Mast Cell Disorders Forum - Cromolyn sodium

Starflower

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Cromolyn sodium
01/25/11 at 11:40:19

Quick question, but an important one...

Has anyone tried using cromolyn sodium as a powder that you dissolve in water as an alternative to Gastrocrom?

I recently contacted a compounding pharmacy about this idea. The best they can do is pack 200mg of cromolyn sodium (with no fillers) into a capsule that I could open and dissolve into water. They can't directly compete with Azur Pharma by providing it in solution form. Seems reasonable. The price is approximately $150 for a month's supply as compared to $1000 for one month of Gastrocrom.

Although I have insurance, I hate the idea that so much money is being spent on such a basic medication!! Cromolyn sodium is OLD. It's not chemotherapy, it's not a fancy biologic... the only reason it's now considered an "orphan" drug is because doctors stopped using it to treat asthma once leukotriene inhibitors were invented. As long as it works just as effectively as Gastrocrom (it seems like it should), I like the idea of using something I could probably afford even without insurance... just in case

I have an appointment next month with the doctor who prescribed Gastrocrom for me... I could ask him to write a prescription for this different version of cromolyn sodium. What do you think??

Heather

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Lisa FORUM MODERATOR/ADVISOR Offline I am not a doctor. Posts: 1499 Volta Redonda, RJ Brazil	Re: Cromolyn sodium Reply #1 - 01/25/11 at 14:31:03 GO FOR IT!!!!
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nycpots Tutor Offline I Love YaBB 2! Posts: 28 New York, NY	Re: Cromolyn sodium Reply #2 - 01/26/11 at 04:36:00 I haven't tried it but would love to hear if you give it a whirl...I'm fortunate enough to have excellent insurance (for now) but I, too, find it criminal that this medication is so expensive....
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chaco

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Re: Cromolyn sodium
Reply #3 - 01/27/11 at 11:40:20

I am still in process of being worked up for masto so don't have a definitive dx there. My guess is indolent systemic, although I do have chronic blood disorders so....we'll see.

In December, I started taking pure cromolyn sodium, compounded with no additives and have seen big improvement in stabilization. Less waking w/flushing, less flushing, period, and what flushing I have is less intense. My lifelong nausea also resolved almost immediately. And within minutes of taking a dose, I can feel my muscle tension easing up and my CT relaxing. I've also seen a big improvement in my inflammatory bowel disease.

Mind you, all this improvement is in conjunction with complete avoidance of dietary triggers - meaning a very restricted diet to which I strictly adhere - and best avoidance of other environmental triggers.

I am currently taking 2-200 mg of cromolyn upon rising, before meals and @ bedtime. A month supply at that doseage cost me $104.00, for 240 200 mg caps.

A few weeks ago, we added chloropheneramine, 1-2 2mg caps taken same as the cromolyn. We needed a filler so the pharmacist had me bring in my own pure DE for him to use for this purpose. I've seen even more improvement since starting this antihistamine. Sinusitis and NP itching has cleared up, as has ear canal itching. Just feel better.

Deb Mc

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nikweth

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Re: Cromolyn sodium
Reply #4 - 01/31/11 at 11:21:16

I'm wondering if anyone has noticed an side effects when first starting gastrcrom? I just started today with one amulet this morning and one at noon so I've started with 1/2 the dose and only 2x so far and I need to take one more before my evening meal. The doses I took this a.m. made me feel a little dizzy and jumpy. I was already having a hard time breathing so this made me somewhat nervous. I took some benedryl this afternoon and feel fine now. I believe this is what my brother used to take in his nebulizer as a kid but in the inhalation form of course. I will try again tomorrow and see if I feel the same. If any of you did experience this, does it go away after a bit of time?

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mikev

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Re: Cromolyn sodium
Reply #5 - 01/31/11 at 14:44:04

NW:
I think you were just nervous trying something new as I think everyone of us is. I've been on it now about a year for my SM and it has helped my skin sensitivity. I suggest start slowly & give it a chance till you can get up to full dose. Make sure stomach is empty as very little gets absorbed. The good part for me, is it has helped cut down my snacking as I want my stomach completely empty to get max beney. Lost about 10#'s that I had gained from an earlier adventure with prednisone & having to reduce my exercise regiment.
Good luck
Mike V

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pdl

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Re: Cromolyn sodium
Reply #6 - 01/31/11 at 15:59:24

I just started it about a month ago. The first week was pretty bad. I was wired, dizzy, rocking feeling, really sad and almost did not continue. I stayed in bed an entire day when I first started because I felt so bad. Luckily I talked with others on the forum and looked at other post and decided to continue. I feel much better now on it. About the second week into it, I started noticing a difference. The doctor told me it was normal for that to happen. It probably somewhat triggered me at first but then the cells can't do it over and over because the gastrocrom. Keep on it if you can for at least two weeks before you give up.

