new sodium hyaluronate solution for instillation

[april ryan]

Hi there,

I will be treated for IC in London, and my urologist - after the cystoscopy / hydrodistention will probably treat me with this product:

http://www.cystistat.com/en/index.html

It's a sodium hyaluronate solution injected from the vagina (scary!!!) into the bladder.

I know that this medecine has not been approved yet in USA, but maybe you have something similar?

Apparently the solution replaces the coating of the bladder and helps to restructure it.

I've been in contact also with an Italian researcher that ade experiments on this treatments and it seems that there are not side effects and 2/3 respond quite positively to the cure.

He also said, as my urologist, that the solution to the problem is near..

We all hope so!! :)

[Claredale]

I have read the information you have provided in your link and it is very exciting for the IC world. The only thing I am leary of, which I am always leary of reading statitics that say that a certain group of people respond to a treatment successfully. I am certainly not trying to take the wind out of your sails. We are all searching for what treatment will benefit us as individuals and hopefully IC as a whole. April, many people can tolerate bladder instills quite easily. I know several that are able to do their own, they have become such pros at it that it is just second nature. Even I learned how to cath myself to manage my retention early in my diagnosis, which once you can do that, the instilling of a medicine is easy. I only know that from what I hear, I never actually did it. I had never even heard of a rescue in still until well over 10 years after my diagnosis. DMSO "cocktail" was what I was familiar with.

Cystistat stats sounds very similar to how DMSO was presented to me early in my diagnosis 20 years ago. I can't tell you how many times I was told that most of my doctor's patients had great success with DMSO, but obviously, I was the exception. It was also used to in joints for faster healing. Which for me ended up causing me more major problems with my bladder, which now I realize was probably because I was given the high concentration. My doctor just was doing what he had learned in his training of IC. I am pretty sure he has changed his regimen a long time ago.

Then when I had to change doctors later on in my IC, I was given a heparin instill (definitely against every fiber in my being) since my 2nd doctor that was a Pelvic Pain Specialist) had already told me that it would be best for me to avoid caths unless absolutely necessary, even though they used the smallest cath and I had the assurance that it could take a few treatments before I saw the benefits, my treatment was thrown back several months. Now I am not a candidate at all for any type of instills. My bladder and especially my urethra can't handle being manipulated or I can count on a flare.

When I read studies like this, I am very prayerful that it will be a huge leap for people that are just starting down the road with their treatment of IC. That it gets to them in time before other treatments make it harder to be successful.

Again thanks for your post. I know Elmiron was widely used in other countries before it was approved in the US. I always wonder if it would have been available when I was originallly diagnosed if it would have been the med that helped me. But being 10 years later and other unsuccessful treatments that possibly ruined my chances, I was given the chance with it, but it was just too late. That is why I so encourage people to try it especially people that are newly diagnosed (early diagnosis is soooo important) to give your body a chance to conquer IC.

Hugs, Tracey

[ICNDonna]

I've been hoping the FDA will approve this one fairly soon --- I'd like to give it a try. I did look at the link and it explained that the medication is instilled directly into the bladder through a catheter in the urethra (not the vagina).

Donna

[april ryan]

I know the injection part sounds quite strange, I am contacting also other patients in Uk and none of them replied that htey have received the treatment this way.

The doctor clearly said that, so I guess it's just unusual practice (maybe is better, maybe not!).

I'll try to find out as much as possible about that and let you know soon.

Thanks for your responses.
xx

[april ryan]

Some news. I have read linked from this website the articule about Hyaluronic Acid/Chondroitin Sulfate instillations (instead than simple Hyaluronic Acid).

Because the doctor who wrote it is Italian (I'm italian too) I felt more confident to send him an email asking for info; he kindly replied attaching the whole articule! He sais that it seems that this formulation in even better, and that there has never been a bad reaction to Hyaluronic Acid or the combination Hyaluronic Acid/Chondroitin Sulfate .... He also said that I shouldn't worry because there are good treatments at the moment, and the definitive solution might be very near.. good news I guess!

I am not sure which exactly my doctor wants to give me, but now I am more prepared on the subject and I can ask him in our next visit.


It's a little bit early for me for enthusiasm or for depression, seen that I still didn't even have my cistoscopy yet! But I want to share this research with you anyway.
xx
April

[Dorma]

Hello,

I have just agreed to start this treatment and my first instill in just over a weeks time. I also read that it is not yet approved in the US which is why many people on here may not be that familiar with it however I believe there are many similar instill products.

I will let you know how it goes and likewise keep me posted!

