Antihistamines for someone without allergies?

[musiclover]

Hi, I'm wondering if anybody can tell me something about antihistamines for IC. I'm wondering if they would work for someone with no history of allergies. My doctor prescribed both Elmiron and Neurontin but no antihistamine. I wonder if it would help me, but maybe not since allergies most likely aren't at play here since I have never had any. Any thoughts?

Thanks!

[mouse]

Hi music lover,
I was wondering what type of muscle pains you get. For the last couple of weeks I have had a lot of pelvic pain but it radiates so it is hard to tell where it is comming from. I also have cyst on my ovaries and endometriosis. Anyway I an assuming it's an IC flare but I've noticed the muslces up and down my legs also ache. Do you have the same promblem? Also what do you use the nuerotin for and does it give you any relief? I was on elavil for a year and while it helped me sleep i really didn't notice anything else so I am thinking of going off it. I can also fall asleep if I take a sleeping pill and that doesn't have the nasty side effect of weight gain!

[musiclover]

Hi Mouse. It is not uncommon for pelvic floor dysfunction to cause your legs to ache. I know I have trigger points in my legs. My PT presses on points on the inside of the thighs a couple of inches down from the knee. That is a sore spot for me. Also, further up the leg, and in my hips, kind of in the butt area I have some really bad sore spots. My lower abdomen is also very tight and it hurts all the time. But I have the same problem sometimes with not being able to exactly locate the pain. It's hard to tell where it's coming from. And both tight muscles in the pelvis and pain in the bladder or other organs can radiate pain into the muscles all over the legs, hips, abdomen, etc.

I tried Elavil twice, but it made my muscle cramping worse, so I stopped taking it. I take the Neurontin now instead to calm the nerves in the bladder to help with the frequency. So far, it hasn't helped much, but I am on a low dose because it makes me too dizzy. So far no weight gain, but that is probably because I'm still figuring out the IC diet and too scared to eat a lot of things.

If you can, you should see a PT that specializes in pelvic pain. I'm sure he or she could really help to ease some of the pain you're having.

[mouse]

Hi Musiclover,

thanks for getting back to me. I do go to physical therapy and she has worked wonders. I too have a tight pelvic floor. I usually go every week but do to my busy schedule I haven't had internal pelvic floor work in three weeks so I wonder if that could be the source of all my pain but my legs and joints do hurt terribly. And while my PT does not address trigger points in my legs my accupuncturist does and I am tender in the same spots you mentioned. My accupuncturist has informed me that in chinease medicine those spots correlate to the bladder and kidneys. I'ts funny I was starting to think I would have to be really strict on the IC diet and then tonight, due to a meeting I had to attend ,I had to eat on the run. And when I am feeling like crap I like to eat junk so I order the new buffalo and barbecue chicken tenders at Wendy's. I thought for sure I was going to pay for it and supprise, supprise I felt better tonight then I have in weeks!!!! that's what's so odd about this pain is that I usually don't have food triggers and just when I started to think maybe I do I'm back to thinking I don't! I am going to ask my doctor about antihistamines tomorrow so I will let you know what he says. Since it is affecting our muscled and joints I am wondering if lyrica would work well for us. It is generally what is prescribed for women with fibromyalga(sp?). Oh sorry this is so long but one last question. When you are in a flare or are feeling pelvic pain does you abdomen swell?

[musiclover]

Hi Mouse. That's interesting what your acupuncturist said. I guess it's similar to the trigger point map that is on my PT's wall. I wish I could do PT every week, too, but I have to pay a good amount for it, so it gets kind of expensive.

I'm kind of the same as you. For a long time I didn't think I had food sensitivities. But I've been on the IC diet for a couple of weeks strictly now and I think I feel slightly better. I did have a beer the other day with a friend and it was just fine, I didn't feel any worse at all. I wish the diet would take care of all of the pain and frequency, but so far, it has only made a dent. But I'm happy with any progress, better than nothing!

I wanted to try Lyrica, too. But there is no generic available as far as my HMO says, so it would be pricey. The Neurontin I'm taking is in the same class of drugs as Lyrica, but it hasn't worked wonders that's for sure.

Yes, please do let me know about the antihistamines. I have no history of allergies at all, do you? So I really don't think that is my problem, like it is with some people. But since it's an anti-inflammatory, it seems like it might help.

