Godsgal Posted June 3, 2011 Report Share Posted June 3, 2011 Hello all, I had a really great visit with Dr. Lawrence Afrin in South Carolina. What an incredible mast cell specialist!!!! I would highly recommend him. He is great at corresponding with you via email and consults with your doctor as well. And to boot he had a 7 page synopsis for me of his thoughts, recommendations, meds to try, etc. within a day of seeing him emailed to me along with a letter stating full disability for me. What a doctor! I have since started singulair 10 mg twice a day and that has helped me tremendously. And he told me if I had a really bad reaction to something I could take up to 100 mg of benadryl every 2-3 hours. I'm only 100 pounds so I was floored when he told me that! I also can't believe the problems mast cells can cause....pots/dysautonomia, healing problems, being prone to infections, rotting teeth, cancer, etc. I was very pleased with him as a doctor and he emailed me a full 7 pages plus a letter for my disability case. He has an incredibly knowledgeable nurse as well....Kathy. She told me to give new mast cell meds a chance for a couple days because new meds aggravate the mast cells and they get stirred up for the first few days and after that they settle down. 1-2 weeks at least to see if a new med is working or not and they are only to be started low dose one at a time.And just to throw this in there, the mast cell specialists in Boston wouldn't help me at all over the phone or by email until they saw me in person first. Dr. Afrin was willing to work with my doctor on multiple occasions plus consult with me by email several times prior to me even coming there. There is not enough good said about this doctor and I want to spread the word. Are mast cell problems hereditary? Genetic transmission is rare BUT what is inherited is some unknown susceptibility factor. That unknown susceptibility factor is transmitted and that in concert with some exposure or trigger (surgery, medication, exposure to some environmental stimulus, car accident, etc.) results in the development of mutations of mast cells. It is not uncommon for mast cell activation syndrome to be hereditary.I know it's a bit wordy but it's nice to see the types of meds being used for the mast cell disorders---Medications recommended for mast cell disorders in his exact words:"She should immediately escalate antihistamine therapy from her current low-dose scheduled H1 blocker to high-dose scheduled H1 and H2 blockers (e.g., loratadine 10-20 mg bid, as tolerated, and famotidine 40-80 mg bid, as tolerated). If she tolerates another non-sedating H1 blocker better than loratadine, or another H2 blocker better than famotidine, that's fine, though loratadine and famotidine (relative to the other drugs in their classes) are thought to have the fewestinteractions with other drugs. Doxepin, too, can sometimes be helpful in controlling histaminic effects such as pruritus and headache(typically 25-50 mg bid-tid). Other pharmacologic considerations that may need to be entertained over time include NSAIDs (e.g., aspirin(relatively high dose (e.g., 650-1300 mg bid-qid), targeting a plasma salicylate level of 20-30 mg/dl, or as tolerated), or similarly high-dose ibuprofen (up to 3200 mg/d), naproxen, celecoxib (100-300 mg bid)), benzodiazepines (e.g., lorazepam (0.25-1 mg bid-qid), clonazepam,alprazolam), leukotriene antagonists (e.g., montelukast 10 mg bid), oralcromolyn (100-200 mg bid-qid), nebulized cromolyn (20 mg bid-qid), tyrosine kinase inhibitors (e.g., imatinib 100-400 mg/d, dasatinib 20-70 mg/d, nilotinib 100-200 mg bid), hydroxyurea, azathioprine,cyclosporine, mycophenolate, prednisone and other steroids, PEG-interferon, thalidomide, cladribine, cyclophosphamide, taxanes,daclizumab, or alemtuzumab. Omalizumab, too, has been demonstrated to have some utility in this disease regardless of whether the IgE level is elevated. mTOR inhibitors (e.g., sirolimus, everolimus) in theory might be beneficial, but one small study to date of everolimus showed no benefit. Also, given that activated KIT drives activation of the JAK/STAT pathway which is thought to drive many downstream effectsincluding assorted constitutional symptoms, the forthcoming JAK inhibitors may eventually prove to have some utility, too." Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted June 4, 2011 Report Share Posted June 4, 2011 Thanks for posting this, it's very useful for me. Wish I could consult with him in person too! Quote Link to comment Share on other sites More sharing options...
