ZYRTEC - cha ching!?!

[Taramc]

Hey out there, when my hydro showed glomurulations and my biopsies showed mast cells, I basically told my urologist I have IC. She never really uttered those words. I said 'well let's pretend it's IC' and I asked her to put me on Elmiron, Elavil, and an antihistamine.

The antihistamine she gave me is called ZYRTEC and OMG the co-pay with my primary insurance is $35 and my second insurance is no better: $45! The two companies don't cooperate with each other so I'm stuck with a co-pay, and the Enablex (which I just can't quit taking) is also up there in the price.

Add the cost of Cysta-Q...okay I'm preaching to the choir, I know. Here's me getting to the point:

1. Are any of you on Zyrtec, and if so, did your doctors give you a reason?
and
2. If you aren't on Zyrtec, how much are you paying for your antihistamine?
and
3. Do we really need to be on antihistamines?

I put off paying for my last bottle for about a week. I had a bad PAIN-flare, but who knows why. None of mine have any rhyme or reason to them.

Thanks everybody!

[Michelle in KC]

Well, Yes, I think ICers should be on an antihistamine. I think I am doing better on one. In fact, I am on Zyrtec for seasonal allergies and on Vistaril for bladder. I didn't notice any difference in my bladder with the Zyrtec pills at all. As soon as I started the Vistaril I noticed a bit of difference. I have Medicare RX so I only pay $5.35 for my Zyrtec and $2.12 for my Vistaril because I get a generic. Have you checked into PPA stuff? Contact the Zyrtec company itself. I did notice that my Ins paid like $90-something towards me Zyrtec when I had it filled last time. YIKES!!! No wonder we're all in financial difficulties!
Michelle.

[jen74]

I actually took antihistamines for a while and they did nothing for me, I actually felt worse after being on them after two months. I guess everyone is different, and it all depends on what is causing the IC to begin with I suppose.
Jen

[OrlandoP]

Hey out there, when my hydro showed glomurulations and my biopsies showed mast cells, I basically told my urologist I have IC. She never really uttered those words. I said 'well let's pretend it's IC' and I asked her to put me on Elmiron, Elavil, and an antihistamine.

The antihistamine she gave me is called ZYRTEC and OMG the co-pay with my primary insurance is $35 and my second insurance is no better: $45! The two companies don't cooperate with each other so I'm stuck with a co-pay, and the Enablex (which I just can't quit taking) is also up there in the price.

Add the cost of Cysta-Q...okay I'm preaching to the choir, I know. Here's me getting to the point:

1. Are any of you on Zyrtec, and if so, did your doctors give you a reason?
and
2. If you aren't on Zyrtec, how much are you paying for your antihistamine?
and
3. Do we really need to be on antihistamines?

I put off paying for my last bottle for about a week. I had a bad PAIN-flare, but who knows why. None of mine have any rhyme or reason to them.

Thanks everybody!

Do some research on the antihistamines. They seem to work best on folks with allergy symptoms. Did nothing for me. The NIH's study on Atarax (H 2 inhibitor) showed little better result than placebo for IC. Yet folks on this board do great with it...it is very difficult to know which drug is working when in combo. My bet would be on the Elavil working--that has the highest success rate statistically. But we are all different.

[mom_in_ma]

Hey OrlandoP. You read the same study I did about atarax! Go figures. ;) Taramc, I couldn't take atarax (which is unfortunate because it's cheap as dirt perscription wise) because it caused major retention. I've been taking allegra for years and THOUGHT that it was helping my IC. But, honestly, I think it's just helping my seasonal allergies and my bladder calmed down on it's own. The theory behind antihistamine use is sound as apparently many of us have lots of mast cells in our bladders although, I've read that any nerve irritation anywhere in our body creates mast cells. So, who knows...

[traceann]

Hey Tara, I too take Zyrtec - but I take it strictly for head/nasal allergies, and yep - expensive! :cussing: I pay a $50 co-pay for mine, but it works so well for me, I am sticking with it. My insurance company had sent out a newsletter on meds etc, (this was back in end of 2006) and stated that Zyrtec was due to go generic in 2007 - well, I am still waiting, lol. I did some digging and it was set to go in May of this year, but it's being held up still...grrrr.