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nikweth Tutor Offline I Love YaBB 2! Posts: 76	Re: Cromolyn sodium Reply #7 - 02/01/11 at 01:48:21 Thanks so much for the response. I will continue as prescribed. It's a good thing I have this week off. I'm remaining hopeful that it will work just fine.
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TRama Ex Member	Re: Cromolyn sodium Reply #8 - 02/16/11 at 08:16:35 Heather, I take pure cromolyn mixed with water. If you consider doing as you've said, I would advise to dissolve it in a generous amount of water. I usually use a 0,33 L bottle. Makes it easier to dissolve it mechanically, instead of pre-heating the water. Tiago
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Starflower

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Re: Cromolyn sodium
Reply #9 - 02/16/11 at 09:36:39

I was wondering about that very thing! I was thinking maybe I would add the powder to a small amount of water (a few ounces), stir vigorously, then add more water to make sure everything has a chance to dissolve. Even with Gastrocrom I use about half a liter of water... the more water, the less you notice that "rusty" taste Wink

I'm seeing my primary doctor (the one who prescribed Gastrocrom) next week! I'm planning to ask about switching over to the powder... there's such a huge difference in cost. I don't mind mixing it myself.

Heather

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We're all in this thing together
Walkin' the line between faith and fear
This life don't last forever
When you cry I taste the salt in your tears
(Old Crow Medicine Show)

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TRama

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Re: Cromolyn sodium
Reply #10 - 02/16/11 at 11:43:43

Heather,

That is how chemists usually do...

In this case, since cromolyn is so much insoluble in water, it's best to add a bit more water before stirring. Also, sometimes when I use a small amount of water (which I usually do in the evening, for obvious reasons), the cromolyn gets stuck on the bottles walls, and it gets even harder to make it dissolve. It is just a matter of habit, though... You will master it in no time.

Tiago

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Starflower FORUM ADVISOR Offline Not a medical doctor Posts: 715 Indiana	Re: Cromolyn sodium Reply #11 - 02/16/11 at 12:06:34 Heh, heh... I started as a chemistry major in college. I went through the first two years (including organic) and decided I just didn't like it ENOUGH to have a career in chemistry. Heather
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nycpots

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Re: Cromolyn sodium
Reply #12 - 02/28/11 at 10:52:47

Hi gang,

I have a quick question. How does your dr. write-out the Rx for Gastrocrom? My pharmacist says they can't break apart a box of Gastrocrom and it comes in such a way that getting a rx for Gastrocrom 200 mg 4 x day for 30 days results in a 'partial box' so they give me only 24 days worth. ugh. Does anyone else have this issue? How do your dr's write out the rx's to ensure you get a full 30 days worth? Any advice would be much appreciated.

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Starflower

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Re: Cromolyn sodium
Reply #13 - 02/28/11 at 11:31:50

I've been getting Gastrocrom from CVS... they give me two boxes plus six more packets in a ziploc bag. Who cares about dividing the box? To me that's a pathetic excuse. I would either go to a different pharmacy or contact your insurance company... if they think you're getting a 30-day supply you should be getting a 30-day supply.

Heather

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We're all in this thing together
Walkin' the line between faith and fear
This life don't last forever
When you cry I taste the salt in your tears
(Old Crow Medicine Show)

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Kim

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Re: Cromolyn sodium
Reply #14 - 02/28/11 at 13:28:39

NYCPOTS;

Brieann is also on the Gastrocrom and we have the same issue with the packaging... There must be a reason for them to package it this way (more money in the end for them??... hhmm??) Maybe we should write a letter to the Pharmacuetical Company???? This has nothing to do with the Pharmacy themself but how it comes pre-packaged. So even though the Dr. writes for a month supply we get a 24 day supply. I work for the Hospital so we get all of our medications filled through them and they do not keep this medication on hand... they have to order it in for Brie... so they get one box and that is what we get. It is a bummer though.... think how fast that money adds up when we end up paying for 3 more months of the medication in a years time due to being shorted that week every month. Angry

Kim

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