Cromolyn Sodium Powder to make my own Gastrocrom

Who Me?

Well-Known Member
My NP rx'd Cromolyn for me but even with insurance it was $183. I was looking for cheaper options when I found some posts on Inspire where some people were getting the powder from a compounding pharmacy in Bellevue, Washington.

I called them yesterday for details. 25 gms powder, 1/8 tsp is 150 mg, 4x/day. A one month supply. That is $70 plus $20 shipping UPS.

I just called a pharmacy where I get my rx's to see if they can do it and they can, same price for pure Cromolyn (another compounding pharmacy I called won't sell it). So my doc called in an RX for me this morning for the powder.

I'm going to take 4 oz water and just under 1/2 tsp of powder and put in a glass bottle and keep it refrigerated. 1 tsp or 5 ml is 100 mgs. That'll give me 23 doses. He said I can make more which I would if I had a bigger glass bottle.

From what I've been reading, taking it this way works even better than the ampoules. Time will tell. And he said he will do this for others if anyone wants to go that route. I have the number of the place in WA if anyone wants that or the compounding pharmacy I used.

Here is another link I found talking about it. Also do you guys who take it drink extra water with it?

http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1295998819
 

Issie

Well-Known Member
I want to know how to get it cheaper. I have horrible insurance and am afraid I won't be able to get it. It has been one of my best meds. Every time I try to get off it, I crash. I'm looking to see if I can get and try ketotifen. I don't know if I can get it in Mexico or not. It's supposed to be cheaper. But don't know if it's as good.

Issie
 

Who Me?

Well-Known Member
You can get ketotifen cheap from India . I think I gave you a link. I can't remember where I got it right now but I got 3 months or so for about $30.

https://medik24.net/index.php?route=product/product&filter_name=Ketotifen&product_id=8

The info for the cromolyn powder is on my computer. I'll post it tomorrow. Or call a compounding pharmacy near you and ask them. My place has to order it so I'm not sure when I'll get it. But I'm saving $110 for the exact same stuff. I'm just making my own

I have no problem with stuff I get from India. Cipla is a good generic. There is no reason to spend $$$ when you can get decent stuff for cheap
 

Issie

Well-Known Member
Yes, I still have that message saved. Thank you.

I called a local compounding company a few years back and they wouldn't sell me the powder. They would put it in capsules, but not raw med. It was very close to my same cost. I had better insurance then. So maybe this place you are getting it will be cheaper. Only thing, sometimes they can't ship it if they don't have a license in that State.

Issie
 

Who Me?

Well-Known Member
The place in Washington ships. And I asked my place and they had no problem. It's not a controlled substance so maybe it doesn't matter

I did read some got caps and then Dumped them. I'm getting pure powder. A one month supply. You need and rx.

Clarks pharmacy Bellevue WA $70 plus ups shipping 25 Gms. Dose is 1/8 tsp =150 mgs
tel:+14258810222

Steven's pharmacy Costa Mesa CA I spoke to Claudia. $70 not sure how much shipping is. Dose 1/2 tsp (just under) in 4 Oz water 5 ml=100 mgs. E
800-352-DRUG
 

Issie

Well-Known Member
Thanks! My pharmacy wanted $1700 for one month. That's just not doable. I have a high deduct before insurance even kicks in. With my older insurance, I only had to pay $40. Sad the way insurance is going. Too many sick people.

Issie
 

Issie

Well-Known Member
I use 10ml to 20ml per dose. So 200-400 mg per dose. (Dr Goodman at Mayo is needing to double the doses on some of us harder to treat patients.) Trying to sort how much I will need a script for. Brain fog day.....

Issie
 

Who Me?

Well-Known Member
Even if you're taking more the cost might still be better. And if you buy a matger quantity the price might go down. Even then $140/mo or even $280 is still way better. If you get 50 Gms them that is Enoufh die 200 mgs/dose.

Or call Steven's and ask to speak to Charles. He's the head pharmacist and he gave me the dosing. I've read this way works better than the ampules so you might be ok with a little less. This is pure powder.

Also find out if your insurance covers compounded. You might be able to get some reimbursed. Worth a shot.
 

Who Me?

Well-Known Member
Just spoke the Steven's pharmacy. My powder should be in soon so I might have it Friday.

I know I can't pay $185/month for one med. that's absurd. Especially when I know someone is getting it for $10. I'd rather not pay $70 either but I have to try it

Same with ketotefin. How can you argue with $30 for 3-4 months.

I also have 3 sources for 550 mg rifaximin. One is $99 for 50, no rx, one is $99 for 50 from Canada and one is $139 for 100 from Canada. Those need an ex. And my NP Told about the first Canadian and said to get cipla which is a huge generic company on India.

Big pharma is forcing us to do this. I refuse to spend that much on meds when there are options
 

Issie

Well-Known Member
I know.....

I keep trying to cut down on my meds. Was able to go a month without them one time, got under stress and crashed again. Stress makes any illness worse.

