Bronchiectasis ,Ibd , Allergies and histamine intolerance

[Ganesdh]

I am having severe bilateral bronchiectasis ,inflammatory bowel disease, mast cell activation disorder with histamine intolerance,allergic rhinitis and tachycardia. I never know I have asthma in addition to this. I am 44 and now spend all my time in bed due to severe malnutrition and loss of lung function with fev less than 20%. Inhalers and nebulizers never worked for me and I am now without any medical support. One pulmonologist said my case may be allergic bronchi pulmonary aspergilloses or fungal asthma. But no treatment is going to work because of severe bronchiectasis. He gave me itraconazole but after I month my weight dropped quickly due to stomach problems caused by it. I stopped it and now on my wits end. I have a young wife and I don't know how she is going to manage life without me with a young child

My pulmonologists here in India are concerned only about my lungs and never bother about other diseases which are found by a helpful functional medicine practitioner who unfortunately died in an accident. Any one here with histamine intolerance or mast cell disorder kindly share if anything works for this.

Thank you

Ganesh

[floating_]

I am on a bunch of things to control my MCAS and Asthma as for me they're very much linked.

Fexofenadine, Famotidine, Chlorphenamine, Sodium Cromoglicate, Ketotifen and Montelukast. Then my asthma medication also helps manage the MCAS and I am on Relvar, Spiriva Respimat, Ventolin (inhaler and nebuliser), Prednisolone and Dymista.

Will be getting Xolair at the end of the month too.

[Ganesdh in reply to floating_]

Thanks a lot floating. I have ketotifen. I could not get cromolyn sodium for oral use. Prednisolone works but increases my chances of lung infection. Fexofenadine is also contraindicated in my case due to its drying effect on mucus in lungs. Let me try the other suggestions given by you one by one.

[floating_ in reply to Ganesdh]

I used to be on Cetirizine in place of Fexofenadine, might be worth speaking to your doctor about that.

The basic outline for mast cell control is a H1 blocker (e.g. Fexofenadine), H2 blocker (e.g. Famotidine) and a Mast Cell Stabiliser (preferably a systemic one like Ketotifen). After that it's much to do with tinkering around with the set up including trying out addons like Montelukast.

Good luck!

[Ganesdh in reply to floating_]

Thanks floating. My doctors never bother about mast cell disease and histamine intolerance. Hope I can find a good doctor who can help me.

[Blackcat99]

I'm sorry that you are so unwell, Ganesdh, am hoping that you can find a medical practitioner who is able to take a better overview of your situation. I'm not good on the technicalities of all the medications, but I've had all the symptoms of bronchiectasis since childhood TB (although only diagnosed a few years ago) and have also always had bowel problems and allergic rhinitis. Within the past year, a new doctor prescribed Mometasone Furoate nasal spray (50 micrograms) to help with post-nasal drip, and that has made a startling difference to the rhinitis. Also, there has been a considerable improvement in the Irritable Bowel Syndrome - not sure if this is coincidental, or if the constant post nasal drip was also affecting the gut?

It's certainly not a cure for all your problems, I know, but I wonder if that sort of treatment might help to lessen some of the distressing symptoms for you?

Take care, and good luck .

[Ganesdh in reply to Blackcat99]

Thank you very much. I will try that because it is easier for me to use a nasal spray. I also have a lot of food allergies due to my histamine intolerance and doctors never bother about it because it is still a unknown disease in medical field. Hope something works and give me some more time to live.