do they work

[mags]

Has anyone had relief with algonot or cystaprotek? What is the diff. between the two?

[Sarojini]

I have not tried them... but perhaps someone will come along soon and be able to answer your question. Good luck :grouphug:

[Romans8:28]

The cystoproctec is designed for IC, and includes a bladder coater! The Alganot doesn"t have the bladder coater! I have been on them for about 4mos. I do believe it is helping as part of my treatment plan.

[rubjen]

I Have The Cystoprotek, An It Realy Works For Me, I Had To Be Off Of It For 10 Days. An I Knew The Difference, As Soon As I Restarted. I Took Elmiron For 6months An Then We Had To Move An I Was In Remission So I Let My Scrip Run Out. When The Ic Returned It Was Bad. I Had To Find A New Uro An Start From Scratch. But The Cystoprotek An Elmiron Is Helping Me Have More Days Without Pain It Has Been Almost 10 Days This Time Without Pain I Hope You Find The Right Combo That Helps You As We All Know These Works For Some An Not Others. Be Sure To Try The Ic Diet It Realy Helps Also.i Have The Ic Cook Book An Slowly Try New Things,it Is A Long Process But Worth It.i Take Prelief When Going Out To Eat. An If I Want Some Thing I Know Will Cause A Flare, Which Is A Lot Of Things.good Luck An Don't Give Up,you Will Find The Way.
Ruby Jean

[Trishie]

I have been on 2 capsules of Cystoprotek a day (started in Dec. 04), I am also on Elmiron (started Oct 04) 2 cap= twice a day.
My Uro said that his patients that take Cystoproteck and Elmiron together seem to get better sooner.
Just a note cystoprotek makes me VERY SICK @ MY STOMACH - I read the literature that comes with it and it said to if that was a side effect - to freeze the capsules. Freezing them has really helped.

I am not sure if it is the combo or what but something is working. I don't go nearly as much during the day. I also watch my diet.

[Julie B]

I am finding a lot of help with the CystoProtek......and the same thing happened to me, I stopped it for a couple of days and noticed a difference. Other things changed during that time too, but as soon as I started the CystoProtek again I was happy. They are so good here at the ICN store, I get my order in 3 days (from California to Michigan!) Here is the link to the store: Alternatives (http://icnshop.com/cgi-bin/ustorekeeper.pl?command=goto&file=Alternatives.html&rtn=jb)

[kadi]

Don't order it if you're allergic to fish/shellfish. The Cystoprotek is derived from shark cartilage. Gave me a heck of a migraine/vomiting/bladder flare. I discovered several months later through allergy testing I'm allergic to fish & shellfish. Mystery solved....

[Dianne]

For those of you that take cystoprotek, tell me how many you take and how often. My sample arrived. I see one of you takes two/day. Do you take them at the same time?

[Julie B]

Hi Dianne:

I take one with my morning meds and one with my evening. HOpe that helps!

[Romans8:28]

The samples are just to see if it hurts your bladder. Alganot recommends when you get a regular order you start with 6 a day, 2 3x a day. Then you are supposed to go down to 4 a day, unless you are on Elmiron then you take less. I seem to need the 6 a day!

[Dianne]

Well I was having a pretty good day, best it ever gets for me. So good time to try a cystoprotek. At one hour I started burning. Then a few urethral type spasms. Lasted until almost evening. Better now. Same thing that happened with Algonat. Guess I'm not one of the lucky ones but had to try.

[yorkiemom]

I'm so sorry, Dianne. I was hoping this might be the answer to you. But I know you will keep looking and I know you will prevail!!! Sending you warm thoughts.

[Portia17]

HI

So u can take cystoprotek WITH elmiron. I also take desert harvest aloe vera. So can I take all three.

I just posted an article about elmiron under the elmiron section of the boards that they are now finding a link betwen breast cancer and elmiron

So can cystoprotek replace elmiron??

Thank you

[Portia17]

Julie

I clicked your link for alternatives but confused which one to buy is it the cystaq, or
or cystoprotek or cystoprotek-algonot 5. please tell me which one you use.

Thanks
Mary

[goldenbetty]

I have been taking Glucosamine Chondroitin and it has helped me. I am also willing to try Cystoprek - I'm in the flare phase right now.
I have a question, although rather gross. I find that my urine has a very foul and rancid odor when I am flaring. Is this the same for anyone else? Please let me know. I am at my wits ends right now. This is the lowest I have felt since I was diagnosed last year. I can hardly perform my job. Does I.C. qualify us for disability? I really can't afford to quit working, but I am just curious.
Thanks for any input. Life is tough for me right now.
Betty

[Portia17]

HI BETTY

I do not even know what the word flare means cause I have the pain all day long and wear a tens units as well so I can't help you there

I ordered the cystoq today so we shall see.