[dngwic2]

Hi to any who may remember me. As for the instills. I have been taking some sort of combination of Elmiron, lidocaine, sodium bicarb, and heparin since Jan 2007. I have done them at home since the beginning. Very scared, icky but really better than someone else. I did have dmso done in the office I think in 2005. Anyway, I started the treatment with 3 instills a day. Currently I take 10 to 14. Things have changed. I can sleep even though still up 4-6 times a night but, I CAN go back to sleep. Big deal to me. I was hardly sleeping at all and never deeply. Now I even dream once in awhile. My pain is not under control, I still have the whole syndrome thing where every organ in my abdomen wants to get involved in the screaming. I exist in a state of high anxiety. I am profoundly depressed, isolated. My previously unshakeable marriage of 33 years is deeply in trouble. I always thought he would be there for me but, I believe what IC has made of me is unforgivable. I am impossible to live with. Sorry to vent here. Probably wrong section. I never did know how to work this thing.
Jacqui

[L. Thomas]

My treatment for IC is bladder instillations as needed. The instills are lidocaine/heparin instills. I think it is probably the same procedure just different medicines. The catheter is not inserted through the vaginal wall but through the urethera in an instillation. The medication is then instilled directly into the bladder.

I do these instillations by self-cathing. I have been doing instillations since I was diagnosed several years ago. I am totally pleased with the results.

When I read the patient brochures it tell the generic name for Cystistat (sodium hyaluronate). It also says that Cystistat is patent protected in the US and Canada.

Now you will probably be blown away by this:
Synvisc is sodium hyaluronate that is injected into the knee for joint pain. It is made from a chicken comb. I have had Synvisc injections for serveral years in my knee. If Cystistat is anything like Synvisc it will either be fantastic or it won't do a thing and the only way to know is to try it. Synvisc takes 3 injections at 1 week intervals. You will know if it is going to work for your knee within 6 weeks.

In the US the Synvisc injections are very expensive. I have good insurance and they pay almost $200 to my orthopedic surgeon for each injection..that is not the office visit..just the injection.

[severtt]

When you mentioned that the medication in this type of instill is from an animal, I cannot help but be reminded of something that my cousin, an RN, told me about two nurses, both with IC. It seems that they had instills with horse serum. They both claim that they were having a really terrible time with their IC.
It happened a long time ago, and I cannot find the doctor's name in the city now where they went for the instills. It is odd, however. My cousin is an extremely honest, sincere person, and she said that the nurses involved were very trustworthy. There wouldn't be any reason that I can see why they would lie, and it is extremely improbable that both were relieved of their symptoms unless there was something that worked with this medication.
Also, I may be that since it was from an animal, the FDA did not approve. They tend to go with chemicals all the way.

Diagnosed with IC in July, 2008, instills of Emiron, and the usual suspects. Not working, unfortunately. They seemed to help at first, but I am having pain something profound now.

[DenySue]

Hi there,

I will be treated for IC in London, and my urologist - after the cystoscopy / hydrodistention will probably treat me with this product:

http://www.cystistat.com/en/index.html

It's a sodium hyaluronate solution injected from the vagina (scary!!!) into the bladder.

I know that this medecine has not been approved yet in USA, but maybe you have something similar?

Apparently the solution replaces the coating of the bladder and helps to restructure it.

I've been in contact also with an Italian researcher that ade experiments on this treatments and it seems that there are not side effects and 2/3 respond quite positively to the cure.

He also said, as my urologist, that the solution to the problem is near..

We all hope so!! :)
April,
Thanks for this info. I work for a plastic surgeon and we inject hyaluronic acid fillers all the time; they are the popular products that plump up the unwanted wrinkles or enhance lips, and is very safe. Hyaluronic acid is naturally occuring in the body (joints)and I have never seen a reaction to it. Is this Hyalronic Acid/Chondroitin Sulfate the same thing as the Cystistat you mentioned, or something didferent?
DenySue

[L. Thomas]

Just thought of something. Several physicians are treating IC with Botox injections (neurotoxin botulinum). I am pretty sure Allergan holds the patent on Elmiron and Botox. Elmiron is an oral medication to treat IC but it is also an ingredient that is included in bladder instillations. Even though Botox, Cystistat and Elmiron are not chemically the same it does make me wonder.

[DenySue]

Botox is Allergan, but Elmiron is Orth-McNeil, and that Cystistat had an Irish company...Bioniche Pharma? Wonder if it has ties to any US pharmaceutical companies? Several companies make hyaluronic acid products....Allergan, Medicis, Mentor.....I think I will ask our Allergan rep is she knows of any research going on in this area.

[L. Thomas]

Thanks for straightening that out. I thought there was some connection between Allergan and Elmiron. Dr. Dell had posters from a conference where he presented research results of one of his studies about Elmiron. It was sponsored by Allergan. I noticed that one of the medical concerns of Allergan was overactive bladder and since the results of the project were about Elmiron I naturally assumed they held the patent.

[Vicki]

I've been hoping the FDA will approve this one fairly soon --- I'd like to give it a try. I did look at the link and it explained that the medication is instilled directly into the bladder through a catheter in the urethra (not the vagina).