Oh about the swelling abdomen, I used to get that HORRIBLY. I looked pregnant most of the time. My doc said it was IBS, which made sense, since IBS and IC go together sometimes. I actually had that before the IC. But the IBS and the belly swelling went away never to return, but then the IC started at the end of all that and unfortunately it didn't hit the road along with the IBS. You know what helped me with that was the IBS diet, probiotics, and also lots of warm baths and stretching, twice a day. After a while, it just disappeared. Do you have the book Heal Pelvic Pain? It might have some good tips for you.

[Zygala87]

I was perscribed Singulair which is suppose to help with mast cell on our bladders. I never had allergies either but Singulair does seem to help me. It makes me sleepy so I take it at night. Hope you are feeling better soon. Hugs, Ziggy

[mouse]

Musiclover, I work for the state so I have very good benefits plus I am also on his benefits. I do have to pay for PT out of pocket first which really does stink but all the PT's in my area that do pelvic floor work do not accept insurance. Anyway my husband has rhuematoid arthritis and is on enbrel, which is very expensive, so we meet his $1000 deductable the first month and then all my drugs are free:woohoo: I just recently found out I have severe allergies to dairy and eggs which is funny because I ate both my whole life and never got sick! Occassionally I would get an upset stomach from whole milk (skim was fine) and soft icecream (hard was fine)! And they are also questioning if I have celiac's disease which I think they are way off base on! They say because I have an adrenal stress disorder that even if they test me for celiac's I can come up with a false negative. I followed a gluteen free, dairy free, egg free, and niteshade free diet for months with no changes in urinary frequency. I didn't have pain back then so it is hard to say but when the pain started (3 weeks ago) I was kinda back on the diet so I don't know???? When I stretch or work out the bladder pain / pelvic floor pain goes away but my legs hurt terribly the next day and I think the pain is worst. I don't have that book do you find it beneficial? Oh one thing I should mention I started tibial nerve stimulation a couple of weeks ago and ever since then I had one problen after the next I am wondering if that could be the source of my pain! I think I will post under that thread today!

[vm]

About antihistamines from the Patient Handbook:

Mast cells are one of the body's first lines of defense against substances and invading organisms. Biopsies of some interstitial cystitis bladders, particularly ulcerative IC, have been found to have unusual numbers of mast cells. There is also speculation that mast cells in IC bladders do not function normally. In any case, antihistamine treatment in IC is aimed at stopping the "histamine-mast cell-inflammation" cycle in the bladder.

Atarax® and Vistaril® (generic names: Hydroxyzine HCL or Pomoate) are believed to block the activation of mast cells (12). Hydroxyzine has been shown in scientific studies to be very effective for IC patients, particularly patients with a history of allergies. Often used in conjunction with Elmiron, Hydroxyzine is now one of the most important therapies for IC patients.

http://www.ic-network.com/treatments/#oral

[mouse]

Hi musiclover,

So I went to my doc on Friday and asked him about the antihistamines. First off I must say that I do not believe he is any kinda expert in the area of IC. He didn't even know there was an IC network and he is not up to date on half the treatments used!!! But I continue to go to him because he doesn't push for exploratory or invasive proceedures or treatments that I am not comfortable with. Anyway, he felt that antihistamines were more for people who had seasonal allergies, which I don't. Just dairy & eggs alergies. But he did prescribe visteral to me & I believe flexeral which is a muscle relaxant and I have to say my pain has decreased greatly and I even think I am running to the bathroom less. Oh and I can tolerate two cups of low acid coffee again from trader joes...Yeah!! I wanted to know how nuerotin is working for you. My doc and I discussed perhaps going on it down the road but at this moment he does not want me to try to many things at once. I had to discontinue using elavil because I had bad retention.

[musiclover]

Oh hi Mouse. I just noticed you wrote. The Neurontin, well... I think it works a little bit. But I'm on a really low dose - 300mg/day because it makes me terribly dizzy. I went up to 600mg/day for a few days, but I started getting confused. Couldn't find my way around town. It was bad.

Thanks for asking about the antihistamines. I keep getting contradictory info about that, so I'm just not sure. I'm not sure if I should ask for it or not. I'm really counting on the Elmiron to eventually kick in. We'll see what happens. The IC diet was really helping me until 3 days ago I went into a flare and nothing is getting me out of it. I don't understand what caused it or how to get rid of it. Now I'm peeing constantly again. It's so disheartening. It's hard to keep positive during times like this.

I just googled vistaril, so that is basically Hydroxyzine, right? Let me know how it goes, I'd be interested to hear. You said you're doing better. I wonder if it's that or the Flexiril. It could be that relaxing your pelvic floor is helping.

