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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Medicines >> Cromolyn sodium http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1295998819 Message started by Starflower on 01/25/11 at 11:40:19

Title: Cromolyn sodium
Post by Starflower on 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

Title: Re: Cromolyn sodium
Post by Lisa on 01/25/11 at 14:31:03

GO FOR IT!!!!
[smiley=thumbsup.gif]

Title: Re: Cromolyn sodium
Post by nycpots on 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....

Title: Re: Cromolyn sodium
Post by chaco on 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

Title: Re: Cromolyn sodium
Post by nikweth on 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?

Title: Re: Cromolyn sodium
Post by mikev on 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

Title: Re: Cromolyn sodium
Post by pdl on 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.

Title: Re: Cromolyn sodium
Post by nikweth on 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.

Title: Re: Cromolyn sodium
Post by TRama on 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

Title: Re: Cromolyn sodium
Post by Starflower on 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 ;)

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

Title: Re: Cromolyn sodium
Post by TRama on 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

Title: Re: Cromolyn sodium
Post by Starflower on 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

Title: Re: Cromolyn sodium
Post by nycpots on 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.

Title: Re: Cromolyn sodium
Post by Starflower on 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

Title: Re: Cromolyn sodium
Post by Kim on 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. >:(

Kim

Title: Re: Cromolyn sodium
Post by Starflower on 02/28/11 at 13:35:00

As you know, Gastrocrom is a VERY expensive medication... for an adult, a three-month's supply costs almost $3,000. If you're only getting a 24-day supply then you better be charged accordingly. Seriously!! Anything else is theft, pure and simple.

Heather

Title: Re: Cromolyn sodium
Post by missybean on 03/03/11 at 16:03:56

When do you take your cromolyn? Mine says take it 1/2 hour after a meal. Is that right? I would think it would be before a meal, I asked the pharmacist and he said it was correct.
Melissa

Title: Re: Cromolyn sodium
Post by Starflower on 03/04/11 at 01:18:00

I always take mine on an empty stomach... I was told to take it at least 15 minutes before eating.

Heather

Title: Re: Cromolyn sodium
Post by Kim on 03/04/11 at 03:31:09

I was told to have Brie takes it 1/2 hour BEFORE each meal and at bedtime.

Kim

Title: Re: Cromolyn sodium
Post by missybean on 03/04/11 at 05:11:27

See I thought so. It makes more since. What should I do?
Melissa

Title: Re: Cromolyn sodium
Post by Kim on 03/04/11 at 05:15:42

I would just take it on an empty stomach 1/2 hour or so before meals. I would also contact the Physician who wrote the prescription for you to verify how he or she wrote the Prescription out and if they truly wrote it wrong then educate them :D

Kim

Title: Re: Cromolyn sodium
Post by Kim on 03/04/11 at 05:18:33

http://www.drugs.com/pro/gastrocrom.html

Here is the Official FDA information and it says take 1/2 hour before meals and at bedtime. Go to this site and print out a copy for your Physician and your Pharmacist.

Kim

Title: Re: Cromolyn sodium
Post by missybean on 03/04/11 at 06:53:55

Thanks Kim, mine is a powder thats in a capsule. It's says nothing about emptying into water. It just says take it 1/2 after a meal. I asked the pharmacist and he double checked and said yes thats correct. I'm kind of afraid to question the doctor, it's a new relationship and I don't wanna question her knowledge too much considering this is a fairly new relationship and she knows my history and difficulty with my past doctors not listening to me. So I don't wanna appear to be a no it all. But I wanna take the prescription correctly, I'm going to talk to the pharmacist again and maybe he can call the doctor.
Melissa

Title: Re: Cromolyn sodium
Post by Josie on 03/04/11 at 10:17:43

Hi mel ,

Many doctors will admit not knowing the prescription guidelines for many drugs . Thye do trust pharmacists on these matters :-) if you can ask the pharmacist to ring that should be fine :-)

Here in the UK it is the pharmacist that says when / how to take a medication. Hopsital phamracists leave little notes for the docs :-) and go through all the medication charts and tell the docs if their timings are wrong or route or food guidelines .

