Systemic Mastocytosis

WendyHall · 02-26-2007, 11:44 PM

Anyone out there with systemic masto? Looking for any new info/treatments for the severe head pain.

Wendy

Aussie39 · 02-27-2007, 02:08 AM

Hi Wendy,

I'm new here too, I was diagnosed with Systemic Mastocytosis about 7 years ago. I just posted under the thread "Can someone have mastocytosis and still have negative blood tests?" & then saw this post. I have suffered from severe headaches with this disease but my current "pile" of medications seem to be controlling the headaches pretty well, I still get headaches just not so bad. I know that names of meds are quite often different in US to Australia but I'll list their drug names where I can.

Telfast - Fexofenadine 180mg 2 x day
Nalcrom - Oral Sodium Cromoglicate 200mg 3 X day
Pyralin EN - Sulfasalazine 1000mg 2 x day
Brufen - Ibuprofen 800mg 3 x day

Aspirin - 300mg per day ( I have a circulation problem & take this to prevent blood clots, doctors not sure if its related to SM or not, some people with SM react badly to aspirin so suggest you check with doc before taking this)

Zaditen - Ketotifen 1mg 2 x day - This drug was brilliant at stopping all itching & improved headaches heaps but I gained 5 kg in 5 weeks while on this, it also made me very drowsy so I have stopped taking it.

I find the Brufen the best for dulling bad headaches & it's good for bone/joint pain that I often have but again it is a NSAID & you need to check with your doc.

I also go to the hospital every 4 weeks to have intravenous Intragam - immunoglobulin this treatment has taken my life from utter hell to bearable.

I go on and off several other drugs including Prednisolone and have trialled dozens of different meds. I know some people with SM take a mast cell stabilisor called Singulair, my doctor tried me on it but I had a severe reaction to it that nearly killed me.

What works for one person doesn't always work for someone else, talk to your doctor & keep trying different meds until you find something that works for you. My meds haven't stopped this disease & they haven't got rid of all my symptoms but they have made life bearable.

Ok this is getting a bit long, sorry, if you have any questions I'm glad to help,

Cheers Bronwyn.

WendyHall · 02-27-2007, 01:47 PM

Hi Aussie,

I have been on a pile of meds for several years now but the masto is just progressing. The one wonder drug "Gastrocrom" or Ketitofen is one that I can't take. I have every adverse side effect. I was also on chemo "Gleevec" for 6 months til I ended up with liver damage from the chemo or masto we are not sure which. I think it was the Gleevec but it didn't work anyway the number of malignant mast cells in my bone marrow kept going up not down. Gleevec doesn't work if you have the mutation in the ckit 816 which I do. I am on percacet for pain and Allegra 180 2x's a day (H1) and Zantac (h2),
Acephix (h2), can't even do a baby aspirin it sets off the anaphylaxis. The head pain is getting so bad I am waiting on yet another CT scan. I do have a brain tumor and it was partially removed in 98 after that the masto just went haywire. The doc believes the pain in the head is from the massive histamine dump in the brain but wants to rule out any more tumors. There are no migraines meds that work I have tried them all. Just wondering if anyone found something new. The percacet takes the edge off and does help the bone and joint pain though.

Wendy

Aussie39 · 02-27-2007, 11:41 PM

Hi Wendy,
I can only imagine how bad it must be to have a brain tumor as well as SM, I hope it isn't the brain tumor causing your headaches. You don't appear to be on any anti-inflammatory meds, I didn't get any relief from my headaches until I was put on anti-inflammatory meds (Brufen & Pyralin) even when on both H1 & H2 antihistamines and sodium cromoglycate. There's often an increase in Prostaglandin d2 with SM which causes vasodilation, vasodilation in the brain causes pain. Anti-inflammatories can help to decrease or inhibit vasodilation.

I'm sorry Gleevec didn't work for you, did your doctors know you had ckit 816 before putting you on it? Gleevec (Glivic in Australia) was only approved for use in Systemic Mastocytosis last year in Australia & only for SM without D816V ckit mutation. From what I understand there are several different 816 mutations each with different letters. I asked my doctor about the ckit mutations about 6 months ago & he admitted that he didn't know anything about it. So I don't know if I have 816 or not. Last time I saw him he still acted like he didn't know what I was talking about. I'm seeing him next week & have printed out a pile of research articles to give him so he'll have no more excuses! From what I've read recently there seems to be a lot of research going on & trials of treatments designed to target specific ckit mutations, in one trial they had 100% remission so I'm optimistic that in time there may be a cure for SM.

Just curious, how old are you? How long have you had SM? Do you have skin lesions? I'm 39, I was suspected of having SM at the end of 1999 but that was at least 10 years after I first started having some symptoms. Things got drastically worse around 1997 & I was tested for hundreds of things, changed doctors a few times and finally an endocrinologist decided to test tryptase and histamine. I didn't have any skin lesions until about 2 years ago which I think hindered the diagnosis a bit. I now have quite a lot of Telangiectasia Macularis Erruptiva Perstans and some Urticaria Pigmentosa.