About trying Neurontin, I think you should try something honestly. I would go for it and if something works, figure which one or combo it is later. Right now you just need relief. Don't let my dizziness scare you. If you taper up really slowly I think it's possible to get up to a higher dose. I'm going to try again to get up to 600 and see what happens.

[mouse]

Hi Musiclover, I am sorry to hear you are not feeling well. That's what's stinks about this disorder is that a flare can come one out of the blue and you have no idea what caused it. Hopefully, as quickly as it came on it will go away!!! Since I last posted I am still feeling better. I'm not sure if the meds had anything to do with it because honestly I started to feel better the night before I took them. I think it was the internal work by the PT that made me feel better. My husband's rhuematologist believes I might have fibromyalga because of all of the muscle pain. I started taking it on saturday and I have to admit my legs do feel better & initially I even thought there might be a reduction in frequency by now I am getting my period and it is hard to tell?? Feel better soon & keep me posted if you come across something that helps with frequency...In general that is my biggest problem.

[mouse]

OOPs I made a typing error. I should know better & check what I type before I post. The medication that my husbands rhuemtologist put me on is Lyrica. His doctor is such a wonderful man he gave me three months of free samples and told my husband if it helps he would give me more! I wish more doctors were like him!!!!!!!!!!!!!!!!!!

[musiclover]

Wow! That was awfully nice of him. Kaiser doctors would never do that. Sigh. Okay, so Lyrica is similar to Neurontin, but newer. I thought about Lyrica, but it was more expensive with my insurance. I would like to try it since you only have to take it once a day, but I'll live with the Neurontin for now. Let me know how it goes.

So here's something interesting... Like I said, I don't have any allergies, that I know of anyway. I took half a Benedryl last night, and it almost got me out of my flare. I am feeling about 50 - 60% better today. Just from 1/2 pill! It made me REALLY tired, so I'm going to wait until tonight to try it again. But I really had no idea that an antihistamine would work for me. I tried Zyrtec for a few weeks, but it didn't help. But now I'm reading that Zyrtec works differently, and so it may not work for IC. But it had to be the Benedryl that made me feel so good. I felt almost immediately better.

OK, take care and keep me updated on your progress.

~Lisa

[musiclover]

One more thing to add to my above post! What does your PT have you doing? I think I read earlier that you said you were originally diagnosed with PFD without IC? Is that right? Sorry, I can't remember exactly. I was originally diagnosed after cystoscopy as not having IC but just PFD. But then I saw a specialist and he said if you have the symptoms, you have IC. Now I believe it because the things that help IC are starting to help me. Once I was on the diet for a few weeks and got it settled down enough anyway.

So for my PT, I press on external trigger points and I just got a dilator (ugh) that I am supposed to use. And I also have stretches I'm supposed to do. And for extra measure I take warm baths at least once a day.

What about you?

[christinap28]

HI music lover
I have no allergies at all and I take atarex and vistaril together. I honestly havent noticed a great big difference and been on them both for nearly a year. I have also took the neurontin and had no help with the pain at all but I do hope it gives you relief. I also have tried elavil and the other drugs and so far nothing has helped but I am glad that the neurontin has helped with you. Good luck, Many Hugs :pray::pray::pray:

[Goldfinch]

Musiclover, antihistamines are commonly prescribed for IC. The most typical is Atarax or Vistaril, which are both generic for Hydroxyzine. Since it is a generic it should be cheaper than a designer antihistamine, whether otc or script, and since it has a history of helping an IC bladder--presumably because of the mast cells--it would be worth a try before trying something more expensive.

It is very often prescribed along with Elmiron. My uro says that it seems to be a good combo for many of his patients. I don't do well with antihistamines, so I opted for just the Elmiron.

There can be sensitivities without being full-blown allergies. I would say many of the food issues for ICers would be classified as sensitivities rather than allergies. Mast cells are a histamine reaction, so it makes sense that an antihistamine could help. Red wine in particular is full of histamines as well as being acidic, which may be why it is so often not tolerated by us.