Life is hard for me too as I am out on disability from work and I know what you mean.

Maybe u should ask the uro if u have an infection

[goldenbetty]

Hi! Portia.
Thanks for answering. I had an infection right after I had the bladder suspension surgery last June. It took forever (3+ months) to kick it. Cipro saved my life. Now I am having the same symptoms all over again - cloudy urine, foul-smelling, and pain in the lower abdomen and vaginal area. I really have pain most of the time, but intense some of the time. I have learned how to try to "ignore" it. Who prescribed the TENS unit for you? Does it really help?
Betty

[Portia17]

Betty

My pain mgmt doctor prescribed it for me and I where it all the time and the insurance company paid for it.

Do you always have pain and pressure like me?

If so, how do u function?

Thanks

[goldenbetty]

it is not easy at all. I think I am reaching my limit. I can't even think about romance hardly any more. My husband has been wonderful, most of the time, about all of this. I know it is wearing him down too. I am going to my OBGYN to talk about my options this Wednesday. Nothing has worked 100%. I am still bleeding from the surgery site of the bladder suspension every time we are intimate. That is not right nor is it normal, and I can't accept the answer that I am dry. That is not so. I am ready to have a REAL DISCUSSION. Trust me. My patience has worn thin.

I'll let you know the outcome. Goodnight for now. We are having very bad weather in New Orleans right now, so I better sign off.

Thank you for your concerns.

[Portia17]

Hi Betty

I know what you mean.

If you want to email me it is ama0917@msn.com

Feel better

Mary

[rubjen]

Betty,an Mary, I take the elmiron an CYSTOPROTEC-ALGONOT5, it does help me.Do youdrink lots of water? I drink 8-10 12oz glasses everyday that is a lot but it keeps me flushed out fairly good,so my urine is clear,to real light yellow.On disability,I read on the boards about some one getting it.I belive it is under a thread called 'disability an IC. I do not think cystoprotec can replace Elmiron.All things are how your body handles it. Wish I could help you both more,maybe this will help some.
rub jen

[applebetty]

The csytoq helps me so I am not so weak, tired and achy all the time. I've been taking it for 2 months now but could tell the first day I took it.

[goldenbetty]

Thanks, Rubjen. Can I find the Cystoprotek at Walmart? I'm willing to try anything. I went to my doc today. I have a bladder infection, and we found the source of my bleeding. I had some granulation tissue at the site of the bladder suspension, in my vagina. He put some silver nitrate on it. It was very uncomfortable and now I have a heavy discharge. It will be worth it if it stops the bleeding. I have to go back in two weeks for another treatment.

[rubjen]

hi betty,sorry but wal-mart dosen't sell cytoprotec,but you can call1-800-254-6668 an ask for a sample to see if your can take it.Dianne a moderator got samples,i am sure she would share any info she has with you. here is a phone # 1-800-254-6668 that you can call also for info. hope this helps you .
rubjen

[Trishie]

Hi Portia
My Uro gave me a BIG bottle of Cystoproteck, it is sold in the ICN stores.

[Julie B]

I don't think that CystoProtek will help immediately. It has ingredients that they believe will actually heal the bladder lining. (Some correct me if I am wrong.) They suggest that you take it for a couple of months.......I read a lot of Dr. Theo's research and it looks good. Also, if you buy it from the ICN store you get it within a couple of days. :) (http://icnshop.com/cgi-bin/ustorekeeper.pl?command=goto&file=Alternatives.html&rtn=jb)

I sure hope that you feel better soon. HUGSSSSSSssssssss Julie B

[Portia17]

Julie

Hi and thanks for your help. I got the cystaq the other day and started taking that as well. Of course not results yet.

My uro says oh cystaq is garbage. You need alganot. I said to him I am so sick of you because you never educate me and then say negative things. Well i found on a urology board a different one that they recommend cystaq

I am trying to find a new uro

Thanks for your help

[Butternut]

You all who are taking Cystoprotek: When you go to the toilet do you notice an odor from the Cystoprotek? I always do. I have not taken it for a few days because I ran out and I don't notice the smell now. I placed a new order. I am afraid to go without it.

[Janie Miranda]

butternut, I definitely noticed a "vitamy" kind of smell. Found I got a similar thing when on the elmiron.

