cystoprotek and side effects

[pump]

I have read that cystoprotek is a natural supplement. However, it does contain glucosamine and chondritin and I have read that these two supplements are harsh on the liver and could cause liver damage. Is this true? I read this on an internet site once. I was wondering if anyone knew any information about this. Does it only cause damage if you take it for many many years or months or what?? Or how harmful on the liver is it? Thanks

Pump

[havingsuccess]

I don't know about the liver but i do know that the cystoproteck caused me to have an awful flare in symptoms. I know it's odd but i felt horrible and tossed it out. Hope you find your answers.

Success

[ICNDonna]

I think it would be a good idea for you to take the container with you to your next doctor's appointment and ask your question.

Warm hugs,
Donna

[kadi]

I had bladder pain (and a migraine the next day) after I took 1/3 the usual dose of cystoprotek. I'm planning to call the company & try to get refund. (First was going to just throw it out, then thought hmm, $30... and the company needs the feedback that it may have this effect on us...)
Disappointing... I'd been really hopeful.

[purpleviolet]

Hi all - have been taking cystoprotek for quite some time and really nothing has changed. But - I normally don't have burning all the time so I may not be the typical IC person. If you get a flare at first how do you know its not something else? Susan

[Marti]

Greetings from your friendly neighborhood toxicologist.
Glucosamine and chondroitin have been used in both human and animal medicine for a very long time, and their behavior in bodies is very well characterized. Quercetin, the third ingredient in Cystoprotek, also has an extensive scientific literature. You may have had a flare while taking Cystoprotek, but there is almost no chance that the Cystoprotek caused it. Like Elmiron, it takes a minimum of three months before you know whether it is going to work for you or not. I have found no studies indicating liver toxicity from either of these substances. Of course, if you give high enough doses of almost anything to an experimental animal, you can cause trouble in the liver. That is the reason we are warned about possible hepatotoxicity from Elmiron. It resulted from high doses given to rodents.

Hope that helps.
marti

[sharber]

I have been taking this product for about 2 months and I have problems with my bowels. Has anyone else has these problems?

[Aspencad]

I'm just about to finish my second bottle. Something weird is starting to happen. Although I continue to get up every 2 hrs at night my sleep seems to be getting deeper. My problem has always been the urgency, frequency at night and the insomnia. Have never had the pain you guys deal with. I also tried the Prelief but it had no effect on me. I stopped after taking 1 whole bottle. I'm hoping as I continue with the Cystoprotek that my sleep will get deep enough to over ride my urge at night from my bladder. When I get up at night instead of going straight to the bath room I will try to go back to sleep. Some times my bladder wins some times it does not. As I said, I am hoping the Cysto. is starting to kick in.

[Sesheta]

I just wanted to add a thought to this posting regarding the comment that Cystoprotek is "natural." The term "natural" is widely being misused as signifying that something is safe to take or use. But remember, hemlock, arsenic, and poison ivy are natural too . So just be careful and don't take advertising on face value.

Blessings to all, Sesheta :angel:

[ad8123]

I am trying the Cysto protect for the second time now, last time when i upped it to 2 doses a day I got diareha (and it was green like the pill, YUCK). I am introducing it very slowly , slower than the directions suggest. I freeze the tablets and that seems to keep the nasua away. Has it worked for anyone? You can get one free bottle from the company if your MD recomends it, they give you a form with a number to call.

Angela
FromFlorida:angel:

[Indy]

I felt worse on it for the 3 weeks I tried it. I tested it's ph on my litmus paper (how sad that I have this stuff) and the product is a 5.5--very acidic. I don't know how they could claim it's safe for IC. Maybe taking prelief with it would help.

[Zipper]

deleted

[redfaced]

Yep, my doc says the Cystoprotek is all good and he hates Elmiron. I've only taken CP for 3 weeks and after two I was all but normal once again. But I caught my symptoms early on, so I think that made a difference.

[redfaced]

I have been taking this product for about 2 months and I have problems with my bowels. Has anyone else has these problems?


Yes! I can't remember if I already responded to this, but I do get constipated with the CystoProtek.