I'm sorry that I'm probably not much help for your headaches but would like to keep chatting (writing) if you do.

Cheers Bronwyn.

WendyHall · 02-28-2007, 02:43 PM

Hi Bronwyn,

I just turned 41. I was diagnosed with masto in 1994 when I started getting the UP spots all over. I had no other symptoms then except the spots and they didn't even itch then. The doc then told me its very rare and its rare to progress. Guess he was totally wrong. In 1998 I started getting massive headaches so they did a ct scan and found a brain tumor. Had brain surgury and they removed part of it and said it was either coming from the brain stem or too close to it to remover it all. The surgeon must of been an ego maniac because he didn't even test what he removed from my head so we don't even no if it was caused from the masto. After the surgury it took about 6 months to fully recover (although I no longer had a sense of smell). Then the headaches started coming back and the masto symptoms took off like wildfire. I was on all the masto meds and had to keep switching the cocktails til we found the ones that helped and even then once I was on them for a few months had to switch again because they weren't helping. I have headaches all the time but recently they are getting so bad I want to die. I have dealt with severe bone pain in my legs and joints for about 3 years now. Anyway by 2004 my doc was at a loss of what else to do since we couldn't get it under control. He sent me to MD Anderson Cancer Hospital in Houston, TX where they were doing clinical trials for Gleevec for systemic masto. They said they would have to do another bone marrow biopsy and if my mast cells were atypical and had the cd2 or cd25 markers it would show my masto cells were not normal mast cells but malignant and I would be in the trial. Well my mast cells were positive for both cd2 and cd25. At the time they hadn't done the test for the ckit mutation. They said once they got enough masto patients they would do the test for all of us at once. But they started me on Gleevec. I had to have blood work every week and return to the hospital every 3 months for a bmb. The mast cell #'s were going up not down. About 5 months after being on the chemo I started to get even sicker if you can imagine that. My liver was really bad. They finally did a liver biopsy and I had
a very sick liver with alot of necrosis. They stopped the Gleevec since it wasn't working anyway. It took quite a while for my liver to get better and the side effects from a bad liver are awful, worse than being a masto or on chemo. After a few months they wanted me to try another chemo 17-AAG or a SuperGleevec (which is suppose to work for masto's with the ckit 816 mutation or so they say) and my local doc said I would wait on that since they wouldn't tell him what the toxicity would be on my liver since it was already damaged. So here I am just waiting. I don't have anymore good days. I do take anti inflammatory naproxin sodium and lots of liquid benedryl daily. I think I forgot to mention that earlier. I buy the childrens liquid benedryl and take lots of it because it works faster than the pills. I also have epi pens because I am a "shocker". I also pass out but usually feel it coming on and sometimes can lay down before I fall down. I just got my latest blood work back today and it looks like my wbc is high, segmented neutrophils is high (that's always high) and lymphocytes is very low. I am sure my doc will call me friday and go over it like he always does.

Wendy

Quote:

Originally Posted by Aussie39

Hi Wendy,
I can only imagine how bad it must be to have a brain tumor as well as SM, I hope it isn't the brain tumor causing your headaches. You don't appear to be on any anti-inflammatory meds, I didn't get any relief from my headaches until I was put on anti-inflammatory meds (Brufen & Pyralin) even when on both H1 & H2 antihistamines and sodium cromoglycate. There's often an increase in Prostaglandin d2 with SM which causes vasodilation, vasodilation in the brain causes pain. Anti-inflammatories can help to decrease or inhibit vasodilation.

I'm sorry Gleevec didn't work for you, did your doctors know you had ckit 816 before putting you on it? Gleevec (Glivic in Australia) was only approved for use in Systemic Mastocytosis last year in Australia & only for SM without D816V ckit mutation. From what I understand there are several different 816 mutations each with different letters. I asked my doctor about the ckit mutations about 6 months ago & he admitted that he didn't know anything about it. So I don't know if I have 816 or not. Last time I saw him he still acted like he didn't know what I was talking about. I'm seeing him next week & have printed out a pile of research articles to give him so he'll have no more excuses! From what I've read recently there seems to be a lot of research going on & trials of treatments designed to target specific ckit mutations, in one trial they had 100% remission so I'm optimistic that in time there may be a cure for SM.

Just curious, how old are you? How long have you had SM? Do you have skin lesions? I'm 39, I was suspected of having SM at the end of 1999 but that was at least 10 years after I first started having some symptoms. Things got drastically worse around 1997 & I was tested for hundreds of things, changed doctors a few times and finally an endocrinologist decided to test tryptase and histamine. I didn't have any skin lesions until about 2 years ago which I think hindered the diagnosis a bit. I now have quite a lot of Telangiectasia Macularis Erruptiva Perstans and some Urticaria Pigmentosa.

I'm sorry that I'm probably not much help for your headaches but would like to keep chatting (writing) if you do.

Cheers Bronwyn.