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Mcas Confirmed With Possible Eds Type 3...questions Re Meds


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Hi All :)

So last week I was seen by an immunologist who confirmed at long last that I likely have MCAS....still have to have a few more tests but he has already started me on the drug treatment protocol. Surprisingly, he also stated he thinks I have EDS type 3? that would explain my joint issues, stretchy, translucent skin and ropey veins, etc.

I would love to hear from any EDS people as I have no idea what this syndrome is? connective tissue disorder is all he told me.....

Also, Is anyone taking ketotifen for their mast cell treatment? I would love to hear the pros and cons? I know it is a mast cell stabalizer...

Would appreciate any guidance and input...

Thanks :)

Bren

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Wow, that's great that you have more answers! I hope that this helps you feel better.

I have researched EDS quite a bit, I think I have EDS tendencies... I'm sure that people on here have more first hand information. I know it can cause POTS because your veins can loosen up due to the problems in connective tissue.

I'm so happy for you though that you are finding more pieces to your puzzle.

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Bren,

Congratulations on finding a physician who is helping you connect the dots. Impressive that your immunologist not only knows about MCAS, but also EDS. There is compelling evidence that autonomic dysfunction and EDS/connective tissue disorders are related to Mast cell activation.

I've only just begun to look into EDS, myself, but it is called Ehlers-Danlos Syndrome. Here is a forum for that community, and you'll recognize several people from here and the MCD forum on that site. Type 3 refers to the hypermobile version, which is the classic version. My family has vascular symptoms, and I suspect we have the vascular version, known as VEDS.

http://www.inspire.com/groups/ehlers-danlos-national-foundation/

Ketotifen tablets are not FDA approved or available in the USA through your pharmacy, but there are different channels to got it with a physician script. One way is by following the instruction on the front page of the TMS website.

My physicians want me to max out my antihistamines before adding in a stabilizer. I see you are only taking 10 mg loratidine. Loratidine, is less potent then zyrtec or hydroxyzine, and many need to take their H1 at least 2, more like 3 times a day. I wonder if you are taking your 300 mg ranitidine in two doses? I have read in several places that it is important to take a H1 and H2 at the same time in a combo, especially when you have breakthrough symptoms.

Best wishes in connecting even more of your dots.

Lyn

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Me too ! Meet all criteria for EDS 3 though no one's slapped it on paper yet. Was all stuff that I just thought of as me and my family (bendy joints etc)

I have MCAS also. I've been on ketotifen for a year. Started it with so many other meds hard to know what's what but am doing much better overall than I was a year ago. Will only know if I still need it when I try to taper off.

I'm also on Cromolyn.

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Yeah, count me in for both. You can look up lots of info on this site and also the EDS Inspire forum.

Some people do have a hard time tolerating the meds for MCAS. I'm one of them. I'm actually only taking H1 and H2's on an as need basis. I do however, take alternative things daily - that seems to help me. I also use Nasal Crom - which is a mast cell stabilizer. That and quercetin and some other alternative things - seem to keep me pretty good. Ketofin can be gotten in the states as eye drops and I have that also. I have also used nasalcrom in a hyperallergenic cream with some oil (as a carrier) for itching.

I definitely have EDS - they think the hypermobile type - but, my genetic markers from 23&me are showing more type 1 and/or 2. Although, I also have signs and symptoms of vascular, but have never had a rupture and the docs say that I would have had something like that by now - if it were the vascular type. So, just taking his expertise for that. I need to have a geneticist look at my results and help me determine this more definitively.

Issie

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