My Uro wants to talk to your Uro

[ISONormal]

:help: First, let me say that I GREATLY appreciate the way Lori, Laurie and others have been diligently posting their experiences with Cyclosporine A. It's been incredibly helpful to me and probably is the best thing I have ever gotten from this message board.

I need your help! I proposed the idea of Cyclosporine to my urologist in Feb 2006. He said he wanted to talk to other uros who had experience with it. He couldn't find any. I said if I get you some names and phone numbers, will you call them? He said yes. I'm still working through other options (see the drugs I'm on now in my signature), but I would like to work through this as a possibility so that we have it all worked out before I get to that point, so I don't have to wait.

Side story: Just yesterday [July 24, 2006], I got my first heparin/lidocaine/sodium bicarbonate instillation. WOW! Loved it. It works great. Funny thing is, I didn't realize how much pain I was in until I got the instill. Of course, I noticed the high levels of bladder pain, particularly when I had anything in the bladder, but I didn't realize that I was in general pain ALL THE TIME which is why I feel like someone has beat me up. My muscles have been so tense from the pain! Duh. After I got the instill (before voiding it), I just laid back in my car seat and looked at the clouds, listening to a Josh Groban song. I felt like I haven't felt in years: pain free. It was AMAZING.

Okay, back to the main reason for this post: If you are on CyA and your urologist is the one who prescribed it, would you PM me and give me his/her name and office phone number (and city/state, too, I guess)? I would REALLY appreciate it. We might get these urologists -- and us! -- educated just yet.

THANK YOU!!!!!!!!!!

[ISONormal]

I also wanted to add that his initial reaction to me was going to be that he would not prescribe it. I then made the case to him. I said, Look, I know the risks and the side effects of this drug. I understand those. But Interstitial Cystitis is a debilitating disease, causing awful pain and taking over your life [or words to that effect]. So it makes sense to me to try whatever it takes to get back to normal. He was nodding in agreement by this time. I was actually much more articulate in person and clearly knew what I was talking about. At least he's listening. It takes us awhile to learn to be proactive with our doctors. It's tough when you know more than your doctor. Really tough.

[ICLori]

Keeping my fingers crossed for you - I think I should PM you with the info that I have, it would be best (privacy for doctors.)

The best thing I've found (the only way to get docs to listen at all) is to bring in the study abstracts that you can find posted here in the message boards. I think they are easy to find - print them on out - and take them in if you haven't already done so. That is the only way I convinced my doc to let me try it. Just talking to him wouldn't have done the trick.

Okay, now to enable my PM so I can PM you, LOL.

Wishing you the best of luck! Yeah, uros don't understand how awful this disease can be - if they did, they wouldn't hesitate to prescribe CyA or anything else. I would gladly trade years of my life away, to be pain-free for the remaining years I had left. That is the bargain with the devil that I made. And maybe CyA isn't really all that risky....the studies say that it is safe and effective to treat IC, so who am I to argue with the studies?

Blessings,
Lori

[IcyAngel23]

I just sent you a PM.
I gave you the dr info and so you can tell you dr if he is hesitant to give it to you if you're in child bearing years. I'm in prime child bearing years. So don't let him tell you that they don't give it to people that young. I'm 24 so you can tell him there is someone who is in CBYears.'Hope this helps
Let me know if you need anything else
Kristin

[ICLori]

I find that sometimes doctors understand the seriousness of this disease better if you write a long list of all the things that are negatively impacted by this disease - e.g., work/career, hobbies, intimate life, friendships, home keeping, child care, community involvement, etc. If you can show him how truly debilitating this disease can be - if he sees you don't have any kind of a life now, any kind of quality of life I mean - maybe he will be less reluctant to let you try CyA.

The studies will help too. Promise me you'll print those abstracts out to show him. They are your best persuasive tool for your doctor.

Blessings,
Lori

[IcyAngel23]

Good advice Lori.!!!

[Bozema]

ISO-

I'll be sending my PM momentarily. Ditto everything that Lori and Icy have said.

I'm amazed by how many doctors think it is somehow OK to live with the symptoms of this disease. If they lived with it for even one day I think they would have a different point of view. Living with chronic pain impacts your life and health in so many other ways, it's amazing they are worried about the side effects of this drug.

OK - off the soap box.

One other tip - try to have your doctor consult with other uros or doctors in general that do transplant work. This drug is regularly prescribed for transplant patients. My uro trained in a facility that did a lot of transplant work so he was familiar and comfortable with it from the outset. In fact, he was the one that told me about the research.

PM on its way. Good luck!

-Laurie

[ISONormal]

Lori, Kristin and Laurie, Thanks for the PMs and the info! I will give all that info to my doc and see how it goes. I showed him the studies before and reiterated the cite from the Dec 2005 one for him at our last appt (last Monday). His learning curve is flat. Can't tell you, for example, how many times I've had to tell him why I can't take Elavil when he should know and remember (heck, read the stupid chart!), he is the one who prescribed it! But that's another story.

I'm wondering at what point you get to before you consider CyA? I'm going to look on other threads and see if you have talked about that for yourselves. I'm trying rescue instills now and want to see how that works out first. Then, I might try Lyrica or Neurontin, instead of or in addition to Effexor. Don't know for sure. It took me a long time to reconcile myself to the fact that I was going to have to 'experiment' on myself with different drugs. Just the time and waiting and pain involved is so difficult, but now I'm glad to have any alternatives still on my list of things to try.

I'll let you all know how it goes.

[IcyAngel23]

Well CyA is the last resort right now. If you haven't tried instills and some other treatments ,try them first.

[ICLori]

Great advice, Kristin, and I second it. Try every other medicine and treatment (except possibly surgical treatments) before CyA. Including whatever "odd" ones you can get ahold of, such as botox, Cytotec, any herbal remedies you are curious about (Algonot, etc., the safe and good ones are sold at the ICN shop).

Blessings,
Lori