Hello Dr. Afrin,
Hope you and your family had a great Thanksgiving. I hope you don’t mind me reaching out, but I had two questions about symptoms I am experiencing and didn’t know if mast cell was the cause or a contributing factor. I suffer from Mast Cell Activation along with Dysautonmia/Postural Orthostatic Tachycardia Syndrome, Gastroparesis, Asthma, and Reflux/GERD. To control everything I take the following meds daily and in emergency situations/as needed.
Cromolyn Sodium 100mg/5mL Ampules: 2 Ampules 4xday Epinephrine
Gleevec 100mg tablets: 2 tablets daily Ketotifen Fumarate 1mg capsule: 1 cap 4xday
IV Preserative Free Pepcid 20mg/2mL: daily infusion Neocate Prebiotic Formula 55mL/hr: 22 ounces dialy via J-Tube
Singulair …show more content…
We have been told I have hyper inflated lungs and usually around the change in seasons seems to be a struggle at times for my asthma. What is different this year is that since about September I have spent most of my days on oxygen because breathing has become a struggle. I get the feeling of shortness of breath, winded, and chest tightness. With these feelings it also becomes difficult to take a deep breath in. I find it difficult to take a breath in and out and feel like i cannot get enough air. Once on oxygen it is easier to breath and I am not as winded or short of breath. When my chest tightness becomes worse I then use my rescue inhaler or a nebulizer treatment. My symptoms then become worse with reactions but once I use epi my breathing is much easier and I can last a few days off of oxygen then my symptoms gradually worsen to the point of needing oxygen again. We have noticed that in the past I have been able to bounce back from colds and reactions, but this time I just cant seem to be able to bounce back to my baseline. We have also noticed that these symptoms began a few weeks after my old pulmonooglsit took me off of Foradil. I was on this medication for a long period of time, but the manufacturer took this off the market so in its place he told me to just do 2 puffs of my rescue inhaler (ProAir) 4 times a day. I am seeing a new pulmonlogsut next week and we didn’t know if there were any test or medications we could possibly trial to resolve symptoms. We were also wondering if these symptoms could be mast cell related since they seem to dissipate after a reaction needing epi. At first we were just saying it was all asthma, but now it has become more of an issue so we are trying to see if it is solely asthma or if there is a mast cell component. Do you have any recommendations or things to bring up when we meet with the
Hope you and your family had a great Thanksgiving. I hope you don’t mind me reaching out, but I had two questions about symptoms I am experiencing and didn’t know if mast cell was the cause or a contributing factor. I suffer from Mast Cell Activation along with Dysautonmia/Postural Orthostatic Tachycardia Syndrome, Gastroparesis, Asthma, and Reflux/GERD. To control everything I take the following meds daily and in emergency situations/as needed.
Cromolyn Sodium 100mg/5mL Ampules: 2 Ampules 4xday Epinephrine
Gleevec 100mg tablets: 2 tablets daily Ketotifen Fumarate 1mg capsule: 1 cap 4xday
IV Preserative Free Pepcid 20mg/2mL: daily infusion Neocate Prebiotic Formula 55mL/hr: 22 ounces dialy via J-Tube
Singulair …show more content…
We have been told I have hyper inflated lungs and usually around the change in seasons seems to be a struggle at times for my asthma. What is different this year is that since about September I have spent most of my days on oxygen because breathing has become a struggle. I get the feeling of shortness of breath, winded, and chest tightness. With these feelings it also becomes difficult to take a deep breath in. I find it difficult to take a breath in and out and feel like i cannot get enough air. Once on oxygen it is easier to breath and I am not as winded or short of breath. When my chest tightness becomes worse I then use my rescue inhaler or a nebulizer treatment. My symptoms then become worse with reactions but once I use epi my breathing is much easier and I can last a few days off of oxygen then my symptoms gradually worsen to the point of needing oxygen again. We have noticed that in the past I have been able to bounce back from colds and reactions, but this time I just cant seem to be able to bounce back to my baseline. We have also noticed that these symptoms began a few weeks after my old pulmonooglsit took me off of Foradil. I was on this medication for a long period of time, but the manufacturer took this off the market so in its place he told me to just do 2 puffs of my rescue inhaler (ProAir) 4 times a day. I am seeing a new pulmonlogsut next week and we didn’t know if there were any test or medications we could possibly trial to resolve symptoms. We were also wondering if these symptoms could be mast cell related since they seem to dissipate after a reaction needing epi. At first we were just saying it was all asthma, but now it has become more of an issue so we are trying to see if it is solely asthma or if there is a mast cell component. Do you have any recommendations or things to bring up when we meet with the