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Side Effects of Gastrocrom (Read 12179 times)
texan1960
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Side Effects of Gastrocrom
01/23/12 at 03:36:26
 
Hi Everyone!  

Haven't been on in awhile...got my tests back and my tryptase was not too high 4.5 or 4.6 I think. All my IG's were good too.  However, we are trying a trial of Gastrocrom.  I am supposed to be taking 6 vials a day.  Rigth now I can only manage 1 and still have to take immodium and antacid to stop GI disturbances from the med ( I am the side effect queen).  Question...do side effects wear off like so many meds do over time?   I have taken it a week and it does seem to helping muscle/joint pain so I hate to give up.  Could use a little advise on whether I should keep going. How fast do most people build up and to what dose?
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Joan
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Re: Side Effects of Gastrocrom
Reply #1 - 01/23/12 at 06:32:54
 
It's not uncommon for it to be a little challenging to get up to an effective dosage of Gastrocrom.  There are several things you can try, either one or all...

- Take it after eating for a while.

- Mix it with more water than usual, even a pint, if necessary, and drink it over a longer period of time, e.g., a tablespoon at a time every 20 minutes, or whatever works without stirring up symptoms.

- Revert to a dose that doesn't cause a reaction, like 1/4 or 1/2 vial and then work back up.

- Increase your H1 and H2 antihistamines to see if that eliminates the side effects.

Sometimes it's not a straight line increase.  Don't worry if you find you have to go back to a lower dose for a day or so if you're having more symptoms.  You should be able to go up again soon.  With new meds, it's not uncommon to have to slip it in "under the radar" of our over-excitable bodies!  I always have to start meds and supplements very slowly and in tiny dosages and to work up.

Let us know if that helps!  Hope so.

Joan
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texan1960
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Re: Side Effects of Gastrocrom
Reply #2 - 01/23/12 at 06:55:18
 
Thanks Joan!  You always seem to be there to help out!  I will try and stay at a vial and drink it slowly during day for a week or so (taking symptom control meds) and then work my way up from there.  I would love to find a solution to the joint and muscle pain and drop back Lyrica...we shall see how this goes!
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Re: Side Effects of Gastrocrom
Reply #3 - 01/23/12 at 11:23:51
 
I take 200 mg four times a day. I didn't notice any side effects but was so sick when I started there may well have been Smiley

Keep us posted!
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Joan
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Re: Side Effects of Gastrocrom
Reply #4 - 01/23/12 at 13:01:44
 
I went 16 years without a diagnosis so figured out a lot on my own.  Then more once I knew what was wrong, had better docs, and this forum to help me!  However, not everything that worked on me actually works on others.

I found that my horrible pain, felt like muscle and joint, went away when I went to a higher dose of antihistamines.  That might not happen for everyone, but it has for several of us on this forum.  Diet makes a big difference in pain level for me, too.

 It's always great to hear when someone is getting better!  Glad to hear the Gastrocrom is helping with yours.
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« Last Edit: 01/24/12 at 05:01:57 by Joan »  


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lynda51
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Re: Side Effects of Gastrocrom
Reply #5 - 01/24/12 at 08:45:33
 
Hi tex,

I started on Gastrocrom 7 weeks ago.  I had a lot of trouble when I started and Joan gave me the same good advice.  

I took one TBS in 16 oz. of water every hour for many days before I could even go to every 15-20 minutes. It has been close to two months since I have started on it and I am up to two vials a day.  But there are days I back off to 1 1/2.  I also find that taking it before meals does not work for me.  I sometimes wonder if it is too much for the mast cells.... to have deal with a new med that may be aggravating them as well as digesting food (which triggers mine).

I have to eat 2 meals before I can even start to drink it.  So I have breakfast and lunch and start at around 2:00 and drink the 2 vials at intervals between afternoon and bedtime.  I still have palpitations and dizziness and tachycardia if I drink too much at once.  But I refuse to give up!  I can eat some things again and my bone pain is completely gone!

As we all know, everyone is different and I keep hearing from the experienced persons on this board (and from the docs)... each one of us has to do what is best for us!!

Hang in there...it sounds like you are doing exactly what you need to be doing!  

Hugs, from one "side effect queen" to another!  Smiley
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Re: Side Effects of Gastrocrom
Reply #6 - 01/24/12 at 09:37:04
 
I've noticed lately that in the mornings half an hour after my cromolyn I get nausea, but maybe it's hunger pangs or steroids related for me

Ana
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texan1960
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Re: Side Effects of Gastrocrom
Reply #7 - 01/24/12 at 09:39:55
 
Thanks everyone!

I am dealing with it a bit better.  Putting a vial in a water bottle and sipping on it all day "literally" at my desk.  I plan to make the solution a bit stronger each week.  

