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Mastocytosis

Fabulous005
  • By Fabulous005
  • Posted June 14, 2009 at 1:54 pm · 27 replies
  • Shared with the public
0 Recommendations

I have a question I'm going through some testing to see if I do indeed have any type of mastocytosis, but I started experiencing symptoms and those tan/brown spots a few years ago once I moved to this townhouse. After awhile I started noticing that there was mold all over the windows, bathroom cieling, basement and water was yellow/orange in color and smelled like mold. Soon after I had my first syncope episode and they didn't know what it was from or why it happened, then I got all of these spots all over my legs starting with a couple to within a period of two weeks hundreds and now I'm allergic to almost everything in the book when I never had any allergies before. I've been tested for the heart to make sure that wasn't the reason for the syncope episodes and everything was fine. I've had two episodes already. Does anyone know if those factors in the townhouse would have caused any of this? Please help if you can.
Thanks..

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Cancer Motrin Zantac Vertigo Syncope Anxiety Benadryl Mastocytosis Mucinex Xanax Allergies Blisters Suicide Singulair Pain Memory Depression

27 replies

Anniewithspots

Hey Fabulous005,
I hear what you are saying! I am a Masto patient. Your masto might be coming to the forefront thru the "trigger" of the mold in your home. My trigger was a cortisone shot in my left hip. For years I had so many 'allergies' only to find it's not an allergy at all, but a trigger for all the histamine cells which build up in the system to take it upon themselves to fight back upon the 'trigger' . Imagine if you will LOL... I'm deathly "allergic" to Pop Tarts! Please think back on any wierd things you have reacted to in the past. Do you have chronic loose, slimey sticky bowel movements? Wheezing while lying down, loss of balance/cognition? Kind of like having sea legs? Lack of desire/will to go out into public? Please get back with me as I joined this site to find someone who wants to investigate and share info about this rarity. Sincerely, Annie withSpots.

jr7449

I have just returned from M.D. Anderson to comfirm my systemic mastocytosis and to be included in their clinical trial. I was given a prescription for Cromolyn Sodium 200 mg. ampule to take 1/2 hr. before meals and at bedtime. Unfortunately, I don't seem to be able to fill it in my area. So am waiting for the hospital to mail it to me. (I know I should have just done it then)
Dr. Verstovsek then wants me to come every 2 weeks for three days for a one hour IV a day dose of Obatoclax. Does anyone know anything about either?

masto4acure

Cromolyn Sodium (aka Gastrocrom), works fabulously for a lot of people to control gastrointestinal issues, as well as stabilize mast cells throughout the rest of the body, which can help w/ other symptoms as well. It is especially known for helping w/ headaches, fatigue, brain fog, and itching, among other things. It does not solve everything, but it has helped me tremendously...I couldn't live w/o it! If you live in the US, I would think you should be able to get it locally. I use a Rite Aid pharmacy, and I am their only patient who uses it, but they just put in an order when I'm due for refill and it is usually delivered from their warehouse w/in one day.

I am glad you shared your experience at MD Anderson and the treatment Dr. Verstovsek has planned for you. I was completely unfamiliar w/ that drug, but I looked it up and found that it promotes cell death (apoptosis) and interferes w/ metabolism of cells, helping to reduce the number of cells in the body that are causing problems (whether it be mast cells or cancer cells). It appears it has already shown promise in early phase trials and is being trialed for various conditions. I am unaware of the side effect profile.

Anyway, I am very interested to hear about your experience at MD Anderson and the use of this new drug. I've been following Dr. Verstovsek's work for a while and he is doing some amazing research. I have seriously considered going to see him, and I may eventually decide to do so. I came across the Clinical Trial page for this drug, which I am including below for anyone who might be interested in participating or learning more.

Best of luck to you...keep us posted!!!

http://74.125.95.132/search?q=cache:95b5UmB44-EJ:clinicaltrials.gov/ct2/sho w/NCT00918931+obatoclax+mastocytosis&cd=1&hl=en&ct=clnk&gl=us

jr7449

Masto4acure,
Rite Aid happens to be my local pharmacy and swears
they cannot get it. (along with all pharmacies in my area) At any rate, I am have M.D. Anderson pharmacy mailing it to me.
Where do you live? Because this new treatment must be given every 2 weeks - 3 days in a row.

