Mast Cell Disorders Forum

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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Mast Cell Disorder Doctors >> Dr. Afrin http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1301782838 Message started by Sarah4 on 04/02/11 at 11:20:38

Title: Dr. Afrin
Post by Sarah4 on 04/02/11 at 11:20:38

I am trying to be patient with the medical situation up here in Canada, but last week had a really distressing anaphyactoid event which always derails my patience.

I have been thinking about trying to get in to see Dr. Castells, but somebody told me Dr. Lawrence Afrin in Charleston would be as good or even better to see. Has anybody got him as their doctor or does anyone know about him?

Title: Re: Dr. Afrin
Post by Starflower on 04/02/11 at 12:42:21

Dr. AKIN at Brigham & Women's in Boston would be just as good as Dr. Castells. Personally, I wouldn't fly to another country to see Dr. Afrin... I wouldn't even fly to another state.

Heather

Title: Re: Dr. Afrin
Post by juliegee on 04/25/11 at 12:38:29

Hi All-

I, too, am interested in Dr. Afrin. I am DXed with MCAS via Dr. Castells, but live in GA. I saw Dr. Afrin's latest research published this month in The Journal of Hematology and Oncology, entitled "Mast Cell Activation Disease: A Concise Practical Guide for Diagnostic Work-up and Therapeutic Options"

I was very impressed. As many of you well know, it is very hard to find a physician that is knowledgeable about MCAS, much less one in the Southeastern US.

Lisa must know something to so definitively dismiss Dr. Afrin. Please share. Also, if anyone has seen Dr. Afrin; I'd love to hear your impression.

Gratefully-

Julie

Title: Re: Dr. Afrin
Post by ruth on 04/25/11 at 13:15:06

Thanks Julie, looks like a great article. I am still going through it.

Here is any early paragraph :

Mast cell activation disease in general has long been thought to be rare. However, although SM and MCL as defined by the WHO criteria are truly rare, recent findings suggest MCAS is a fairly common disorder. Evidence has been presented for a causal involvement of pathologically active mast cells not only in the pathogenesis of SM and MCAS but also in the etiology of idiopathic anaphylaxis [16-18], interstitial cystitis [19], some subsets of fibromyalgia [20,21] and some subsets of irritable bowel syndrome

Here is the link to the full article :

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069946/?tool=pubmed

Title: Re: Dr. Afrin
Post by juliegee on 04/25/11 at 13:58:26

Thank you, Ruth! I also posted the entire article under the "New Mast Cell Research Category." But, it makes perfect sense here too ;D

Title: Re: Dr. Afrin
Post by ruth on 04/25/11 at 14:03:24

That's great, I was about to do the same, as some people might not look in this folder as it isn't relevant for a lot of us. Also brings to attention some other doctors in Europe working in this area. Good to have the pdf posted too. Thanks again,

Ruth

Title: Re: Dr. Afrin
Post by In2butterflyz on 04/25/11 at 14:13:32

Thanks for posting this article!! :)

Tracey

Title: Re: Dr. Afrin
Post by Lisa on 04/25/11 at 16:36:00

Sarah and Julie,

I didn't see your reply Julie to Sarah regarding my comment as to Dr. Afrin. I want to clarify something here. As to Dr. Afrin, he's really not a well known masto specialist. I can't say anything negative against him and after reading the article that he and Dr. Molderings put out, I must agree it's a great article, one I've sent to my doctors already!!

What I want to clarify is this. Dr. Afrin is not considered one of the major authorities on mastocytosis, neither is Dr. Molderings. Both of these doctors are of the up and coming generation of newer researchers. I've had a chance to speak with Dr. Molderings a couple of times, but not so with Dr. Afrin, but the fact that the two of them and a few more colleagues worked together on this article says a lot as to who they are. I believe that both of these men attended the WHO conference on MCAD last year in September 2010, however, I do not believe that either one of them was in on the consensus meeting itself in the drawing up of the official WHO parameters for the MCAD diagnostic proposal. If they were, it makes no sense that they would set up their own diagnostic proposal otherwise. Usually, those who are part of that WHO consensus have their names on the official article which is the fruit of their meetings. So this would only seem to indicate to me that these lesser level doctors, wanting to get their names more well known amongst colleagues and patients would try to put out a report which is along the same lines as the official one to be published shortly.