Joan-Not having a clear diagnosis is frustrating for sure...diagnoses I do have include a potpourri mix of IC, GERD, IBS, Fibro, allergies, and asthma (alphabet soup).  

My tryptase labs didn't look bad, so I guess the good news is nothing is systemic.  

Interestingly the new allergist said they try gastrocrom sometimes on people who have excercise induced "D"...don't usually have that, but have had hives and get a flu like stiffness if I exercise too much.  Plus, there is that problem of me being a human barometer haha!  So, I am hoping the gastrocrom will stabilize me enough that I don't react to every dang weather change (completely heat intolerant)! ...otherwise they are thinking about hiring me on the weather channel!  

Big hugs to all who gave me some suggestions.  I honestly am running out of meds to try that I can tolerate (singulair, allegra, claritin all give me side effects)...yes, anthihist do help (zyrtec and zantac I can tolerate) and are also a mainline treatment for IC, I pray that gastrocrom will help even more.    

I often fee like I balance helping one problem without causing more symptoms in another problem...a fine line we walk I guess!  Helps to have advise... Grin
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Joan
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Re: Side Effects of Gastrocrom
Reply #8 - 01/24/12 at 10:37:10
 
Ramona said that hydroxizine (Atarax) is a good antihistamine for IC, and I've also read some articles about that.

For me, weather changes were really bad for pain.  Moving to a climate without many weather fronts moving through was helpful.

One other thought is to try building up on other meds as you are on the Gastrocrom.  If they're available in liquid form, you can mix a tiny bit with a lot of water and try it.  If you had anaphylaxis to them, though, it's best to permanently cross them off your list.

One theory explained to me by an allergist at a major med center is that when the GI tract gets irritated enough, it becomes more permeable.  Then too large of molecules can get into the bloodstream causing the immune system to think it's being invaded.  In that case, almost anything will cause symptoms.  In addition to the usual H2 blockers, I found l-glutamine to be very helpful.  Of course, run anything new by your own doctors if you want to try it, and it's never recommended to try more than one new medicine at a time.  (Guilty of that and paid for it! Sad )
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Re: Side Effects of Gastrocrom
Reply #9 - 01/28/12 at 01:03:09
 
texan1960 wrote on 01/24/12 at 09:39:55:
...diagnoses I do have include a potpourri mix of IC, GERD, IBS, Fibro, allergies, and asthma (alphabet soup).  

All of these disorders have either been proven or suspected to involve mast cells... so I'd say you're on the right track!  It's not easy to figure out the right mix of medications (especially when you're the kind of person who's very sensitive to new medications).  Hang in there Smiley

Heather

ps - My mom has fibromylagia and thought I might have it too, but once the Gastrocrom kicked in 90% of the pain went away.  I still ache from sudden changes in weather, but nothing like before!
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texan1960
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Re: Side Effects of Gastrocrom
Reply #10 - 01/30/12 at 06:56:47
 
Thanks!  Yes, I think there is a mast cell connection to all this mess!  I am up to 2 to 3 vials a day and my joint/muscle pain seems to be lessening.  I am also taking a zyrtec and zantac every day.  I have also tried Atarax for IC as mentioned above...it helped but made me too tired and I work full time. So, other than ketotifen and xyzal, one of my last stops is cromolyn. The real test will be when the weather turns warm, that is when it all goes totally bonko (is that even a word? haha!).  Thanks for the support, I will hang with it.  Been in this game for about 10 years, so I am a patient person at this point.  Thanks for everyone's support!  I wish a pain free, symptom free day for everyone who stops on this board.
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larken
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Re: Side Effects of Gastrocrom
Reply #11 - 01/31/12 at 19:35:05
 
I have been taking Gastrocrom for about 4 months now and I have no doubt that I am reacting, both positively and negatively, to it.  On the upside, it is helping my symptoms.  But, I am feeling like it makes my mind race and I find it even more difficult to concentrate.  Sometimes my heart races, too, and I have trouble falling asleep.  (I have ruled out other possible causes pretty carefully).    

Thanks to everyone for the advice on alternative dosages!  I will try putting it in more water, etc.  I have tried as low as 200 a day, at the recommendation of my doctor, but it only helped a little and there were break-through symptoms.  

I already know that I react to Ketotifen, as well, so I am running out of options!  I need to give the Gastrocrom a shot at a much lower dose, be patient in building over time, and hopefully that will work!
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Re: Side Effects of Gastrocrom
Reply #12 - 02/01/12 at 13:09:23
 
I could not take this at all, had tachycardia and severe diarrhea and I ws on the smallest dose, I usually don't give up on a medication but I could not tolerate this, as soon as I stopped the diarrhea stopped and the tachy got much better it was also making me SOB. NOt too mention the obsene cost. My insurance upped our monthly payments so much I think this drug was partly too blame not too mention all the hospitals and Doctors I had seen in the last year.
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