iAluRil / Cystistat

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Hello there

Some on this forum have said they have tried / attempting to try iAluril (and Cystitat which I think is the equivalent).

The patient is suffering from severe Cystitis (caused by five rounds of BCG) and in enormous amount of pain / urine incontinence. There was a talk of removing bladder altogether but this is now being put on hold and currently trying anti TB medication for the last month. I am not sure how effective this is going to be.

Although not a single doctor have mentioned iAluRil so far and wanted to know if anyone has experience in this and what are the chances of Cystitis getting cured?

  • Hello Anon,  yes I have had many Ialuril instillations over the last couple of years for BCG cystitis. I'll be honest I had to fight for it at first, it wasn't exactly given to me on a plate. I still have monthly treatments even now. Having said that since this January it has improved immensely. I can only assume that the treatments did help me and I'm now contemplating perhaps stopping them, obviously I'll have to talk with the nurse. It's been a long process but if this is the end of my cystitis it's well worth a shot.

  • Thanks Jacardanda.

    Can I please ask how bad was your Cystitis?

    The patient I am talking about is 74/Male and quite bad - he had to urinate every 10 minutes and in pain all the time. He is on Urinary Catherer as that level of urination is simple not practical to live with. 
    Was yours similar experience from what you remember please?

  • The other question is; any ideas why Doctors are pro-actively recommending iAluRil? There was someone on this forum had to ask for it too.

    You are having a great experience after having this so clearly this seems like a solution (or atleast one of the solution) but I am not sure Doctors aren't recommending this?

  • At its height I was going a couple of times and hour, obviously more so because you're told to drink countless glasses of water. Nights were disturbed, it became part of my life. It was quite life limiting not just because of the constant feeling of needing to pee but with pain and discomfort. Occasionally I had bladder spasms that were excruciating. I never had a catheter apart from coming home with one from my first TURBT. I was always told it would eventually go so I clung to that notion but it was quite a journey. Of course not every BCG patient suffers these after effects I was just one of the unlucky ones. Having said that I'm more than grateful that it has worked so far and kept the cancer at bay.

  • I don't know if it's anything to do with their budgets but the CNS had to get it past her superior before I could have the instillations. I guess also different hospital trusts also have alternative approaches to treatment. It's not a magic wand but it helped knowing that at least something positive was being done to improve the situation.

  • Thank you for that - those symptoms are similar to the closed one I have.

    Can you please tell me how long ago was that? Basically I am tyring to figure if iAluRil was given (or its alternative) how long after it will likely to see improvement

  • Well I started mid Jan in 2022. I  initially I had a series of eight weekly instillations then I had a break. My bladder was still showing inflammation after one of my cystoscopy's and it was agreed to start them again in March last year, monthly. I've been having them so far monthly up until now. Please remember patients will react differently to treatment, my experience was that these instillations didn't cause any problems because what the mixture consists of is what is already in your bladder so nothing alien. It is painless and takes less than 5 minutes to carry out. I hope this helps and your patient gets some relief from what they're through.