My saga:

Dr. Afrin wants me on an H1 2X/day and an H2 2X/day.

I had already been on Hydroxyzine HCL 25 mg 2X/day for years and I want to get off them because the side effect of increase in restless legs is getting intolerable for me, as well as the fatigue and dry mouth.

Dr. Afrin recommended the H1's and H2's to take. I tried and failed.  See my last posting.

I called his office.
His nurse recommended that I take 1 week with any med change since she thinks that the changes are causing mast cells to degranulate.

Great, just great!


Boy, am I a work!!!!  I supposedly have MCAS.  I need to be on an H1 and an H2 2X/day........Yet.......trying to take the recommended meds in order to help myself is a very difficult, symptom-inducing, stress-inducing experience.  I get worse when changing anything.

So, is there hope for me?  

The nurse said that I am supposedly getting my mast cells worked up by introducing too many changes at once, so she gave me some ideas.

I am to wait one week after adding or changing anything.  If I am worse off after the one week experiment, I must discontinue the new med.

She suggested:

Add an H2 1X/day to my current regimen.  Wait one week to see how that goes.

Then substitute Claritin for Hydroxyzine HCL for 1 X/day.  Wait one week and see how that goes.

Etc. Etc.

The goal for me would be to get off my Hydroxyzine HCL all together, and use another H1 blocker....and also to add an H2 blocker 2 X/day to my regimen.

Is there any hope here?  Have others on this forum had to go through the painstaking process of baby steps in order to change meds?

I'm supposed to be helped by meds, yet the meds are causing me to feel terrible.  I am feeling like a hopeless case. Please, tell me this is not unusual and that there is hope for me.  Thanks.

Thanks, Lisa.

The reason I been having anxiety about all this is I have spent a year in Dr. Afrin's care, and a boatload of money to see him.

I have failed at everything he has told me to do up until now......possibly because I have not followed the "go slow" protocol well enough.

I have either taken a new med, and noticed nothing, or taken a new med and felt worse.  So I basically haven't changed much of anything in the past year.

So, my guilty conscience is prodding me on by reminding me of all the time, money and energy I've already used, including dragging my husband along to these doctor visits, and yet I've accomplished nothing in a year.

Well, I have accomplished one very important thing...I have a doctor who "gets it", and totally believes me when I tell him of my flares for which there had been no explanation prior to my MCAS diagnosis.

So, here I am a year later basically back to square one taking baby steps.

I have not understood up until now how sensitive I am to changes of any kind, including meds.

 I also cannot wrap my mind around the fact that I "supposedly" need meds to help my condition, even though they can cause flares?! I need them, yet they make me feel worse. No wonder I have been spinning my wheels for a year and had given up on trying anything new.

So, my conclusion after hearing Dr. Afrin last week, and reading all your posts is........YES, I do need more meds, but I am to add them on slowly, waiting between any changes.

It is tough to realize I need more meds, yet they can cause me to feel worse.  At face value, it makes no sense. But, that's how I'm seeing all this right now.

P.S.  And to add insult to injury, if I am having a flare, I'm supposed to take more meds, maybe another Benedryl or Claritin along with an H2.

Well, in my case, at this point, taking more meds is a sure fire way to get me to feel worse, not better, especially since I have not allowed my body to adjust to anything new.  

IOW, there is no set regimen for me to follow as of right now to stop a flare since I have not even obtained homeostasis on a routine basis, let alone during a flare. I need stability in my daily life first.  As of right now, I'm flaring pretty much every day because I am not medicated enough, I suppose. Patience. Patience.  This roller coaster will eventually end.

Kat,

If you don't mind my asking, how did you methodically test the meds you were already on?  Maybe I need to start from square one.

Thanks in advance.

Mikev,

It helped me to read your post because I realized (again) what kind of disabling, difficult medical problem I have and that I am not alone.

For me, fatigue has been one of my constant problems....so, taking a med that makes it worse seems counterproductive.  

