Mast Cell Disorders Forum - intolerance for H1 blockers

jenwic

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intolerance for H1 blockers
02/21/11 at 15:21:58

I have tried Claritan and Zyrtec (tiny doses of the liquid) and with both I felt like I was getting adrenaline rushes the whole 24 hours they were in my system. I would wake up at night with my heart racing too. I am hoping to get a prescription from my allergist and try a different one.

Have any of you had trouble tolerating antihistimines? That seems impossible, but apparantly not. I have trouble tolerating many meds.

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chaco

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Re: intolerance for H1 blockers
Reply #1 - 02/21/11 at 16:05:13

Do you think it could be the so-called inert or inactive ingredients that you're reacting to?

I have had adverse reactions to most meds I've tried, OTC, homeopathic and Rx. The few I can take must be specially compounded with no additives.

My son can't take Benadryl. The last time I tried, maybe 15-20 years ago, it made me hyper, break out in a rash and I couldn't sleep for several days. Given how much my drug intolerance has worsened since then, I would not be open to giving it another try now. My doc says that rules out hydroxzine for us as well.

Yet my response to pure cromolyn sodium in combination with chlorpheneramine has been nothing short of profound. As long as I adhere to my diet, avoidance plan and nutrition therapy, these two drugs stabilize my remission.

Be informed I'm still in process of being worked up for masto, had my 2nd bone marrow this morning, so do not have a masto dx yet.

Deb Mc

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Kim Guiding Light Offline Posts: 137 Rapid City SD	Re: intolerance for H1 blockers Reply #2 - 02/21/11 at 16:33:27 Deb Mc; Can you tell me how long it took for you to see a profound difference in your sympotms after starting cromolyn sodium? Thank You, Kim
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chaco

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Re: intolerance for H1 blockers
Reply #3 - 02/22/11 at 02:59:36

Overnight. For the first time in my life, I didn't wake up nauseated. My flushing improved greatly, too. It happens less frequently now and is not nearly as intense, although I still flush daily. Most importantly, it has stabilized the remission of my EDS and myopathy, my most painful and disabling symtoms. Since starting the cromolyn, I've not had any real relapses or dislocations, nor have I lost use of my hands or any body part, and my GI problems have improved so much I can say that they're better now than anytime previously in my life. I just turned 53. My muscles have more energy and endurance; I can stay on my feet longer without getting back spasms.

I can't say for sure if it's related, but I am getting less infections, too, and suspect the cromolyn and chloropheneramine have something to do with that as well. Yesterday at the hospital, my wbc was still low but higher than usual (2.6) - whatever the cause, I'll take it.

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Kim Guiding Light Offline Posts: 137 Rapid City SD	Re: intolerance for H1 blockers Reply #4 - 02/22/11 at 03:26:47 That is so AWESOME!! I am so happy for you! I bet you feel like you have been giving a second chance at living life to it's fullest!!!! Kim
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chaco Tutor Offline Posts: 61	Re: intolerance for H1 blockers Reply #5 - 02/22/11 at 03:45:22 Yes, I do Kim. I got my life back. I want the same for my son and for your daughter. Deb Mc
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jenwic Tutor Offline I Love YaBB 2! Posts: 43 southern Ohio	Re: intolerance for H1 blockers Reply #6 - 02/22/11 at 07:54:04 Are these meds you mentioned taken orally or inhaled?
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chaco Tutor Offline Posts: 61	Re: intolerance for H1 blockers Reply #7 - 02/22/11 at 09:33:49 Orally. Again, boths meds are specially compounded. The cromolyn is pure with no additives. The chloropheneramine is pure but they needed a filler so I brought in pure DE and they used that. Deb Mc
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Sandi

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Re: intolerance for H1 blockers
Reply #8 - 02/27/11 at 08:35:23

Jen, I'm with Chaco on the fillers, especially the liquids they have tons! I'm also ridiculously sensitive to fillers, Chaco you've peaked my interest on the chloropheneramine, I've got to get some more meds into my system, I've been pretty ill the last few weeks straight again, I mean it's never "wonderful" but I can fight it. Not lately, and frustratingly feel to week to "challenge" the bod with a new med and also gotta watch the $$$. For me benadryl is my lifesaver along with allegra, but it is in no way enough along with very strict diet and chem free exposure as you are. Jen it's frustrating to try the same medication just because the inert ingredients are different but you may want to. You have to kind of gauge it, your reactions sound pretty severe but again the gunk they put in that stuff to make the syrup I believe is "much worse" that what they pack in a little pill. Being aware of the dyes, etc.

