New with IC and Trying to figure out the best treatment...

[momof8]

I have watched from afair for about 6 months. I was told by my ob/gyn that she thought I had IC so I found this website and read and read.

I went to a uroligist that specialized with IC and he performed a cystoscopy with hydrodistention and wala...I have a moderate case of IC.

My first reaction...anger! How in the world am I going to deal with this, be a wife and a mom to 8 children....well that lasted for about 24 hours, then I had a pity party for myself for another 24 hours and now....I have decided that I need to get on the ball because neither are helping me.

I knew the doctor was going to give me Elmiron, and since I seen one of the side effects was hair loss - my hair is to my waist - I went out and bought a bunch of ball caps and have been wearing them when I go in public.

When I spoke to my doctor, they said hair loss has not been very noticable with their patients and I told them....they have no idea who they are dealing with LOL. If it is going to happen...it will with me since strange things always happen to me.

Anyhow, The doctor gave me Elmiron and Hydroxyzine. I just went to fill them today...and about dropped dead!

Yes, we have insurance and they paid a good chunk BUT together it came to over 150.00.

I sat in the pharmacy drive thru going back and forth if I should buy them or not and I did buy them but the reaccuring cost will put us further in debt.

I did look into the assistance with paying for the medication but I do not qualify. So....

That leads me to the question of has anyone tried the Cystoprotek?

What is the purpose of taking the Hydroxyzine?

I am trying to find an alternative to ELmiron due to the cost. The Hydroxyzine, I can afford.

Any suggestions or help would be greatly appreciated.

[Sally939]

I will answer the questions I can. For me the hydroxyzine has been a big part of my treatment. I have been playing around with doses for sometime (with my docs help) and now take two in the morning and at night. I think the reason it is used is some think IC is linked with allergies and it helps people sleep through the night without getting up all night to go to the bathroom. For me it really helps control my urgency. As I upped my hydroxyzine I was able to decrease meds that caused me retention. Since you said you have been reading the site for a while now you know what works for one does not work for another. I would deffinatly give it a try.


I have not tried cystoprotek because I have done well on Elmiron. I know LeeLee took elmironn and it helped her but stopped due to side effects and found an alternative. I think it was MSM but I am sure she will post and tell you for sure what she uses instead of elmiron.


As far as the hair loss goes some have had hair loss that they could notice. As for me at first and for about six to eight months I had hair loss. It was nothing that anyone else could see but I know that before elmiron I did not have that many hairs on my hands when I washed it. My hair loss pretty much stopped. I will still notice it if I am really stressed but only then.

[VickiB]

My first reaction...anger! How in the world am I going to deal with this, be a wife and a mom to 8 children....well that lasted for about 24 hours, then I had a pity party for myself for another 24 hours and now....I have decided that I need to get on the ball because neither are helping me.

Spoken like a true Mom of 8! I have a feeling your great attitude will get you through this!

Yes, that Elmiron is spendy stuff, isn't it?! I took it for two years, and it did seem to help, but decided to give it up because of the price. (My insurance didn't cover it) -No hair loss though! I have just recently begun the Cystoprotek, but it's too early to say if it's making a difference.

I did want to mention that if you haven't tried the IC diet, that might be worth a try. For many of us that one change can make a huge difference! -And unlike Elmiron, the diet is affordable!

Welcome to the ICN!

Vicki

[ICNDonna]

If you decide to try elmiron, I suggest that before you begin you take a hair-free hair brush and brush your hair thoroughly. Then comb the hair from the brush and store it in a sandwich bag. Then if you feel the elmiron is causing hair loss, do the hair brush test again.

I hope that whatever you decide to try, that it will work for you.

Sending healing thoughts,
Donn

[KarenAnne]

:hi:I don't have much advice, but my previous dr. put me on hydroxyzine because they saw "mast cells" on my bladder biopsy. This website has alot of research & info that can explain it to you.

Welcome & best of luck with your treatment.

[leelee88]

Hello and :welcome:

I am using the alternative MSM/Glucosamine.. Just like with elmiron it has took some time to work. BUT yes I have seen results from it.. I use to pee like 15 to 20 times a day now maybe 8 Also I have a volume now.. Before I was maybe peeing 3ozs Now it is around 5 to 6 ozs. On good days even more. I tried the Cystoprotek but could not take it because It had chondroitin in it. But you might have good results from it..

Also the Atarax was working good for me with my bladder and seemed to help with the inflammation. I noticed that I was not as swollen as I had been.. But I had to discontinue it also due to it made me hyper instead of tired and was messing with my BP..

BUT Just know that these meds Atarax and Elmiron are not the only thing out there for IC.. Trust me I have been through a few.. I finally found the right combo for me through trial and error..BTW Elavil and Tofranil in the generic form are very affordable, so this could be an option if the atarax does not help..

SO be your own advocate, and yes read, read!!

[elamar]

cystoprotek is also a very expensive supplement. I was not able to take the elmiron due to drastic hair loss and severe abdominal pain. I take the cystoprotek but honestly, I don't know if it is doing anything. I just take it because I know is it supposed to be good in helping heal the bladder lining. Are you having frequency? I'm surprised you weren't put on something like prosed or urelle. These help reduce that "gotta go" feeling. I take utira-c which is a sister drug to urelle. I don't think I could manage without it. I usually just take one per day to keep symptoms in check. I also take the atarax at night - I take the generic version. Many on these boards have also found relief using Elavil. It didn't work for me, but we all react so differently to drugs. It makes you very sleepy. It seems to reduce night time frequency for many here. It is one of those drugs that you would take around 7-8 pm so you can get good rest for the next day. I don't know how you manage with 8 kids!!! Maybe they wear you out enough so that you don't need any sort of sleep aids??!!! I know my biggest problem in the beginning was coping with loss of sleep. Sometimes I would pee every 10 minutes around the clock for days at a time. I have 3 kids and man I thought I was going to lose my mind! Luckily ditropan xl worked great for me. I had to take large doses of that along with utira-c. After about 2 weeks things started to calm down to where I could finally sleep. I hope the Elmiron works for you. I think it will actually be cheaper for you to fill that than to buy cystoprotek. You can get a discount if you buy the cystoprotek in bulk. I think if you buy a years worth, it is something like $250. I would recommend you check with your doctor first and give the Elmiron a chance. I only switched because it was obvious early on that my body wouldn't tolerate it. Good luck to you and feel free to post questions anytime. Have a good day.

[omarito]

:welcome:, u know justtry to be optimistic, in my stage now i assure you that it i smuch better to deal with ic case through conservatitve treatments as medications, as for the hair loss, i rarely noticed it, i mean many patients didn't find a problem with the hair loss, so try to be better, watch ur diet, may be u can sort a way out even without medication,
i wish you the best.