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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

Explore topics in this discussion:

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

Poetessa

I am so sorry to hear that your husband had a stroke waiting for the ambulance, that is just horrible. I too had some close calls waiting for the ambulance.
I would think that one would qualify for SSI with SM, I think we all know that with all the symptoms working is not the easiest endeavor! Gman luckily works for himself but I think he's threatened to fire himself a few times for being late too often!! LOL
I can't imagine how I would get out of bed in the morning and function now that I'm so sick and I can't imagine anyone who would want to hire me!!!
I'm going through a divorce and my husband is trying to refuse to give me alimony and insists that I get a job but.... I'm at a loss for what at this point!!!
Not much demand for a former actor who sleeps all day stays up all night, is in pain most of the time and or on the floor with agonizing gastro pain... and of course the constant chance of full blown anaphylactic shock at any moment and lets not forget the spots.... I'm sure Martin Scorsese will be calling tomorrow!!! LOL
I know it's so frustrating for everyone here, there just doesn't seem to be much to improve our health other than anti histamines, stomach meds and pain killers but that doesn't slow down the illness. I am hoping that the Gleevec helps those who can take it!! I'm one of the mutants who cannot. And I've heard mixed results with chemo, how did Gman and others fair?
I can't believe Gman's tryptase!!! I feel like a total wimp with my highest being 182!!! And I would be curious to know what everyone's bone marrow involvement is if you'd like to share. Even though my tryptase is mere child's play, my last BMB was 70% which creeped me out, it jumped from 50 to 70% in 1 year when they said it most likely will never go up....??? I asked what happens if it jumps 20% again this year and my dear sweet optimistic doc just insisted that it won't..... that's what they said last year!! Can we live with 10 or 5% bone marrow?? He didn't answer that question either...
And I'm weird because my tryptase if falling and marrow rising... what a freak I am!!!
I am wishing everyone a symptom free happy night!!!
hugs to all,
Leslie

doglvr123

My husband is on disability but we did not qualify for the SSI because I had some money in my 401-K. He had a stroke in December from the anaphylaxis. He lost blood flow to the brain for too long before the ambulance got there. This was before we new about the Epi. The stroke has alot to do with him being approved for disability, but just about everyone I've talked with that has SM is on disability. It would sure be worth a try!!

mph

crazy question: anyone "know" if you qualify for SSdisability because of systemic masto? You do not have to say if its you or whomever just can you qualify? thankyou.... Also can you go to college if you are on SSdisability? or do they just make you sit at home & stare at the walls per say?

CSIII

I've recently had the diagnosis of systemic mastocytosis confirmed after having attacks over the past two years. I've been to the ER 12 times with severe anaphylaxis, used epi pen 6 times and never leave the house without two of them. I'm still able to work, although there are days when I seem to be running on auto pilot. The thing that has helped me the most has been Gastrochrom. I've read that there are some that aren't helped by it, but it sems that it was the missing link for me. I'm also taking hydroxyaine, benedryl, loratidine, and singulair. I'm a walking pharmacy and most people, after finding out what I am taking on a daily basis, don't understand how it is that I am able to function. The biggest problem I have right now is with my insurance. I have been to UCLA to see doctors there, but all of the tests they request have to be done at my local medical practice, about 65 miles from there. I've had a bone marrow biopsy done a few months ago, but the only result of that was to tell me that I don't have cancer. Good news, but not what I needed to know. My allergist is really bearing down on things, but he is learning about this disease as we go along. I'm waiting for another referral to go back to UCLA to discuss the findings of the last battery of tests I had. They include blood work, x-rays, EKG, CAT scan and the doctor at UCLA wants to do another bone marrow, but wants to do it there and send it to a lab in Germany. The insurance hasn't agreed to that as yet. Such fun. At least I know what I have and for the most part it is under control. I've not had a major attack since being on the Gastrochrom. If I feel that something is imminent, I take a couple of extra Benedryl and the symptoms subside after awhile. The thing about it all is that my wife and I don't travel far from home. My doctors want me to stay within close range of a hospital. After reading about some others that have the same disease, I can put up with that.

masto4acure

Hi doglvr123. Sounds like you went through quite a frightening ordeal w/ your husband on his road to getting a diagnosis. That is not uncommon in my experience and based on what I've heard from others; since Mastocytosis is relatively rare and many of our symptoms are rather non-specific, it is not usually the first diagnosis that comes to mind for doctors.