[Julie B]

I haven't noticed an odor........but I have had a long long lasting cold and maybe I can't smell it (that is scary, isn't it??? LOL)

[goldenbetty]

Does anyone notice an odor since taking Elmiron?
I do!

[Janie Miranda]

goldenbetty,
YEP. I did at first but it seems to have gone away. I'm on 300mg twice a day.

[jerry westgarde]

I have not posted for some time. However just putting a question out there in regard to combinations. I have been going with MSM Prelief and Desert Harvest Aloe Vera. I am one month into Aloe Vera with not difference in my present 2 week flare, has any one tried the Aloe Vera with the elmiron. I am thinking of adding the elmiron to my Aloe. Have tried Elmiron before with limited success, and some bleeding, in the urine so did not continue with it, however this time I will cut back on dosage.

[Lindsay K.]

urine with a foul, rancid odor sounds like a uti. try the uti test strips and confirm it is not infection.

[mela414]

I got sick to my stomach with Algonot...but after doing some food allergy testing and also realizing that eggs make me sick for days.....I noticed that it had eggs in it so I stopped. I am curious to know what is in the cystoproteck?
Why does glucosomine help?
with all my food allergies maybe I should do plain glucosomine.....if I can find one that is free of allergens.

[classics]

I have not posted for some time. However just putting a question out there in regard to combinations. I have been going with MSM Prelief and Desert Harvest Aloe Vera. I am one month into Aloe Vera with not difference in my present 2 week flare, has any one tried the Aloe Vera with the elmiron. I am thinking of adding the elmiron to my Aloe. Have tried Elmiron before with limited success, and some bleeding, in the urine so did not continue with it, however this time I will cut back on dosage.


I have just started taking Desert Harvest Aloe Vera along with Elmiron. I've been on the Elmiron 11 months and the Aloe Vera 1 week; too soon to notice a difference in burning, but I notice I'm peeing in larger volume than usual. There was very little change since taking the Elmiron 11 months ago, so my uro prescribed the aloe.

[mela414]

janie and goldenbetty,
do you have any side effects from the elmiron? has it helped and how?
I hear that hair loss may be a side effect. I've neer been able to tolerate it but am thinking of trying it again but opening the capsules and drinking it.
I don't know what to take for this terrible pounding pain. today I gave in to ultracet and it makes me weird...then gives me a headache. oh well....the drs office just called and told me to take pyridium.The reason why i felt so much better yesterday was because of the marcaine in the instillation. i'm so stressed over all this.

[ellienor]

what is the bladder coater that is in the cystaprotek.
Is that the ingredient that causes the stomach upset?
I used to take glucosomine and chondroutin and it gave me heartburn.
thanks!

[sweetp]

:loco: I am a little out of it.....but to the person who has the tens unit. What company did you buy it from. I unfortunately see there is a big difference between brands. :cussing: What company,,,and what model would be really helpful.

[hoping4acure]

I have been taking the algonot plus (cytoprotek 5) for a few months now, and it is one of the best things that worked for me....I'm the one in remission! Between that, the colostrom and the atarax, I feel wonderful :woohoo:



Louann

[sweetp]

I am so happy to hear that you are in remission. what is colostrum?

[hoping4acure]

COLOSTRUM is a gentle cleanser and it boost your immune system. colostrum is what comes out of "mothers first milk" when she is breast feeding. It really has helped me a lot.

[massagedoula]

I am glad to hear that the cystoprotek is helping you and you are in remission. I have been taking the cystoprotek for 1 week now, but had been taking the seperate ingredients (glucosamine, chondroitin, quercitin) from my naturopath for about 3 months prior. I switched to the cystoprotek because it was convienient to have them all in one, but mostly because I hoped that they would be more efficient, since they are formulated in this patented way by a urologist....So, nothing much to report yet, but I will keep taking them. I am very close to going on Elmiron, but really want to exhaust all my natural options before taking that step. I can't deny that my pain/burning is much much better than it used to be, but my frequency and urgency are still intense and unyielding....

[hoping4acure]

massagedoula: Hi! have you tried Atarax for the frequency/urgency? That was a godsend for me. I have read on the boards that some people cannot tolerate it. I feel bad for them because I got relief from it shortly after I started taking it. Have you tried corn silk for the burning? I have the kind that you put under your tongue....it helped me a great deal with the burning.

Good luck.

:)

[massagedoula]

What is the type of cornsilk that you can put under the tongue?

[hoping4acure]

Hi massagedoula...

It's called tincture. It's a liquid, and you put it right on your tonuge or under it. Look at the ingredients though. Some have grape seed alcohol in them and some IC patents can not tolerate it. I chase it down with some water.