Mast Cell Disorders Forum - Cromolyn sodium

spring Rookie Offline I Love YaBB 2! Posts: 6 Bay Minette, Alabama	Re: Cromolyn sodium Reply #30 - 06/22/11 at 07:08:45 I just happened across an article saying cromolyn can be used to treat diabetes and obesity so I really want to get some. It seems I have a 3 fold reason to take it now. I am gathering its quite pricey though. Any suggestions as to how to get my family Dr to rx this med to me? I would like to try it asap! Thanks! Spring
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Riverwn FORUM MODERATOR/ADVISOR Offline Posts: 993 Gainesville, Florida	Re: Cromolyn sodium Reply #31 - 06/22/11 at 07:26:20 If you already have a diagnosis for mast cell disease of some kind, it should be easy tp get your DR to prescribe this--it is normally used to calm and stabilize mast cells. Good luck! Ramona
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cnm1

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Re: Cromolyn sodium
Reply #32 - 06/25/11 at 01:12:31

Starflower,
Have you started the the cromolym powder yet? If so how is it working? Our new insurance contract has upped the copay to 125 for cromolyn!! Along with my D other meds - it is pretty ugly. I am going to go talk to a compounding pharmacist. I know that they can not compound a liquid form but how hard can it be. I spent 7 years as a hospital pharmacy tech (in the old days) and used to make IV, Chemo etc from scratch. If they give me some info, I know I can do it. Let the drug company come knocking on my door!! Cheesy

Really, I would be happy to be headline news.

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Starflower

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Re: Cromolyn sodium
Reply #33 - 06/25/11 at 02:19:59

I haven't switched to the powdered form yet, but I'm going to as soon as I get back from vacation! I got the green light from both Dr. Castells and Dr. Greenberger. Here's what the letter to my GP says:

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She should have her Gastrocrom preparation done by a compounding pharmacist. It is cumbersome to use the ampules which contain 100mg of Gastrocrom. A better preparation would be to have a compounding pharmacist prepare a preparation in which there is 50mg of cromolyn sodium is 5mL. Accordingly, she will take 20mL (200mg) 3 to 4 times a day, and it will be easier for her to carry in a small vial in her purse so she will remember to take the medicine during the day.
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5mL = one teaspoon

I'm really looking forward to mixing this stuff myself! Gastrocrom is crazy expensive... hard to travel with... generates tons of recycling (waste)... and (IMO) is an all-around-pain-in-the-butt medication to take.

Cheesy

Heather

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Patricia Guiding Light Offline Posts: 164 Washington, dc	Re: Cromolyn sodium Reply #34 - 08/15/11 at 10:07:16 Hey we have used both, the ampules are way more convenient but the price is insane and our insurance doesn't cover it. We get ours from Switzerland in the capsules that we dissolve in water and it costs about 180 a month.
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cnm1 Rookie Offline I Love YaBB 2! Posts: 7	Re: Cromolyn sodium Reply #35 - 08/17/11 at 13:15:14 Hi Patricia That is great to hear!! I am glad to know there are other options. I can only keep my daughter on my insurance until 26. What do they call it in Switzerland? Where do you order it from? THank you Louise
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Patricia

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Re: Cromolyn sodium
Reply #36 - 08/17/11 at 13:58:22

It's called Nalcrom by proreo Pharma
They make the capsules that are 100mg or packets in 200mg...we use the capsules and it is pure the packets are easier to dissolve but have lactose and i think a flavoring so we haven't used those.

I also break open the capsules and mix it with cream to put on my husband when he gets a cut, weird bump or rash...I think it makes things heal faster. I used it on a strange pimple like bump my daughter got on her arm and it stopped itching and was gone the next day...just started experimenting with this stuff.

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larken

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Re: Cromolyn sodium
Reply #37 - 10/27/11 at 23:52:31

I'm in the Netherlands and I also use Nalcrom -- cromolyn in powder form. I mix it in a glass of warm water and drink it a half hour before meals.

I also experienced side effects like those mentioned above - dizziness, some brain fog, nervousness - for the first 3 weeks. I'm now about a month into it and the side effects have definitely decreased, though they are not totally gone.

I switched from Ketotifen to cromolyn, gradually phasing out the Ketotifen and increasing the cromolyn. I think I had more side effects because I was going off the Ketotifen after 1.5 years and my mast cells were probably extra sensitive because of the change.

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Joan FORUM ADVISOR Offline Posts: 1502 Colorado	Re: Cromolyn sodium Reply #38 - 10/29/11 at 13:21:21 Heather, I guess I'm really dense today, but I don't understand how 50 mg. in 5 ml. is less cumbersome than 100 mg. in an ampule of 5 ml. Also, how do you find a reputable compounding pharmacy? Thanks!
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mikev

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Re: Cromolyn sodium
Reply #39 - 11/01/11 at 04:49:19

Joan:
I'm dense on this as well. Would love to switch to mixing it myself. Even though have insurance, Azur is ripping people off. Heather when you get it figured out let me know. I think the doc was just CYA when
he said have a pharmist do it. If people around the world can do it so can we in the US. Just a side note, I'm using gastrocrom to treat my feet, by spraying some on feet. Pain hasn't gone away but they don't flush as much so it's doing something.
MikeV

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iamnotalone

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Re: Cromolyn sodium
Reply #40 - 11/02/11 at 08:07:04

Joan;
In answer to your question about "finding a reputable compounding pharmacy": My family just raised this question with me when I ordered Ketotifen. I went online, read their websites And reviews.
My ketotifen is supposed to come by UPS today, so we'll see... But- yes-Definately "check out" who/where your meds come from.
hope this helps someone,
lori

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shabrans

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Re: Cromolyn sodium
Reply #41 - 12/06/11 at 07:37:29

Can any of you tell me where you get the cromolyn powder? I just started gastrocrom a month ago and think my pharmacist accidently undercharged me-I do have insurance but when found out real cost of 3 month supply(1500)-its just way too much and this really helps me so...
Also-any other ideas of other mast cell stabilizer that is cheaper I could try? Is ketotifen available inUS ?

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lglamp541 Rookie Offline I Love YaBB 2! Posts: 1	Re: Cromolyn sodium Reply #42 - 01/05/12 at 10:23:59 I am new to this site. I live in Delray Beach, Florida. I started Gastrocrom 2 weeks ago. I am taking it 30 minutes before meals and at bedtime. My question is what if you want a snack, say 2 hours after lunch or dinner, do I need to take more gastrocrom or is it still in working?
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Joan FORUM ADVISOR Offline Posts: 1502 Colorado	Re: Cromolyn sodium Reply #43 - 01/05/12 at 16:17:41 The schedule is designed so you take it at regular intervals, on an empty stomach, but you don't have to take it every time you eat. The maximum dosage I've heard of is 2 vials, 4 times/day.
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Anaphylaxing Guru Offline Hang in there! You can do it! Posts: 836	Re: Cromolyn sodium Reply #44 - 01/08/12 at 19:31:38 I just saw this, but this is what I take! It's all I can get in Canada. I mix two capsules with water. I was told they were considered to be equivalent. I think they've helped me. . ..
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