questions

[hawkbabe]

i was diagnosed 2 months ago i startes elmiron but it makes me so sick and im also scared to lose my hair...has anyone that has taken elmiron lost chunks of their hair? also the pain i am experiencing is terrible i am considering dmso treatments i would like to hear really really honest anwsers about this treatment becasue i am afraid of the pain: from the catheter!
thank you-k:pray:::(

[amethyst79]

Hope this helps.. I haven't had either treatment but I just bought a book I think is great which describes both.

Elmiron- An oral bladder coating drug. Still new to the market, this drug has had a lot of hype. I know a lot of IC patietns who cannot tolerate Elmiron. I do know of some who feel it has helped at least some of their IC symptoms. So far, I am not aware of anyone who has had long-term success with this drug, but I don't think it's been out long enough to know yet. Elmiron is another drug that you have to take for a long period of time (3-6 months) before knowing if it's helping youor not. If it does work for you, you need to take it the rest of your life or your symptoms return. Some side effects that I've heard from IC patients include, but I'm not sure are limited to, severe headaches, rashes, stomach/intestinal upset, and clumps of their hair falling out. I know some IC patients on Elmiron who reduced their dosage to reduce and/or eliminate the side effects. Some people I know experience an increase in their symptoms while taking Elmiron. (So don't think you're the only person this has happened to if this was your experience.)

DMSO (Dimethyl Sulfoxide), which used to be used as an industrial solvent and as a horse liniment, is FDA approved for use as a treatment for IC. Some doctors say that DMSO helps to reduce inflammation and pain because it seeps into the bladder lining. And others say that it's purpose is to burn the bladder lining with the hope that it will rebuild itself, similar to a bladder wash. The garlic smell, which seeps out of your pores following treatments, is one of the more pleasant side effects. I know several IC patients who have had their vision permanently affected by DMSO. Many say that it caused weight gain and they could not get rid of. I also know that a rash or flu-like symptoms following treatments are also not uncommon. Many say that it made their bladder much worse and that they would never do it again. However, I also know some IC patients who had no adverse effects from DMSO. And there are a few that say it helped them go into remission briefly, but that it most certainly did not cure them. I also know a few people who had their leg/thigh permanently burned by the DMSO after it leaked out during a treatment. What does this tell you about what the DMSO is doing in the bladder? There are some compassionate doctors who first use some numbing medication before instilling DMSO to reduce pain and discomfort. And if you're lucky, your doctor wil also provide some type of pain medication before the procedure. One IC patient I spoke to said that her doctor gave her an injection of Demerol twenty minutes prior to the instillation.

******, Catherine M., (1998) To Wake in Tears: Understanding Interstitial Cystitis

Excuse any typos!

Chelle :cat:

[Dixiefireball]

i do take the dmso treatments at home heparin and marciane. the marcaine is a nerve block which stops my bladder from hurting and the heparin helps the bladder in a diff way to be honest when i took those first six treatments in the office i hated it it hurt but after doing many many other things to try to get pain relief i decided okay what the heck i have tried everything else nothing has helped:confused: a new study came out where it was safe to take heparin and marcaine up to three times a day as needed i started doing that at home and it has been a God sent. Personally I didn't like the Elimron and couldnt tell it was doing anything for me. but everyone is diff and it has worked great for others. I have no problem at all putting a cath in my self even my husband can do it without hurting me. maybe its because i'm more relaxed at home:confused: all i know it has really helped me.
sending you hugs and prayers
hopefully you will find the best treatment for you soon
Rhonda

[vm]

Others have definitely lost hair on Elmiron. Once you stop the med your hair comes back. :)

On the other side of the coin --- for anyone reading who is thinking about Elmiron ----- only 3-4% of people lose hair while on the drug.

I am someone who has been on it for over 2 years now and it has been a LIFESAVER for me. No side effects at all - only nausea the first few days - and I can eat whatever I want again. I feel nearly normal most of the time now.

Definitely worth a shot, but not a lifesaver for all.

[Katrina]

:grouphug: :grouphug: :grouphug:

[EllieA]

Hi,i to take dmso treatment and i think it's help me alot! When i frist got ic i took 16 treatments and the ic went away for 3 years.Now it's back and this is my 2nd treatment and it's already gone.As far as it hurting?It doesn't.If i were you i would give it a shot! Hope you feel better!
Ellie.

[aantol73]

Elmiron is hard on your body ... one thing my doc did was send me to my gyno to have my hormone levels checked... after that I started hormone therapy... go figure...
best of luck

[ICNDonna]

The biggest problem with elmiron is that it can take six months or more to become effective. Those who are helped by it sometimes have complete remissions as long as they continue on it --- and a few can stop taking it.

You may want to think about other treatments durig the time it takes for elmiron to be effective.

As with any medication, elmiron can have some side effects, but when the med is stopped, the side effects go away with the medication.

Sending warm healing thoughts,
Donna