Not sure, I just had my first appointment with him 6/28.  He said without lab work correlation all he could recommend at this time was H1 and H2 (which I'm on), although he did mention gleevac may be something we consider in future

I also have MCAS as well. From what I could understand, he is still "willing" to see patients but he will not prescribe for them anymore, which in my mind, is not worth the visit as I have to travel to see him as well.
I'm still in shock as I am dependent on my medications and the fact that I wasn't even notified that my prescriptions wouldn't be refilled until I called to have them refilled which meant I was almost out of medication. I can't believe he would just leave me swinging in the breeze like that. When I asked what I was supposed to do, the nurse said I should call my GP and get my meds through him. However, I didn't need to tell her that my GP doesn't know MCAS from Adam and does not feel comfortable prescribing for a diagnosis that is still "controversial" and many DRs refuse to recognize even if they are allergists or immunologists. Therefore, it was pointless even going through these details as I knew that she was well aware of all these issues but still gave me the brush off. As I said, she sounded frazzled and short tempered as I'm sure I was not the first baffled, frightened person she had talked to.
 So, In answer to you question, YES! I would call and try to find out the details before you go. I don't know if a consult with no ability to get medications works for you (Especially for the price of the visit!!!) but it doesn't for me.
 If you would, please let me know what happens when you call. Maybe the info will be better. Good Luck!!!

Thanks Futurehope! I hope you are right. I'm sure you won't forget but do ask about whether he will actually prescribe for you. That seems to be the crux of the issue. Will you still go if he just consults with you but doesn't offer medication options?

Thanks for the info. I wasn't taking pain pills or tranquilizers but I am taking klonopin which is a benzodiazepine and one that he insisted upon as it gave me the greatest relief from symptoms. It's funny because he was always trying to get me to take more of these than I was comfortable with. I guess I can understand why that might be the case if he feels uncomfortable prescribing controlled substances but at the very least he should call or email the patients to let them know without just dropping the ball and letting them run out of a prescription for a medication that he originally put them on. Good luck with your appt. I would be interested to keep in touch to hear how your MCASis being treated and how it is working for you.

When I saw this thread I decided to write to Dr. Afrin himself - I hate gossip and prefer to  go straight to the source.   Dr. Afrin asked me to post this for him so that his patients are not alarmed.  As to "why" I did not wish to intrude nor did I feel it necessary for him to explain why he has had to change his situation as to working with patients.  So, I will let Dr. Afrin himself state what his position is so that any doubts can be resolved.    If you are a patient of Dr. Afrin I would suggest that you write to him if you are concerned about your situation with him as your doctor.  

I hope this helps.

Lisa



"​ the bottom line is, as you have heard correctly, that I presently am not accepting new referrals, though I am continuing to see the new patients who had booked with me before this change of a few weeks ago.  Also, very importantly, the rumor I heard this past week that I am no longer seeing even my follow-up patients is completely false.  I'm continuing to see *all* of my follow-up patients (at least, those who wish to continue seeing me), though you are correct that I am transferring responsibility for prescribing my patients' "routine medications" to their primary physicians, allowing me to transition to more of a "consultative" role than the front-line prescriber of all of my patients' medications.

I fully expect this situation will be resolved at some point and I will once again accept new referrals and resume more comprehensive care for my patients.  At this time I cannot confidently estimate when such resumption of more comprehensive service for new and follow-up patients will take place, but work is in progress to resolve this situation.

I also remain fully available to advise others (especially physicians) who are seeking guidance in how to evaluate and treat for mast cell disorders.  Colleagues always have been, and always will be, especially welcome to e-mail or call me anytime, for the obvious reason that the help I can provide a colleague often will (eventually) be amplified many-fold in ​terms of the number of patients who will be helped.  Of course, if a patient I have not seen before e-mails me, well, you can understand why I cannot make any patient-specific recommendations for a patient I cannot personally evaluate and instead can only speak in generalities.  This has always been the case and always will be the case.

Please know -- and you are welcome to "put out there" on the Internet -- that (1) these recent changes have *nothing* to do with my unswerving great interest in this area, (2) I remain 100% committed to pursuing the best clinical care and research and education in this area that I can, and (3) the present situation will be resolved, but everyone must be patient.  I greatly appreciate your, and everyone else's, understanding and support.

-- LBA"   Dr. Lawrence B. Afrin

Thank you very much, Lisa!  As someone who has MCAS and was considering trying to schedule an appointment with Dr Afrin in the future, I found this information really helpful.  His situation makes perfect sense and I appreciate his and your time in relaying it.  

Larken