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Switched Cromolyn brands... (Read 25158 times)
PamH
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Switched Cromolyn brands...
06/23/12 at 14:56:09
 
Due to insuarance changes I have had to switch to the Cromolyn that you mix yourself.  It is a lot cheaper and not that much work.  I have noticed with the premixed cromolyn that if I drank it too fast or with not enough water I would have diarrehea.  So with the new stuff I drank down really fast, kind of like a scientific study ( our lives are so interesting) No diarrehea...so now I don't know what to think.  I don't know if it as strong and effective.
So all you out there mixing your Cromolyn, give me some imput please!!
Thanks, Pam
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Joan
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Re: Switched Cromolyn brands...
Reply #1 - 06/23/12 at 17:13:34
 
Generics can, by law, vary up to 15% from the name brand products.  If you can find a generic that's actually manufactured by the name brand mfg., that might help.

If Gastrocrom causes symptoms, sometimes it helps to mix it with extra water.  It seems to work almost as well.  Taking it with food is another way to get it down without symptoms.
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PamH
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Re: Switched Cromolyn brands...
Reply #2 - 06/24/12 at 03:01:48
 
Joan,
I purchased the cromolyn from Clarks Pharmacy out of Washington state.  That is also where I purchase my Ketotifen.  The Ketotifen seems effective so maybe the Cromolyn will be as well.  As for the manufacturer I don't know I will have to do some research.
Thanks Pam
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larken
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Re: Switched Cromolyn brands...
Reply #3 - 07/18/12 at 19:56:57
 
Hi Pam,

At the recommendation of my mast cell specialist, I changed from brand name cromolyn to a pure form mixed at a compounding pharmacy.  That step eliminated my side effects (increased dizziness, headaches, difficulty concentrating).  

I think the new kind was also more effective, but who knows if it was because there were no impurities triggering me or if the new form was actually more potent.  Probably a little of each.

Larken
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NMLiz
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Re: Switched Cromolyn brands...
Reply #4 - 08/22/12 at 07:20:06
 
Pam,

Is there a brand name for the cromolyn that you mix yourself? We are having trouble getting the insurance to approve Gastocrom.

Thanks!

Liz
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PamH
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Re: Switched Cromolyn brands...
Reply #5 - 08/22/12 at 09:40:33
 
Liz,
I get the Cromolyn sodium powder from Clarks Pharmacy in Bellview Washington.(Gastcrom is the namebrand, where cromolyn is the generic brand)  I live in Indiana but they ship it at a resonable price!  Clarks phone number is 1-800-480-3432
You just need to mail the script to them the first time.
Mark is the pharmacist he is very nice and talkative-he will tell you that he thinks the ketotifen works better(I think he likes the ketotifen better)...I just tell him I am on both and the each do different things for me.  Ketotifen worked well for stomach pain, but the cromolyn has helped me tremendously!!
It comes in powder form and I mix 1/8 teaspoon in a little warm water until it dissolves and add more water.  About 12 oz all together.  I always use distilled water, although that is not nessary unless you make it up ahead of time.  It lasts about a week with distilled water. Thats it- saves over a thousand dollars a month.  
I was really worried when I switched that it wouldn't work, but I has done a great job and I would recommend it to everyone!
Let me know if you have any other questions!
Pam Smiley
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Re: Switched Cromolyn brands...
Reply #6 - 08/23/12 at 06:52:28
 
Thanks so much, Pam, for that information.

Sounds like we need to ask for a script for Ketotifen, too.

Liz
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PamH
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Re: Switched Cromolyn brands...
Reply #7 - 08/23/12 at 12:34:55
 
Liz,
The ketotifen, did do wonders for the stomach pain and I liked it, however I went off it (very slowly) because it made me very hungry and I gained quite a bit of weight.  I went from not being able to eat but a few things to my tummy not hurting mixed with being able to eat foods that were off limits before!  It was a dieter nighmare!!  It said one of the side effects was weight gain, and I did! It should warn that it make the kitchen cabinets look tastey!!  Grin  
So now I'm working on getting it off.  It is hard after feeling deprived of foods for so long.
Good luck,
Pam
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Re: Switched Cromolyn brands...
Reply #8 - 08/24/12 at 15:46:55
 
Our insurance just came through with the Gastocrom. Hooray!
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Re: Switched Cromolyn brands...
Reply #9 - 08/24/12 at 15:56:43
 
Pam,

Debbie was just saying recently that she believes she will never get any illness that involves LOSING weight!

We both already have fibromyalgia, and the amitriptyline causes weight gain. So she may not even want to try the ketotifen (our kitchen cabinets might not be safe)!

Liz
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Re: Switched Cromolyn brands...
Reply #10 - 08/26/12 at 00:10:17
 
I had the same problem with Ketotifen!  Prowling for food all the time....
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Re: Switched Cromolyn brands...
Reply #11 - 08/26/12 at 05:19:32
 
Are cromolyn and ketoiten both mast cell stabilizers? What do they do? What is a mast cell stabilizer??
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Re: Switched Cromolyn brands...
Reply #12 - 08/26/12 at 05:20:38
 
Do all mast cell stabilizers cause weight gain?
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Re: Switched Cromolyn brands...
Reply #13 - 08/26/12 at 07:16:02
 
No.  It's individual.  I've actually been able to lose weight when I want to, and am on Gastrocrom.  I think some of the gnawing feelings in my stomach were from irritation, not hunger, and Gastrocrom stopped those.  Also, my blood sugar seems more stable, but I don't know if that's related or not.
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Re: Switched Cromolyn brands...
Reply #14 - 08/26/12 at 08:03:46
 
Yes, it's very much an individual thing.  Some people do, some don't. And, while Ketotifen made me ravenous, Gastrocrom (sodium cromolyn), the other main mast cell stabilizer, does not make me hungry.  I have been able to gradually shed the weight I gained on Ketotifen (certainly not effortlessly, but at least it was more like my "normal" self).  
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