My diagnosis took at least 12 years, although I wasn't horribly ill for all of that time...it was after my pregnancies that the symptoms came on much stronger. I have heard that often seems to be the case, that people may have the disease quite mildly and not even know it, or maybe they are completely asymptomatic, but then a sudden stressful event or series of events seems to be the catalyst that brings the disease to the forefront. I'm sure this isn't always the case, but I've heard this from numerous people.

I don't really know the answer to the question about whether we are born w/ this or if it is acquired later in life. Some infants are born w/ signs of mastocytosis, such as rashes, which makes it a clear-cut answer in those cases. But many people don't develop symptoms until later in childhood, adolescence or even adulthood, so it is hard to say in those cases at what point the disease really started. Looking back, it is clear to me that it was definitely present in my teens, if not maybe even my childhood, but as a young person, I didn't understand that what was going on w/ my body might not be normal, and it wasn't constant or severe enough to really concern me all that much. I did go to the doctor fairly regularly, and occasionally for symptoms that I now know were related, but it was just never picked up on. It was eventually me putting the pieces together and finding the right doctor to do the proper testing that got me my diagnosis.

As far as the doctors I see, I have seen Dr. Akin, who originally came from the NIH (National Institute of Health), but he is on the move again and will be heading over to Brigham and Women's Hospital in Boston in the coming months. Other than that, I had a great hematologist/oncologist in the early years of my diagnosis, but he has since left state. Now I just have my local allergist, who has been wonderful in working w/ Dr. Akin and, in the past, my hematologist, to help me build the most effective treatment plan possible. I do plan to look for another hematologist here in the near future.

So anyway, I commend your doctors for their willingness to work w/ your husband's unfamiliar condition and try to come up w/ a treatment plan. Sometimes that works out great, especially if they are quite open-minded and willing to spend some time investigating and learning about his disease, and even contacting the experts in the field if need be; often times they are willing to consult w/ local doctors. The relationship between the patient/family and doctor needs to be a give and take, so that everyone is working together and bringing ideas to the table. You and your husband will find that it is very important to become your own best advocates, and learn as much as you can about his disease through other patients, online resources, and various support groups and organizations. It takes time and patience, both on your part and the part of your husband's doctors...and changes in his condition can occur over time and under certain circumstances, making it necessary to make adjustments to his treatment plan from time to time. So all in all, as long as you have an open, ongoing relationship w/ a doctor or doctors you trust, that may be enough. And if at some point you are interested in seeking the opinion of an expert in the field, there are a number of them across the country.

Also, there is an annual TMS (The Mastocytosis Society) conference, which is held in a different location each year, that brings patients together w/ some of the leading experts in the field of mast cell research to hear lectures and even ask questions. If you haven't already visited The Mastocytosis Society's website, here is the link: http://tmsforacure.org/
You may find some helpful information about mastocytosis here, as well as support group information, and info on the annual conference, which is held in the fall.

Best of luck to you!

