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Gastrocrom questions (Read 4260 times)
Aggiegirl
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Gastrocrom questions
03/11/12 at 03:59:02
 
I have finally decided to give Gastrocrom a try.  I always thought I'd save it as my last restort, but my doctor convinced me to give it a shot now.  So.....I have several questions.  First - do I keep it in the refridgerator?  And if so, when I'm traveling - how do I transport it?  Second - the directions say to take it 30 min to an hour before I eat....is there a time limit regarding when I can take it after I've eaten - for example, if I took it at 11:00 a.m. and then ate lunch at 11:30 a.m., then I ate a cookie at 5:00 p.m. and planned to eat dinner at 6:00 p.m., is it okay to take it at 5:30 - after I've eaten the cookie?  Does that make sense?  Any input will be greatly appreciated!
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Anaphylaxing
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Re: Gastrocrom questions
Reply #1 - 03/11/12 at 13:17:45
 
I don't know about the fridge etc as I take cromolyn, but I do not eat for a full 2 hours prior to the dose and wait 30 minutes to one hour after the dose to eat.  Makes for some interesting scheduling.
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Aggiegirl
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Re: Gastrocrom questions
Reply #2 - 03/13/12 at 03:57:34
 
I started the Gastrochrom on Saturday - took one dose 30 minutes before lunch.  I'm just taking one dose a day at the same time.  Yesterday about 30 minutes after I took the Gastrochrom, my mouth was itchy and my chest felt funny.  Is that common with this medicine?  Then last night at about 11:00 p.m. I woke up and the room was spinning - I was extremely dizzy until about 2:30 a.m.  Now this morning I'm having spells of dizziness.  Has that ever happened to anyone?
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Joan
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Re: Gastrocrom questions
Reply #3 - 03/13/12 at 05:54:03
 
The Gastrocrom we get doesn't need to be refrigerated, but it should say on the packaging if it needs to be kept cold.  

I do try to take it 1/2 hour before or 2 hours after a meal, but my doctor said if it causes nausea or other problems to take it with food at first.  I've seen reports of people having trouble adjusting to gastrocrom.  I have some ear ringing from it, and I did call to report it to the manufacturer.  Some people do better if they mix the dose with double (or more) water than is called for and start with 1/2 or 1/3 vial per day and then work up.  

Definitely call your doctor about your symptoms.  I can't imagine that one vial would cause symptoms that continue today, but we just don't always react predictably.  Have you taken some additional antihistamines to see if it helps?

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« Last Edit: 03/13/12 at 18:28:43 by Joan »  


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Re: Gastrocrom questions
Reply #4 - 03/13/12 at 08:09:25
 
Hey Joan,
  Thank you!  I definately call my doc!!  My ears ring a lot - I always thought it was one of the joys of Hashimoto's disease.  Betty Davis was right....getting old ain't for sissys!  Cheesy
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Joan
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Re: Gastrocrom questions
Reply #5 - 03/13/12 at 10:15:51
 
It could be Hashimoto's, too.  I have both.  But I do notice the ringing more when I'm taking Gastrocrom.

Mast cell disorders aren't for sissies either!  Grin
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lynda51
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Re: Gastrocrom questions
Reply #6 - 03/15/12 at 14:05:12
 
I have been on Gastrocrom for almost 4 months.  It is the only med that has allowed me to eat any food at all!  It also stopped the horrible bone pain I had. Cheesy

I am ONLY up to 3 vials a day.  With the help of others on this site, I learned that "slow" and"steady" is better for me!!  I started with 1 TBS per hour in 16 oz. of water.  I still can't drink it all at once without severe dizziness and tachycardia.  If I drink it on an empty stomach I get nauseated.  So I start after lunch and finish the last bottle about midnight.  I put it in a water bottle and mark it "meds" and sip it all afternoon and evening.  When I asked my doc he said to take it whatever way worked best for me.  I think the key is that everyone is different and you have to experiment with what works best for your body, and as always, minimize the side effects.

One thing I haven't been able to find out (from a pharmacist or anyone else) is, "Is it as effective when it sits for awhile?" I keep a cap on the bottle.  Obviously at the cost it is, one would like to get the maximum benefit from it.

One thing you do want to remember.... it comes in a foil packet and you need to keep the vials in in the foil.  If they get too much light and there is a cloudy look to the liquid, do not use them!  

Sorry girls...too funny about the "ringing ears"....mine do that too and I also have Hashimoto's..I wonder which doc can answer that question for us! Wink

I wish you the best Aggiegirl!
Hugs, Lynda
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Re: Gastrocrom questions
Reply #7 - 03/16/12 at 04:12:10
 
I just wanted to add I have been on it a week and I have been sooooo sick, I just got out bed  yesterday, but today I feel so much better.  I'm glad I didn't give up, I think they should tell people that you will feel horrible for a week or so. I was extra sensitive to foods too.  I broke out in hives because my steak had pepper on it, this hasn't happen in since before I started on ketotifin. My pain is slightly better but it has only been a week!
Don't give up!
Pam Smiley
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