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Systemic Mastocytosis

doglvr123
3 Recommendations

My husband has just been diagnosed with this and I know absolutely nothing about it. Can someone give me some insight?

Thanks,

Sonya

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Cancer Surgery Motrin Nexium Zantac Allegra Oxycodone Anaphylaxis Peripheral neuropathy Effexor Mastocytosis Mucinex Advil Confusion Aspirin Ibuprofen Stroke Wellbutrin Singulair Rashes Pain Depression Diarrhea Ranitidine

40 replies

Rose1932

From all my research on this it seems the symptoms are so varied from one individual to the next, it's hard to find a list of symptoms anywhere. I have systemic mastocytosis with a hematology disorder (I'm a bleeder and have had numerous blood transfusions since I don't clot readily, just ooze when I have surgery (even dental extraction). I have had this for some time but have just been diagnosed (I changed doctors about 3 months ago). Will start on Gleevec within a week and see how that works. Have been taking Hydrea for about 10 years. I itch something awful. That was the main thing that sent me searching for a reason for the intense itching.

besg

Bernadettenenolen: You have itching????? Do you have spots too????? I really want to know as I feel like I am the only with with all these stupid "spots" that itch to the point of bleeding if I don't stop. It is either that or lather myself in creams and stuff and then I am all gooey. YUK!!! I mostly try to do the mind over matter thing which works most of the time but lately it has been getting worse. But almost everyone else I have tried to contact on here does not talk about the "spots" or the itching. While I greatly sympathize about the bone pain and such, I was hoping was I not just an oddity among the odd. This crazy disease just does what it wants and affects everyone so differently it is just crazy.
doglvr123: What do you want to know and I will tell you what I can. I was diagnosed about 5 years ago now. It started with the "spots" and it has progressed to my digestive system. Luckily I do not have the bone pain but I have days where the only thing I can say it is like you hit a brick wall and you just have to stop and retreat for a day or two. No rhyme or reason to it, it just is.
You can e-mail me at g.gisch@mchsi.com if you like. I would really like to hear from either of you.
Take care and I hope you more good days than bad.

doglvr123

This must be different for everybody because sometimes I think they have diagnosed him wrong because he don't have the same symptoms as everybody else. But when I read up on it on the net, most of it fit him to a T. I just wondered about the diet. After reading about the foods you should avoid, he's afraid to eat about anything now. I'd just like to have any insight that anybody has on this.

Thanks for the replies!!

Sharon

doglvr123,
Have you looked at www.tmsforacure.org and http://mastcelldisorders.lefora.com/forum. There is more information on the "lefora" site about the diet. But the thing that I can tell you for sure is that the diet varies greatly for us. I have been diagnosed with systemic mastocytosis since 1994. For me there was a huge learning curve - that indeed was quite scary. I find now that if I eat bland foods - primarily vegan with no coconut or eggplant - that I do quite well and can eat well. I know masto's that can eat curries and spicey foods - not me.
There are some high histamine foods like raw tomatoes and pineaple that I must avoid, but I eat. I also tend to do better with smaller meals. So I eat 4 meals a day with a light snack. At my house there is such a thing as "second breakfast."
Also, you may note on the tms web site where they list the symptoms, there is a great variance in the degree to which symptoms are worse in each patient. Like I am a shocker, I have a couple of masto friends who have never shocked. I don't have as much bone pain as some of my masto friends, but my peripheral neuropathy can be quite severe.
There also seems to be some variance in the way we respond to medications. I have days where there are 4 or 5 hours where I feel as well as I did pre masto. Then there are other days where I never hit that place or get even close. I've had a very difficult time with some of the meds that are considered normal for a masto patient. It took a while to find the right medications for me and from time to time we have to redo my meds.
The good news - I am still able to do some volunteer work. I've traveled some this year. And I am still able to enjoy many of my hobbies. I'd not be able to work full time at this point, but there have been years since my diagnosis that I've maintained full time employment - and there could be again.
If you'd like to drop me an email some time, feel free - my email address is marysharonr@aol.com. I am not a medical professional, but I've been living masto a long time.
Sharon in NC

doglvr123

This is great....thanks for the websites!!

jr7449

I too have been living with masto for at least 8-10 years without knowing it. Finally diagnosed 6 months ago. My oncologist wants to put me on chemo. Has anyone tried other drugs that work? I would like to find out before chemo. Gleevac was not my answer.
Please let me know.

doglvr123

We went for the bone marrow yesterday and now they are saying that he does not have Mast. They said there were no cell accumulations or anything, so we are back to square one trying to figure this out. Thanks for all the replies and I wish all of you the best!!

jr7449

dglvr123 and anyone that might help: What medications have helped, outside of Gleevec?
I do take Hydroxyine for the itching. If sm produces too many histamines, why can't we take heavy doses of antihistamine to combat this disease?

doglvr123

I'm sorry, I can't help you. My husbands allergist thought he had SM, but after he had his bone marrow, they are saying now that he don't have it. We had never started any medications or anything for it. I'm sorry I can't be of help. I do wish you the best though.