Fabulous005

Hi Anniewith spots,

Thanks, for replying I don't seem to have any stool problems as of yet, but I do have plenty of light brown spots all over and have syncope episodes more often now. I know I have mastocytosis for sure now, but in two days I find out I guess which stage of the disease I actually have. I hear there's a possibilty that I'll be put on steroids and other pills for sure. I'm not a pill taker or a medicine taker at all so that freaks me out. Have you been on steroids at all for your situation? Did you have to change your diet at all? Is there any life changes that you've noticed since all of the changes in your body and medications at all. I guess I really dont know what to expect or anything about this.

masto4acure

I live in Michigan...not exactly close to Texas, but I have a friend who lives down there, so I'm sure I could stay w/ her if need be for treatments. How long will you be in this trial? Where do you live?

I will contact my Rite Aid pharmacy and try to find out how they first went about getting Gastrocrom stocked in their warehouse. I don't remember ever having a problem getting my hands on it. Like I said, I just have to give at least one business day notice for them to get it delivered from the warehouse.

Have you tried a specialty pharmacy in your area? Sometimes they are more willing to hunt down what you need. I have one of my medications specially made at a specialty pharmacy, and they take great care of me.

Wish you the best!

jr7449

I paged Dr. Xavier Badoux again yesterday (Dr. V's sidekick) and he promised to give new script to M.D.'s pharmacy, then they in turn will send to me.
For some odd reason, none of the pharmacies in my area are able or willing to order for me.
I live in Paradise, Tx. - about a 6-7 hr. drive from Galveston.
I am originally from the Chicago area and do believe us midwesterners go that extra mile for each other.
Where abouts in Michigan are you?
It appears that the trial is for 3 months. Throughout , they will randomly do bone marrow biopsies to check for progress. What Fun!
How long have you been on Cromolyn sodium?
Any difference in appearance of skin? Or attacks?
Jan

CSIII

I hve been using Gastrochrom (chromilyn sodium) for a little longer than one half year now. This has made a world of difference for me. I've not had a major attack that sends me to the emergency room since last October (knock wood) although I have had the sensations of one coming on and have quickly taken a couple of Benydril and have been able to hold it at bay. My pharmacy has to order it out each time I renew my perscription. I usually give them a two day lead time. I hope you have insurance that covers perscriptions as this stuff is very expensive. Good luck. Your pharmacist should be able to order Gastrochrom and get it in a couple of days. I live in Southern California and have as yet not had trouble getting my perscription filled.

jr7449

CS111
I received my cromolyn sodium yesterday from M.D. Anderson pharmacy . I took one 200mg. dose immediately-had an attack lasting about 20 min. - then I ate a small sandwich-and had a full blown attack for about 1hour and 1/2. Decided to put off taking as directed on Sunday, since today was my birthday and didn't want the hassle.
Let's hope I can tolerate it better this time.
Will keep you posted.

masto4acure

Sorry to hear you had such a bad spell yesterday. I will keep my fingers crossed that it was just a coincidence it happened the same day as starting the Gastrocrom. Hope you have a wonderful birthday!

jr7449

Thanks and I had a wonderful birthday. Started taking again yesterday, and am doing fine now.
Dr. Verstovsek called earlier wondering when I would like to start the trial with Obatoclax. It looks like in two weeks I will go ahead and begin.
Anxious, nervous, concerned, and excited!
Will let you all know how it goes.
Jan

masto4acure

Hi Jan. So glad to hear you had a nice birthday and that you're doing okay w/ the Gastrocrom:) I just wanted to pass along that I contacted my Rite Aid Pharmacy up here in MI and explained your situation about not being able to get Gastrocrom from your local Rite Aid. They explained to me that they have 2 warehouses, a primary and secondary. When they can't get a med from the primary, they try to order it from the secondary. If the secondary doesn't carry it either, you should be able to ask your Rite Aid's "Pharmacy District Manager (PDM)" to get it ordered to the warehouse for you. They need the NDC# on the box to order it. For Gastrocrom, the NDC# is 18860-0678-70. If you have any problems or further questions, my pharmacist said you can call them direct at 1-700-222-7733, ask for Cathy or Norm, and they will try to assist you in whatever way they can. Not sure if you needed the info, but wanted to pass it along in case it might be of help to you:) Take care! Julia

masto4acure

P.S...good luck w/ the trial!!!

CSIII

Sorry to hear about your attacks after taking the Gastrochrom. When I started taking it I had a few spells, but nothing that I couldn't handle. Hopefully you will have better results as time goes on. Good luck at MD Anderson. My sister lives in Houston and says there is none better. I'm in the process of being approved for a clinical trial at UCLA. I wonder if it is for the same thing? Last step is the bone marrow. Had one locally a few months ago, but the results were incomplete. It's evidently tough to find a lab to do the correct analysis. I'm having to jump through hoops for my insurance. I don't quite understand why, but am doing as they say for fear of being dropped or limited in my coverage. By the way, Happy Birthday. Mine is tomorrow.