[waterflow]

This is one of the few pills I have taken that I did not have any problems with. The first day I took it (6 pills) I didn't feel so achy all over. Always felt like I had the flu and the pain from that was awful. After having taken it for so many years now (can't remember just how many) I only get that feeling maybe once a year. It has also helped to coat my bladder so I can drink more without so much pain. I got the free bottle on my own from the company. Didn't need to ask my doc about it. I told him about when after I started taking it and gave him the information about it. I now take 4 pills a day.

[mela414]

I remember feeling really sick and nauseated from it! My gut felt horrible! I even tried freezing it.....no help. I think it might have been the eggs in it. I've become really intolerant to eggs and no longer eat them!
I'm thinking to try each of the ingredients separately. Has anyone else tried that?

[waterflow]

Angela , are they really green green? My pills are all brown. Not a hint of green in them. How about everyone else? Maybe yours are a different brand?

[swarr]

Mine are Browny Greeny.

[redfaced]

Are you asking about the color of the pills or the poop? My poop is the same color as the pills, which
is way more brown than green. If other people besides we ICers read this, they'd be so grossed out. :-)

[swarr]

I'm talking about the pills. I drink blueberry juice so my bm's are very dark!

[waterflow]

:biglaugh: I was asking about the pill color. You are right. Only other ICer's could understand other ICer's talking. We have a language all our own. :bonk: Hmmmm, wonder if our pills are the same?

[lavendermoon]

dear redfaced-
why does your dr. hate elmiron?

[redfaced]

I don't know that he "hates" it (and that was my own paraphrase on what he said). He just doesn't prescribe it to anyone. He thinks it's an "old drug" and he mentioned something about side effects, but it seems like most of those who are on it really like it and don't have any problems with side effects. I'll see him again in a few weeks and ask him more specifically why he doesn't like it.

[Angeles]

Other than GI problems, are there other side effects?
I was looking at the pamphlet that came with the bottle but I can't find any side effects listed.
I'd like to know the common side effects of the ingredients Glucosamine, quercitin, etc) Whenre can I find this information?

[glassd18]

Speaking of poop I have had problems with constipation with this stuff, but it does really work for me so I deal with it. As a matter of fact I ran out of Cystoprotek and I'm flaring terribly right now. I placed my order ages ago. I'm calling them tomorrow because I have a feeling my order didn't get placed. No confirmation email or anything this time around. So I know how well this stuff works because I'm miserable without it. I've been taking my samples of CystaQ and they aren't even touching this pain.

[redfaced]

Other than GI problems, are there other side effects?
I was looking at the pamphlet that came with the bottle but I can't find any side effects listed.
I'd like to know the common side effects of the ingredients Glucosamine, quercitin, etc) Whenre can I find this information?

As far as I know, there aren't really any other issues with the CystoProtek.
Now, I did get mild headaches on it, but I have no idea why, as I don't think there is anything in it that should cause those, but I did. I've not taken a CystoProtek pill in a week and feel a lot better with the digestion and headaches, and so far, no bladder issues either, but I KNOW it really helps, so if you are bad, stay on it. The constipation and the headaches are a small price to pay for feeling bladder-better!

[Angeles]

Yeah... I've been having some constipation too which is very rare in me.
The only thing I can't afford is dryness. I have VERY sensitive dry eyes and any medication that could cause dry mouth ussually causes me a worsening of my dry eyes symptoms. This could be so bad to me (worse than my IC) so I have to be very careful with what I take. I already gave up Elmiron, and this week I gave up zyrtec and BCP. So the only things I'm taking are "natural"
I wrote Algonot asking for a list of side effects but haven't gotten any repplies yet. I also had problem today trying to order my next bottle. I don't think it went through so I'll have to call.

[glassd18]

I talked to the people at Algonot today, and the person there told me that Cystoprotek is much more likely to cause diarreah (sp?) than constipation. The olive oil should act as a laxative. She also said that it is not impossible for me to be having this side effect because everyone is different. Suggestions she gave me were:

Pour the contents out of the capsule and onto a corner of bread with almond butter or something. She warned it is a bit tart tasting. The gelatin capsule could be the problem.

Take 1 capsule 4 x's a day instead of 2 capsules 2 x's a day.

Freeze or do not freeze. In other words if your freezing them try not freezing them and visa versa.

She told me to call her back to let her know how it goes.

