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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Mast Cell Disorder Doctors >> DR AFRIN TO STOP TREATING MASTO PATIENTS? http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1374975004 Message started by meemshutchins on 07/27/13 at 14:30:04

Title: DR AFRIN TO STOP TREATING MASTO PATIENTS?
Post by meemshutchins on 07/27/13 at 14:30:04

Does anyone know what is going on with DR Afrin? I am a patient of his and I missed my last appt due to a work issue. I just called his office a couple days ago to get a prescription refill and was informed that DR Afrin will no longer be prescribing and treating mast cell patients. I was dumbfounded as I depend on this particular medication and was going to run out and the nurse said I was going to have to contact my GP and get my records sent over and see if they would prescribe for me based on Dr Afrin's notes. WHAT?!?! The nurse said something about Dr Afrin continuing to meet with patients if they wished but would no longer be "treating" them. Honestly, I was so stressed by this news that my brain fog shot through the roof and I can't remember her exact terminology.

The nurse seemed really flustered and said she didn't know what was going on and was not able to say why. I could hardly believe that all the mast cell people Dr Afrin was treating would be left high and dry to suffer a potential lapse in medication etc. I wouldn't even have known if I didn't call for my refill. Does anyone have any information or know what I am talking about? Thanks!!!

Title: Re: DR AFRIN TO STOP TREATING MASTO PATIENTS?
Post by DavinaRN on 07/27/13 at 19:06:20

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

Title: Re: DR AFRIN TO STOP TREATING MASTO PATIENTS?
Post by Futurehope on 08/03/13 at 11:11:08

You're scaring me as well. I had a return appointment with him the beginning of October. For the first time, I was called and told I was to reschedule, which I did.

Should I be calling over there on Monday to be sure he is still seeing patients? I need to fly to get there, and would appreciate knowing what is going on. It sounds like some ethical issue of not having the patient nearby and treatable by MUSC if anything happens because of one of his scripts? But, I really have no idea and I want to know what is going on as well.

Wow.

BTW, I have MCAS, not mastocytosis. What is your diagnosis?

Title: Re: DR AFRIN TO STOP TREATING MASTO PATIENTS?
Post by meemshutchins on 08/04/13 at 02:57:19

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!!!

Title: Re: DR AFRIN TO STOP TREATING MASTO PATIENTS?
Post by Futurehope on 08/05/13 at 01:50:12

Meemshutchins,

I put a call in today to the answering service. His nurse should reply to me.

Dr. Afrin is no longer accepting new patients. Hopefully, the person answering your call for a refill was mixed up. She might have misunderstood what Dr. Afrin told her, or she might have misunderstood that you were an existing patient?

I'll try to find out more after I receive a phone call. I'll let you know.

Title: Re: DR AFRIN TO STOP TREATING MASTO PATIENTS?
Post by meemshutchins on 08/05/13 at 02:09:20

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?

Title: Re: DR AFRIN TO STOP TREATING MASTO PATIENTS?
Post by Futurehope on 08/05/13 at 02:34:13

Okay, I just spoke with Kim who is a triage nurse substituting for Colleen. She said that Dr. Afrin is still seeing patients. She said there are certain medications that need to be refilled locally. She mentioned pain pills, narcotics, tranquilizers as fitting this category.

I then asked, "Do you mean that Dr. Afrin will not refill meds that have the potential for being habit-forming?" To which she replied, "Well, you could put it that way. There are certain meds that Dr. Afrin will not fill."

He will still refill antihistamines because I specifically asked that question.

Also, this is a new policy of his. That is why this was new to Meemshutchins. All for now.

Title: Re: DR AFRIN TO STOP TREATING MASTO PATIENTS?
Post by meemshutchins on 08/05/13 at 03:39:56

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.

Title: Re: DR AFRIN TO STOP TREATING MASTO PATIENTS?
Post by Futurehope on 08/05/13 at 04:38:09

Meemshutchins,

Yes, I had been given a script for Ativan a while ago because that was one of the pills that gave me the most relief from my symptoms. It is a benzodiazepine with a shorter half life than Klonopin. It can be considered a tranquilizer, and when I mentioned "tranquilizers" to Kim, I was referring to bezodiazepines such as Klonopin and Ativan.

I had decided against going that route (of using them) even though they are great, because after about 2 weeks, they stopped being a good sleeping agent as my body adjusted, and I would need more and more of the medication to keep from getting "nervous". I know this from prior personal experience, so I had never really begun taking them again in earnest.

It does make sense that Dr. Afrin would prefer local doctors to prescribe those types of meds. It is too bad you had to find out the hard way.

Title: Re: DR AFRIN TO STOP TREATING MASTO PATIENTS?
Post by Lisa on 08/11/13 at 15:39:36

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

Title: Re: DR AFRIN TO STOP TREATING MASTO PATIENTS?
Post by meemshutchins on 08/12/13 at 05:31:35

Lisa,

Thank you so much for this extremely helpful information. I hope I wasn't scaring people with rumors! I don't have a GP who recognizes MCAS so it is pretty frightening for me in terms of receiving help with finding a medication protocol that works for me. Even the immunologist/allergist who is my local go to (although I don't really go to him) says he is "on the fence" about acknowledging MCAS as a diagnosis. It looks like I will have to start over from ground zero if I hope to be able to try different medication protocols. Consultations don't help me very much if I can't find a way to follow the advice given to me. Thanks again for forwarding his perspective!

Title: Re: DR AFRIN TO STOP TREATING MASTO PATIENTS?
Post by larken on 08/12/13 at 05:39:12

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

Title: Re: DR AFRIN TO STOP TREATING MASTO PATIENTS?
Post by DavinaRN on 08/17/13 at 12:49:47

Saw Dr Afrin yesterday. My urine pgd2 is almost twice the normal and serum histamine is 50% higher than normal. So I now have a formal diagnosis of MCAS that meets all the proposed criteria. I was be seeing him every 8 weeks in addition to local immunologist until I'm as controlled as possible then we will do every 6 months. First he split my Zantac to an every 12 dose hoping it might help with breakfast. In four weeks we will try to remove an am Allegra (never tried just one). He is going to follow my RBCs as they fluctuate from normal to high (negative for polycythemia Vera). He mentioned gleevac may come into play in the future, but lots of stuff to try first. He explained that there is no cure, goal is more good days than bad. :)