Hi gang,

I see Dr. Castells at the end of next week to review some blood and urine tests she wanted (re)done so we can figure out 'what next' (this will be appt #2 with her). I asked for some preliminary results to be sent to me and it looks like i have elevated prostaglandin's (but normal tryptase and n-methylhistamine), which may mean they are going to suggest some aspirin therapy. I didn't get any info on the genetic mutations yet and i've not had a bone marrow biopsy.

Do any of you have elevated beta-prostaglandins? If so, has the aspirin therapy helped? Also, have any of you had this in absence of high tryptase and/or methylhistamine? I'm trying to understand what it means and if it will suggest i don't need to be on all the other antihistamines etc. I'm still flushing a great deal and feeling so sick (and on top of the 'daily' sick feeling i now have the flu)....I am so tired of all this.....

I hope all of YOU are doing ok! brita

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Yes, this is my same situation right now, so I will be very interested in hearing everything you learn, since I can't go to see Dr. Castells.

I am very hesitant to volunteer for "aspirin desensitization" -- maybe you won't have that hurdle.

The biggest thing *I* need to know, if you happen to find out:  Would getting on aspirin help with lowing other drug reactions?

If not, I would have a lesser incentive to go through the difficult aspirin issues.  If so, it could be worth it.

Please let us know what you find out.

I still fairly expect I'll show raised Tryptase and Histimines one day, just not on the tests I had last week.

Looking forward to all answers!

I have elevated protaglandins (1450).  I have ISM with tryptase of around 17-20, no elevated N-methylhistamine, postive bone marrow biopsy, no cKit mutation.

I take 81 mg aspirin, Loratidine and a little gastrocrom.

I think the aspirin sort of calmed things down a bit for me.  Cut out on the dehydration issues, less frequent urination.  Feel more hydrated, less itchy and rashy.

Let me know what you find out too, I'd be interested to hear. TX

I think I am sensitive to aspirin because I flushed ever day I took it before. I also think I have high prostaglandins--and wasnt worried about it before but am wondering now... I raised my antihistamine level back to what I was taking and yes the list seems too long--but Im doing better on it.. and stopped flushing like I was. My lymphs remain swollen but less painful on the prednisone.. My big problem now is my legs and feet are swelling,. one more than the other. Ive seen a few people say they did the same when their prostaglandin levels were high, so Im ondering if I should tr aspirin again. Right now Im on 40 of lasix and 20 meq potassium for it..Id rather not if something else would help it.

Im down to 30 mg prednisone with one more week to taper off. Pain level is still there but better, more controllable on it.

U saw m Hematologist yesterday and here we go again with one step forward 2 back.. He had another asst Dr assess me, who first declared himself a specialist in diabeties and only wanted to talk about that with me.. I finally said, "That is under control, I handle it well, thats not why Im here today."  Then he started ALL over again, with "Why do you think you have Mastocytosis?".. I admit I got a bit testy and said, "If you can cure me, please do,, I have enough hobbies without adding being sick to it." Then I asked him, "OK you tell me, what other disease has elevated Tryptases, Idiopathic Anaphylaxis,, 12 times in a 14 month time period, reacts to antihistamines and has this rash and the other symptoms?" He says, "I dont know."...

Then he starts asking me what I mean by anaphylaxis and I started thinking of Sandi head butting the Dr, LOL.. I told him in no uncertain terms that their are many types and the new criteria for anaphylaxis was just determined by the WHO and will be released as soon as the Drs involved publish their work on it. He finally shut up LOL..

Then my Hematologist entered the room and we talked about me not liking the results of the skin biopsies (no mast cells found) so I want a 2nd lab to reprocess them.. I have my own tissues in my fridge right now LOL...He said our next step is a BMB and I told him NIH wants it done there.. he ordered a bunch of labwork, didnt say what, just "genetic testing" which is fine with me, I was exhausted by then. I cant wait to see what he ordered and what comes of it..

I got a phone call from NIH today and was half asleep. I think we decided I would drop off  the biopsies at another lab (or wait til the study Dr is back from some kind of leave).... and they needed a few things more faxed to them to make my appt date... I guess I'll find out soon one way or the other...