I am in a bind if I stop elmiron and if I don't

[emilyrose197377]

The elmiron caused my ulcer to bleed . I went to the er weakness and dizziness and dark stools and severe abdominal pain. They gave me fluids and ran a cbc they said I was a little dehydrated and anemic from blood loss. They gave me fluids. and gave me something to drink before I left a numbing med for my stomach to coat my ulcer. They are saying it's from the elmiron . If I stop taking the elmiron I will be in a different predictment . I will be hostipalized for my urethra and bladder being swelled shut and in alot of pain. If I do continue taking the elmiron my whole stomach will be ate up with ulcers and gi bleeds and be sick from that . My gyn won't prescribe me the other treatments for ic like hydroxine or elmiron instills. I am dizzy as I type this.

Kim

[dyno]

Kim, It may be time for you to find another Dr. Any Dr. unwilling to try different treatments when you are having the trouble you are on Elmiron is not a very cooperative Dr. IMHO.

There are a lot of people for one reason or another that can't take Elmiron, I am one of them. After a few months on it I started getting sores in my nose. They would clear up after I went off of it and came back when I would go back on it. I also have a sulfa allergy. A very small percentage of patients who take Elmiron with a sulfa allergy will have a problem with it. I itched terrible at first and then it let up some but it still continued.

I would have no way stayed on that medication knowing what it was doing to me. If my Dr. would not have tried other things I would have went elsewhere. You may even have to try a Primary Care Dr. if your gyno won't prescribe other treatments. Are you working with a urologist? If you swell up after you go off of it and you do end up in the hospital, they are going to have to figure something else out and you can't stay in the hospital forever and you have the right to refuse Elmiron.

I hope they get something figured out soon because you can't continue like this.

[emilyrose197377]

Jolene , I am going to see my family dr. On Wed. Your right I can't continue like this . I am going to ask my family dr. to prescribe hydroxine to see if that helps. He is willing to help me. My uro is the same way . He won't prescribe anything but urecholine and urised which made me sick . I think it's time to shop for a new dr. even if it's out of town if my family dr. won't help me.

Kim

[ICNDonna]

I have to agree that finding a new uro is a good idea if the one you have can't help you. My gyn doesn't treat my IC.

Donna

[emilyrose197377]

It's not that easy Donna I am under managed care for my health insurance. I only have one other uro that accepts my insurance in my area . I will call him tommorrow and see if he treats ic patients . I have to go where my hmo sends me .

Kim

[Babs RN]

Kim,
I hope your HMO lets you see an awesome doctor-this ulcer is dangerous and you need some to hop on the whole IC/ulcer bandwagon. I'll keep you in my prayers.

Hugs,
Barb :grouphug:

[emilyrose197377]

I hope so My family dr. seems reasonable I will try explaining to him what will happen. when I go off elmiron. Maybe I can get him to prescribe me hydroxine.

Kim

[tigger_gal]

Kim,
sorry your in such a pickle... If you write to your insurance company and ask permission to see a certian doctor because you need treatment, they should approve it.
Brat

[emilyrose197377]

Ty Cindy, Nope doesn't work that way my dr. has to put in a preauthorization.

[Bianchi]

Gosh, I cant believe he wont give you instills. I also have an ulcer and could not take Elmeron. After trying a few days I called my URO and she immidiately ordered instills, which saved my life. I dont understand why he wont do it, could it be he has never done them?
I am sorry about all your problems, Maybe your family Dr. could call your URO?
Bianchi

[dyno]

Kim, maybe it would be helpful to print off information from the website to take in with you to discuss as "options" with your Dr. For instance this is an excerpt from Dr. Parsons in the Guest Lecture Series on our site.

<icnmgrjill> You've also championed the use of hydroxyzine with or without Elmiron. Can you tell us more about your recent observations??

<drparsons> For years now, I've had both drugs and used them extensively in several thousand patients. I would simply summarize by saying that Elmiron is the cornerstone to rebuild the bladder surface but allergies are frequently what is breaking it down and you need hydroxyzine for that. Give me hydroxyzine and Elmiron and I can make 90% of my patients better and keep them better. At least 70% of patients need both medications and they will always need both.

Most of my patients tend to stop the Atarax but they will pay a price if they flare during the allergy. They will take three months to really improve again. One bad allergy flare and they usually listen to me. You only need a low dose hydroxyzine.. 25 mgs at bedtime. I think that it is far more important than Elavil.



Maybe take in several options you would like to try and let the Dr. decide then what to try next. I took the IC Survivial Guide book with me to my appt. and my urologist did look at it for something. Just a thought....

[Katrina]

Kim have you ever tried Elmiron instillations??? That should hopefully keep it from hurting your stomach and you may still get the benefits...hope you can get a doctor to help you!!

((((((((((((((Kim))))))))) Certainly hope you get relief...praying for you!
:kiss: