Elmiron and maculopathy

[fany]

I'm in France and it's very difficult to get information about the dangers of Elmiron.
I would like to know if having it in instillations is less dangerous for the eyes than in the usual way (tablets).
Thanks for your help.

[ICNDonna]

This is a question I think you should ask your doctor. There are other instillations that are helping a lot of people --- some are using a combination of heparin, lidocaine or marcaine, in a water solution --- there are also other combinations.

I was unable to tolerate oral elmiron, but never tried it in instillations. I did self instill with heparin and a sodium solution and it did seem to help. The information coming out recently about elmiron is very disappointing,

Sending gentle hugs,
Donna

[fany]

I have been taking elmiron for 4 years and I have no IC symptoms anymore. Iam back atwork and live as I used to. But because of the risk of eyes damage I would like to take it in instillations. In France Instillations are not common, we don't have all those you wrote about, just DMSO and ialuronic acid. (they didn't work for me) Doctors here don't know Elmiron that's why I'm asking the question here, in France Elmiron was only allowed 4 years ago and my uro has never heard about any eyes problems...

[rantn.n.ravn]

fany,

I find it somewhat disturbing that your doctor is not aware of the Eye Disease issue but is prescribing Elmiron for you. If this doctor is not who is prescribing it I apologize for assuming. If you are changing doctors and that is what has caused the problem, the best thing I can suggest is to take the Elmiron Eye fact sheet that is available to your next appointment or make an appointment to speak to the doctor about this and asking about using instills. The link to the fact sheet is listed below. I have had one lidocaine instill and while I was there the doctor asked if I had my Elmiron with me and took two caplets and added it to the solution. So It was done for me but as an in office procedure. I was going to do more instills but Heparin was in short supply and my insurance would not cover the pharmacy they normally order the instill kit from and I could not afford to pay for it myself. When we discussed it another time we tried to just get heparin to add to their in office instills of lidocaine and I got it finally from the pharmacy and then my doctor suddenly had left her practice. So the heparin has just went bad I assume because it lost all color in the vials. My new doctor is adamant that instills never help anyone and only cause more infections. No patient she has ever had was helped by them. She also will not prescribe anything that can become addictive, she will only prescribe diazepam as a suppository. This is again something insurance does not cover because it has to be compounded. I did get some in the past from my first Urologist that was treating me for IC and I've used 3. The first one was failure because I could not keep it in. The second time was a huge mess. The third time I stayed in bed with my lower body propped up on pillows for an hour. So yes it helps but it's almost impossible to use and certainly not in any convenient way to be able to administer unless you are able to be at home doing nothing. I have already discussed using a pain specialist instead due to having other issues. I would have done so a lot sooner but it was brought up as a "negative" situation. I had been offered an opioid, Percocet, during my first appointment, I ran out and months later we discussed something that required me to not use any of the pain medications I was taking like an Nsaid, as well as no Elmiron because they all can make bleeding worse, and I was told "well yes I will give you another script today but if you ask again I will have to refer you to pain management." I thought it was to do with the medication and I was told about Tramadol in that office as well and so I was given a few scripts for it across a few years at that point. It is an opioid but has a much lower effect to become dependent on it. I am incredibly aware and careful about dependence because I have a family history of addiction. I currently have medications that were initially filled well over a year ago and I still have some in the bottle. I know I had to make them last but I have said consistently I would like something that helps me be functional but not something that makes me so sleepy I cannot be functional. A higher dosage or more of it than one dose during the day and maybe one to sleep without pain has been my inclination but I am guessing no one wants it to be use daily.

Either way my current Urologist did require I get my eyes checked. I did that last week finally and I have no signs of damage. And have a follow up in less than a year to keep checking. My Urologist seemed surprised there are two different kinds of eye doctors and had to make sure I saw an Opthamologist. So if you are concerned and can see an Opthamologist you should take the information sheet to one to ask. That is what I did so the doctor knew what I was specifically asking to make sure of. I hope that is helpful.

[ICNDonna]

I have been seeing a pain specialist for almost ten years now --- it was not specifically for IC pain, but has helped with that along with the pain from nerve damage following surgery. I have to say that he gave me back my life.

When insurance denies a medication or procedure, I have experience with both. My doctor's office has done appeals for coverage of medications several times and all were approved.

Donna