I'm hoping I can replace the GastroCrom with ketotifen. But it doesn't have same function/properties. I think I need the calcium channel blocker. Maybe I could get that and along with ketotifen it would work.

However, I hear ketotifen makes some so tired they can't function and makes people gain weight. I don't need either of those side effects. I have only a good response to GastroCrom (Cromolyn Sodium). Nothing bad for me. And that's unusual. I also found out it is used for MPN which I'm a gene carrier for. I don't want cancer or leukemia. Hope to be able to stay on it.

Problem, I hear, it has no competition. It is used for those with what is considered "rare" problems.....and it isn't made by many. So they can charge what they want. Sad for us that really need it. I was hoping I could get it in Mexico - but my friend checked and they didn't have it. Hope your places make it a little more affordable. I know of someone who got 3 months for $25.00. Wish I had her insurance.

Issie
 

Who Me?

Well-Known Member
I was reading on a forum thread, maybe the one I linked, that Gastrocrom and ketotifen are two completely different things and do different things. So one can't really replace the other.

I don't see how one place can charge $10 for an rx and another $185. That's what makes me so mad. If it helps then that's another thing. And I contacted some places that help pay for RX's and they either had the optic solution or the nasal. Neither had the oral.

I've been looking all over for it, so far the only option is the powder. I need to look for it from scientific places and just buy it from them. I found one place but it was really expensive. So right now the $70 seems the best price. It'd be worth it to call some other compounding pharmacies and see if they will just sell the powder and for how much. And you can negotiate the price with pharmacies for compounded stuff. Since I'm not getting capsules there is no expense for that. I'm not sure how I will get it. In a bag, tub? No clue.

I could not take the ketotifen. All h1's make me eat non-stop. It wasn't even an option of will power. I could not stop. Clarition and Zyrtek do it too. I took a tiny dose of atarax this morning and I've been eating all day.

Cromolyn used to be available then a doc discovered it help so the pharmaceutical company's made it for Orphan Diseases. So that's part of why it's so expensive. But it still makes no sense why some pay $10.

I'll keep looking since I hate spending money for no reason and let you know. If we get more people buying from the same place maybe the price will go down.
 

Issie

Well-Known Member
They are very different. I haven't tried ketotifen so can't say how it would do for me. Allegra is the only H1 I can use. And I can only take 1/2 Zantac or it causes intestinal pain.

Yeah, keep us posted. Cheaper is better.

Issie
 

Who Me?

Well-Known Member
Getting some ketotifen for $30 is worth it to see how you do with it.

I don't think I have tried Allegra but pretty much all H1's make me eat. I take doxylamine to help me sleep so i'm hoping that works.
I'm able to take 75 mgs Zantac twice a day but I do worry about what it's doing to my gut.

I'll keep you posted
 

Issie

Well-Known Member
I was told to not take an H2 (Zantac) without an H1 (Allegra). It would cause more issues with H1 as it isn't blocked. The H2 would convert into H1.

Issie
 

Who Me?

Well-Known Member
I read where you said that. There are other h1 anthistamines besides Allegra. Dr klimas uses Zyrtec.

  • Hydroxyzine hydrochloride (Atarax, Vistaril)
  • Diphenhydramine (Benadryl, Benylin, Diphen)
  • Cyproheptadine (Periactin)
  • Cetirizine (Zyrtec)
  • Levocetirizine (Xyzal)
  • Fexofenadine (Allegra)
  • Loratadine (Claritin, Alavert)
  • Desloratadine (Clarinex)

I'm not positive but I believe the first generation antihistamine are H1. they just cause sedation which is why people don't use them. If I use one at night I think that works. Or hope it does.
 

Issie

Well-Known Member
Yes, some use others, as you listed. And yes, one may work better than another one for you.

Issie
 

Who Me?

Well-Known Member
Ok. First lesson. The 4 oz bottle I had from licorice solid did not work. I never tested it first. No way it would hold 4 oz water.

I had some small glass storage jars with sealed lids so I used one of those. I wasn't going to waste the powder so this first batch may be less than 100 mgs but that is fine

It does not mix with water well. I had to shake it a lot. But I did read gastrocrom had white particles in it so I should be ok. In going to see what 8 oz jars my grocery store had but I don't want too deep or I won't be able to get the dose out.

May the force be with me.


image.jpeg
 

Issie

Well-Known Member
How'd you do? Go low and slow. Some may get a bit of intestinal upset. Some get a headache. Some, like me, get no bad side effects. It can take awhile to work and has to build up. I started with just 1 vial a day and built up.

Issie
 

Who Me?

Well-Known Member
I took about 80 mgs this morning and 100 at lunch. I'm not noticing much. Some gut discomfort but I have that any way I'm not sure if it's me or the stuff.

I'll stick with 200 mgs a day for a few days. I have to do a dose of LDI Monday and I have a doc appointment Thursday so I don't want to be too messed up.

It totally dissolved in the water overnight so that was good. I still need something else to make the next batch in. What I'm doing works, I'd prefer something taller and narrower.
 

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