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Systemic Mastocytosis

jr7449
1 Recommendation

I was diagnosed with systemic mastocytosis about 6 months ago. This was after years of seeing doctors for my skin, which has been worsening with red/brown blotches that swell into hives when having an itching attack. My entire torso is covered, my upper arms, the top of my thighs, and splotches here and there, everywhere. Finally, one doctor asked me to participate in a group viewing for a diagnosis. At least 50 doctors saw me, one or two at a time, and all said 'Oh, you poor thing!'
I was then sent to an oncologist for a bone marrow test, which confirmed that I have systemic mastocytosis. Now what?!
He put me on Gleevac until my face and ankles swelled up terribly. He took me off. Again, now what?!

Explore topics in this discussion:

Diverticulitis Claritin Acid reflux Back pain Allegra Kidney stones Vertigo Thalidomide Benadryl Mastocytosis Stress Advil Leukemia Sweating Anemia Rashes Pain Thalomid Diarrhea Hydroxyzine

32 replies

NORDGeneticCounselor

The Mastocytosis Society can provide information about on-going research:

http://www.tmsforacure.org/index.shtml

besg

Oh!!!! You have spots!!!!!!! You itch!!!!!! Oh please e-mail me at g.gisch@mchsi.com I to have the "spots" and the itching and boy would I like to talk to you. I felt like I was just the ultimate oddity among the odd. Hardly anyone else has the "spots" but still has Masto. Waiting to hear from you.

Rose1932

I've been seeing allergists, dermatologists, acupunturists, family practice doctors, internal medicine doctors for over 20 years for the terrible itch and breakouts that leave brown spots all over my back (upper and lower) but some on my arms and legs also. I also was presented at a Grand Rounds where about 25 dermatologists examined me. Finally I was referred to an oncologist/hematologist and had CT scans and a bone marrow biopsy. At that time (about 12 years ago, he said I had hypereosinophilia and started me on Hydrea. According to the lab work, he adjusted it from 2 to 4 a day which brought my RBC down (well, really all my counts down) and I had to have transfusions. (I also have a bleeding problem and I hemorrhage after a simple tooth extraction and especially after any major surgeries). I just changed hematologists about 3 months ago and after he did much lab work and a bone marrow biopsy, he says I have mastocytosis and is starting me on Gleevec this week. I hope I don't have any of the side effects and I can get some relief from the intense itching. This doctor also feels that a lot of my other physical problems are due to the masto. We'll see how I feel in a couple of weeks.

cynclaire

I was diagnosed with systemic masto about 6 years ago with a bone marrow biopsy. I have had the spots for 31 years and thought it was simply a skin condition and had no idea that it could go internal. I have the gastrointestonal issues, skin issues, lung issues, and "brain fog". I have been to 4 national conferences and they have been very helpful. There are research doctors that attend that are very approachable. They are the experts in this area and they are from around the world. The Mastocytosis Society is trying to pull together all those with systemic mastocytosis and other mast cell disorders to educate and also the more people we are aware of the more research may become available. They are also trying to organize regional groups. If you have any mast cell disorder I would encourage you to try to find groups in your area. Go to www.tmsforacure.org to find possible groups. Sharing information and experience creates strength and gives hope. Only those that experience this debilitating and deceptive disease can truly understand.

besg

So there are other people with Masto that have spots!!!!! Like I said, I was thinking I was just that rare oddity among the odd. The itching was not to bad but lately it has been getting worse and my energy level has dropped dramatically. I just got some rather distrubing news last evening when my Dr called and said he feels like it is progressing into the Aggressive Systemic Mastocytosis. Not good. He is discussing with a Dr up at Mayo and 1st I have to have another Bone Biospy done and then possibly start on Interferon treatments. I really was not expecting to hear that. Has anyone else had any experiance with that? He said that some people can do the Gleevac treatment but because I have some weird mutation I can't do that. To be perfectly honest I kinda feel like he just handed me my death sentence and I am not handling that very well. I mean I knew all along that this could go south on me, I just was not expecting it already. If anyone has anything to share I would love to hear it, good or bad. Or you can e-mail me at g.gisch@mchsi.com. Thanks

cynclaire

The doctor that has been at the conferences from Mayo is Dr. Butterfield. I don't have any experience with interferon but there are people that have. If you contact the Mastocytosis Society at the above email I bet they can put you in touch with someone who has. Also, are you on antihistimines? My energy levels come and go as well. Someone on the discussion group said they wondered about antihistimines. Was that you? I would try those meds first before interferon.

jr7449

Hydroxyzine is an antihistimine. All that it really does is help with the itching. And makes me drowsy.
I, too, have little energy at times. It reallly kind of zaps you when it wants. When might you be trying interferon?

