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Hello everyone...I hope you are all feeling good today! Well, I posted our story a few weeks back and finally yesterday my wife had her appt with Dr. Hanno. We brought everything that we had gathered on IC...including her voiding diary, symptom history/timeline, and lists of medicines and procedures that she has gone thru...they copied all of this stuff and put it in her file. All of your tips and stories on what to bring were very helpful...thank you! My wife had to fill out an IC type questionaire (which she scored highly on) and than he asked her a bunch of questions about her symptoms etc. He reviewed everything we brought and was able to pull up most of her surgical history on the computer since we started having everything done at his hospital (HUP). Next, he gave her a brief physical examination and than said that he would review everything and be right back...well...when he came back he officially diagnosed my wife with IC. He basically said that thru her symptoms, his exam, and exclusion due to her many, many procedures and dr's appts that she had IC. He didn't feel that it was necessary to put her through the cysto/hydro or the PST test. When he examined her and he touched her bladder...I thought she might faint...it hurt her really badly...which he promptly apologized for...her face was so red I couldn't believe it.
He than asked her if she had been treated for this with any medications and she said no...she had been prescribed a couple of things by the OB/GYN at Penn but wasn't real comfortable with taking them without more info and a diagnosis...one was pyridium and she wears contacts and doesn't have glasses so she was worried about ruining her contacts...the other was elavil and the OB/GYN kind of made it seem like it was in her head so that made her uncomfortable about that one. She also gets some pain medication from our PCP but not really enough to help everyday...her main symptoms are pain and spasming. So he said that she was a perfect candidate for a new NIH research study since she is what they call a "naive" IC patient meaning that she hasn't been treated with any of the medicines for IC. The research dr than came in and explained the study to us...it is a study that compares treatment with elavil and training with just training. I think by training she meant breathing exercises, bladder training, etc...anyway, my wife has decided to participate and she will need to report once a week, keep a medicine and voiding diary, and do a couple other things. She gets free medicine, I believe, and a small stipend periodically...the whole study will last 12 weeks and she starts in a week. I think they start you out at 10mg and gradually increase it to no higher than 50mg and you are supposed to record all of your symptoms and how they change with the different doses and what works best for you. She also gave us her card and cell# to reach her whenever we needed. The dr explained how the elavil is used to treat IC and talked to her about the side effects and I think that made her much more comfortable with giving the elavil a try...hopefully it helps her...I know it has helped alot of you.
He talked to her about elmiron but he said that they generally don't use it very often at this practice because of the expense, side effects, and the 30%success rate...but he did say that if she wanted it he would have no problem prescribing it for her. She tends to be pretty sensitive when it comes to medicine and side effects...she almost always gets them...especially antibiotics. She asked the research dr what she should do about pain in the meantime and she said to continue what you are doing now...what...struggling in pain basically everyday since her pain meds have run out. So hopefully our PCP will refill her prescription when she goes to see him
FYI - they also mentioned another study where they basically take a urine sample and than store it to be compared with others...what this study is looking for is biomarkers in the urine that may be IC specific in the hopes of finding something that may allow them to identify IC in people when they are infants...so she said she would give them a sample...strangely the dr said, "You will be unable to get your samples back." Huh, we were like who wants their pee back?!? She said that she has to say that because apparently they have had people ask for it back...gross.
Anyway, sorry this is so long. I just wanted to let everyone know how things turned out. It is now official that my wife has IC. Now we can focus completely on beating this painful condition. Hopefully, in the weeks to come she will log on to this site and talk with you guys herself...when she is ready. Thanks again for all of your support...it is greatly appreciated!!! I did mention the website to Dr. Hanno when he asked us if we have been doing any research and I told him how helpful it has been...thanks!
Joe
He than asked her if she had been treated for this with any medications and she said no...she had been prescribed a couple of things by the OB/GYN at Penn but wasn't real comfortable with taking them without more info and a diagnosis...one was pyridium and she wears contacts and doesn't have glasses so she was worried about ruining her contacts...the other was elavil and the OB/GYN kind of made it seem like it was in her head so that made her uncomfortable about that one. She also gets some pain medication from our PCP but not really enough to help everyday...her main symptoms are pain and spasming. So he said that she was a perfect candidate for a new NIH research study since she is what they call a "naive" IC patient meaning that she hasn't been treated with any of the medicines for IC. The research dr than came in and explained the study to us...it is a study that compares treatment with elavil and training with just training. I think by training she meant breathing exercises, bladder training, etc...anyway, my wife has decided to participate and she will need to report once a week, keep a medicine and voiding diary, and do a couple other things. She gets free medicine, I believe, and a small stipend periodically...the whole study will last 12 weeks and she starts in a week. I think they start you out at 10mg and gradually increase it to no higher than 50mg and you are supposed to record all of your symptoms and how they change with the different doses and what works best for you. She also gave us her card and cell# to reach her whenever we needed. The dr explained how the elavil is used to treat IC and talked to her about the side effects and I think that made her much more comfortable with giving the elavil a try...hopefully it helps her...I know it has helped alot of you.
He talked to her about elmiron but he said that they generally don't use it very often at this practice because of the expense, side effects, and the 30%success rate...but he did say that if she wanted it he would have no problem prescribing it for her. She tends to be pretty sensitive when it comes to medicine and side effects...she almost always gets them...especially antibiotics. She asked the research dr what she should do about pain in the meantime and she said to continue what you are doing now...what...struggling in pain basically everyday since her pain meds have run out. So hopefully our PCP will refill her prescription when she goes to see him
FYI - they also mentioned another study where they basically take a urine sample and than store it to be compared with others...what this study is looking for is biomarkers in the urine that may be IC specific in the hopes of finding something that may allow them to identify IC in people when they are infants...so she said she would give them a sample...strangely the dr said, "You will be unable to get your samples back." Huh, we were like who wants their pee back?!? She said that she has to say that because apparently they have had people ask for it back...gross.Anyway, sorry this is so long. I just wanted to let everyone know how things turned out. It is now official that my wife has IC. Now we can focus completely on beating this painful condition. Hopefully, in the weeks to come she will log on to this site and talk with you guys herself...when she is ready. Thanks again for all of your support...it is greatly appreciated!!! I did mention the website to Dr. Hanno when he asked us if we have been doing any research and I told him how helpful it has been...thanks!
Joe
Janie
Joe!
I too am one, like JanieMiranda, that was greatly helped by Elmiron and I too am one who if there's a side-effect to a med, I'll get it, hee hee. But I did pretty well with it and am glad I tried it. But like Janie said, she can't really give it a go now, since she's in the study - and here's to her finding relief!!! Keep up the good work!!! 
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