, including thicker hair. Malabsorption had caused it to thin quite a bit. Don't rule out alternative medicine; i.e. accupuncture or nutrition specialists.
One comment on the meds. Claritin works well on the H1 receptors, but does not cover the H2 (gut) receptors. Allegra is more effective. Zantac is listed as a standard treatment, per the PDR, but large dosages like I started with can turn the skin a distinct yellow color, for some people. Prescription strength Pepcid does exactly the same thing without the skin tone change. I am also suffering significant joint pain. Does anyone know what is typically recommended for that? I'm currently taking Motrin, but I know nsaids are not good to take with masto.
I'm not exactly the scientific wiz, but, as I understand it the H1 blockers (like Allegra, Claritin, Benadryl) address the histamine receptors which cause wheezing, tearing of the eyes, itchy skin, etc. The H2 receptors line the digestive tract, and require the use of things like Pepcid or Zantac. There is an H3 receptor also, I think, but I don't know much about that nor do I think it plays into mastocytosis.