The difficulty for me is that even though the fatigue is one of the issues I would most like to improve, there are other equally bad symptoms I could experience if not medicated enough.

For instance, I will experience debilitating bladder pain (interstitial cysititis) if I decrease my ingestion of Hydroxyzine HCL. Yet this med causes fatigue and drowsiness.  I don't need more fatigue and drowsiness, but experiencing bladder pain is intolerable at any level.

So I am caught between a rock and a hard place.  Don't take the med:experience horrible bladder pain but feel more energetic.  Take the med: decrease the bladder pain, but live with the drowsiness and fatigue.

I am obviously still adjusting to the fact that I am debilitated with this MCAS on a daily basis, and that improvement may or may not happen.  If it does, it will take time and patience.

Maybe I need to go speak with a counselor to help me cope with the stresses of all this? I do not really expect anyone else to understand the difficulties of my daily life unless they were in my shoes. But having this forum to go to is a big help because many of you experience your own difficulties on a routine basis. So, thanks y'all!

Something else I just thought of in reducing meds (or adding meds).  Some meds have what is called a rebound effect after you stop taking them.  What happens is you'll feel like your symptoms are getting worse when you stop the med, but then your body will even back out.  For instance, when I stopped taking Restasis for my dry eyes I found them to be really bad during the first week, but once I was off of the Restasis for two weeks they were much better and I felt ready to try ketotiphen drops instead of Restasis.   Same thing sometimes happens when you try a new med or increase the dosage.  It's good to research this or ask the doctor about it, so that you know what to expect and can give the new med or absence of the med a fair trial.

Go you with the Excel!!!  I would have offered to send you mine, but you figured out that it's really straightforward.  I would play around with the "split screen" function so that you can have your column of drugs "frozen" on the left while you can scroll through the weeks on the right...not a necessity, but it is handy once you've got weeks and weeks worth of info.

Experimenting with foods: YES!!!!  My GI issues have gotten worse over the past two years to the point that they are often my most debilitating problems.  I was dropping weight like crazy because I was nauseous and scared to eat anything for fear of feeling worse, even though I was starving.  I basically eliminated anything that the histamine diet said might be a problem and anything I seemed to react to.  AND I'm a vegetarian.  I now have a pretty small list of things that I can eat, but I at least have times now when I'm stable enough that I can try a new food and see if it bothers me or not.  I'd be happy to post here or email you my list of "safe" foods, which of course may well be different from yours.  (Heck, mine has changed over time.)

I think it's really important to be on as strict a diet as necessary to get your symptoms at least somewhat under control.  It sure helps you cope with everything else.  

Emotional stress is a HUGE trigger for me also.  I had one of my worst pseudo-anaphylactic reactions entirely because I was feeling really pressured to make a decision about visiting the in-laws.  If this happens, know that you might have to wait another week before deciding on any med changes because you had interference with your experiment.  If you haven't had anything going on that you can really put your finger on, then you can attribute it to the meds.  If you go for two weeks feeling worse than usual, I'd say you could attribute that to the meds.  Use your best judgement, which I know is hard to do.

The meds may impact your thyroid a bit, according to what Dr. Afrin has said, but if anything, it'll just make it more stable and maybe require less replacement.  Mine has been relatively stable for years, and I don't think any of the meds have affected it.

Another thing on all of these antihistamines:  Treat a change in manufacturer as if were a change in drug, so that if you try out a generic version of something, isolate that change to see how it affects you.  Be really careful to read the ingredient lists on any generics (and even name brands).  I've stuck to name brand Allegra and Zantac (buy them cheaper at Sam's or Costco) because they have iron oxide colorants rather than dyes.  I have also noticed a difference in effectiveness between name brand and generics.

And my personal opinion: I'd go with Allegra, not Claritin.  I went with Claritin first and got no help, and based on what everyone here had written, I went with Allegra and haven't turned back.