DonnaI have done these treatments. My doc instilled one vial of the med. during a hydro. Then, I did six more treatments at home. I felt like it did help but I am not cured. My doc used it for another one of his patients who had no success with any treatment and it really helped her. You have to get your doc to write you a script, then you fed-ex the original to canada and they will fed-ex the medicine. I think it was like $200+ for a vial of it. Let me know if you need all the contact info. and I will look it up in my files.
-vicki

[Vicki]

When you mentioned that the medication in this type of instill is from an animal, I cannot help but be reminded of something that my cousin, an RN, told me about two nurses, both with IC. It seems that they had instills with horse serum. They both claim that they were having a really terrible time with their IC.
It happened a long time ago, and I cannot find the doctor's name in the city now where they went for the instills. It is odd, however. My cousin is an extremely honest, sincere person, and she said that the nurses involved were very trustworthy. There wouldn't be any reason that I can see why they would lie, and it is extremely improbable that both were relieved of their symptoms unless there was something that worked with this medication.
Also, I may be that since it was from an animal, the FDA did not approve. They tend to go with chemicals all the way.

Diagnosed with IC in July, 2008, instills of Emiron, and the usual suspects. Not working, unfortunately. They seemed to help at first, but I am having pain something profound now.


I would say they did DMSO instills. Veterinarians use it to treat horses for founder. They run it into their bodies IV to get rid of the toxins the horses bodies gives off in response to the inflammation of the laminae in their feet. Also, DMSO is used to paint on injuries to horses tendons and ligaments . It carries other medicines to the injured area really efficiently.

[severtt]

Why is Cystistat allowed in 20 major countries but not the U. S.? This is seriously skewed. The research that was done in the U.S. showed it too be just as effective as the placebo. But the test was done for only 8 weeks!!!!! I cannot believe that. It takes Emiron 6 months to a year to be fully effective--and as the insert plainly states, it is good for only about one-third of patients. Research in other countries (yes 20 of them apparently agreed) showed it to be effective in two thirds of patients.

Cystistat is approved by Health Canada as well as the competent Health Authorities of the European Union, Norway, Switzerland, China and other countries for the temporary replacement of the GAG layer. Cystistat is instilled in a safe and simple procedure directly into the bladder.
By temporarily replacing the GAG layer in a patient's bladder, Cystistat helps to relieve pain and the urgent need to urinate that is a common symptom among patients with interstitial cystitis. Cystistat must be administered by qualified medical personnel, usually urologists. Cystistat is also showing a preventive effect in bacterial cystitis and radiation-induced cystitis.
Cystistat is in a class of treatments that involve instillation directly into the bladder via a hydrophillic catheter. Cystistat has proven especially effective in providing symptomatic relief for patients with IC
Cystistat has proven highly effective in these three types of cystitis:

Interstitial Cystitis

Radiation-induced Cystitis
I have read many posted for IC patients in other countries, and virtually all of them have reported positive outcomes with this drug.

Americans should be, in my opinion, outraged at this. Something is seriously wrong--remember 20 versus 1 equals a fairly non probabilistic universe.:cussing: I realize that just as a human being I cannot possibly know the true nature of anything. Quantum physicists have confirmed this.
Rather dismal, but true enough for me

[L. Thomas]

I would say they did DMSO instills. Veterinarians use it to treat horses for founder. They run it into their bodies IV to get rid of the toxins the horses bodies gives off in response to the inflammation of the laminae in their feet. Also, DMSO is used to paint on injuries to horses tendons and ligaments . It carries other medicines to the injured area really efficiently.

Sodium hyaluronate is made from a chicken's comb. When it is injected into the knee we call it "chicken fat". They are not really sure if the injections replace the natural fluid in the joint or causes the joint to produce more fluid but they don't work on everyone. Sort of expensive to find out ($200+ an injection)

[april ryan]

Thanks all for contributing to this thread.

I have to apologize because my urologist messed up my mind when he was explaining the treatment... it is of course made via cathether, not from the vagina (he was talking about botox)..

I did 12 instills overall. I felt a huge difference with the 4 treatments every week.. I was about 90% better.. Then my insurance would pay for another 8 but monthly.. It started to be less efficient then, and I started both Elmiron and Lyrica. The latter was a big success, I am nearly pain free since I started 75mg in the evening.

Cystistat, though, was great, safe, with no side effects, and if I could I would do it every week still now!

April

[Briza]

Thank you for the update, April, and relaying your experience with these instills! Hopefully it will be something that patients in the US can try, too, at some point...without having to order it from Canada! It sounds like it was a very successful treatment for you...I'm sorry your insurance had such stipulations:( that made it unable for you to continue with this treatment at the necessary effective level/frequency for you. Insurance companies :bonk: boo hiss!! :(
But better than not having insurance at all, I'm sure most would agree.

[L. Thomas]

Fantastic