Hi crisf! I had a terrible time trying to go on both cromolyn and ketotefin. When I finally got the doctors to give me a prescription for these two drugs, I felt like I had won the lottery! I was so excited and had such high hopes. Sadly, I couldn't tolerate either of them. Cromolyn made be feel off, and I had really bad GI issues and vomiting with it, even at one drop. After taking ketotefin for 2 days, I had an angioedema episode that lasted for 2 weeks. Unfortunately what works for some may not work for others:( keep trying! As starflower once pointed out, there are a ton of antihistamines out there! I'd like to try them myself!
I am very interested in how ladybug and mountain girl do on Xolair. I'm holding on to the idea that this could be my last straw at a chance of getting my system somewhat under control.
lynda~
I'm starting to think my bucket is already full before my day begins because of fillers too.
I was wondering what fillers you have found to be most problematic for you? I know we're all different, but I'd like to hear them as some things seem to be the same for us mast cell people! I too have major issues with gel caps! It doesn't seem to matter if they are animal based or plant based, they still bother me. I also think I have issues with glycerin, which is in most meds.
On the topic of medications I have a question I would like to ask you all....
I take ibuprofen like its candy (within proper limits of course) but I do take 600 mg twice daily for headaches.
I know I have a salicylate sensitivity, and I know that the urticaria society warns us not just for aspirin, but for NSAIDs as well. But ibuprofen seems to be the only thing that touches my headaches, so I've kind of put that warning on the back burner. Tylenol doesn't do anything for me:(
I have been really "active" lately and not feeling well at all. Worst I've felt in some time.
I've been looking at what I do everyday that could be causing this ( aware that it could be the season). But this morning I started thinking about the ibuprofen. Up until about 2 months ago I took Advil liquid caps; but then they reformulated and added coconut oil so I had to switch to a generic liquid gel cap.
None of the ingredients are a red flag for me as far as I know. But maybe there are some nasties ones in there for me. Or could it be the ibuprofen itself?
I decided to test my theory and haven't taken any today. I'm muddling through my headache. Ugh.
If anyone has any thoughts or experience with this, I'd love to hear it! I'm really hoping I'm on to something here and I can start unloading some of my bucket! This has been a very long flare. I can't take much more