Pots, Asthma And Mcad

[Lizzegrl]

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?

[carolfrn62]

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?

[carolfrn62]

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?

[juliegee]

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?

Hi Lizzie-

Sorry things are so rough. If you do have MCAD, along with your POTS and asthma- The Xolair should still further help things. Many with MCAD also have asthma. I don't, but my MCAD sometimes acts like asthma. I take daily singulair and use a nebulizer with atrovent which helps me. I'm sure you've tried all of the nebulizer meds by now. I think Dr. Grubb commonly advocates controlling asthma and allergies as he ascertains that they worsen POTS. I've not seen him make the connection between MCAD and POTS. The folks at Vanderbilt, however, have done numerous studies connecting the two conditions.

The way I understand it is that if you have MCAD, and a trigger causes an allergic reaction, your mast cells degranulate causing your blood vessels to leak out, which in turn causes low blood volume, and a subsequent drop in BP and an increase in HR. Postural changes ala standing exacerbate this for many MCAD/mastocytosis patients. Controlling my MCAD (which acts like severe allergies/asthma- but isn't? ) has greatly improved my autonomic stuff.

Could massive doses of steroids have kicked off your recent POTS flare? Anything is possible. Any illness or stress worsens my POTS. Were you weaned off slowly and steadily? Did you react OK to that process? Could your POTS flare simply indicate that your asthma is less well controlled now that the steroids are reduced?

Untangling all of this is tricky. I have found that a masto specialist is the best person to go to for a DX of MCAD. Let us know what you find out. Hope you feel better soon.

Julie