LiRIS

[allisun13]

to jp

Hey JP! I am so sorry that it didn't work and that you are suffering w/ urgency right now. For me urgency is the absolute worst part. I have found that the only thing that helps me when my urgency is real bad is Valium. I am lucky that my GP has presribed it to me. She agreed to do it for the short term while the Elmiron has a chance to work. I don't know what I am going to do if the Elmiron doesn't work and she decides I can't have it anymore. I am hoping that won't happen. So far she seems to be pretty compasionate. It just amazes me that doctors hold off or will not give us meds that may help ease us through this condition. This is a chronic condition - you would think that would make it qualify.

I tried instillations of bicarb, lidocaine and heparin and they gave me worse urgency so when I heard about this pretzel I was very leery of what it would do for me personally. Everyone of us is so different. I am sorry it didn't help you and I believe that I would probably have a similar reaction that you do so I thank you for trying it and for reporting back to us all on your experience.

I hope you start feeling better very very soon.

[jp]

LiRIS

Just finished the second phase of the study where they implanted the real lidocaine into my bladder. It helped with pain, but nothing for urgency ... In fact, a week after having it removed, I am in such pain now and urgency that I am getting up all night long. I am glad that I finished the whole study, blinded and unblinded, but , unless they address the urgency, I will not do this again once it becomes available.

JP

[jp]

Optimist

Thanks, ICN... Love you guys..

JP

[jp]

LiRIS

Thanks for the encouragment, Briza!

JP

[jp]

allisun13

Yes, they do blood work whenever I have to go in. Also, BP, sonogram of how much urine I am retaining, weight, height.

I am going to be compensated about $627.00. Which, like you say won't be much, but it is a little perk. I signed up for this before knowing there was any $ involved, so I was pleasantly surprised.

Keep up the hope and keep on smiling. Today is all we really have, and what a gift it is inspite of this disease.

I really like ICN also.

Talk to you soon,

JP

[allisun13]

to JP again

Hey JP! I hope that you did get the placibo last time and this time there will be significant improvement. I tried home instills of heparin, bicarb and lidocaine and for me they seemed to worsen my symptoms. It gave me bad spasms (urgency). Not sure if my bladder didn't like the sodium bicarb (salt) or what but I quickly gave up on those. It does seem like for us all that it is going to be period of on and off again trail and error w/ meds to try to minimize symptoms as much as possible for as long as possible since there is no cure. Which is why it's great that they are still trying new things like this to help and people like you are out there willing to give it a shot. Are they doing EKGs and bloodwork on you? Are they giving you copies of the blood work if so? The info my doctor's office emailed me said they monitor those things. I was just curios if you got any of those results or feedback on any of that. Also it said you could be compensated up to $550. Not that $550 is a lot of money but for those of us w/ IC it can certainly help w/ treating options. Look forward to hearing more from you on how this second round goes. Wishing you the best!

[jp]

allisun13

Thank you for the very sweet and encouraging words.

I am through with the first stage of the study and have opted to go ahead with the second. Meaning, the first stage was "blinded".. No one knew what I got, the Lidocaine, the placebo, or the sham.

Yesterday, I received the Lidocaine for certain in the unblinded part of this study. Now, I know that what is in me for two weeks is the actual drug. I can't really say that I was a 100 % free of symptoms. And with IC, sometimes we just are in a better place for awhile and the flares are not as often. So, I don't really know if I had the lidocaine the first time or not.

Now, I do know. So, I can report if it really helps a tremendous amount or not. I will let you know.

Thanks again. And I hope that , yes, the Elmiron helps you so much that you can eat and drink lots of things. I was able to do that for years and years, but now I am not so fortuante and am going from one flare to the next,but if you can have a period of time when you are pretty symptom free, then HOORAY !!!

Keep us posted.

JP

[allisun13]

to JP

Hey JP! Thanks for not only doing the study but for coming back to this thread throughout your times spent doing this and updating us.

I was just called by my Uro's office and offered to be a part of the trial they are doing where I live (Charleston, SC). I have been on Elmiron for almost 5 full months now and have definitely had some improvement with a combo of that, mostly following the IC diet, probiotics and as needed hydroxyzine. I understand it can take 6 months to a year to get the full benefit from Elmiron so I am VERY hesitant to start anything right now since I've had some improvement. With that being said I think if I heard that this study brought everyone that did it great relief for a month or more (and since it's free) I'd likely give it a shot - for now though I am just going to keep it in my back pocket and hope that the Elmiron keeps improving me more and more as time goes by. My ultimate prayer is that I am one of those people that can eat or drink anything they want b/c the Elmiron helps so much. Only time will tell but w/ the improvment I've gotten thus far I am hopeful. Please continue to keep us posted on your experience with this. I hope more people thad to the trail will report here as well. Thanks so much for doing this and I am praying for you that it does work and it works well!

I hope you fee better soon!

[jp]

Hey BW Gurl,

Just got back from my urologist. I thought that today I would learn whether I recieved the Lidocaine or not in the pretzel, but I will not be told. So, Now I can go back in and do it all over again, but this time, I will for sure get the lidocaine, so, i guess tomorrow i will start this all over. I didn't feel that the first instillation was all that amazingly helpful, so maybe I got the palcebo, so i will know now that i am getting the real deal.

