elmiron + bladder photos

[sweetangel2080]

I have been on Elmiron nearly a year now but had a second hydro around Christmas time. Didn't see the pictures from it till last week and if anything I think the petechial hemorraghes is worse and have 'congestion' according to the nurse.
My first hydro was in 2005 before any treatments. Since then had cystistat, and after that been on Elmiron since.


I thought Elmiron would make things at least look better as it is meant to coat the bladder wall? Can I have been taking it for a year and it have no effect??

[tigger_gal]

if I am not mistaken Elmiron, helps the gag layer of the bladder for elasticity.

[icnmgrjill]

Wow, good question and there are several scenarios available. Yes, elmiron can often be seen coating the bladder during a cysto. So, the question is... why wasn't it showing on yours.

#1 - Perhaps your dosage isn't ideal for you
#2 - Perhaps the coating is being washed out. Are you, for example, still drinking any coffees, green teas or sodas?? The acid in those could play a role.

The challenge with elmiron is that it has a very poor bioavailability. More than 90% of it is rendered inactive by digestion. Thus, only a small percent of each dose you take might actually make it to the bladder anyway.

This is why some doctors are very excited about using elmiron or heparin directly into the bladder in the form of a rescue instillation because then, you know, all the meds make it to the bladder though, of course, some will be voided out the next time you urinate.

Also, it just may be that Elmiron isn't working for you. Aren't you doing anything else too??? Most of the time, patients taking elmiron will also be given, atleast, an antihistamine and/or antidepressant to help reduce and control inflammation. The antihistamine reduces mast cell related inflammation while the antidepressant helps control neuroinflammation. So, tackling both types at the same time is good.

Also, I will say that for patients who can't tolerate Elmiron due to side effects or because of cost, Cystoprotek, the OTC supplement, is becoming more popular because it does contain an ingredient, sodium hyaluronate, which has bladder coating properties.

Hope that helps. Remember, multimodal approach to IC!!! Don't forget the pelvic floor as well. The tighter the muscles, the more difficult it is for blood to flow, etc. etc. So, if you're struggling with pelvic floor tension, you definitely want to consider having a PFD evaluation, and perhaps some physical therapy. Home based relaxation of the pelvic floor (see the CD in our shop)... also can help dramatically!

Jill

[mlch]

wow, I'd be discouraged and disappointed too if I could actually see that it did not aid the bladder after taking it for a year. How do you feel a year later? Are things worse then when you were dx in 2005? Since you say the bladder looks worse I wonder how you feel. Sorry things were not improved for you. Of course Jill offers excellent advice above as always.

[sweetangel2080]

Jill, thankyou that is so interesting. Do you know where I could find more information?

If it is meant to show up in a cysto, why wasn't it in mine...ooh dear

I am worse than at my first cystoscopy but have more coping mechanisms now.

Really disheartening to think a year after Elmiron, no changes inside. Yes, I know my worsening symptoms should indicate this, but thought it may be better on the inside and just take time - plus elavil is helping me and elmiron a little ....

I have had cystistat instills for 4 months, Elmiron for a year, antihistamines for 5 months and Elavil since December. Now undergoing DMSO which is a KILLER! and soooo scared about the damage it could do. The pain left me unable to even get out of bed for 3/4 days!

Elavil helps but not without Elmiron. Interestingly stopped Elmiron for 2 months after the cysto due to funding and got extreme frequency so back on. My frequency is only 10 + times with Elmiron and Elavil but pain and urge are the main problems.

the only thing I could think of in Elmiron is lately have been taking 3 in one go rather than 3x a day, but only recently not all year.

I really hope others can post anything to shed any light on this.
Anything to do with Elmiron and bladder state.

I have been on the IC diet all throughout and only half a hint of decaff coffee (ie 4/5 granules akin to dishwater but found it less irritating than decaff tea as even a small dip was too much)

I have had IC for 2 years now and have read up on it online here and the dr moldwin book and sant book too, but never come across medications and state of bladder after.....

[sweetangel2080]

Jill and others,
Would elavil and Elmiron alone not be good enough for mast cell inflammation?

I though that elavil had antihistamine properties and Elmiron is meant to have some kind of mast cell inhibitory action as well?

I have been on cetirizine (cousin or something of hydroxyzine) but not at the same time as elavil.