Now, I do know that Dr. Molderings is a very strong proponent for the MCAD diagnosis. He has published several articles and commentaries in favor of MCAD for the past several years, however, I had not really heard of Dr. Afrin's name really before this. This seems to me that he's an up and coming name in masto research and that this was a golden opportunity for these doctors to get their names associated with this at a good time before the official document comes out. Remember, this is how doctors who are wanting to be known as specialists and authorities in a specific disease become known - through their research and the publishing of articles of expertise. So this is not unusual nor considered negative behavior. But again, this article is not the official WHO Consensus article that is coming out with the names of Castells, Escribano, Akin, Schwartz, Valent, Sperr, Metcalfe, etc on it. If Molderings, Brettner, Homann and Afrin end up on the official publication I will be very surprised indeed.

Now as to going to see Afrin, ladies, again, I'd say this... If you had the choice to see the high authority and a lesser authority, which of the two would you choose? If you are going to travel a distance, spend money for doctors, travel and hotel, etc. who are you going to spend it on? My money is going to go for the very best and if you have a choice between Castells/Akin versus Afrin, who do you honestly think is going to win?!!! Boston over Charlston, SC any day, my friends!!

It's not a hard choice I think!

So, again, it's not because I think that there's a reason for NOT seeing Afrin, but that there's so much more in seeing Dr. Castells!!!

Lisa

Title: Re: Dr. Afrin
Post by juliegee on 04/26/11 at 04:12:19

Thank you for all of that great information, Lisa- very informative! I see that Dr. Afrin is perceived within the mast cell disorder community as an upstart. I have to giggle a bit as Dr. Castells was considered an upstart as well when I saw her- about 5 years ago. Additionally. the criteria that Dr. Afrin has proposed for MCAS/D is the same that Dr. Castells employed during my visit.

Help me understand the difference between the diagnostic criteria that Dr. Afrin has suggested vs. that of the WHO group. Do the WHO docs require a laboratory marker to acknowledge MCAS/D whereas Dr. Afrin will accept a "unique constellation of symptoms caused by mast cell activation" as one of his major criteria? This all gets so detailed and complicated & I would appreciate your take on it.

I still contend that Dr. Afrin would be a great resource to those of us in the Southeast. As an oncologist/hematologist with an expressed interest in mast cell disorders AND an understanding of the elusive MCAS/D...he seems uniquely poised to help all spectrums of mast cell disorders.

Thanks again for your help-

Julie

Title: Re: Dr. Afrin
Post by Lisa on 04/26/11 at 10:53:21

Julie,

The WHO consensus article hasn't been published yet! We have no way to compare the notes of this article versus that one yet!! I have a feeling that they're close, but I'm sure that the WHO criteria is going to be a bit pickier since it's the "OFFICIAL" document! It should be coming out any time now and it will probably spread like wildfire when it does. We'll all likely be examing it with fine toothed combs and I'm sure that this will be a hot topic for some time to come yet!!

So, as to Dr. Afrin, I agree with you, he probably is the very best choice for anyone who can't get to Richmond Virginia!! Remember, you've got Dr. Castell's teacher in Richmond, Dr. Lawrence Schwartz!! He's one of the WHO consensus authorities and so as much as Dr. Castells is praised by the TMS patients, Dr. Schwartz is often overlooked only because he's not as involved in the TMS conferences! Yet, he's the doctor who discovered the tryptase exam and he's also been a major proponent along with Castells as to the MCAD diagnosis.

You know, many of us dont' know this but it's been Castells and Schwartz who are really the heroes for those of us with the MCAD diagnosis!! Those who are of the "neoplasm/clonal" camp were totally against is with Metcalfe being one of the major heavyweights against it!! Yet Castells is who shouted loudest with Schwartz right there with her and Escribano was behind them along with Akin and then you have some of these lighterweights like Molderings and Afrin who have also been pushing the MCAD diagnosis.

We MCAD patients really owe a lot to these researchers for if they weren't convinced of our illnesses even though they've not had much to prove their convictions upon, they have gone to the mattresses with the heavyweights who were adamant that the only "true" mast cell disorder was that of SM!! Their open minded convictions have benefitted a large number of us patients!!!

Lisa

Title: Re: Dr. Afrin
Post by juliegee on 04/26/11 at 12:08:06

Hey Lisa-

I know the official WHO document isn't out, but I was surmising that Dr. Akin's recent article on MCAS/D criteria might give us a hint. Based on that, can you tell what the big difference between Dr. Afrin's criteria & his?

Thank you so much for informing me about Dr. Schwartz. I know NOTHING about him and love to hear of another MCAS/D advocate!!! I will do my homework to learn more.

Gratefully-

Julie

Title: Re: Dr. Afrin
Post by Lisa on 04/26/11 at 12:58:01

Hey Julie, you've got me out there wondering if I've missed something lately....what article is this that you're talking about as to Dr. Akin and an MCAD/S criteria? Is that the diagnostic proposal that came out before the conference last year? If that's the one then yes, there are some major differences! This article of Molderings and Afrin's is very specific and details the exams and the results and various criteria. It details the issues whereas the Akin/Valent document gave guidelines. I think that the two documents had very different purposes in that the one was raising discussion topics and exactly that - guidelines. Whereas this other one, Moldering's was meant to be like a preliminary official diagnostic proposal and being with that goal in mind, they are going to give more details and instructions for it's meant for lesser doctors to know how to do it.

