Mast Cell Disorders Forum - Cromolyn sodium

jmayk8

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Cromolyn sodium
04/16/12 at 07:12:02

Dr Hamilton called me in a script for Cromolyn sodium and I just picked it up. He told me to continue my zantac and whatever else H1s in addition to the Cromolyn sodium.
Im not sure if I should start off with the full dose-taking 2 vials 4xs a day? I have been reading a little on the forum and it looks like some people had to work themselves up to that dose?
Does anyone have any tips on taking this med? or if it is even worth it-has it helped?
Sorry for all the questions!
Thanks,
Jenny

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Anaphylaxing Guru Offline Hang in there! You can do it! Posts: 836	Re: Cromolyn sodium Reply #1 - 04/16/12 at 09:08:12 Lots of people work up to it; eg starting with one vial in lots of water to make sure they don't react. I started it all at once out of desperation.
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Julie M.

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Re: Cromolyn sodium
Reply #2 - 04/16/12 at 13:20:38

Started with the whole dose when I was on it. I didn't think it did a thing for me so I discontinued using it. In terms of my GI issues, Entocort did a much better job getting my symptoms under control. Having said that, medication is very individualized and what works for one MC patient may not for another.

Here's hoping you have a good response to it!

Julie

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jmayk8 Tutor Offline I Love YaBB 2! Posts: 33	Re: Cromolyn sodium Reply #3 - 04/16/12 at 13:22:57 Thanks Julie. I actually took one vial this afternoon and noticed some numbness and tingling in my left leg and foot. Would that be a common side effect?
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Julie M. Guiding Light Offline I Love YaBB 2! Posts: 104 DC Metro area	Re: Cromolyn sodium Reply #4 - 04/16/12 at 15:30:26 Jenny, Here's a list of the side effects that seems pretty comprehensive: http://healthlibrary.unchealthcare.org/RelatedItems/121,1616 Based on the list it seems tingling and numbness can be a side effect. Keep an eye on it and let Dr. H know if it gets worse.
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jmayk8 Tutor Offline I Love YaBB 2! Posts: 33	Re: Cromolyn sodium Reply #5 - 04/16/12 at 15:34:31 Great, thanks! I just emailed him to just let him know and see what he says...
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Anaphylaxing Guru Offline Hang in there! You can do it! Posts: 836	Re: Cromolyn sodium Reply #6 - 04/16/12 at 17:33:31 I get numbness and tingling randomly and sometimes as part of a reaction/ For me it's often a delayed phenomenon so it's sometimes hard to know what to attribute it to I may well be reacting to some of my meds as I never introduced them cautiously
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Julie M. Guiding Light Offline I Love YaBB 2! Posts: 104 DC Metro area	Re: Cromolyn sodium Reply #7 - 04/17/12 at 00:28:34 Good point Ana. I find the same thing...numbness and tingling in hands/feet; caused by who knows what? A trigger response, meds, something completely unrelated to mast cells?????? It does get very difficult to figure out what is the cause behind so many varied symptoms. What a crazy, crazy disorder!!! Julie
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goldielove

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Re: Cromolyn sodium
Reply #8 - 04/17/12 at 14:51:50

DO not start it full dose right away please call Dr. Castells office she has you start it a totally different way she actually will fax you a schedule her nurse did for me it was totally diff then what my dr told me it was something like one vial a day for a week, I can't remember the whole schedule but call her office and ask for the nurse they will fax it too yu they were very helpful although I ended up unable too take it horrible diarrhea that cont even with one vial as soon as I stopped it the diarrhea stopped I am on ketofin now and have had no reaction so far but I am only on .5mg twice a day, I actually think the only problem with this med is it keeps me awake while everyone else said it made them sleepy go figure my body is always doing the opposite but then again I am not sure if its that or just me I have not slept well since getting this disease.

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jmayk8 Tutor Offline I Love YaBB 2! Posts: 33	Re: Cromolyn sodium Reply #9 - 04/18/12 at 02:17:07 Goldie, thanks for the info. you mentioned you were on ketofin, where did you have you rx filled? it's not in the US right? Thanks, Jenny
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PamH Mentor Offline Posts: 447 Indianapolis, IN USA	Re: Cromolyn sodium Reply #10 - 04/18/12 at 09:29:18 I started with one vial at each meal....after about a week I went to the regular dose. I felt really bad for about 8 days then one day I woke up and felt great!! It has made a real difference in my life. It is not a cure but it does make a difference. Good luck, Pam
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goldielove

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Re: Cromolyn sodium
Reply #11 - 04/18/12 at 11:39:25

I am on Ketotifin and I did get it filled at a pharmacy by me if u google compounding pharmacy's and have a script they will usually fill it for you I have two by me willing too fill it, I use .5 mg twice a day but today had too stop , its the story of my life I usually will tolerate the med for a couple of days then boom all hell hits, today and yesterday I had the worse headache and nausea, and forget about sleeping when I take it and also i got very bad chills all side effects of this drug from what I read most of the people getting relief from this drug are the ones with UP unless I am wrong all I know is I was not in pain (head) until I started this med for me it is not a good drug. I also live in the US, I also got a bottle of the syrup in Panama when i was visiting lol for 8 dollars for a hugh bottel and here for one month of the medication I paid 80 dollars too bad it made me so sick.

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Buster

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Re: Cromolyn sodium
Reply #12 - 04/19/12 at 05:43:51

goldielove wrote on 04/18/12 at 11:39:25:

I am on Ketotifin and I did get it filled at a pharmacy by me if u google compounding pharmacy's and have a script they will usually fill it for you I have two by me willing too fill it, I use .5 mg twice a day but today had too stop , its the story of my life I usually will tolerate the med for a couple of days then boom all hell hits, today and yesterday I had the worse headache and nausea, and forget about sleeping when I take it and also i got very bad chills all side effects of this drug from what I read most of the people getting relief from this drug are the ones with UP unless I am wrong all I know is I was not in pain (head) until I started this med for me it is not a good drug. I also live in the US, I also got a bottle of the syrup in Panama when i was visiting lol for 8 dollars for a hugh bottel and here for one month of the medication I paid 80 dollars too bad it made me so sick.

I also have a problem tolerating medications. Are you able to tolerate any meds?

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jmayk8 Tutor Offline I Love YaBB 2! Posts: 33	Re: Cromolyn sodium Reply #13 - 04/22/12 at 03:01:12 I have been on the cromolyn for a little over a week and my GI symptoms seem to be getting worse. And I am still only on 1 to sometimes 2 vials a day. Is this a sign that it wont work for me? Or do you think I will start seeing improvement in a few more weeks?
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PamH

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Re: Cromolyn sodium
Reply #14 - 04/22/12 at 05:11:10

jmayk8,
I would hang in there. I felt I had no choice, I'm a shocker and a leaker...I could not mess around with shocking contantly. This is the only drug for masto, other than Ketotifen, which I'm already on. When I started I was super sensitive to everything and contantly having the big D. It took a week and a half or so to notice a positive change. Good luck it should get better!
Pam

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Pam

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