Welcome, Guest. Please Login
MCD - Mast Cell Disorders
  Signup for free on our forum and benefit from new features!
  HomeHelpSearchLogin  
 
Page Index Toggle Pages: 1
Send Topic Print
Trying cromolyn again (Read 7710 times)
Britt
Mentor
****
Offline


I Love YaBB 2!
Posts: 327

Trying cromolyn again
02/08/14 at 09:47:49
 
Hello all! Just looking for some support. I was diagnosed MCAS last August and put on cromolyn. I tried so hard to keep at it for about 2 months, but my diarrhea was worse than usual and I would vomit on it, so I eventually stopped.
But lately I've been vomiting without the cromolyn, and my diarrhea is its typical self, horrible.
This morning it popped into my head to try the cromolyn again. So I put ONE drop in an 8 oz glass of water.
I just finished drinking it. My cheeks feel a little "thick" which is somewhat alarming, but I really want to try this again.
I wish I still had my journal from when I was taking it before as I can't remember if I had other bad side effects from it, but I lost the journal while on a trip Sad
Would love to hear any experiences or advice on cromolyn!
I'm also interested in trying singular again. I tried it two separate times, but got a horrible chest/bronchial infections both times. I threw away the regular dose singulair, but still have the half dose children's version which is chewable and flavored. Any thoughts on giving this a try too. (I know not to try both drugs simultaneously) but maybe if the cromolyn isn't working they this again??
Thanks Smiley

Update a few hours later. I don't think cromolyn is for me Sad. I feel really weird and detached and have a horrible headache. Boo.
Back to top
« Last Edit: 02/08/14 at 11:34:18 by Britt »  
 
IP Logged
 
Spartako
Tutor
**
Offline


I Love YaBB 2!
Posts: 58

Re: Trying cromolyn again
Reply #1 - 02/08/14 at 17:24:34
 
Do you tolerate Aspirin? Some people which are sensitive to salicylate also react to cromolyn. You can try to start with very low doses and increase slowly.
Back to top
 
 
IP Logged
 
Britt
Mentor
****
Offline


I Love YaBB 2!
Posts: 327

Re: Trying cromolyn again
Reply #2 - 02/08/14 at 17:50:29
 
Thanks Spartako! Interesting. Thank God for this forum. Yes, I am very salicylate sensitive and cannot do aspirin. I googled and tried to find a cromolyn/salicylate connection, but couldn't find anything. But if there is in fact a connection, it makes perfect sense that I can't tolerate it.
Today was awful Cry I had a pounding headache all day, bad tummy and was super hyper (but not in a good way!lol) the kind if hyper where you want to crawl out of your skin. And I was sweating like a pig!  This happens to me when I take anything herbal too.(which I do not do anymore, lol) I learned the hard way when a fellow mother at my son's school talked me into trying a Univera "xtra" herbal drink. Holy smokes! That was bad! Really bad. I was then coerced by this same woman to drink Univera Pure Gold Aloe. That is the closest I've been to having my throat close up on me  Angry. I have since grown a backbone against peer pressure and pyramid schemes! Lol

Anyways, I'm finally mellowing out tonight. Ahhhh.....no more cromolyn for me. I gave it a valiant effort. Twice!
I am still waiting to hear back from my allergist about the progress he's making towards getting me xolair. Has anyone else tried this? I hope it doesn't have a sal connection! Yikes!

I may also look into singulair again. I'm not sure the children's version I have is good since it has flavoring  Huh
Back to top
 
 
IP Logged
 
Joan
FORUM ADVISOR
*****
Offline



Posts: 1502
Colorado
Re: Trying cromolyn again
Reply #3 - 02/09/14 at 17:26:05
 
I wouldn't try the Gastrocrom again with the reactions you've been having.  

Have you tried Ketotifen?  My GI doc says his patients have really good results with it.  It can be compounded at a compounding pharmacy, at least there's one in Colorado that will.

When you get nauseous, have you tried to drink some ice water or chew crushed ice?  That helps me, but might not help others.

Also, are you on the highest doses of antihistamines?  Liquid Benadryl seems to be one of the best for nausea for me.

I find if I take my meds in the morning and wait 20-30 minutes before eating, that helps.

Finally, you might want to make sure it's not caused by a food trigger.
Back to top
 


Joan
 
IP Logged
 
kesasur
Tutor
**
Offline


I Love YaBB 2!
Posts: 64

Re: Trying cromolyn again
Reply #4 - 02/10/14 at 01:26:31
 
The children's singulair chewable have flavor and aspartame.
The granules (when I last checked) do not.


Kelley
Back to top
 
 
IP Logged
 
mikev
Guiding Light
***
Offline


I Love YaBB 2!
Posts: 188
st louis, mo
Re: Trying cromolyn again
Reply #5 - 03/03/14 at 09:46:51
 
Bridgette:
I agree w/ Joan, although my symptoms are different compounded pure ketitofen was helped me a lot more than gastrocrom ever did. Only downside is some tiredness & got to watch food as slows metabolism.

By the way Joan, who is the pharmacist in Colorado for my own. I use Clark's in Washington state & Mark up there is great but I would like a backup in case he gets run over by a truck or something.

Thanks
MikeV

Back to top
 
 
IP Logged
 
larken
Guiding Light
***
Offline


I Love YaBB 2!
Posts: 136

Re: Trying cromolyn again
Reply #6 - 03/11/14 at 08:33:15
 
I just wanted to weigh in and say that I am also salicylate sensitive and have a reaction to cromolyn.  It makes me feel very buzzed and I begin to wake up at 4 in the morning every morning if too much builds up in my bloodstream.  

Nonetheless, I took it for two years because it decreased my food reactions. I was desperate.  Before starting it I had been down to about 10 foods that I could eat. And, my reaction to Ketotifen was worse, so cromolyn was the best mast cell stabilizer option. (I'm also on H1 and H2s)

I recently went off of the cromolyn to get a baseline.  My brain relaxed completely for the first time in months, if not years.  

Of course, I am now much more sensitive to all my triggers.  It's getting to the point where I am going to go back onto cromolyn while I explore other options with my G.P.  I gave him Dr Afrin's amazing treatise on MCAS and hopefully we can play around with the options that he listed in there.
Back to top
 
 
IP Logged
 
Joan
FORUM ADVISOR
*****
Offline



Posts: 1502
Colorado
Re: Trying cromolyn again
Reply #7 - 03/11/14 at 19:55:42
 
Mike,

The compounding pharmacy is in Colorado Springs, and is a Medicine Shoppe. Here's the contact information.  They will ship anywhere in the U.S.


Medicine Shoppe
2431 North Union Blvd
Colorado Springs, CO 80909
(719) 694-0551
Back to top
 


Joan
 
IP Logged
 
mikev
Guiding Light
***
Offline


I Love YaBB 2!
Posts: 188
st louis, mo
Re: Trying cromolyn again
Reply #8 - 03/12/14 at 03:06:39
 
Joan:
Thanks. Like I said Mark @ Clark's is great but since it's my most vital med, a backup is important.
MikeV
Back to top
 
 
IP Logged
 
Page Index Toggle Pages: 1
Send Topic Print