carolfrn62

I think I may have Mast Cell Activation. I am struggling with breathing issues. I have elevated norepinephrine levels with standing......How does Zantac help MCA?

Fairly new here, so please bear with me if this was covered someplace else.

I was diagnosed with Primary Hyperadrenergic POTS in December 08. I have also been having reoccuring issues with severe and increasingly dangerous asthma flairs. Dr. Grubb is working with me on the POTs thing. I've been on Catapress since january and it does has some implact, or it was. In Late february I had anothe rreally bad Asthma flair and was in the hospital for over a week on massive steroids. When I came home, I was on restricted movement, rest and high dose steroids for a month. Now that my dose is reducing (steroids) I'm feeling less tired adn grumpy, but my lungs aren't perfect. My doctor wants me to start on a treatment called Xolair that is an injection that boosts your bodies ability to fight off allergens. He says that he think it is the only other treatment that we can try. Steriods aren't keeping the attacks from getting worse, and they are increasing in accuity and frequency, so I am not in control. My insurance company is arguing about paying for the drug. We are in the middle of the appeal process.

My big question is, are there any tests or conditions like Mast Cell disorders that could impact my treatment with xolair? I've gotten the idea from reading around here that there is a huge amount of POTS and Mast cell disorder cross diagnosis. Is this something I should talk to Dr. Grubb and Beverly about? I want to know if my breathing issues are connected to POTs somehow. Could all the massive doses of steroids be what kicked off this new episode of POTS, or ????? Does anyone have any suggestions or ideas for me?

Fairly new here, so please bear with me if this was covered someplace else.

I was diagnosed with Primary Hyperadrenergic POTS in December 08. I have also been having reoccuring issues with severe and increasingly dangerous asthma flairs. Dr. Grubb is working with me on the POTs thing. I've been on Catapress since january and it does has some implact, or it was. In Late february I had anothe rreally bad Asthma flair and was in the hospital for over a week on massive steroids. When I came home, I was on restricted movement, rest and high dose steroids for a month. Now that my dose is reducing (steroids) I'm feeling less tired adn grumpy, but my lungs aren't perfect. My doctor wants me to start on a treatment called Xolair that is an injection that boosts your bodies ability to fight off allergens. He says that he think it is the only other treatment that we can try. Steriods aren't keeping the attacks from getting worse, and they are increasing in accuity and frequency, so I am not in control. My insurance company is arguing about paying for the drug. We are in the middle of the appeal process.

My big question is, are there any tests or conditions like Mast Cell disorders that could impact my treatment with xolair? I've gotten the idea from reading around here that there is a huge amount of POTS and Mast cell disorder cross diagnosis. Is this something I should talk to Dr. Grubb and Beverly about? I want to know if my breathing issues are connected to POTs somehow. Could all the massive doses of steroids be what kicked off this new episode of POTS, or ????? Does anyone have any suggestions or ideas for me?

I just returned from the Vanderbilt Autonomic Dysfunction Center. I saw Dr. Satish Raj. I have POTS. I cannot take beta blockers due to asthma symptoms.....I am now having alot of breathing difficulty and I am NOT on a beta blocker. Could this be mast cell activation ????? If yes, how do they treat this? Carol

Does anyone know how my TN doctor can prescribe Ivabradine? It is not available in the USA. I cannot tolerate any beta blockers due to breathing difficulties.

My doc has just prescribed this to me. I am on Florinef, but it only helps a bit. I have been on it for a week, low dose. No reaction so far. Has anyone else tried this drug? It is sold as Coralan here. I it supposed to help boost up my blood pressure which is 80/60 and too low for me.

Many thanks

Suzanne

Suzanne, I want to try this drug. Can you give me specific details on how my doctor would obtain this drug for me. thanks, carol