Mcad But Can Not Take Anti Histamine!!!

[diamondcut]

Ok so i believe i have possible MCAD, due to the fact that i am so allergic to meds all the time, plus with the POTS and EDS it all seems to fit the puzzle.

So i thought i would start my own self medicating with H1 and H2 blockers. Did fine with the Zantec, but the Zirtek was very scarry and i did try taking a 2nd pill just to confirm to myself it was resposable for the reaction and it was very clearly.

Now my question is next month i was going to go to a Mast Cell expert in the UK. But what happens if i can not take Anti histamine? Does this mean i do not have Mast cell issues? I very much doubt this becuase i can fit the profile with itchyness, wheezing and a very super sensitivity to any drugs.

What do you do to treat mast cell in this case?

[issie]

Lots of us are having issues with the H's. I seem to do better on H1's and Nasal Crom. I'm also using quercetin, Vitamin C and B-Complex. There is also an herbal that I use when things are bad. I occasionally use a half of a Zantac too. I think I do better on Tagament - then the Zantec - but found out that isn't so good for mast cell issues. Haven't tried it again in awhile. You're not alone with the issues with H's. There are a few of us having problems with them.

Issie

[DoozlyGirl]

diamond,

I'm sorry to hear you are reacting to the antihistamines. It may be the active ingredients, but it could be the inactive ingredients, such as the FD&C dyes (colors with a number, such as Yellow #5, Red #40, Blue # 1) which are known mast cell degranulators. These are called azo dyes in the mast cell literature. I go into anaphylaxis from Yellow #5 and #6 dye and to a lesser degree to the other numbered dyes, but seem to tolerate the oxide dyes. These are often written as red oxide or red oxine and also come in yellow and black. Zantac has the red oxide dyes. I have written many times on this topic, so feel free to search my posts and you'll find more details if you think this may be the case for you.

Some are reacting to inactive ingredients, such as lactose or citric acid. And yet others react to a source of the inactive ingredient, such as corn or gluten or soy.

There are dozens of antihistamines as well as dozens of formulations to try. You can also try to start out slow, take a 1/4 or 1/2 of the pill for a week and if goes well slowly increase the dose. Once you found a H1 that works, add in a partial dose of H2. Many of us have to take antihistamines 2-4 times a day. I always take a H1 at the same time as a H2, as I've read it works best in combination. Some even have to have their meds compounded without any fillers.

For example, I tolerate the following H1's:

• Zyrtec tablets and liquid gels as well as CVS cetirazine (generic Zyrtec),
  
• Dye free brand Benadryl liquid gels and Walgreens dye free diphenhydramine (generic Benedryl) liquid gels
  
• Brand Allegra and Target fexofenadine (generic Allegra) - oxine dyes only
  
• Prescription Hydroxyzine tablets (white ones)
  
• Walmart Equate loratidine (generic claritin)
  

And the following H2's:

• Walmart Equate famotidine (generic Pepcid AC)
  
• Brand Zantac - oxine dyes only
  

Good luck with this trial and error method of finding a antihistamines.

Lyn

[anaphylaxing]

Such an unfair combination isn't it? Need meds but sensitive to them. Yes many people struggle finding meds they can tolerate. There are heaps of types of H1 blockers, then there are mast cell stabilizers too. Oh and as Lyn said sometimes it's the inactive and not the active ingredients that might be causing you issues. So find out what the inactive ingredients are in the one you took so you can cross reference in the future if other meds with the same additives give you issues. Glad you're tolerating Zantac. Noticed any changes?

Do you normally get reflux?

[diamondcut]

Thank you all for your answers. Sounds like i still have options here so i will not give up just yet.

I shall try some of the liquid dye free versions and see how that goes for me.

In response to question above, i do get reflux and take PPI's a few times a week just to keep the acid level down before it starts to burn.

Many thanks.

[anna]

Any chance you could let me know who the Mast cell DR. is please still trying to get to the bottom of the weird and wonderful issues myself and the kids have, thanks.

[jrlehnardt]

i did not tolerate the zyrtec at all either. i can tolerate zantac and i did benadryl for a few months before my doctor switched me to cyproheptadine which i tolerate well too. so dont get unmotivated, just know that that kind doesnt work for you and try a different one.

[Anoj]

FYI, i tolerate Allegra well. it seems to be the best one (for me) without side effects.

[issie]

I do okay on Claritin and Nasal Crom - but, can't find an H2 that is good for me. Are there only two? Zantec and Pepcid? Other than Tagament - which we are not supposed to use.

Issie

[DoozlyGirl]

I did a quick search and several sites listed only 4 FDA approved H2 blockers(said they are available OTC and prescription) in the US:

• Cimetidine (Tagamet)
  
• Ranitidine (Zantac)
  
• Famotidine (Pepcid)
  
• Nizatidine (Axid)
  

There are likely other available H2s in other countries.