[glassd18]

Thanks for asking the question musiclover. I have the same question. I tested mostly negative for allergies except for a tiny reaction to cats (I have three), and dust on the scratch tests, but on the blood test I came up negative on everything. I went to the doctor this morning because my sinuses are so bad, and I was telling her about my IC (new doc), and joint pain so she wanted me to see an allergist even though I told her I didn't have anything on any tests. She seems to think that that isn't neccessarily true as she said it can be an immune response problem anyway. Well I will give it a shot and go see the allergist and see what he says. She also gave me Singulair to try, but I find it weird that she would want me to start this before I see an allergist. The last time I went they made me stop all antihistamines for at least a week before seeing them. I won't start it until I see him. What I liked about this doctor is that she has her pharmacist degree, and she is an internist as well. Anyhow I will let you know what I find out when I go see him. I will bring this question to the table.

[musiclover]

Hi glassd18. I think you should definitely try the anti-histamines (after you see your doc). I don't have any history of allergies, but I decided to start on Benadryl, and wow has it made a difference. My frequency and the irritation feeling in my bladder decreased a whole lot. I was at the end of my rope, and it calmed everything down enough that I don't feel like I'm going to lose it anymore. :) I still am not anywhere near normal with the urinary frequency, but it did help a whole lot.

[glassd18]

Thanks Musiclover. I don't do Benadryl very well. It gives me the heebee geebees, and disturbs my sleep. I'm am one of those that tends to have weird reactions to meds sometimes. I'm hoping this helps. It seems to be the allergy meds of that type though that seem to help a whole bunch for some people.

BTW do you play an instrument? I play guitar. Just curious because of your user id.

[musiclover]

I know what you mean with the Benadryl. It made me sleepy and hyper the first couple of nights. But now it just makes me mildly sleepy.

Yes! I play the guitar, too! :) I have an acoustic, but I really like to play the electric. I have an Ibanez electric, but I really would prefer a Les Paul or something, but don't have the money with all these medical bills. I started playing when I was 19 and I'm 32 now. It's a very relaxing thing to do. I like to just pickup songs I like from the radio. But I also like to play jazz and blues and I'm thinking about trying to play some latin jazz, like stan Getz' songs sort of.

What kind of music do you like to play?

[MaryJo]

Does anyone know if hydroxyzine causes weight gain for sure? Is there some place where I can read about it. I can't find much info on weight gain with it.

I read somwhere it is some sort of a steroid ? is this true?
It helps me alot! but I have gained weight so I'm not sure to blame it on this or not?

Any help would be appreciated
Thanks,
MaryJo

[daisyj3]

musiclover

Do you take regular or dye free benadryl and do you take it every night before bed. Per my doctor I am trying wamr baths and low dose valium first. I would be interested in trying the benadryl instead of the valium if I don't find relief from what I am currently doing.

[musiclover]

Hi Daisy. I take regular generic Benadryl but I might switch to the gel ones since I'm not sure if the dye bothers me. I take one a night at bedtime and claritin during the day as needed. I used to be on low dose Valium and take hot baths but that was to treat the pelvic floor dysfunction. I have found I need to take care of the PFD and treat the IC to feel better. My PFD is quite a bit better so I'm not on Valium anymore but I still do PT. Try a Benadryl and see what happens. Maybe not at the same time as Valium since they both make you tired.

[asIshallbe]

Does anyone know if hydroxyzine causes weight gain for sure? Is there some place where I can read about it. I can't find much info on weight gain with it.

I read somwhere it is some sort of a steroid ? is this true?
It helps me alot! but I have gained weight so I'm not sure to blame it on this or not?

Any help would be appreciated
Thanks,
MaryJo

It helps me sleep sp well that I am not willing to stop taking it. I am really not eating any more than usual. I feel it causes me water retention and that is where this darned weight gain is coming from. Argh!!!

[musiclover]

I got an Rx for hydroxyzine and took one last night but it was so sedating it scared me. And it was 25mg but I only took half. I think in combo with my other meds it was too much. I called the pharmacist and she said to take it two hours apart from my other meds so I did. But it was still so strong.

[glassd18]

Hey Musiclover. I had the same reaction as you. It made my breathing really shallow. I cut it in half the next time, but I was still so grogged out and cranky the next day that I stopped taking it. Apparently it gets better over time, but I wasn't willing to find out because it had such a negative effect. Someone mentioned Vistaril instead of Atarax might be better to me one time, but I can't remember exactly who or why. Someone else might chime in here who knows more. Of course always talk to your doctor or pharmacist before trying something different.

[musiclover]

I'm like you, this hydroxyzine has such bad side effects, I don't know that I'm willing to stick with it for the amount of time it takes to adapt to it. Benadryl helped me a lot before, so I think I might just go back to that. But I might try generic Zyrtec first and see how that works.