so what your doing wont be frowned on :-)

many hugs
Jose

Title: Re: Cromolyn sodium
Post by Kim on 03/04/11 at 11:29:18

I didn't realize you had the powder in the capsule. Brie takes the liquid that is mixed in water. I believe there are a few others on this forum that use the powder so lets ask them - can anyone else who takes the powder form give some advice on this please? Thank You,

Kim

Title: Re: Cromolyn sodium
Post by Sandi on 03/06/11 at 07:39:58

Missyb, I'd really say before no matter what, the idea is to coat those cells in the gut with the mast cell stabilizer before ingesting the food you are about to eat and your body wants to trigger from. I'm perplexed that they don't have you mixing with water too I'd think,,,, def do some research I've not seen anyone not mixing

Title: Re: Cromolyn sodium
Post by missybean on 03/06/11 at 13:04:20

I know, what the heck! Sandi what your saying makes more sence.
Melissa

Title: Re: Cromolyn sodium
Post by sandyb on 03/10/11 at 13:33:12

Hi. My pharmacy gave me a bit of a problem too with the packaing thing until I complained. It costs over 1000.00 a month so I made sure I got a full month's supply. They now give me 2 boxes and then the rest in a ziploc bag with a presciption label on the bag.

Sandy

Title: Re: Cromolyn sodium
Post by Joan on 03/10/11 at 15:59:28

There are mixed thoughts on when to take gastrocrom. Some docs say to take it 1/2 hour before meals, but my GI doctor, who is an expert in mastocytic enterocolitis, Crohn's, and celiac, says it doesn't matter. He said his wife sucks it right out of the ampule without mixing it, and also said I could take it with meals. I would think taking it in capsule form with a glass of water wouldn't be much different from mixing it before taking it.

I thought it worked both ways, although I tended to take it on an empty stomach, unless I forgot. Then I'd take it anyway, regardless. After 2 months of it, 4 times a day, Align once a day, bromelain with meat or fat meals, I was able to stop the gastrocrom without a return of symptoms in about 5 months now, unless I eat tomatoes or other high histamine food. Still don't ever eat leftover meat.

Stopping might not work for everyone, so ask your doc if you decide to. Also, I have gotten some ringing in my ears that coincided with taking it. Don't know for sure if it's related, but the company is still gathering side effect data, so call them and report any side effects.

Title: Re: Cromolyn sodium
Post by missybean on 03/11/11 at 03:56:09

Thank you Joan. I started taking it 1/2 before a meal.
Melissa

Title: Re: Cromolyn sodium
Post by spring on 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

Title: Re: Cromolyn sodium
Post by Riverwn on 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

Title: Re: Cromolyn sodium
Post by cnm1 on 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!! :D Really, I would be happy to be headline news.

Title: Re: Cromolyn sodium
Post by Starflower on 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:

---------------
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.
---------------

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.

:D :D :D
Heather

Title: Re: Cromolyn sodium
Post by Patricia on 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.

Title: Re: Cromolyn sodium
Post by cnm1 on 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

Title: Re: Cromolyn sodium
Post by Patricia on 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.

Title: Re: Cromolyn sodium
Post by larken on 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.

Title: Re: Cromolyn sodium
Post by Joan on 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!

Title: Re: Cromolyn sodium
Post by mikev on 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

Title: Re: Cromolyn sodium
Post by iamnotalone on 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

Title: Re: Cromolyn sodium
Post by shabrans on 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 ?

Title: Re: Cromolyn sodium
Post by lglamp541 on 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?

Title: Re: Cromolyn sodium
Post by Joan on 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.

Title: Re: Cromolyn sodium
Post by Anaphylaxing on 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. . .. :-/

Title: Re: Cromolyn sodium
Post by Anaphylaxing on 01/08/12 at 19:33:26

I had the same fear of not eating without it. To be honest, I rarely eat now unless it's my post cromolyn time. . .I've just got into that schedule and stuck with it. What I used to do is eat after my LATE night dose which I realize now is silly. You don't HAVE to eat after each dose. But I was also on high dose prednisone so had the major munchies 8-)