Therussianmoose Posted September 28, 2016 Report Share Posted September 28, 2016 So I'm going in for a bone marrow biopsy next Thursday for suspected Mastocytosis, and of course in very nervous. To pass the time I had a couple of questions that maybe some of you could share your experiences with: Why do they have to get tryptase from the bone marrow? The tryptase in my urine was elevated, but not too high, so I'm wondering if that will be a good indication that I don't have Mastocytosis? And I was wondering if others could share their experiences about having discontinue histamines, Benadryl and Alegra, before? Thank you so much for taking the time to read my post! Quote Link to comment Share on other sites More sharing options...
Katybug Posted September 28, 2016 Report Share Posted September 28, 2016 (edited) Hi! Sorry you are having to have a bone marrow biopsy but hopefully it gives you some information regarding your diagnosis. Here is a link that explains the diagnosis and treatment of Mastocytosis. http://tmsforacure.org/patients/mastocytosis_explained_2.php If you take note under the sections "Major Criterion" and "Minor Criterion" it explains what they are looking for in the bone marrow biopsy: either an abnormally large aggregation of mast cells, or, mast cells that are misshapen or showing other abnormalities (that is paraphrased.) They are not actually testing tryptase levels. I encourage you to speak to the doctor that ordered the biopsy or the one performing the biopsy at least a week ahead of time to verify which medications, if any, you need to stop and how many days prior to the procedure. Hope all goes well. Katie Edited September 28, 2016 by Katybug Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted September 28, 2016 Report Share Posted September 28, 2016 My daughter had a bone marrow biopsy a couple of years ago, she was 17 at the time. She had a couple of elevated Tryptase levels, one 17, one 13. Plasma histamine levels at the time were high also. I can't remember if she had to stop her allergy meds at the time, you might want to double check with the doctor on that one. My daughter's results were no mast cells were found in her bone marrow, which was good. They did find that she didn't have any stored iron, though. Still working on that one. I hope it goes well for you. I insisted that my daughter be somewhat sedated and it went very smoothly. She agrees it was one of the less painful tests she's had, because of the sedation. It was concluded that she did not have mastocytosis, but very active mast cells. Still active, but they are being treated with h1 and h2 blockers. Katie is an expert in all things mast cell, so would encourage you to check out her article, she's a wealth of information! One thing I thought of was that my daughter said that the place where they went in to get the bone marrow was a bit sore for quite some time. She said you wouldn't want to be doing any heavy work for a couple days after. I hope all goes well. Best wishes to you! Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted September 28, 2016 Report Share Posted September 28, 2016 Hi, Therussianmoose, wanted to welcome you to the forum! Glad that Katie and DG have posted such helpful info. Wishing you luck during your biopsy. Quote Link to comment Share on other sites More sharing options...
angelloz Posted September 28, 2016 Report Share Posted September 28, 2016 I too have elevated tryptase levels but my bone marrow biopsy was negative. I have not been able to tolerate H1 and H2 blockers as nearly all medications make me feel worse. I even tried a compounding pharmacy to take out ingredients that might cause issues. Still wondering if I should recheck as it was several years ago. I wasn't sedated but didn't find it too bad actually. Good luck with everything!! Quote Link to comment Share on other sites More sharing options...
Therussianmoose Posted September 29, 2016 Author Report Share Posted September 29, 2016 Katy, thank you so much for all the information! That website has been very helpful, so thank you! Dizzygirls, I do hope you are able to figure out what is going on with your daughter! Best of luck! Thank you! Sarah, thank you! Angelloz, thank you! I'm so sorry that the H1/H2 inhibitors don't work for you! When you had your bone marrow biopsy the first time did they check to see if you had that mutation that makes it so you can't tolerate the h1/h2 inhibitors? Maybe that is why you can't tolerate them? I hope you'll be able to figure out what is going on! Quote Link to comment Share on other sites More sharing options...
angelloz Posted September 30, 2016 Report Share Posted September 30, 2016 Therussianmoose, I was not checked for that mutation. I will absolutely look into it. Thank you for the tip! Quote Link to comment Share on other sites More sharing options...
Therussianmoose Posted October 1, 2016 Author Report Share Posted October 1, 2016 Angelloz, good luck! Quote Link to comment Share on other sites More sharing options...
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