hilbiligrl Posted June 8, 2011 Report Share Posted June 8, 2011 This is amazing! Thanks so much for sharing.... as I will be printing this and taking to my doctor! He asked about this page and how i was getting my info.... so my doc hopefully will be visiting here and learning too. I am tickled to have read this post! thanks again!tennille Quote Link to comment Share on other sites More sharing options...
lieze Posted June 8, 2011 Report Share Posted June 8, 2011 Awesome!I just saw my doctor today and asked her if I could have it?I showed her my spots and told her I am reacting to things not even on my allergy list and I think many of my episodes relate directly to food reactions.She said it's all over her head.She said these were questions to ask my allergist and referred to it as getting into stuff you go to Mayo for....Actually...I'm not trying to get off track here but another adult chicken pox survivor told me he cannot function without his singulair.It just clicked for me when you mentioned that's what you were started on.This is all food for thought...And your skin biopsy is what got you into this doctor basically and your diagnosis.These weird moles I have developed almost scrape right off when you scratch them.I'm glad you are getting the help you need...keep us updated. Quote Link to comment Share on other sites More sharing options...
lieze Posted June 8, 2011 Report Share Posted June 8, 2011 Any dietary orders?Do you need to follow your histamine diet or can you resume normal eating? Quote Link to comment Share on other sites More sharing options...
Godsgal Posted June 9, 2011 Author Report Share Posted June 9, 2011 Lieze, He said there is no research to support this histamine free diet but I don't care. I can tell a BIG difference in myself so that's what I go by. I'm continuing the diet! Quote Link to comment Share on other sites More sharing options...
juliegee Posted June 9, 2011 Report Share Posted June 9, 2011 So happy for you, Jared . You desperately needed help & I'm glad that Dr. Afrin was able to provide it. I SUSPECTED you were under-medicated, that's how you were presenting, but you kept on insisting that the meds were causing the symptoms & maybe they were in the short term... How wonderful that Dr. Afrin could help you straighten it all out. Singulair is a wonder drug for me too. Love it! I hope to see Dr. Afrin later this year. Thanks for sharing your experience. Please keep us all posted on your progress. Julie Quote Link to comment Share on other sites More sharing options...
hilbiligrl Posted June 9, 2011 Report Share Posted June 9, 2011 To julie and others with the mcad and singulair:I took singulair once for a while, but when it first came out. I had some weird side effects with it and it seemed it wasn't helping with my 'unable to breathe' problem. Just curious.... what does it do with the MCAD? Like, i understand that my zantac and zyrtec are the H1 and H2 meds and if i dont take them, i start feeling worse.... when im taking them, i do better of course. Would love to hear what it does with MCAD, if you guys don't mind..... thanks a bunch!well wishestennille Quote Link to comment Share on other sites More sharing options...
Godsgal Posted June 11, 2011 Author Report Share Posted June 11, 2011 MCAD can cause so many mediators to be released in the body that cause problems.....what I learned from Dr. Afrin (mast cell specialist in South Carolina) is that there are hundreds of mediators that could be released by mast cells when they degranulate so it's hard to know what drug therapies will work. Mediators are histamine, prostaglandin, leukotriene. Singulair is an anti-leukotriene medication. So it would block that mediator IF that was one of the ones causing a person with mast cell disease trouble. Quote Link to comment Share on other sites More sharing options...
hilbiligrl Posted June 12, 2011 Report Share Posted June 12, 2011 awesome! Thanks for the info.... i am totally excited to print this out and take to my doc! thank you so much!tennille Quote Link to comment Share on other sites More sharing options...
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