Tagamet not only inhibits DAO production, which is necessary for histamine breakdown in the body, it also inhibits the P450 enzyme pathway in the liver and causes issues with detoxifying a host of other meds, most notably propranolol.

Zantac is said to have been devolped from cimetidine and is much stronger without the negative safety profile. Famoditine is said to have even fewer safety issues or adverse drug reactions in general, but is less potent than ranitidine. I have yet to hear of other mast cell patients taking nizatidine, so not sure if that H2 blocker is an good option, but it would be worth a review for someone who doesn't tolerate the other H2 blockers.

I have read of patients who needed to be put on a mast cell stabilizer, as Ana mentioned, before they could tolerate a H1 or H2.

Good luck finding antihistamines you can tolerate.

Lyn

[issie]

Wouldn't the Nasal Crom be a mast cell stablizer? I also have an allergy eye drop Ketotifen - don't use it a lot - but some.

Pepcid makes me feel worse than Zantac. It really causes my stomach to hurt. I tried to find a Zantac without the Red dye and the only other one has Blue dye with a mint flavor - ugh, don't like mint. So, couldn't find anything without dye added. Thought maybe that was the issue.

Just had to go use my Nasal Crom and Claritin - having issues right now and not seeing the results I need with just those two. Have some Zantac - and will probably take some of it anyway. But, it causes some bad constipation issues with me. I know there are others having the same problem with the H2's. Wonder if lowering our stomach acid too much is the issue with it? I didn't know that Tagament affected liver function. I have some bad liver problems and know that my P450 pathway doesn't work correctly. Don't need to add to the problem.

Thanks for the info. Never heard of the last med. Nor have I seen it.

Issie

[DoozlyGirl]

Issie,

Nasalcrom, gastrocrom and ketotifen are mast cell stabilizers and the ketotifen also has H1 properties. I couldn't find a dye free Zantac either, and I stay away from the 75 mg due to the blue dye (Blue #1 if i recall properly). Zantac 150 mg has red iron oxide, and I have yet to find any reference to this dye causing mast cell issues. There is plenty of convincing documentation linking the FD&C numbered dyes to mast cell degranulation.

I too wonder about the long term effects of lowered stomach acid and lowered pH. These H2 and PPI meds are only approved by the FDA for 2 to 6 weeks of treatment time. I will take digestive enzymes when needed and regularly take a good multi-strain probiotic. I also add psyllium to my daily smoothie. I miss each of them if I skip em.

Lyn

[issie]

I've always used enzymes and probiotics ---daily. I try to get away with not using the H2's unless the attack seems to be bad. But, have to use the Claritin. I've also added Quercetin and Vit C and B Complex ---these all seem to help too. I have another supplement called "Respiration" - that also helps with allergies. I've found with seasonal type allergies and even with a mast cell issue - taking any where from 2 to 4 of those throughout the day - really helps. I'm hoping that I can get away with this combination and only use the H2's if I feel an issue coming on. Like the other night ----I had to take everything I could think of and it was still a BAD one. We never know what will trigger an issue.

Issie

[Dizzysillyak]

I'm in a similiar boat. I found that I can take target dye free children's benadryl but only 1/4 - 1/2 tsp at a time. Even that makes me feel loopy tho. I'd never try to drive like this.

I've been getting swelling in my neck / throat area off and on for the last year and just learned for sure that I'm allergic to metagenics probiotics. And these are $54 for 30 pills. I also did this from candidase and virastop last year.

The benadryl works for this if I let it dissolve slowly in my mouth. But I'd like to stop this from happening if there's a med that could work without making me loopy.

I tried nasal crom yesterday and it semed to help but not as much as the benadryl. It dried out my sinuses a little on the first dose but taking a second dose 8 hours later made me feel waaaay too dry. I couldn't fall asleep. Heck, that was over 16 hours ago now and my sinuses are still too dry.

My digestive problems are pretty much controlled via wahls diet, gas-x, natural calm and ginger tea.

I use natural calm nightly because it helps keep me regular. I'll use it during the day after meals if I get gastroparesis though. It seems eating too much meat brings on my gastroparesis so I'm down to 1/4 lb spread out throughout the day. It's just that sometimes I can't resist a hot freshly cooked steak. : )

Thanks for starting this. D

[nmorgen]

Has anyone used clarinex? I find that it helps me a lot. I also use allegra, tagament(when needed) and nasalcrom.

[Dizzysillyak]

Are allergists helpful here ? The one I saw years ago ran tests and then just took a stab at what meds might help me. I could've tried different meds without the doctors appt. Are the prescription meds any better than otc ?

I was thinking of trying an inhaler for my throat swelling symptoms. Do these work ? Or is there a med for that ?

Btw. My allergies are worse when I'm eating foods I'm allergic too. However keeping up with what I'm

allergic is a real pain.

Thanks .. D