cynclaire

jr7449,
Many people do treat the histamine release with antihistamines. I take two allegra per day. This for the most part keeps me in check with the UP (spots). Mine has also gone systemic and I take zantac 3/day, and I have depression so I take Wellbutrin. I was at a national conference and one of the doctors suggested increasing my dose of gastrocrom (a liquid medicine primarily used for stomach issues) to help with my "brain fog" or organic brain syndrome which many masto patients complain about. It made an immediate difference so when I notice those symptoms I start that medicine. This is rare and frustrating not only for us but for the researchers as well because our symptoms are so varied. Also, doglvr123 many times the bone marrow biopsy does not give a firm diagnosis yet the patient exhibits all of the symptoms. I feel very badly for these people as their frustration increases dramatically because they still feel crappy. When I attended several conferences there were more people there in this category than with confirmed bmb. (bone marrow biopsy) The Mastocytosis Society nationally and internationally have tried to get these people recognized medically as Mast Cell Disorder and would be under the mastocytosis umbrella. Look at the tms website that someone else suggested and they have the conferences and their question/answer portion on dvd i believe. Also with a membership I get a newsletter that I find helpful with stories and information on future conferences. I sound like a huge part of the TMS but I am not. I found them after I was diagnosed systemic in 2003 and attended several conferences where I learned so much and the leading researchers were right there and approachable.

doglvr123

They have my husband on Pepsid daily along with Alegra. I'm not sure where we will go from here. Apparently this is so rare, they are going to have to research it to even know where to begin. How do you join to get the newletters and how do you find out about these conferences?

Djkmom

Hi There,
I have been away for awhile. Hopefully I'm back for awhile....
I would like to say, I found out alot of my answers on the Systemic Mastosytosis on their web site.
It named medicines that may help... Allegra and Pepcid? Really??? Thats it?
Doesn't he take Gastrocrom (Cromlyn) 4 x aday, it helps with bone pain and stomach. I also have to take Nexium at bedtime. Also Mucinex DM, 2 x aday Singular(bedtime), Allegra, and Ranitidine. You should really ask your immunologist. Right now my numbers are up on a few of my test.... So I don't know where I will be going from here. I hope this info helps!
Djkmom

doglvr123

Well he was just officially diagnosed yesterday, so they really haven't even gotten started on his meds. I'm sure there will be lot's more when it's all said and done!!
I'm gone for the weekend, so be in touch next week.

Have a good one!!!

Rose1932

I just started Gleevec last week. Only 100mg to start. So far, no problems. I was on hydroxyurea (Hydrea) for 10 years and had trouble keeping my RBC count up. Had to have some transfusions. Still on 1 500mg Hydrea a day while I'm starting the Gleevec. My doctor (a new one, not the one I started with 10 years ago), thinks the Gleevec is going to make me feel like a new woman. We'll see. In a way I don't want to know the problems with Gleevec but in another way, I'm very curious. I have read all the side effects both on the computer and all the literature that came with the meds. Fluid retention and nausea are the two things I really don't want.

Rose1932

besg - sorry I took so long to respond. Yes, the brown spots and the itching !! I have had the itching for about 15 - 20 years. Brown spots result after sores heal. I itch so bad I feel like getting a knife and scraping a layer of skin off. I was on anti histamines for years, don't know how I walked around with that much in my system. After seeing many different doctors, I was presented at a Grand Rounds at MUSC here in Charleston and about 25 dermatologists had a look at me. None came up with same dx. Then was sent to a hematologist/oncologist for a bone marrow biopsy and was dx'd with hypereosinophilia. Put on Hydrea with blood work every 3 weeks. According to the eos count, my meds were either up'd or down'd.
Last year my RBC was 7 and the doctor wouldn't order a transfusion, wanted me back in a week to recheck my counts!. I changed doctors (My primary care doctor ordered the transfusions). Now I am with MUSC Hollings Cancer Clinic and had another bone marrow biopsy and have now been dx'd with systemic mastocytosis. Still confused about what it is and how much of my overall health is being affected by it. Will let you know how I do on the Gleevec. I will be able to stop the Hydrea after he checks my blood next week. One less pill, I hope.

doglvr123

Has any one of you been told what may have cause your SM? I'm just trying to figure out if this is something that you are born with or if there is something that has happened to onset this.

Thanks,

doglvr123

cynclaire

Hi all,
You can find out about the conferences on the tmsforacure.org website. It will be in the fall Oct 1-4 in Tenafly, NJ.

They don't know a cause for the disease but they are narrowing the cell abnormality and c-kit something. It's all very technical but if you want, doglvr123, I can send you a disk and the material from the conventions. I would be happy to. I do not have the most recent from last years conference in Minneapolis but they usually sell the disc online at the tmsforacure website. You can email me at ccn1977@yahoo.com if you are interested.
Cynclaire

Gman206

Urticaria Pigmentosa is very common with us that have mastocytosis... this is the skin part where the histamines stay as spots on the skin and itch. During itchy times try using some baby liquid Antihistamine. This works for people with stomach pain also it seems to get in the system much faster than the pills. Algonot is also a great addition to standard meds that no one really talks about. It has done wonders for me and it is about the only naturalpathic suppliment for us with MS and UP. Hope some of this helps...

cynclaire

Thanks GMAN. I had never heard that. My UP was really itching today. Where did you get Algonot? Is it oral or topical also?

Gman206

http://www.algonot.com/ is where I ordered mine. It is is soft gel vitamin style pill. The inventor has lectured at some of the TMS conferences, but for some reason you have to pull teeth to get them to tell you about it. You'll know if it helps with the first bottle. I wish you the best I've been fighting this since 1982. I get to have chemo treatment starting the 8th of June
:( not sure if it will help or cause more problems.
Ciao for now....
Gilbert

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