Dr. Afrin had responded to my question regarding how we can tell if our MCAS is primary or secondary. He said it would take DNA sequencing and this procedure is not yet available. He did go on to say that Dr. Moulderings believes most patients have primary MCAS. Since then, I saw Dr. Castells and she says it's 50-50...From my experience with her and speaking to other patients of hers, it seems she often implies that it is secondary to something else, but it may be difficult to know to what....Has anyone gotten help from Dr. Castells or anyone else on sorting out if your MCAS is primary or secondary? I have alot of GI issues (ileitis/colitis on biopsy with no symptoms) and cysts in my pancreas, intermittant anemia,etc. I have elevated PG F2 which I know could also be a neuroendocrine maker, or marker of other issues, as several of the mast cell markers are. I will see her in a few weeks and try to get more direction in what to do to figure this out, but so far she has just said I do meet criteria for MCAS and to get follow up MRIs in the future. I am very frustrated. She also told me to take baby aspirin but I'm not sure I can tolerate it. While we know part of the MCAS criteria is a response to the meds., this too is not so black and white since I'm told there are many different meds that can be tried and the right combination must be sorted out. Zantac helps me; H1s make my face sting...I have just started Ketotifen, so this can be a lenghty process. So, are others out there struggling with feeling better even on meds, and do others have a clear sense of whether their MCAS is primary or secondary, and if secondary...secondary to what????
Thanks and determined to get to the bottom of all this. At least I have the MCAS diagosis now! Debbie

I think aspirin is used to reduce prostaglandins.

I am still getting my mind around the classification too, it takes time and reading and rereading, for me at least. If you are into reading journal articles written for the medical community this one explains  it. It comes from a collection of some of the top specialists such as drs Castells, Akin and Escribano, amongst others

http://www.karger.com/Article/Pdf/328760


My understanding is that a syndrome refers to a pattern of symptoms. The disorder refers to the underlying cause of that collection of symptoms. Sometimes a syndrome is identified, a common pattern of symptoms seen repeatedly in patients, without necessarily having a definitive medical explanation of what is causing that syndrome, such as chronic fatigue syndrome. The syndrome can be identified without actually being clear of the mechanism leading to that pattern of symptoms, it has been seen and documented often enough that some doctors will be confident to identify it. Other doctors are reluctant to do this without a clear and definitive medical explanation for it.

So you can have the symptoms that indicate activation of mast cells from primary conditions such as classic allergies. The MCAS is secondary to a primary condition of atopy.  You can have a mutation to your mast cells which also leads to the same collection of symptoms, the fundamental cause is the mast cell itself, and therefore it is a primary mast cell disorder. Does that make sense?

And then there are the people who clearly show the syndrome, but no explanation can be found as to a primary cause, either a disorder of the mast cells or of anything else, so these are left with Idiopathic (meaning no known cause) MCAS. They have the symptoms of the syndrome, nothing to show it as secondary to something else, but also no identifiable mast cell disorder.

Someone please correct me if its not quite right or not clear enough, I am still getting this clear in my head. The article has a couple of diagrams and tables that set some of this out, even if you don't want to wade through all the text. It does list some of the other types of conditions that can present as the syndrome but are the primary diagnosis.

So my son has had enough of the symptoms overs the years to say that he is showing the syndrome. He has probably not had enough tests done yet to be clear as to whether this is a primary disorder of his mast cells, or if there is another explanation for these symptoms. At least we have looked for a lot of the other likely causes like classic allergies, but found nothing else. He responds well to medications, so for now we consider he has MCAS, and I am still looking into what other tests we can have done to see if we can confirm a mast cell disorder. Some people, like our current doctor, aren't convinced we need to make the distinction. Treating his symptoms seems to have helped, and doctors keep suggesting he  may be growing out of it. Personally I would like to know if this is a primary Mast cell disorder, because if the syndrome is secondary to something else then maybe he will grow out of it or it will resolve in time. If this is a primary disorder then I expect he takes that defect of his mast cells into adulthood with him, whether or not the syndrome is clearly showing  itself. The potential will always be there for it to recur and he needs to be mindful of that when making decisions about his health and lifestyle.

Ruth

deblevstern wrote on 02/10/13 at 13:14:14:


I am always struggling to feel better on meds, and I do not know if my MCAS is primary or secondary, though Dr. Afrin did say something to me about it being a genetic mutation, I think.

It is very difficult for me to realize that the best I was feeling was when I was on the drug regimen I was on when I first saw Dr. Afrin.  Since then, I am noticing I have uncomfortable side effects to many drugs.  So, I am left with symptoms if I don't take them, and symptoms if I do.  I must be reacting to ingredients.  I find it depressing that there is no easy answers after all this time. It has been a year since I first saw Dr. Afrin and I am no better  It is a daily struggle for me....symptoms from meds vs. symptoms from MCAS

In the back of my mind I am suspecting that in my case, my age is a factor in how my body reacts to meds.  I am 61 years old, and I know that the older one is, the more sensitive one can become to drug side effects. That is certainly the case for me which is leaving me in a bad place.

Futurehope,
I am 54 with the same medicine predicament. I too am very sensitive to medication...so yes..a rock and a hard place! I have severe migraines as well and can not longer tolerate the pain medicines that helped. I am just starting ketotifen,,,slowly...we will see..
Hang in there, research is being done every day! Just when I have a better day the next one might be horrible. Confusing. I will share anything that helps when I find it. I think my mast cell problem may be secondary. I have one question? What markers gave you the diagnosis from Dr. Castells. I have an elevated tryptase..but never had a symptom free period to compare it to. (13, 12, 15, 18 ) Did she have a baseline and flare level to compare??

I see Dr Wedner at Washington University in St Louis. He has me taking a full aspirin, provided that my body tolorates it well. That is both from a stomach perspective as well as any other adverse rxn. His theory/opinion is that it stabilizes the mast cell membrane to control/reduce degranulation.

Once again, I realize aspirin is a trigger for lots of folks, but as always, our masto symptoms, triggers and reactions seem to be as unique as each of us are.