Yet, both of these documents are GOLD for us patients and our lesser doctors for this helps them to gain real understanding!! I sent a copy of this Molderings document to a doctor in Spain who is a researcher in mast cells but doesn't understand mastocytosis and he was very pleased to get it!! It helped him to gain more understanding of how widespread this disease can be in that it's not being limited ONLY to the clonal form, it indicates that the activity of the mast cell when it's not performing correctly can be a much larger patient group than originally believed and this is important to these other doctors. I'm also sending this to not only my own doctors but also to any other Brazilian doctor who has any kind of interest in mastocytosis that I've spoken with for in my sending out this new form information, it means that other patients who don't fit into the SM category may not be overlooked the next time!!!

In fact, I was speaking to a hematologist today that I'm going to be seeing. If I had seen him 3 years ago when we had started our hunt he'd have done the typical SM criteria and I'd have been booted out his door when I wouldnt' have fulfilled the criteria!!! He's a colleague of Dr. Akin and I've not gone to him cause I couldn't afford him! I have to pay over $500 dollars to see this man and that's just for a consultation! OUCH! So if I had seen him 3 years ago, and he gave me his opinion, because he came with such high approval, we'd have totally discarded masto and I'd have been running around in circles ever since wondering what it was that I have!! Yet, this doctor has been accepting from me all of these new articles and new forms, including those from Akin, and today, this doctor has a much more wider understanding of the different forms of masto! He wouldn't be booting me out his door today if I were hunting still for the disease!!

So, my friends, take these articles we get and SEND them to you various doctors!! These articles are very EDUCATIONAL and we patients can help to pave the way for those who have yet to be diagnosed!!

PAY IT FORWARD!!!! :)

Title: Re: Dr. Afrin
Post by Starflower on 04/26/11 at 15:48:14

I think the article Julie is talking about is the one that Akin, Valent, and Metcalfe published earlier this year... I circulated a proof a few months ago. Remember that? That article is actually about "Mast Cell Activation Syndrome," which is a very specific diagnosis... to get it, you would need to have mast cell activation symptoms plus at least one elevated mediator during flares (tryptase, methylhistamine, prostaglandins, etc...), but rule out all the other recognized mast cell disorders (SM, TMEP, IA, idiopathic angioedema, autoimmune chronic urticaria, etc...). Anyway... here's a link to the abstract to refresh your memory :)

http://www.ncbi.nlm.nih.gov/pubmed/21035176

Heather

Title: Re: Dr. Afrin
Post by juliegee on 04/27/11 at 01:53:04

Thanks for that clarification, Heather. THAT is the article that I was speaking about ::) From what I can tell, the major difference between the two sets of criteria/guidelines is that the Moldering/Afrin group WILL make the MCAS/D DX w/o laboratory evidence as long as there is a "unique constellation of symptoms caused by mast cell activation" as well as meeting other minor criteria. Is that how you are reading it as well?

Anyone know when the WHO criteria for MCAS/D will be published?

Thanks!

Julie

Title: Re: Dr. Afrin
Post by Starflower on 04/27/11 at 07:18:27

I'll have to take a closer look at the two articles (maybe next week) to comment on the specific similarities/differences between them. The larger problem I see is that Moldering's article describes "Mast Cell Activation Disease" as an umbrella term for all mast cell disorders (SM being one type of MCAD). Akin's article uses the term "Mast Cell Activation Syndrome" for a very specific diagnosis that can only be made after ruling out many, MANY other things. It also makes a disctincition between "primary disorders of mast cell activation" (neoplasms like SM, UP, etc...) and "secondary disorders of mast cell activation" (which includes IA, food allergies, chronic urticaria, HAE, etc...). It does not use the term Mast Cell Activation Disease. This distinction will probably be lost on 99% of clinical doctors... but "disease," "disorder," and "syndrome" have somewhat different meanings. Some of the mast cell researchers want to be as inclusive as possible. Some don't!!

Heather

Title: Re: Dr. Afrin
Post by juliegee on 04/27/11 at 08:21:31

Gotcha! Whoa- huge difference in semantics there. SM, etc. does fall under a category Molderings calls MCAD. Weird. I haven't seen that categorization before.

However, Moldering's article also address MCAS specifically and his requirements for that diagnosis. THAT is what I was comparing to Akin's.

Julie