I think you're getting the idea on all of this, and I know it can be daunting, but it is necessary to work through methodically in order to figure out what will help you.  You are definitely not alone in your struggles.

My current list of "safe" foods, though during a flare nothing is really safe and I cut back to oatmeal and white bread and butter...

Organic Maple-Nut Oatmeal
Plain Bagel
White Bread
Butter
Cream Cheese
Egg whites
Black beans
No Yolks Egg Noodles
White rice
Lentil Crackers
Lentils
Plain pasta
Cucumber
Peas (regular, sugar snap and snow)
Zucchinni & yellow squash
Apples (Applesuce)
Citrus fruits
Olive oil
Brownies (from scratch) and similar baked goods
Ginger snaps (especially gluten-free)
Fresh head lettuce (not from a bag)
Gold potatoes
Organic heirloom-wheat ramen noodles (ginger/lemongrass)
Maple syrup & honey
Most herbs (NO spices)

I can generally tolerate (and supplement my diet with) Luna Bars (Lemon Zest and Peppermint/Chocolate) and Mojo Bars (Chocolate coconut and white chocolate macadamia)

Brownies were a big surprise.  I ate them thinking I wanted one and didn't care if I got sick...and I didn't get sick!  They are a staple in my diet now.  I don't know why I can do some dairy products and not others, but butter and cream cheese work well for me at the moment.

Feel free to ask me about specific name brands if you want to try some of these.  Lots of trial and error to find foods that are less likely to trigger but that still have some nutritional value!

Funny, but we're currently considering moving to Jacksonville, Fl.  I don't think I can take the heat farther south than that (and will likely have to go somewhere in the summer months as it is).  I really don't want to leave my GP behind, but she does telemed appointments, so I can possibly still see her while looking for a new doc!  I just want to live somewhere where I don't have to make a 10-15 minute drive (that I generally can't do) to get to things.

Hi Futurehope,

I hope I can help a little.  I am fairly new to all of this (last 2 years) and am diagnosed with Eosinophilic Esophagitis and Mast Cell Activation Disease vs Mast Cell Hyperreactivity just recently at the Mayo Clinic.  I also have PSVT (where my heart goes into a very fast rhythm for unknown reasons, but it's probably related to mast cell activity).  I had a severe food reaction in November (my 5th one) and it took me 2-3 months for me to feel somewhat normal again.  I agree with Kat completely that the diet is the most important thing to help you feel normal.  I thought I was eating the right foods for me, and wondering why I still had to take Benadryl every afternoon or evening.  I started the low histamine diet (strict) and started feeling better almost instantly.  Once I started feeling better after about 4 weeks, I started adding different foods in small amounts.  I eat a similar diet to Kat--it gets boring, but it works.  I can have bread, butter, olive oil, mushrooms, peas, beans, potatoes, peanut butter, cookies,  milk, cereal without food coloring, bananas, and some chocolate.  I absolutely cannot go out to eat ever.  I couldn't cook for 3 months because the smells made me react.  I take the Walmart ranitidine (Zantac) even with the red dye in it.  ( I take 150 mg three times/day for both diseases--I started with 75mg tabs and I ate food with it). The brand name Zantac bothers me--upset stomach.  I also take name brand Allegra (I started with half of one in the mornings, then went up to the whole one after about 2 weeks).  I rarely need the Benadryl now, but even 1 teaspoon helps me if I start feeling "jittery."  It helped me to distract myself after I started taking the new meds.  I would talk on the phone, or clean my house so I didn't think about reacting to them.  It worked for me, and I knew if something was really bothering me.  I took the Zantac for about 3 weeks (gradually increasing the dose), before I added the Allegra.  I was wondering if you can take Benadryl without problems, and if you take the hydroxizine at night?  What else are you on if you don't mind me asking?  I hope you have had some progress in taking the meds.  Good luck with everything and I hope you are feeling better  Sarah