Brigitte,
I have read that people have lost weight on cromolyn. I believe its the ketotifen that makes you gain weight. But I seriously could not eat more that beef chicken,green beans and rice. So natrally when the cromolyn and the ketotifen kicked in I was chopin' at the bit to eat every thing that I could get my hands on with out a reaction!
Sometime I just remind myself...yes you have gained weight but atleast you are alive. At my worst before cromolyn I was having anaphilaxis daily...I didn't know why and I didn't know how to fix it. And I didn't know if I was going to make it another day. It was horrible. I even started on a bucket list. I was to sick too get out of bed so I thought it might be too late for a bucket list. But my doc put me on the cromolyn and slowly it started controlling my symptoms. It will make you feel worse before you get better, but I had no choice because I had no alternatives. So I bunkered down and stayed in bed till the worst was over. Then one day I got up and had the energy to walk the dog and to bake muffins. You have to realize this was amazing because I had spent the last 6 months in bed, the last year dragging my sick body to work only to come home and sleep until it was time to go to work again.
Brigitte, I was also allergic to my house. I started having my throat swell just by walking in my house.(Before we found the mold) I slept in my car, in a tent, at my mother-in-laws, in a motel for 3 weeks, went to my parents house out west of 3 weeks, then we remodeled the minibarn and I slept in there for a month. I was exhaused, I would go to the y to shower and I would fix myself for work in the bathroom at work. I would walk to the hospital close to our house to use the bathroom. I get stressed out just thinking about this. I should write a book, it was horrible. Plus its against our HOA to live in the minibarn
The comolyn has made it possible for me to live in the house! I wonder sometimes if we should sell the house and move, because I wonder if the mold spores are still affecting me. I wonder if I would be healthy in a different house. But I think deep down I know that I have this disorder and moving will not make it go away. We have done everything humanly possible to make the house safe. I do feel better here than in other building- so I know that much.
I also think that cromolyn has really helped with my reactions. Kind of made me into a leaker too, instead of always being a shocker. (there are still things that make me shock but not everything) Once you are a shocker, being a leaker is a happier place to be. Because you can relax...and not constantly feel you are going to die. I mean I cant go crazy and eat everything I want but the scary level has been deminished! Before cromolyn, I did not want to be left alone, I had my teen babysit me when I took new meds or ate. Just incase I couldn't epi myself. Now that is sad! I remember, my husband was away and I had to drive my daughter to youth group, and pick her up and stay alone the whole time she was gone. It was so frightening. I remember picking her up and my throat was starting to swell and I didn't know what to do. I kept texting her, we have to go now!! I probably took benedryl and drove home slowly but it was scary---So cromolyn has helped me not live in fear 24/7!!
I really think it has been a life saver. I do want you to know that it does not 'HEAL" you...I was hoping to be healed and the doc said no you will never be healed but the meds will help control it. I cried a few days with this info, but then you have to pick yourself up and move on.
I would certainly ask the doc to let you try it. It will calm your mast cells down and those are the trouble makers!
Pam