I also take Vistaril (hydroxyzine like Atarax, but slightly different formulation) though for my bladder. In fact, it's the last Rx for it I am on. The only way I'll give it up is when hubby and I try for a baby, since it's a category C, it's a huge no-no. I was already on Ditropan when my doc put me on Elmiron, and a couple weeks later I read the information I got here on the ICN about Vistaril/Atarax and called my doc and asked to be put on it. He had no problem with it. For the first few days, I felt like it somehow increased my frequency, almost ditched it but decided to give it one week - and I am glad I did. That feeling went away and I actually started sleeping through the night finally! And according to my voiding diary, things started to steadily get better once it was added in. Now, granted no leaps and bounds, baby steps more like it - but it was improvement, and that was good enough for me! So, I guess I can say I am one who's been greatly helped by hydroxyzine. And it's generic is really inexpensive, I now go mail order through my insurance, and get 3 months for 12 bucks. ;)

[NicoleB]

from what i've heard, Atarax and Vistaril are the only ones that have a certain effect on Mast cells, and therefore, the best ones to take with IC. Zyrtec is similar, but i dont think it is usually as effective. Besides, atarax is very cheap (if you get the generic). i would ask to be on one of those.

Antihistamines can control the inflammation that the mast cells cause.

[Taramc]

..you guys are awesome. Ya know, I've never had any problems with allergies. I think I'm just going to complain about the price and see what my uro says. Maybe let HER make a decision for once...haha.

[dg2901]

My URO rx'd Zyrtec for me, and when I saw the price ($50 copay) I refused. I was already having to pay for the Elmiron and Elavil, along with thyroid and HBP meds. I just couldn't make myself pay yet another $50/month for a pill.

Hopefully your Dr will be able to rx you something different if she really feels an antihistamine will work for you.

Wishing you well...
Diana

[BrittanysDance]

have you tried just plain ol' benedryl? the dye free type of course....

works great for me...I used to be on Atarax and Zyrtec..but now use benedryl PRN to help calm my bladder.

[mary124]

I also use benedryl as needed as my doctor told me he really won't prescribe anything else for me unless its necessary-- as I'm on too many meds as it is. (this is my Uro) but I know if needed I can as my primary care, but I agree with my Uro on this one, - I use to know the name, dose of each medication and what they were for, now I'm lucky if I know just a few of the meds that I'm on-so I take a list with me whenever I go to the doctors.

[laker46580]

Just refilled yesterday and pharmacy says going generic early 2008. We can only hope!

[GriffsMommy]

I'm on the hydrozine or however you spell it for the IC. I started it about a month ago and I'll be honest, I don't know if it is helping the IC but it's helping me sleep at night. I still get up to go pee but when I do I fall asleep again as soon as I hit the pillow pretty much. When I saw the pelvic pain specialist yesterday he def agreed that because I had so many mast cells in my biopsy that he wanted to stay on it. It's cheap and I think when I go back in three weeks I'm going to ask him to write out a 90 day supply rx so I can get it through mail order and that will save me even more.

[Taramc]

Thanks again you guys... so the mast cells have something to do with histamines and taking antihistamines helps? There were a LOT of mast cells in my biopsy. And to be honest, since I started taking Elmiron, Amitriptaline, Zyrtek in late September I've been doing a little better. Less frequency and I'm slightly more diet tolerant (VERY SLIGHTLY). I'll pee 5x before falling asleep but I'll make it through the night these days, too.

My nerve pains got worse in October so I got some Lyrica and now those are down by 50+percent. Though my neurologist says the infection had to have been viral to cause sooo much neuralgia and neuropathy. Anyway....progress, I guess, is progress. I saw a neurologist yesterday, my primary care doctor today, a counselor twice last week, and next I'm seeing my acupuncturist (an MD), my urologist next week, and then an osteopath/pelvic pain specialist Dec 3rd. She wants me to read 'headache in the pelvis' and 'full catastrophe living.' Guess I'm going eastern...................

And here's where I'm at with all the EOB forms: :bonk:

[NicoleB]

yeah, mast cells are a kind of immune cell that secrete (or degranulate)histamine and other inflammatory chemicals when they are provoked. however, there are only certain kinds of antihistamines that will work on the same level. Cystoprotek and CystaQ use quercitin to do this, so its worth looking into. Cystoprotek has a good article on its page all about mast cells and how they cause inflammation.

[Taramc]

...and I had no idea it was to help with the mast cells. I'm on my 2nd bottle (the one I had to pay for lol) and my urologist even recommends the stuff. So THREE CHEERS FOR CYSTA-Q.

My urologist also said she doesn't think taking antihistamines is all that necessary, and if she was going to take me off ONE pill, it would be that one.

Anyway she was happy to replace the Zyrtec with Atarax. NO biggie. She had to get out a big dosage book to look up the dosage...lol. Guess I'm one of very few IC patients, and probably the only one who asks for specific treatments.

Whatever works!