u/gray_indoor_cat

So IC, for some, is believed to be chronic inflammation of the bladder. May proinflammatory cytokines are elevated in IC patients (IL-6 and other interleukins and well as many others).

Corticosteroids are some of the most powerful anti-inflammatory drugs we know of. The two studies I've cited below are the most robust and strong (and recent) studies of the use of corticosteriods to manage IC patent pain and have great outcomes. look them up.

In my personal experience, I've taken prednisolone dose packs and they have completely eliminated flares like clockwork. I'm talking going from a 8/10 in pain down to a 0 within days and then maintaining months of pain free time after. These dose packs i was given are the dose packs that deliver a very highdose followed by a taper to avoid steroid withdrawal symptoms.

The studies below use long term low dose steroid administration so its a bit different. But this was given to me by my primary upon my suggestion, who just trusts my judgment (I'm a scientist in pharma) and he is by no means an expert in uroglogy, IC, or chronic inflammatory conditions. so he simply gave the short term dose packs rather than try to mess with a long term low dose regime which is more complicated and demands a specialist. I probably could've gotten the same results with a much lower flood dose but these dose packs that are very common for a variety of uses are just the most familiar thing to a primary without expertist in this area of prescribing.

Urologists refuse to use steroids on me because steroids use is not part of the ADA IC treatment guidlines and they have to stick to only treatments listed there for liability reasons.

I'm visiting a rheumatologist this week (they are specialists in managing inflammatory conditions and the prescribing of steroids to do so).

Wondering if anyone had any experience in the use of steroids for their symptoms.

I'ld love to hear the experiences of others though if they have them. This is a rare thing off the radar of urologists so they were mostly surprised and unaware of these studies when I showed them to them.

References cited:

Yhiyuki Akiyama, Aya Niimi, Akira Nomiya, Satoru Taguchi, Yuta Yamada, Yusuke Sato, Daisuke Yamada, Daichi Maeda, Tetsuo Ushiku, Haruki Kume, Yukio Homma,

Efficacy and Safety of Low-dose Oral Prednisolone for Patients with Refractory Hunner-type Interstitial Cystitis,

European Urology Open Science,

Volume 56,

2023,

Pages 1-8,

ISSN 2666-1683,

https://doi.org/10.1016/j.euros.2023.07.006.

(https://www.sciencedirect.com/science/article/pii/S2666168323003920)

 

 

SOUCY F, GRÉGOIRE M. EFFICACY OF PREDNISONE FOR SEVERE REFRACTORY ULCERATIVE INTERSTITIAL CYSTITIS. Journal of Urology [Internet]. 2005 Mar 1 [cited 2026 Jul 5];173(3):841–3. Available from: https://doi.org/10.1097/01.ju.0000153612.14639.19

This was meant for the interstitial cystitis sub but it keeps getting auto deleted for "seeking diagnoses." It is no such thing and meant to be informative. so I'm posting here since the two subs have some crossover users and it might be of help to users here. Please forgive me if it is not relevant to your particular issues.

I see a lot of quercentin supplements for sale that are just plain old pure quercetin. Quercetin has a bioavailability (BA) of less than 1%..

Source: Dabeek WM, Marra MV (2019). "Dietary Quercetin and Kaempferol: Bioavailability and Potential Cardiovascular-Related Bioactivity in Humans". Nutrients. 11 (10): 2288. doi:10.3390/nu11102288

This means basically none of it is getting into tissue and providing its anti-flammatory action that we take it for. The compound is practically insolubile in water. Yes it has anti-inflammatory properties in vitro in studies, but if it doesn't get into the tissue it needs to be (bladder in our case), it's pointless since its metabolized and never reaches the tissue it needs to be in.

There are some products hat are Quercetin (henceforth referred to as "Q") encapsulated in liposomes. Lipsomes are are small vehicles which can be packaged with drugs or Q. Lipoomes have cell and muscosal layer permeability, so they can make it possible for this compoundto actually get to the bladder tissue then be released where it needs to be.

Phytosomal achieves a similar benefit, but it's just that quercetin is functionalized with phytosomal functional groups that help it permeate cells and get where it needs to be to be effective.

I tried quercetin long ago and go not results. After researching and finding out about its horrible BA I decided to give it another try. I'm not sure if its the new lipsomal Q or not, but I have been feeling better than I have for a very long time. Who knows, so many variables at play in this mysterious disease, but I just wanted to share this piece of information that is always seemingly overlooked and not mentioned when discussing this supplement.

I see a lot of quercentin supplements for sale that are just plain old pure quercetin. Quercetin has a bioavailability (BA) of less than 1%..

Source: Dabeek WM, Marra MV (2019). "Dietary Quercetin and Kaempferol: Bioavailability and Potential Cardiovascular-Related Bioactivity in Humans". Nutrients. 11 (10): 2288. doi:10.3390/nu11102288

This means basically none of it is getting into tissue and providing its anti-flammatory action that we take it for. The compound is practically insolubile in water. Yes it has anti-inflammatory properties in vitro in studies, but if it doesn't get into the tissue it needs to be (bladder in our case), it's pointless since its metabolized and never reaches the tissue it needs to be in.

There are some products hat are Quercetin (henceforth referred to as "Q") encapsulated in liposomes. Lipsomes are are small vessicles which can be packaged with drugs or Q. Lipoomes have cell and muscosal layer permeability, so they can make it possible for this compoundto actually get to the bladder tissue then be released where it needs to be.

Phytosomal achieves a similar benefit, but it's just that quercetin is functionalized with phytosomal functional groups that help it permeate cells and get where it needs to be to be effective.

I tried quercetin long ago and go not results. After researching and finding out about its horrible BA I decided to give it another try. I'm not sure if its the new lipsomal Q or not, but I have been feeling better than I have for a very long time. Who knows, so many variables at play in this mysterious disease, but I just wanted to share this piece of information that is always seemingly overlooked and not mentioned when discussing this supplement.