Gman206

What's this with all us July people with SM??? My Dr is looking for studies I can become a part of or do himself. I know he's been in contact with MD Anderson. They seem to be the most aggressive in their research for SM with Michigan 2nd. Anyone have any insight to any new trials... I'd be very appreciative, since I have been battling for a very long time with this fun disease. Happy Birthday everyone...

cynclaire

I was advised by Dr. Castells from Brighams Womens Hospital in Boston that Gastrocrom has been helpful for those with brain fog. I was having a bad period of time with short term memory loss. I was driving my family nuts. Dr. Castells told me to quadruple the amount I was taking. I gagged it down but the results were immediate according to family and friends. I took 4 ampules 4 times a day. It worked for me. My pharmacy usually takes two days to transfer in and I am in Texas too but I use a private pharmacy. Best of luck in the new trial.

Anniewithspots

Hello and Happy Brthday to all...mine is July 5th! In a touch of humor, maybe we have This disease because we are all Cancerians! jr7449: please tell me of your attacks, I'm curious because I have had what I call "abdominal pain attacks" for years. Plus forgetting stuff, and panic attacks from being afraid of the vertigo type feeling I was experiencing in public. Is that what you are talking about?...I'm on Gastrocrom and am so very happy with it. My UPMC Pittsburgh, PA Doc told me absolutly no steroids for me any more. The first dr. I had put me thru blisters, screaming hives, itchy red bumps, and boils by misdiagnosing me (the guy didn't have a clue even tho my brown spots were staring him right in the face...and he was a dermatologist). Predisone, benedryl, all that other stuff made me worse. I now take Zyrtec(Cetirzine, less$) Ranitidine(less$) and Doxepin HCL, plus the Gastrocrom...am feeling 90% better than I have in MONTHS!!! Back from vacation and hoping to chat with you all more. Annie

Anniewithspots

Hi Fabulous 005, My Doc has told me to go on with my life as it is. As for the diet, always eat on the side of healthy and am so used to just eating food I know I won't be 'allergic' to. I haven't strayed from my diet for years except for eating 5 medium shrimp on my birthday. i love seafood. I almost died from an iodine contrast dye which was injected for a kidney test 11 years ago, thus was told to avoid shellfish. Ate it 7-5 and have not have an adverse reaction yet. I am like you, not a pill taker. Makes it difficult to stay on this regimine but I do and feel so much better for it. I've read all the messages here and am curious about this MD Anderson? Where/what is it? Saw a UPMC hematologist, he doesn't think I need a bone marrow biopsy as of yet. This disease is so crazy...all my bloodwork comes back normal, and believe me, have given up my share, tryptase, platelets, even sugar and cholesterol. The Heart specialist I had to see, just to be sure, said I'm too healthy to be sick. Go figure. Feel Well and stay positive! Annie With Spots

Gman206

I had problems with Gastrocrom didn't seen to help much. Algonot is the only none medical alternative to the bone and stomach that I have found. Doctor's don't like naturepathic stuff for some reason, but I found it to work on my joints and stomach pain. My first month was amazing. Read about the inventor and you will see he is very involved in Masto research and used to present in a lot of the yearly symposiums. Just an alternate choice that may help some.

masto4acure

Cynclaire...I also take 400mg of Gastrocrom 4x/day. Originally started on 200 x 4, but over time it just wasn't enough. I titrate my med dosages based on my symptoms at certain times of the year. In winter, I am less triggered and can reduce some of my meds. When pollen and heat hit, up they go again to my max dosages. I also take a rather high dose of Zantac, 1200mg daily (450/450/300), which helps me tremendously. In addition, I take Allergra twice daily, Singulair twice daily, Motrin 600mg 4x daily, Xanax 1mg XR twice daily, Gabitril 2mg 4x daily, Benadryl 25-50mg at night, and Mucinex 1200mg twice daily. I have my Epi-pens and inhalers on hand as needed. Although not everyone chooses to take a lot of meds, for me it is the right thing to do because it helps me have the best quality of life possible. Supplements are wonderful if they do the trick...for me, too many reactions and not enough symptom control w/ supp's, but I'm glad some people have found relief w/ them. At the moment I only take 3 supp's...Acidophilus and Caprylic Acid to control Candida issues, and Melatonin at night for sleep. Julia

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