Mast Cell Disorders Forum - New here, antihistamines problem

crisf

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New here, antihistamines problem
04/28/14 at 23:41:04

Hi everyone,
I have been diagnosed of MCAS two years ago. I am taking oral cromoglicate but I have a lot of problems with antihistamines. All of them (including ketotifen) give me huge reactions: tachycardia, insomnia, chest or abdominal pain, anxiety, etc. I have tried very small doses but symptoms are still there
Anyone with these problems with antihistamines?

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Starflower

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Re: New here, antihistamines problem
Reply #1 - 04/29/14 at 07:11:13

Allegra gives me headaches. For a long time I couldn't take Zyrtec at night because it gave me insomnia. Anything is possible with people like us Undecided

Do you feel the same way with H2s or just the H1s? Do they do anything positive for you? Taking antihistamines on a daily basis keeps me out of the ER and free of chronic hives. Thankfully, I don't get a lot of side effects.

Heather

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We're all in this thing together
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This life don't last forever
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crisf

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Re: New here, antihistamines problem
Reply #2 - 04/29/14 at 23:20:59

Thanks. My main problema is with H1s. H2s give me headache and somnolence. But H1s are a nightmare for me, even a very low doses. They give tachycardia, nervousness, insomnia, chest pain, abdominal pain... My nausea and my diarrea are better with them but it is not worthy...
However my histamine level is high and I am supposed to need antihistamines Angry

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mountain girl

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Re: New here, antihistamines problem
Reply #3 - 04/30/14 at 04:52:59

Forgive me if you have already read this somewhere else..but you could just be allergic to the fillers in the medicines. Some mast cell folks have to get all of their medications specially made with no fillers or preservatives at a compounding pharmacy. There has been a lot posted on the topic and you should find it if you run a search.

Good Luck to you...I know this can be so hard and frustrating.

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crisf Rookie Offline I Love YaBB 2! Posts: 3	Re: New here, antihistamines problem Reply #4 - 05/01/14 at 09:52:57 Thank you. Yes, I have problems with some fillers but I have tried several antihistamines which have different fillers, so I am not sure if this could be the problem. Getting compounded antihistamines is hard but I could try...
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Ginny

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Re: New here, antihistamines problem
Reply #5 - 05/22/14 at 01:29:38

I'm new here....first post/reply. I have the same problem with taking antihistamines, or any meds for that matter. I get a big time shock/episode with 20 minutes of taking the med. Mi have tried compounding and the same thing happens. I'm sick and lost. I live in Maryland and need a creative, dedicated doc. There is no way I could make it to Boston.

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kesasur Tutor Offline I Love YaBB 2! Posts: 64	Re: New here, antihistamines problem Reply #6 - 05/22/14 at 03:09:47 I wonder if you could tolerate the neuroprotek that Dr. Theo's company produces as an alternative to the antihistamines? http://algonot.com/neuroprotek.php I know many have had huge relief from this. Others can't tolerate it. Again it's like anything else...but it is NOT an antihistamine. kelley
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lynda51

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Re: New here, antihistamines problem
Reply #7 - 05/23/14 at 18:02:34

Hi crisf,

I too react to all H1's, even Benedryl! I have compounded both benedryl and claritan and still reacted to them.

With the 'help' of my other mast cell medications, I was able to get the Ketotifen on board. It took many months, but the trial and error has been well worth the effort.

I know we are all different, but there are many of us that are extremely hypersensitive. I can not tolerate any fillers in any of my meds. I have everything that can be compounded made without fillers and dyes. i even react to the gel caps that the compounded meds are put in, so I open them and dump them in a glass of filtered or distilled water and drink them right away. Technically compounding pharmacies have to add at least one ingredient in order for them to be legal and covered by insurance. Can you tolerate potatoes or rice? Using a 'staple' that you normally can eat works well. If I have to use something, I use organic rice flour.

What I find when trying to get a new medication on board, is that our mast cells react to the meds we need just like they do to the foods that we are intolerant to and the smells, etc. So I start by taking a mast cell medication I know I can tolerate 1/2 hour before starting a new med.