I got CFS in 1978, was very , very sick for years. I was only only 26, had just had a baby and was teaching. A job I loved. But I had to give the job up. I got IC in 1989. I understand where you are coming from . I recieved SSDI back in 1987. The medical is what really saved me, as my checks were small as I had not worked for very long and had not made very much money. But the receiving medicare was a godsend.

It is very hard to have to change your life, and i had to at such a young age, also. But, I tried to be grateful, and as you said, not let my illnesses define me as a person. I never asked, "why Me?".. I tried to accept my life as it was playing out and do what I needed to do, trying to find the gift in everything. Not always easy , by any means, but I think it helped me many times not to despair.

Keep in touch. Good luck on Fri.

JP

[backwoodsgurl]

Hey, gurl,

I am praying for you that you will be able to go ahead and get some help right away. I am so sorry that you are having so much pain. You are a courageous soul to even put yourself out there for this study. You are not only helping yourself, but all the others. I pray today you will be able to find relief to some degree. I am truly sorry that you have to go through this awful disease at such a young age. But the future holds the promise of help, so don't give up hope. By trying to get involved with this study , and all that you have to go through, you are showing to yourself that you will keep striving and trying and doing whatever you need to do to get some help and not give up, that your life if worth more then just this IC. I support you, and I encourgage you, and I think you very brave.

JP

JP,
Thank you! I found out today that i wont be able to do the study right away. I go in for pre op on thursday and i have surgery on friday. I try to be brave. I just want to feel better. If i can try something that may help, then i will. It does suck having this at my age. I think I am going to look into part time disablity. I have asked my dr for months now and they keep tellling me im young and to stick it out, but its getting hard to work and the stress of making my bills and stress of pain is just making me hurt more. So that will be my next step, just dont know how to go about it. I want to keep working its just hard.

Just because I have IC i dont want it to define who i am. I want to be me for me, not for ic. i look at it as something i just have to deal with and take one step at a time.

Thank you tho for your kind words.

wouldnt mind chatting more, PM me.

[jp]

LiRIS

Hey, gurl,

I am praying for you that you will be able to go ahead and get some help right away. I am so sorry that you are having so much pain. You are a courageous soul to even put yourself out there for this study. You are not only helping yourself, but all the others. I pray today you will be able to find relief to some degree. I am truly sorry that you have to go through this awful disease at such a young age. But the future holds the promise of help, so don't give up hope. By trying to get involved with this study , and all that you have to go through, you are showing to yourself that you will keep striving and trying and doing whatever you need to do to get some help and not give up, that your life if worth more then just this IC. I support you, and I encourgage you, and I think you very brave.

JP

[backwoodsgurl]

HELP PrAYers needed

Backwoods girl,

i can't remembetr if you have to wait two weeks to start. It is just what they did with me. But I was the first one here in Las Vegas , so maybe they just needed to get all the paper work, etc, going.

I had never seen this dr. before either. But I figured that he would have to be pretty well respected to have been approved to conduct the study.

Don't be afraid. It is fairly easy. Others have gone before us and there have been no real complications as far as I have heard. i find out next week .. I do think my urgency is better. Keep in touch,

JP

Dear jp and others,

Please please please pray for me today and through this next week. My first appointment to start the study process was set to be friday. Well today seatlle called and wanted a copy of my hydro distension. I had asked my dr. in feb when I started the paper process and she assured me that I had done one. Well I called today to get a copy and it turns out my records show that I havent. I am in so much pain I want to die most days and my kidneys have been hurting more and more.

I lose my insurance on sunday. Seattle said they would pay for it to be done as part of the study if I do it in seattle, but I would then have to wait an additional 3 months after the hydro to start LiRIS.

I am scared I dont know what to do. I have to keep appointment for friday so either way I will start LIRis or I will sign to do a hydro and plan that on friday. but I hope that I can start LIRIs cause i hurt soooo bad. I just want to cry. I am frustrated, and upset that my doctor would say i have had the procedure done if i havent.

grrrrrr. anyways Please pray!PLEASE!!!!!

Thank you!

[jp]

Backwoods girl,

i can't remembetr if you have to wait two weeks to start. It is just what they did with me. But I was the first one here in Las Vegas , so maybe they just needed to get all the paper work, etc, going.

I had never seen this dr. before either. But I figured that he would have to be pretty well respected to have been approved to conduct the study.

Don't be afraid. It is fairly easy. Others have gone before us and there have been no real complications as far as I have heard. i find out next week .. I do think my urgency is better. Keep in touch,

JP

[backwoodsgurl]

Backwoods girl.

Good luck. I am four weeks in.The pretzel has been out for two weeks. I am now being monitored for pain, urgency. I will find out in less then two weeks if I had the placebo or the lidocaine.


I really didn't have too much discomfort and i feel that whatever I have, the urgency is much better. I don't have much pain at all in the bladder.

JP

Jp! thanks for the response. So when you go for the first visit, and the blood work, why is that you wait two weeks to start? Is there anything I should expect going in to this? I am only hoping to feel somewhat better going in to this, at the very least no more pain than im in.

I do have to say, im scared. I will be going to a DR I have never met before, and 6 hours away. So again... I am hoping this works.

thanks for the info!

Backwoodsgurl

[jp]

LiRIS

Backwoods girl.

Good luck. I am four weeks in.The pretzel has been out for two weeks. I am now being monitored for pain, urgency. I will find out in less then two weeks if I had the placebo or the lidocaine.


I really didn't have too much discomfort and i feel that whatever I have, the urgency is much better. I don't have much pain at all in the bladder.

JP