Is there a difference

[shaun10]

Is there a difference between elmiron instillations and whatever DMSO is? Ive been getting elmiron instilations. Ive had 3 in 4 weeks and i get a day or 2 relief nothing more. I want to ask my doc on Friday but I wanted the expert opinions of people on this forum. Should I stay with elmiron instills or ask for the other stuff? Thanks

[cmclien]

I haven't had an instillation yet but my UG does two kinds: 1) is DMSO which can be helpful though he says it isn't tolerated by everyone so he does the following more often as it is soothing and he said usually by the 2nd or 3rd one patients are feeling quite a bit better. 2) a mixture of the following - marcaine, heparin, kenalog. I meant to ask him if he does elmiron but apparently he doesn't but I don't know why.

Hopefully someone will post with more info.

[ICNDonna]

DMSO and elmiron are entirely different medications.

Donna

[sailawaygrl]

Cindi,
If he is using heparin it is giving the same effect as the elmiron.

Shaun,
Instills typically only last a short term but for some of us they do help us to have pretty good days. When you are instilling the elmiron it is getting 100% of the meds to your bladder and when you take them orally only a very small amount reaches our bladders. So, in that respect I feel that the elmiron ones a very helpful, but they will take time to "build up" the GAG layer and give you relief. If is very good that you are getting relief fo a a day or two. Many of us do instills at home on our own. I do my own and it gives me a great feeling of control of my IC. Some days I am doing ok and don't need them, but if I do need one, it only take about 2 minutes and I am feeling relief. You might want to ask your Dr about doing them on your own.
As for DMSO I don't have personal experience with them. I have read that many IC Drs no longer use them. You might want to do some external research on their effectiveness before you go that route. I know that some on here say they gave them help but they are painful at first if I understand them correctly.

[cmclien]

Cindi,
If he is using heparin it is giving the same effect as the elmiron.
.

Thanks, my dr didn't tell me that.

[ICNDonna]

Elmiron and heparin are totally different medications. However, both can help sooth the bladder.

Donna

[sailawaygrl]

From drugs.com.

Elmiron Description
Pentosan polysulfate sodium is a semi-synthetically produced heparin-like macromolecular carbohydrate derivative, which chemically and structurally resembles glycosaminoglycans.

They act in the same way to repair the gag layer in the bladder, from everything I have read and as I understand.

[hoping4acure]

They are not the same thing.

I have had both. The elmiron was a lot less abrasive to me. I didn't like the idea of the heparin. BUT that's just ME. I was doing Elmiron installations up to 3 times a week for months. Yes, it is a quick fix for some, as with I.

Now, DMSO treatment are totally different. Again...not for me, I personally think they made my bladder worse. It burned and it just felt horrible. Not to mention the taste in your mouth afterwards. Stop and think about that, if something makes you have an after taste, what the heck is it doing to your insides?

The hydrodistention is what helps me, it a lot less abrasive. I can go for 1 year or longer. I haven't had one in 16 months...the longest I have gone with out one.

Good luck, it just remember, what works for one, does not always work for another.

Hang in there, you will find what works for you. Staying on the IC diet is the biggest thing.

[bob04951]

There are so many different combos of instills, just as there are oral treatments, diet, etc., etc. Our uro told us to try at least 6, it did not work for Bob. He was heparin, lidocaine, saline/baking soda and Elmiron. He did it at home. It works for some, you have to do your own research prior to. Go with it, and ask your doc how long before I know this is working? How many? And what happens next? Hope you get relief from it. Jill, wife of Bob

[cmclien]

Here is what I found on heparin which basically does the same type of thing as Elmiron:

Heparin is a compound that has both anti-inflammatory and surface protective actions. While this drug can be given either by injection or by bladder instillation, the method of choice for the treatment of interstitial cystitis (IC) is bladder instillation. Heparin can mimic the activity of the bladder’s mucous lining, temporarily "repairing" the GAG layer, which may be defective in IC. It can be used as a primary treatment method, or as a "maintenance medication" to supplement other types of treatment.

[sailawaygrl]

Thanks Cindi,
That is what I was saying, they do the same thing, and they are doing more than just soothing our bladders they are both (hopefully) rebuilding our bladder lining. I just posted this somewhere else but from what I know of the elmiron instills is that the use of elmiron in instills seemed to have started when there was a large heparin recall several years ago and none of us could get heparin. That is when I was told to start using elmiron until there was a stock of heparin again.

Hoping,
Can you elaborate on what you mean by abrasive? I have had both instills as well and I am not sure what you mean by that term. Are you referring to the fact that the elmiron is more granular since it is a powder? Or do you mean abrasive as a feeling you have in your bladder? I know we all have different ways of describing our pain or other sensations. I always find it hard to describe the way my bladder feels at different times.