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Josie

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Re: intolerance for H1 blockers
Reply #9 - 03/01/11 at 02:56:24

Hi all .

This is fascinating for me , I have the biggest problems with corn filler , gelatine , cramel colouring and alcohols and vinigars .

I have all clear liquids inc antibiotics when I need them am doing much better . less bowel swelling and cramps . less nausea , dizzyness , fast heart beat , blood pressure changes .

I am glad others are finding soloutions to these problems

Josie

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jenwic Tutor Offline I Love YaBB 2! Posts: 43 southern Ohio	Re: intolerance for H1 blockers Reply #10 - 03/02/11 at 09:01:19 Josie, What do you mean by "all clear liquids inc antibiotics"? Sandi, I have considered trying the zyrtec pill instead of the liquid but I would want to try a small dose at first. The pill only comes in one strength doesn't it?
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Riverwn

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Re: intolerance for H1 blockers
Reply #11 - 03/02/11 at 09:25:48

The Zyrtec comes in 10 mg OTC... just try one of those meds at a time (a day or so) and see which is bothering you.

Im doing great on most of my meds but... started GastroCrom and it all went to heck.. Probably my own fault.. it tasted ok to me and i started with how it was Rxed.. I didnt build up slowly.. anyway,.it ended up with all 3 times I tried it, with nausea and vomiting all night. How did most of you start and work your way up??

I can tolerate corn and caramel, but the alcohol and vinegar are sure trips to the hospital for me! I dont tolerate most antibiotics well now... Id love to try liquids.l. I just have to make sure there is NO aspartame in it with the flavoring.. aspartame is a BIG trigger for me.
Hugs
Ramona

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~~~Count Your Blessings!~~~

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Joan

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Re: intolerance for H1 blockers
Reply #12 - 03/02/11 at 11:22:42

Hi Ramona,

So sorry that happened to you! Yuck. I don't understand why, but I also have to "sneak" new meds and supplements into my body at a dose that it won't "notice," and then work up. It seems like it's always "on alert" for anything new so it can attack!

I started gastrocrom by taking 1/3 - 1/2 ampule in about 8 ounces of water, and only after eating something. After a couple of days I cut back the amount of food until I could take it on an empty stomach. Then I cut back the water to the recommended amount over a period of days.

My GI doctor said he thinks it works the same with or without food. I think it was better without, but only if it didn't cause other symptoms. I finally got up to 2 ampules, 4 times/day, but it was too much and seems to have caused ringing in my ears. It's a rare side effect, and very annoying! Has anyone else gotten that?

Good luck!!

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Joan

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Riverwn FORUM MODERATOR/ADVISOR Offline Posts: 993 Gainesville, Florida	Re: intolerance for H1 blockers Reply #13 - 03/02/11 at 13:15:39 Im gonna take your advice and try it like that! thanks me
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Josie

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Re: intolerance for H1 blockers
Reply #14 - 03/03/11 at 08:14:13

Hi All ,

By all clear liquids I mean - liquids that have no colouring or flavouring . just med and stabiliser .

It has taken me time to hone down brands

bear in mind I am in the UK . martingdale have produced a safe hydrocortisone dose . Ceterizine ( zyrtac ) is generic and ranitidine is trade .

the only tablets i have contain talc and potato starch xxxxxxxxxxxxxxx

if I could find a pharmacy that makes what i need i would be over the moon . I have to work hard , with checking ingerdients , to keep myself safe xxxxxxxxxxxxxxxxxxxxx

Aspartamine is ok for me , sodium leueth sulphate is a complete no , the amount in toothpaste is enough to make me itch . Orally its major for me xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

hugs
Josie

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