masto4acure

That is almost exactly what I say to people...don't know what I'd do w/o Motrin (ibuprofen)...it gives me the strength and energy to keep up w/ a somewhat normal life. I would be bed-stricken from fatigue, tachycardia, low bp, and pain if I wasn't on it. It also seems to help w/ my abdominal cramping, flushing and itching. I know a lot of people shy away from even trying NSAID's because of the warnings of possible mast cell degranulation, but I think they are worth a try if done in a safe setting under proper medical supervision or if the patient has done well on them in the past. That was the case w/ me...I had been taking Motrin on and off for years for headaches...it was when I finally got my diagnosis and went OFF of them (due to the warnings) that I got WORSE. So I went back on them and not only did I tolerate them fine, but I was much improved again w/ my energy and other things. I know my allergist has one other mastocytosis patient, and one of the first things he did for the guy was put him in the hospital and slowly build up his aspirin dosage until his symptoms were more controlled. I think he was doing well on it for a while...not sure how he's doing now. Anyway, nice hearing from someone else who does well on NSAID's...I agree, it's not something you hear about often. Oh...a couple of other interesting things I should mention...I haven't done well on Aspirin or the other NSAID's I have tried along the way...and the one time I tried a generic ibuprofen (instead of Motrin), I had a bad reaction. We are definitely each unique in our experiences.

cynclaire

Hi Masto4acure,
I too am helped daily by advil. I have often said I would be screwed if I didn't respond well with it and have said how thankful I am that it works. I haven't heard of anyone else really helped by it so I was intrigued.

doglvr123

You know my husband has suposably had this for 9 years now, but was just diagnosed in April of this year. The only symptoms that he had was the anaphylxis which nobody could figure out what was going on. We have even been to the Mayo Clinic in Jacksonville, FL. Every Dr. looked no further than Heart and Neurological. The only way it was detected this time, he shocked in December and was on life support for almost three days. His Neurologist noticed that his histimines were high and went from there. It seemed like this was the first thing the Allergist suspected when we went to him. He diagnosed him right off the bat. Of course he had a BMB to confirm. Needless to say, we are just getting started! Have you ever been told if this is something you are born with or something triggers it or what? I would really like to see a specialist, but both dr's feel they are able to treat him for right now. Neither dr. have ever treated it though, so I hope they know the right things to do and the right meds. If you don't mind me asking, what dr's do you see and where?

masto4acure

The fatigue can be very overwhelming, especially when you haven't gotten the meds tweaked just right. Gastrocrom can really help w/ fatigue, as well as improving headaches, brain fog (confusion, fuzzy thinking), itching and digestive issues (cramping, diarrhea), just to name a few. Also, some people require twice daily dosing of their meds vs. the usual once daily dosing, and sometimes doses need to be higher in mastocytosis patients than in the general population.

I've found that ibuprofen really helps me w/ my fatigue, pain, flushing, tachycardia (rapid heartbeat)and low blood pressure, as well as many of my other symptoms...but again, drugs like these (NSAID's/Aspirin) need to be approached w/ caution and under the care of a doctor because of the potential for anaphylaxis in certain individuals.

Like you said before, mast cells affect our bodies in a lot of ways, so while a medication might typically be indicated for one particular symptom, it might also help other symptoms that you might not even realize are related. The chemicals that are released by the mast cells, such as histamines, leukotrienes, and prostaglandins, can have receptors in numerous organs and areas of the body, which means that drugs targeting these chemicals will improve functioning in multiple ways.

One last thing I want to say is that some days are better than others...sometimes it is easy to pinpoint what might be triggering an increase in symptoms, while other times it might be harder to determine the cause...and sometimes, there may seem to be no cause whatsoever. Many of us report that our symptoms can vary quite a bit from day to day, and even from moment to moment. And of course, as you have probably noticed already, they vary quite a bit from person to person. Mastocytosis is a disease that requires patience and diligence, but it can be managed.

Oh yes...one more thing came to mind that is very important...does your husband carry an epi-pen (epinephrine auto-injector)? This can be life-saving in the event that he has an anaphylactic episode, so it is a must-have once a patient has been diagnosed w/ mastocytosis.