I too called today because I thought my order didn't go through, but I ended up receiving it today. Thank God for that because I've been suffering!! I was in a major flare for three days, and out of cystoprotek since the weekend.

Hope this helped.

Di

[redfaced]

Thanks for the information! Maybe I'll try that with the capsules.

I ended up taking the cystoprotek again last night because I was starting to feel my bladder again, after not being on it for a week. It was a good test, though, to see if the CP really was causing the constipation and headaches. Both of those went away when I stopped, and then last night, after taking 2 CP pills, I got the headache and felt bloated in the stomach again. So I'm sure that's how it affects me. I'll just stick to taking them one at a time, at different times of
day, and eat my Metamucil crackers every night. :bunny:

[Angeles]

I'm getting this headaches but I'm thinking it is related to my eyes. Constipation may be due to cystoprotek b/c I never had it before. I'll stop it for a few days too and see if there's a connection. Thanks both for the info.

[asilva]

I started taking CystoProtek capsules in January and within just a few weeks, I felt better. No side effects that I noticed. I've always been bothered with IBS-D, so I just consider that the culprit. I started taking two capsules three times a day and now I take two capsules twice a day. I plan to continue it for as long as I need to.

[Freckles]

I've neve had any effects with the cytsoprotek, good or bad. I still take them although I will probably have to stop soon because once my divorce is final I won't have any health insurance. I have no idea what I'm going to do then. With my health insurance I pay over $120 a month for my meds. It's gonna be interesting for sure. ;-)

[glassd18]

Ouch, that's terrible Freckles!! I'm sorry to hear that!! Could you get some drug assistance? Some companies do offer this to people who have a hard time paying for their meds!!! It's worth checking out.

[Freckles]

Hi Glass,
I'm hoping I can get some kind of assistance. I need to start looking into all of that I suppose. I'm still in denial over this stupid disease, I just can't seem to come to grips with the fact that I can't work. I will admit I can't work right now but I'm still confident that at some point I will be able to. I have to keep positive.

Karen

[glassd18]

Freckles,

Dealing with the divorce has probably not helped your cause at the moment. Just the stress I imagine would be enough to put an IC bladder into overdrive!! I just left a very stressful job for reasons of keeping my sanity, and dealing with IC at the same time. I too am hopeful for the future. I find when we concentrate on the negatives (the things we can't do, instead of what we can) we tumble into depression although it's easier said than done when we feel sick all the time. We do what we can. If you have ever read Jill's story you will see where she talks about considering your bladder like a broken body part. It needs to heal so resting is okay. We tend to punish ourselves when we can't do things we used to and to me that is counter productive to our well being. Be good to yourself, you deserve it!!!!

[Freckles]

Thanks Glass......
That was so nice. What kind of job did you have? I was an accountant, well still am. I'm trying to start a business from home so that I can rest when I need to, pee when I need to. I was forced into a layoff because once my boss found out I was ill he made my life miserable. He was a friend, someone I had worked with years ago. He turned out to be a real nasty man. I took him a letter from my doctor and he refused it. When I went to Human Resources a few months later when I could no longer deal with his crap, they layed me off. I had to sign a release that I wouldn't sue them just to get unemployment benefits. Again, what goes around comes around. He'll get his at some point in his life. It has been nice being able to lay down when my bladder feels like it's going to explode. It's a nice change from being at work sucking on actiq and throwing up in the trashcan. ;-)
Karen

[evanseri]

I have been taking cystoprotek for about two months now and I think it is great. I started taking it during my longest flair ever (two months) and I began to feel better within a few days. I have had IC for about ten years now and have tried several things, some that work and some that don't. As of right now I feel that the cystoprotec along with the Elmiron have helped line my bladder. Recently I have been able to eat foods that used to send me into awful flairs. I hope that these meds continue to work as I now have been able to live a more "normal" life. Good luck on finding something that works for you.
:) Erin

[glassd18]

Evanseri,

I am glad you are having good results too. I know when I run out my bladder feels it right away. Hopefully something more with be found out about this crazy disease, and soon!!