cynclaire

I don't plan on doing interferon until I am not functioning on a daily basis. I take allegra which does not make me drowsy. I hate that feeling. Might try something else because they all affect everyone differently. Wed. I moved my daughter out of her dorm and was exhausted and was "down" for two days. I am better today because I rested My good stretches far outweigh the bad ones. It is also trial and error. I love tennis. In the last year, I have discovered that back to back days of tennis made me feel crappy for several days. I told my captain that I couldnt do that any longer and it was much better this spring. Left several days in between and felt better. Same with foods and heat and cold etc...My water temp shouldn't go over 98* is one example.

jr7449

cynclaire,
For sure I can't go in the hot tub over 98*. At times, I just have to see the sun and I start flaring up. I try not to let it get to me, but the heat just leaves me crazy!
And you know that the more you scratch, the more you itch! My patches are almost hard to the touch, and raised (like hives) Seeing oncologist on Tues.

cynclaire

Did they ever take a tryptase test? It measures the levels of histamine in the blood. I wish you positive information at the doctor.

mastocreepsuperfreak

hi i suffer from systemic mastocytosis and am in the hospital right now due to a flare up i have been reading everyones message and they talk of the itching but does anyone have the severe gut and bone pain. i have tried all the things i can and have been seen all over the country. ive tried the gleevec and it didnt help me i have also tried the cladribine and right now am on thalomid or thalidomide. i just was wondering if anyone had the symptoms i have or if i am just a super freak

weela

How can Masto effect your lungs? What can it do?

jr7449

I also experience severe stomach pain, mostly after eating, but at times for no reason. It is totally debilitating, breaking into a cold sweat, close to passing out and at times followed by diarehea. My bones hurt at times, usually knifelike intermittent pain. I go to the oncologist today and will ask. I am also trying to get into a clinical trial in hopes of finding some relief.
I imagine it also effects the lungs somehow. It is hard for me to know because unfortunatly I am a smoker.

cynclaire

I do not consider myself severe with gut pain or bone pain. I do have gut flair ups with cramping and diarrhea and my bones ache but I am so fortunate that advil works at this time for the aches and chills. I really feel badly for those of you that are severe and are finding no relief. My prayers are with you. My lungs are affected by cold air and seems to react to blowing air on me. My car airconditioner, going from warm air into cold air and in Texas every inside venue is cold. Asthmalike symptoms. I use an inhaler. Last December was my worst flair for over a week. I felt like I couldn't leave the house. Conditions were just right and I just couldn't breathe. That's how my lungs react.

Gman206

Yes, gut pain can be unbearable at times and I have dumping 5 days a week. When I start Algonot Plus the first month was incredible it allieviated my dumping and intestinal pain. It is worth a try... and doesn't interfere with my H1 and H2''s. I tried gastrocrom a few time at 6 month length and found it didn't help me, but a lot of people find it a miracle worker. The inventor of Algonot has spoken many times at National Convention for TMS. Hope this helps... Has anyone done lite chem...? My Dr wants to try this next, since I am not a candidate for Gleevec. Not sure what lite chemo means??? Appreciate any imput... thank you Gilbert

Muggebrs

I take zyzol 5mg for my hives works great, have u tried that

MTPJunior

I also have been diagnosed with Systemic Mastocytosis.
I have MANY different symptons that seem to get worse each day.

If anyone would like to talk about this and learn more from each other, please feel free to contact me at martyjr108@hotmail.com

Maybe together we can help the doctors HELP US.

Stay strong and never give up,

MTPJunior

Some of the symptons that happen to me.

Headaches, stomache pain, right sided numbness, sweating, calf pain, lower back pain.

I have this nasty disease in my bone marrow and skin.
3 leasions in my brain that MAY also be the masto.

jr7449

I will be participating in a clinical trial on June 19th an M.D. Anderson in Houston. I will need to take all of the tests again, including bone marrow biopsy.
Will let you all know how it turns out.

hollyhocks1231

yes, i have what you have..been on interferon for almost 2 years. i think it is keeping me from getting any worse. it's called pegysis...i also take hydroxyurea, 2 a day and the injection weekly. you get used to it.

i believe the masto has caused everything i've gotten in the last 10 yrs. gall bladder removal (1 lg stone), kidney stones, parathyroidectomy, (this month), fibromyalgia,(severe), osteoperosis, acid reflux, and probably even the ovarian tumor.

it all began w/burning fingers, then mysterious rashes came and went, then fatigue, headaches, body pain, stiffness, until i had to quit my job and go on disability.

i've learned to stay away from stress as much as possible, and rest a lot. take my meds and see my oncologist often. just gotta take care of yourself. so you're really not alone....and we understand what you're feeling.

not fun, i know. but there are people that have much worse. like some of our brave soldiers, losing life and limbs for us. so we have to be brave too. it'l be alright. learn all you can and be patient with people who just don't "get it". we are unique, that's for sure. i'd love to know how i got it. lol.

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