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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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So you didn't do any particular therapies? You just slowly recovered with time?I would say that I am also in remission. I only take one Zyrtec at night now and have no food restrictions to speak of.
There wasn’t any one specific treatment I could say helped me the most though. I also did IgG replacement with Hizentra but the worst of the reactions were over by then anyway.
Mostly I think we just manage the symptoms the best we can until it goes into remission.
I think @Gingergrrl is in long-term remission for a while with IVIG and (more recently) Rituximab. The trigger as I remember was toxic mold exposure.
It seems like it can have many triggers; infection, toxins, trauma, food etc..
Has anyone had success in healing this by treating underlying factors? It seems as though there is always a trigger and that MCAS doesn't just form on its own
I did lots of treatments, but yes, the worst of the MCAS for me was in 2007-2009. I fully crashed in late 2009 but the MCAS reactions were milder at that point than the other MECFS symptoms, long before I’d had any of the thousands of treatments I eventually tried.So you didn't do any particular therapies? You just slowly recovered with time?
@Gingergrrl would you be willing to share who your doctor is?
I will send you a PM.
@Gingergrrl could you Pm me your doc also? If you didn't mind sharing? Thank you.
Ema, If there was a "super like" I would put that on your post.I would say that I am also in remission. I only take one Zyrtec at night now and have no food restrictions to speak of.
There wasn’t any one specific treatment I could say helped me the most though. I also did IgG replacement with Hizentra but the worst of the reactions were over by then anyway.
Mostly I think we just manage the symptoms the best we can until it goes into remission.
My MCAS is much improved through working on mast cell drivers, autoimmune dose IVIG and Rituximab.Just bumping this thread, wondering if there are any more MCAS patients who have recovered?
@Gingergrrl your post about IVIG was especially interesting. I just had a consultation with my MCAS doctor yesterday but his focus is just treating MCAS with mediators (like antihistamines, ketotifen, sodium cromolyn), I've not heard IVIG mentioned before. Were you on these mediators too? And did the MCAS give you ME/CFS, and are you in remission for that now too?
There are several health problems that tend to increase mast cell degranulation / mast cell activation.What do you mean by "working on mast cell drivers"? Is this with mediators like histamine? Do you mind me asking which medications worked if any?
Yes.Also did the treatments you mentioned help with CFS too?
I'm with a UK based doctor right now who by all accounts is good, but we're going very slowly on the medications - he got my to try antihistamines for 2 months (loratidine and famotidine) but these didn't help, so I'm just about to start Ketitofen and then reassess after another 2 months.
All seems incredibly slow :/ is this the standard approach? I'd like to bring up with IVIG and Rituximab with him too, this thread is the first I've heard of any of these things mentioned.
There are definitely a number of factors that increase one's mast cell reactivity. Working on reducing each one of those that you have is extremely useful.I'd also love to address whatever is underlying it, I know I have gut dysbiosis, SIBO, and I've recently tested positive for high mycotoxins, no doubt that one or all of these is contributing to MCAS but I simply cannot tolerate any treatment at the moment, anything like probiotics and it triggers my MCAS.