Freckles,

You are welcome. I was an Office Manager/Accounting Specialist so we are in similar situations. I worked for the family business, and my father-in-law was becoming increasingly more difficult to work with, and making my life a living hell. The company was behind when I joined them in Nov 03, and in got worse from there. The accounting records were in such a shambles that we had to do a lot of forensic work to get things back to a reasonable place. I couldn't take the stress anymore because the taxes weren't filed for many years etc... and I was waiting for the sword to drop on my head so I had to leave. I completely understand your situation. I'm now looking for work with an account temp agency or full time work with another company. I also have been looking into working for myself. Good luck with whatever you do and know you are not alone!!! PM me anytime!!!

[lauraheather]

Can you tell me what cystoprotek is? Is it a prescription or a supplement? Where do you get it and how do you get your insurance to pay for it? I would do anything to find something that helps.

[swarr]

http://icnshop.com/cgi-bin/ustorekeeper.pl?command=goto&file=Alternatives.html

[Mydnight42]

I have a question. I use to take Elmiron but it affected my liver enzyme so I had to quit taking it due to the time I had my thyroid destroyed and they were going to put me on Synthyroid. Stopped taking Elmiron, everything went back to normal. So, my question is my new IC Doctor wants me to do prelief and Cystoprotek. These are the medication I am on:

Synthroid
Endocet
Ambien
Skelaxin but haven't been using it. Synthroid due to Graves Disease so will be on this for the rest of my life. Endocet because of my hip problems. Doing nerve ablation in 2 weeks, Ambien because I go to the bathroom a lot so don't really get a whole lot of sleep. I was wondering, taking all these medicine, would it be safe for Cystoprotek? I gave this list to my doctor. I just want to make sure.

This is what he has diagnosed me with: IC, Myofascial Pain, Dyspareunia, female stress incontinence, urinary frequency and nocturia

Thank you,

Tina Johnson

[glassd18]

Hi Tina. Sorry to hear that you could not tolerate the Elmiron. I was diagnosed with Myofascial Pain as well. This can happen with pelvic pain: http://www.mayoclinic.com/health/myofascial-pain-syndrome/DS01042.

I also have nocturia, dyspareunia, and frequency...sigh...so I know how you feel. I take Ativan (Lorazepam) once daily so I can sleep. I am not on any other medication at the moment.

I think that Cystoprotek is well tolerated with other medications, but as always you should ask your doctor if you can try it. Good luck!!

[Judy Gee]

just had to comment on how cute you look in this picture. Hugs, JG

[glassd18]

Thank you Judy Gee :) That was taken at my brother Steve's in Edmonton, Alberta Canada during Canadian Thanksgiving 2008.

[polygon]

I hope they make a vegetarian formula if possible.
I'd really like to try it out.

[glassd18]

Polygon How do you manage a vegetarian diet with IC? I used to be vegetarian, but really got confused after my diagnosis and thought I couldn't eat soy. I have pretty low B12 too, and I'm so sensitive to all meds (they flare me).

[polygon]

Polygon How do you manage a vegetarian diet with IC? I used to be vegetarian, but really got confused after my diagnosis and thought I couldn't eat soy. I have pretty low B12 too, and I'm so sensitive to all meds (they flare me).

Honestly I don't eat very well at all. It's not balanced. Mostly, I eat tofu (soy products don't seem to bother me much) and steamed veggies, or make a stir-fry with those, lots and lots of pasta, gala apples & blueberries, every veg imaginable sometimes I make sweet potato fries.

My doctor is worried about my B12, I'm waiting on the test results right now actually. I'm a lazy veggie, and quite poor, so I take what I can get haha Although there are a whole lot of interesting meals you could make off the diet list, but as you said, the lack of soy would be a problem.

[glassd18]

Polygon. I was a vegetarian for a couple of years before my IC really began to have worsening systems. I really should try some Tofu just to see how I do, but then again I would have to supplement B12. Whole Foods has a sublingual B12 with very few ingredients. It's base is lactose. I had so much trouble finding one that didn't have all kinds of other additives for flavor, but this one is good. The B12 itself seems to flare me though. I'm thinking of getting shots, but I'm so sensitive that may even bother me as well...This disease is crazy, and for me really complicated.

[Mothergoose]

I am sensative to lots of things.

I get a B12 shot every week with no problem.

[polygon]

I'm thinking the B12 shot too might be the best option, as I'm (mildly, it's not too bad) lactose intolerant.