Continue instills?

[erikaic]

Hmmm...not too sure what to do here and am looking for some feedback from my fellow rescue instilllation ladies. I have done the instillations anywhere from 1 times a week to 3 times a week for a year now. I was having really good results. About a month ago the burning and frequency increased after each instillation to the point that I was having more bad days then good days. I saw my uro and he basically said the next step is up to me if I want to continue. I've had such good results that I'm not sure. Has anyone else experienced a decline of effectiveness and how have they gotten improvement? I"m wondering if it's best to soldier on and take them or stop them altogether for a while...any advice or similar experience would be great!:smile tee

[kadi]

Hi Erika,
Do your rescue instillations include heparin? Is it possible that your rescue instillations used some of the recalled heparin? The heparin recall is not just the US now, a number of other countries have also recalled some heparin brands.

I'm not sure about the status of the recall in Canada, but just doing a google search of heparin recall & Canada did turn up a few articles on the brands recalled.

Before throwing out a treatment that has been helpful for you this far, this issue might be worth checking into. If you got the tainted heparin in your instillations that could explain a flare reaction.

I'm also a teacher, so if you ever want to "talk shop" or talk about how IC affects our teaching careers, please feel free to PM me, okay?

Hoping you are feeling better soon!

[L. Thomas]

I think I would check about the ingredients too. If there weren't choices concerning the instill I think I would probably stop for a while. I know I would find out about options and how effective they might be.

[ICNDonna]

If you're instilling heparin, I suggest you talk with your doctor about a different solution.

Donna

[waterflow]

When I did the instill more then once a week it got to the point of making it all worse and then it took a while for it to start helping again when doing it only once a week. I have been doing the heparin/lido for I think 8 years now once a week. sometimes I have times when it doesn't seem to help at all for a month and then it starts helping again. Maybe give it a little more time just to see or do it less often?

[bigred]

I was having great results until this last one. I didn't think abut the possibility of heprin. I get one once a month. We done this for almost six mo. so I have a call into the dr. to see what he thinks.

[erikaic]

I'm thinking I might jsut continue the 1 times a week and then try for 3 times a week this summer. I"m in such a bad flare I can't imagine stopping the instills....sigh

[bunnykinb]

I understand how you feel about being in a flare for so long. I had a 4 month flare every single day while getting DMSO instills. I felt so horrible and felt I wanted my life to end. But, I know I couldn't do that, but it was the horrible pain.

[lissad]

Hi
I have been doing rescues for 2 yrs .. sometimes they help , sometimes I think the flare would be worse If I did not do them . I think they do break the flare cycles. I am wondering what your recipe is ? How much Heparin ? Are you including an antibiotic ?
take care
Lisa

[justice4j]

Hi,

I would say I've easily done 1000 i self instills over the last 9 1/2 years. Some immediately soothed the burning and pain....but sometimes, it seemed to irritate. I used Heparin and the dose ranged from 20,000U to 50,000U for all but the last month. Dr. Parsons also told me that the first time or two you use Bicarb in your instill it might sting, but that soon resolves. That was true for me. Bicarb was added to my instills 2 years ago.

I have been Rxd and using Elmiron for instills for a month. I had a very bad day two weeks ago and was so swollen I had great difficulty FINDING the urethra. I'm a former ER and OR RN, and a "veteran" of home instills. When that happened, I backed off the instills for 2 days because even though I would get some pain relief, the irritation from the cathing was TEMPORARILY too much.

Once I did that, I could resume my 1-2 instills per day w/o any problem.

As always, I'm sure you'll consult with your health care provider too. Hope some of that was helpful.

[erikaic]

My instills are heparin, lidocaine sodium bicarb. I can't remember the doasge. No antibiotics added.

[Judy777]

I was getting the instills done in my Doctors office for a year and had them done 1 per week. I was getting some relief, but not alot. When I went to see my new Doctor in October 07 He wanted me to do the instills at home once a day. Since October I have been doing them once a day and the past few months I have been able to cut back to 3 times a week. They Instills have really helped me since I started doing them more often. My frequency is way down and pain is not an issue unless I go to long without doing a treatment.

Instills have been a life saver to me. I was able to get off of Percocet which I was taking daily for 2 1/2 years do the the severe IC pain.

I would also check like the others suggested to make sure you were not given some of the recalled Heparin in your instill. I experienced burning and was basically in a flare in December and later found out I was using the tainted Heparin in my home instills.

Take care,

Judy

[bunnykinb]

I really hope the instills continue to help me. I have made an appointment with a urogyno to be sure nothing else is causing my clitorial burning just in case.