Specialist Started Me On Protocol For Mcad....yucky Side Effects!!

[brethor9]

Hi all

So just recently my auto dr and internal specialist have come to the determination that I could be suffering from some sort of Mast Cell issue on top of POTS. They have started me on an MCAD protocol but I am having some undesireable side effects and could use some input.....to any other Masties out there did you suffer side effects at first and just bull your way through?

The protocol I am on is the following;

5-10 mg Zyrtec (this makes me feel super dizzy, sleepy and just out of it, chest tightness)

150mg zantac 2 x daily (this I have been taking for years and am ok on it)

10 mg Singulair (helps with the chest tightness but am experiencing headache and lightheadedness)

25mg atarax (to be taken at night, havent started yet...trying to add one med at a time)

0.25mg florinef daily (stable on this dose)

before I started the Zyrtec I had actually gone back to taking my aerius for kids which I have never had issues with and successfully took it for my allergies long before POTS....I dont have any side effects with it at all but it has a completely different chemical makeup from Zyrtec and not sure if its ok to take instead?

The worst thing is like everyone else with POTS I have unbelievable med sensitivity so even though I know my body needs these meds its fighting them every step of the way. I am also not sure of the timing of all of these meds?? I know I shouldnt take them all at once but how do you know how to stagger them out?

Any input is very appreciated

Thanks

Bren

[potsmomma]

Hi Bren, sorry you're having a hard time. I take one 180mg Allegra in the am with 150mg-300mg Zantac. Then I take the 10mg Zyrtec at night with a 150 mg-300mg Zantac and the Singulair. I think you are doing the right thing by adding one at a time as by the nature of mature cell disease, we are all really sensitive to medications. My mast cell doctor says that any time you start a new drug, you need to give it a few days/weeks because it will get things stirred up before it starts helping. If you're still having a hard time, than that might not be a drug for you and you need to try another. He actually had me try Claritin and Pepcid first because they have the least number of drug interactions but those didn't work for me.

Hope that helps a little!

[rubytuesday]

I'm sorry you're having such trouble with side effects. I was recently taken off my Mestinon due to side effects. I, too have the boatload of drug allergies/sensitivities. I take Allegra (doesn't seem to do anything for me--nor does Claritan), Zantac was added at bedtime (couldn't do twice/day due to too many meds filtered thru liver) and have been on Singulair for years (for asthma/allergies) taken at bedtime. I've been lucky not to have side effects from that.

Did you have tryptase/ and the urine test? Did they do bone marrow to do mast cell count in bone marrow? Just curious as to how yours was diagnosed. I was referred to 2 hemeoncologist by another oncologist (one appointment in a couple of weeks) for multicomplex autoimmune deficiencies. I was wondering (since this hemeoncologist has research interest in Mast Cell activation but is 64 years old) if she will consider this or not.

I also take Prilosec OTC but had to cut that down to 1 day again because of all the meds I take that are hard on liver.

Wishing you success with your new regimen. Try to hang in there. If it's anything like the orthostatic hypotension, there are most likely other agents they could try.

[MightyMouse]

You may want to talk to your doctor/pharmacist to see if there is a 24 hour allergy otc med to substitute. You're essentially on the same protocol they put me on when I'd have anaphylactic reactions and hives. Mine was

10 mg zyrtec

150 mg zantac 2x day

10 mg singulair

50 mg or more of benedryl at pm, and 25 other times of day as needed, but can also take more than 50 if I'm still covered in hives or having asthma problems--basically, my allergist told me to keep taking until I just started feeling a little sleepy, as that's the sign my body had used all it needed.

This concoction kept me out of the ER more times than I can count. I hope you find a mixture that works for you. Also, I found that some allergy meds took me a few days, but I eventually got over the drowsy dizzy stuff and didn't have any other side effects.

I had a problem with a few of the generic zyrtec brands--and a few others are fine. For some reason, I can tolerate the Walgreens generic, but I can't tolerate whatever maker does the generic from my local grocery, no the one for Target. Weird.

[icesktr189]

I couldnt handle Zyrtec either, but did fine with Claratin... maybe you could take Claratin or Allegra?

[brethor9]

Thanks guys!

Ruby; I have been semi diagnosed by my internal medicine doc who is also a cardiologist and oncologist and deals with mast cell stuff....he also consulted with Dr. Afrin in South Carolina by phone.

He has started the protocol based on clinical manifestation and historical background....he has known my undiagnosed symptoms for many years.....we are trying to have testing done but I live in a small city in Ontario, Canada and unfortunately we dont have a lot of Mast Cell specialists. My internist probably knows more than most around here he is quite brilliant (he did do a flow cytometry last year as he was concerned about lymphoma but it came back negative) he is ordering a skin biopsy and may do a bone marrow at a later date......

I just started the Zyrtec today and have to say I feel like crap and am itching, flushing and warm all over, chest tightness. It actually feels like I am reacting to the antihistamine lol!!! not good...now I have to wait for it to get out of my system.....I think I will go back to using my aerius and maybe up the dose and go from there.

sigh...it can never be easy with us

thanks for the support

Bren

[anaphylaxing]

I'm in a very similar situation. I was on Aerius at first and it didn't work so switched to Reactine/Zyrtec (I also live in Canada). Not sure it's helping that much. But, from what I hear lots of masto people take awhile to sort out which antihistamines work best for them and sometimes mix.

I'm also on ketotifen and cromolyn which I think have helped. I'm still on steroids though from anaphylaxis and trying to get off. had to increase my Singulair to twice daily to control chest tightness and needed a steroid inhaler for awhile which I recently tapered off.

Have you checked out the mast cell disease forum?

http://mastcelldisorders.wallack.us/yabb/YaBB.pl

Good luck and keep us posted. More details about my meds etc on my blog if you need.

[juliegee]

DO NOT take the atarx if you are having trouble with zyrtec. A 25 mg pill is equivalent to 2.5 10 mg zyrtec- same make-up with a sedative. You have great docs, Bren. Follow their advice. I agree with other posters. Finding the right H-1 can be hard. Zyrtec does not work for some- my son included. Claritin is his H-1. Try that or Allegra AFTER you've given Zyrtec a fair try.

[brethor9]

Thanks Julie!

I will give the Zyrtec a couple more days but really do feel like I am having a reaction to it lol!! I have been itching like crazy, tachy, lightheaded, etc. Yesterday was a better day and I was still taking the aerius....I have been doing some reading and notice every anthistamine has a different chemical make up so I guess it is a matter of trial and error. I am going slow with everything and adding one drug at a time...it could just be my body not liking the changes so if I dont do well with the Zyrtec that means I cant take atarax at all ever?? even if say claritan works? sorry this is very confusing.....

Bren

[juliegee]

Right. No atarax IF you think zyrtec is a trigger. It has the exact same chemical make-up- only 2.5 times stronger with a sedative.

If claritin or allegra works, great- use them in the AM. However, something stronger at night is good. Many (including me at my worst) use doxepin. It is an old-fashioned anti-depressant. Masties use it in tiny doses for it's potent anti-histamine effect. It will make you sleepy- that's why it is great at night.

Best of luck sorting it out. I'm sending good thoughts your way.

Julie

[MightyMouse]

Julie, your son and I are opposites--Claritin did nothing for me. Also, I tried Alegra, but it made my heart rate go wild. For some reason, certain brands of zyrtec are just perfect for me. I suspect that it's the carrier stuff my body doesn't like when I've had problems. I've never had a problem with the name brand version.