When I started the Ketotifen, I had it compounded in liquid and i started with three drops. I had a reaction. So I waited 3 days and tried ONE drop. I did not have a reaction. So I took one drop for three days, then I increased it to two drops for three days. On the 7th day, I added a third drop and had trouble so I went back to two drops for another 3 days. After that I added the third drop and had no problems. I continued to add one drop every three days until I reached the optimum dose.

As Joan always tells us, 'sneaking it in under the radar of our mast cells' before they catch on, is our goal!

Even now when I am in a flare, I add my cromolyn to the Ketotifen (I mix them together in 20 oz. of water and drink it slowly) because the Keto can make me dizzy on bad days. The cromolyn or sometimes a benzodiazapine can be helpful to stabilize us enough when we know we need to take something that can help us.

Sometimes there are unidentified triggers that keep us from being able to get on meds as well. For me, it was my daily medications that contained too many mast cell degranulators. My bucket was full before my day even began. Once I compounded most of them, and went off all the ones i didn't absolutely have to be on, I had much more success getting my mast cell meds in my regimen.

I hope this somehow helps. I wish you the best. Lynda

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Britt

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Re: New here, antihistamines problem
Reply #8 - 05/24/14 at 13:28:45

Hi crisf! I had a terrible time trying to go on both cromolyn and ketotefin. When I finally got the doctors to give me a prescription for these two drugs, I felt like I had won the lottery! I was so excited and had such high hopes. Sadly, I couldn't tolerate either of them. Cromolyn made be feel off, and I had really bad GI issues and vomiting with it, even at one drop. After taking ketotefin for 2 days, I had an angioedema episode that lasted for 2 weeks. Unfortunately what works for some may not work for others:( keep trying! As starflower once pointed out, there are a ton of antihistamines out there! I'd like to try them myself!

I am very interested in how ladybug and mountain girl do on Xolair. I'm holding on to the idea that this could be my last straw at a chance of getting my system somewhat under control.

lynda~
I'm starting to think my bucket is already full before my day begins because of fillers too.
I was wondering what fillers you have found to be most problematic for you? I know we're all different, but I'd like to hear them as some things seem to be the same for us mast cell people! I too have major issues with gel caps! It doesn't seem to matter if they are animal based or plant based, they still bother me. I also think I have issues with glycerin, which is in most meds.

On the topic of medications I have a question I would like to ask you all....

I take ibuprofen like its candy (within proper limits of course) but I do take 600 mg twice daily for headaches.
I know I have a salicylate sensitivity, and I know that the urticaria society warns us not just for aspirin, but for NSAIDs as well. But ibuprofen seems to be the only thing that touches my headaches, so I've kind of put that warning on the back burner. Tylenol doesn't do anything for me:(

I have been really "active" lately and not feeling well at all. Worst I've felt in some time.

I've been looking at what I do everyday that could be causing this ( aware that it could be the season). But this morning I started thinking about the ibuprofen. Up until about 2 months ago I took Advil liquid caps; but then they reformulated and added coconut oil so I had to switch to a generic liquid gel cap.
None of the ingredients are a red flag for me as far as I know. But maybe there are some nasties ones in there for me. Or could it be the ibuprofen itself?

I decided to test my theory and haven't taken any today. I'm muddling through my headache. Ugh.

If anyone has any thoughts or experience with this, I'd love to hear it! I'm really hoping I'm on to something here and I can start unloading some of my bucket! This has been a very long flare. I can't take much more Sad

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Britt

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Re: New here, antihistamines problem
Reply #9 - 05/25/14 at 17:05:58

Sorry for all my doom and gloom posts, and what may seem to be petty questions. This has just been a very long intense flare for me. 5 weeks without a break. It's been discouraging because its how I felt when all this started, before any medication.
Usually my bad flares are about 5-7 days. I just keep praying that I will wake up and I will have some relief. I know it's coming! Just hurry up already! Lol

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mountain girl

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Re: New here, antihistamines problem
Reply #10 - 05/28/14 at 23:56:08

Ginny,

I read that someone got a MCAS diagnosis from Dr. Matz in Owings Mills, MD. This person said he isn't sure if Dr. Matz is an 'expert', but he was aware enough to make the diagnosis and start treatment. That might be a good place to start. Depending on where you are in Maryland, it might not be too far for you to check out my doctor in Fairfax, VA.

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