Larken,
When you went to the doc. and asked for a med and he said no.  What was it you asked for? I did the same thing.  I asked for ketotifen and my doctor said that he had only prescribed it once and wasn't sure if he wanted to use it.  So each time I went in I would reference it and he finally did prescribe it.  After reading some people's stuggles with their docs I find myself lucky that he knows about mast cells.  When I first went to him with anaphilaxis...he said it is possible that you have mastocytosis but it is very rare so we will look at other things first, so slowly (almost a year, seemed too slow to me) he ruled everything out.  He started me on the cromolyn and I impoved so much, my tryptase is slightly elevated but I think everything else is normal.  I haven't had the bone marrow test because I don't see the point, since the treatment is the same and my insurace stinks. The doc was thinking if I had the bmb and it came back negitive that the insurance may not pay for my cromolyn.  At the time the insurance was paying all but $15 a month! So, I take all the precautions of a masto person.  The doctor called it mastocytosis but I don't know for sure since I havent had the bone marrow test.  He said that I'm basically allegic to the world, and I think he is right. I even have trouble in his office, I tell him every time I go in there that there is mold somewhere in the building.  My moldar goes off!  Anyway have you been labled?
Also I pm'ed you with a question.
Pam

I just switched from a compounded cromolyn sodium that had an extended release additive to it, some filler, and was in capsules to plain cromolyn sodium powder that I mix with water. I switched because it seemed like I might have been reacting to something in the capsules.

I was pretty surprised to find that a month of the cromolyn sodium powder will only cost me about $60 at my local pharmacy. I think I read on here that most people have reported their costs being around $150/mo. Also, my water doesn't taste rusty like it did when I used the ampules in the past. Now, these changes are AWESOME, don't get me wrong. The thing is, due to these two things, I'm somewhat concerned that my new pharmacist hasn't given me the correct dose to take.

I reread a few posts from this thread and saw that PamH mixes 1/8th tsp into water, but I'm unsure how many times a day. I just checked, and my scoop that came with my cromolyn sodium powder is 1/8th tsp. I am supposed to take 1/8th tsp mixed in water twice a day. That is supposed to be equivalent to 400mg twice a day (for a total of 800mg a day). Does that sound right?

Thanks a ton to PamH or anyone who can help reassure me!  

Pam, thanks so much for your quick reply! Are you taking 800mg a day total? Each 1/8 tsp would equal 200mg cromolyn sodium that way.

If so, then it would make sense that mine is the same and I would need to be taking two scoops twice a day. (I take mine twice a day rather than four times.) If I did get prescribed or filled with the wrong amount and I need to get that cleared up tomorrow.

PamH wrote on 08/23/12 at 12:34:55:


Hello Pam,

I have been taking 1mg Ketotefin twice a day for a few years to help treat MCAS. It's been doing great. However, I still suffer from brain fog and fatigue. I don't know if I should take something else for that. But you mentioned you were taking both Ketotefin and cromolyn for a while and I think you weaned off Ketotefin? How are you doing? Did you or do you suffer from any brain fog or fatigue?

I am trying to figure out if I should try doing the same thing.  

Thanks so much! ~Ladybug