Flushing And Hives After Exercise Last Night

[Kris4444]

So the meds the immunologist has put me on are not changing anything. I went back to work in the heart of tax season and wasn't able to exercise much. I have an appointment this Saturday with her so I wanted to make another effort at exercising to see if I'm still flushing on the meds like I was when I was on medical leave.

My husband and I went for a walk. I jogged a little in between. As usual, when I slowed down all heck broke loose, vertigo, hard to breathe, severe flushing. It was cold out but I had sweat pants and a t-shirt under my sweat shirt. When I got home and stopped moving completely the whole house was spinning. Looking back now I realize I probably should have used my epi-pen.

This morning I awoke to find my face and neck covered in hives. I have cold urticaria. The meds are supposed to help that too but clearly they are not.

My EDS doctor thinks that my immunologist should send me for a bone marrow for MCAS/MCAD but the immunologist feels that I don't have either because my tryptase levels are normal. I don't want to come off as telling her how to do her job but she did tell me that she knew exactly what was wrong with me and that she could help me. She said I would be feeling great in only two weeks. Well nothing has changed. I'm not ready to give up on her yet. I am willing to hear what other options I have. I want off the meds though, they are worthless.

[Tobiano]

So sorry to hear that the meds aren’t working. That must be disappointing. Sounds like a good idea to go with your gut and explore other options. Do you think your immunologist would be supportive of a referral for the bone marrow test?

[Kris4444]

Thank you. Love your name! I was on a paint show team as a kid! (I am assuming that is what your name refers to?)

She did say when i called the office before meeting her that she sends people out to another doctor but she went on and on about how she doesn't think that it's necessary because the blood work doesn't reflect MCAS/MCAD.

[issie]

How long have you been on the meds and what are they? If she has you on GastroCrom that can take weeks before you notice a difference. Are you on H1 and H2's? It really sounds like MCAS reaction. With MCAS when you have a reaction like you had - is when you need to have the testing done within one hour. They can pick it up then. You have a blood draw and start a urine test. That will confirm it for you. When it is so bad is when you want the test and she can give you standing orders to have the draw done and give you a jug to start the urine test. Most of us with MCAS don't have high tryptase levels with a random draw.

Hope you feel better. Maybe, pushed it a little too soon, too far, too much, too fast.

Issie

[Kris4444]

Hi Issie,

I started the meds at the end of February. I take Xyzal and Singulair twice a day as well as Qnasal which is a nasal spray.

I really didn't push anything. All it takes is a little exercise to set it off.

[issie]

It appears that they have you on an H1 but no H2 and no mast cell stablizers. The mast cell stablizers are thought to be the best thing for those with MCAS because it stops the histamine release before it happens. Exercise triggers a mast cell release. Since you don't appear to be blocking H2's with something like Pepcid or Zantac and are not on mast cell stablizers --you are not really covered on all levels. Pushing the exercise without adequate coverage can give results like you had. Of course, this can happen even while on all the meds that I mentioned too ---as there can be break through issues and we still may have to use an epi pen. At least I understand now why this happened to you. One over the counter mast cell stabilizer is NasalCrom. It is very, very, very weak --but, until you have something else available - some find it beneficial. I started out with this before I got put on GastroCrom. Hoping you get a doctor to look more into this for you --because it seems to be a major player in your illness.

Issie

[Kris4444]

I do take Prevacid for Gerd.

Yes I agree it's a major part of my illness. I also miss being fit. Being overweight and not able to lose is making everything worse.

[SpinnyC]

With Mast cell Activation Syndrome, as Issie said, you can have a normal level of tryptase if the tests are done when you aren't having a significant multi system allergic reaction. That's one of the things that makes Mcas different from Mastocytosis. With Masto you have more mast cells than you should and they build up in places like bone marrow which is why they do a biopsy. All those extra cells drive tryptase up. With Mast cell activation you typically have the normal amounts of cells but they degranulate "inappropriately" or too easily. Which is why it's often described as having "jumpy" or "misbehaving" mast cells. During a reaction your tryptase will go up for a few hours, it's that measurement (among other clinical findings like symptoms and responding to H1 and H2 treatment) which can indicate MCAS. It's helpful to have a baseline tryptase to compare to a reaction level tryptase. But from what I've been told, by more than one doctor, and from what I've read having a normal tryptase when not having a reaction doesn't rule out Mcas. I've also been told tryptase is typically highest when blood pressure is low and a reaction is happening.

[Kris4444]

Thanks SpinnyC. So even a bone marrow may show up negative?

I wonder if she would just try me on GastroCom to see if it works?

I am considering going off the SNRI I'm on for constipation to see if my NE levels go down and the flushing gets better.

[issie]

SpinnyC, you are absolutely correct. That is what it all means.

And yes, Kris it is very hard to get a MCAS DX. There is one other way they can determine it - Dr. Afrin in SC is doing it with an endoscope and tissue samples with a special stain. My doc takes everything into account and if nothing else has worked for some of us Hyper presenting patients he is giving us GastroCrom. Maybe, your doc would let you try it too. The other choice that some are using is ketotifen. But, that has to be gotten from Canada. If you contact ChristyD - her son is on that one.

Hope you get some answers soon. I know how miserable it is. Glad you have the H2 on board too.

Issie

[SpinnyC]

The other thing to consider is how much of H1's and H2's you are taking. Very early on (before my Pots diagnosis) I suspected allergic reactions had something to do with all these weird new symptoms I was having. I was tried on a 24 antihistamine and a tryptase test was done. It was in the normal range and I didn't respond to antihistamines so I was told allergies had nothing to do with it and was sent on my way. But I kept having weird reactions and it was through reading about Pots that I saw information on Mcas and it seemed to fit. When I finally got to an allergist who dealt with Mast cell disorders he said that it didn't matter that I hadn't responded to the antihistamine that was tried because I wasn't on nearly enough to make a dent (I'm now on triple the dose that first allergist tried) and I wasn't on an H2. He also said not all histamines work the same on everyone so there could be some trial and error on the kind of antihistamines that worked best for me (I think I'm on my third different H1).

[Kris4444]

Maybe the doctor is being conservative because of my colon issues? Antihistamines can make constipation worse. She chose Xyzal because it's supposed to be less constipating. The Singulair twice a day was too much for me. I felt like I was breathing fire I was so dried out.

I will be interested to hear what she has to say on Saturday.