Best wishes...Take care!

doglvr123

Thanks,
This is all new to us, so I'm seeing a long road ahead. I guess his biggest problems as of now is just being so tired all the time. He never has energy and spends ALOT of time laying around. Lately he has mentioned some of his bones aching and he's had some dental problems. Don't know if the dental problems are related or not. From what I hear Masto can affect just about any part of your body it wants! Thanks for the encouragement.

masto4acure

Those are two good antihistamine drugs. I take Allegra too, but I use Zantac rather than Pepcid, just because it seems to work better for me. Gastrocrom is another medication that was created specifically to treat mastocytosis and works very well for some people, me included. I also take Singulair and Motrin (ibuprofen), although not everyone tolerates non-steroidal antiinflammatory drugs (NSAID's) such as ibuprofen...they can cause mast cell degranulation in some people. I wish your husband the best w/ his tests tomorrow, and good luck getting the meds and dosages all worked out...it can take a while, but eventually he will figure out what works best for him. Best of luck!

doglvr123

The only thing my husband is on now as far as the masto is pepcid and alegra. He goes tomorrow for bone scans and an ultrasound on his abdomen.

masto4acure

Is anyone on here taking Xolair to help control their mastocytosis?

cynclaire

Wow, Gman. Can't imagine a 700 tryptase. I can relate that everyone thinks how well we look from the outside and feel awful on the inside. Those that know me well can tell how I feel by my eyes. My UP spots are everywhere but my arms and face. My feet itch the worst in hot weather. Bernadette, how is the new medication working?

doglvr123

Gman
I've been out of touch for a few days as my internet is at work. We will be getting internet tomorrow at home. What is your email address so that I can give it to Rod (my husband)?
Hope your doing well. Rod goes for his ultrasound and bone scans on Thursday.

Thanks,

Sonya

doglvr123

gosh, this is just amazing at all the different stories from everybody. I'm so sorry you are having such a rough time. Rod feels like crap, but he's no where near this bad.
Keep in touch!

Gman206

I started getting the spots around 1982 and was diagnosed with UP in 1983. Back then they didn't know much of anything. I went to an internalist in 1986 but they really didn't know anything other than IBS. I had an operation in 2002 which through my body into a wakey stage. I was already diganosed with SM by then so I was on Allegra and pepcid. I lost most of my dexterity and speech. My trytase was in the 700's... I feel a lot and my days consisted of going to work and sleeping under my desk. My family was pretty much preparing for my demise. Well it took close to a year to get my system back to some what of a normal MS person. Gastrocrom never worked on me and my ckit is not condusive to Gleevec. So I take lots of Doxepin, pepcid, singular, effexor for dression, regulate between codeine sulfate and oxycodone for pain. My sleep patterns are very wakey and find some of my best times are between 2 and 3 in the morning. It would be nice to get to a somewhat normal schedule. I am 48 years old now. I look healthy but on the inside and under my clothes it's a different story. I have spots every where except my face. I eat one meal a day due to being affraid of the out come, but don't loss weight other than the 10lb I can change in a day. I dump every day which sucks. The intestinal pain can go off the charts. I hope they will find something that works. I had over $11000 of blood tests last month plus cat scan, mri and BMB( had 4 so far in the past years). I don't even flinch when they do the BMB because the intestinal pain is far worse. This is just part of my journey... Sorry if I sound negative I've just lost a lot of faith in the medical system and Doctors who just prescribe. Ciao for now...

doglvr123

When Rod shocked in December, his Neurologist noticed that his histimine levels were up. That is how he got to the allergist. The allergist did the tryptase levels and they were high which led them to this possible SM. They did the BMB and it showed definitely SM. I thought that was the only way to definitely confirm. I would do it. Rod said that it wasn't that bad. I guess with anything, it affects different people different ways.
Good luck.

Muggebrs

I have been suffering for 2 yrs with hives, my allergist gave me zyzol 5mg a day works great for me they have been thinking sm for a coulpe of years my tryptase level keeps going up so now they will do bmb later this month they say thats the way to confirm it, but not always, I wouldn't mind having it if it was more of a black and white test , to go thru that and still not be sure would really stink.

cynclaire

Gman,
So sorry about the chemo. I will say a prayer that it goes well and helps. Obviously your symptoms progressed. When did you get your UP and when did you go systemic? I had my UP spots long before I noticed the systemic.....alcohol became poison which was a good thing.
Take Care,
Cynclaire

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