Marcaine instill side effects??

[chhhb]

Hi everyone,

I've had IC for over twelve years and have done well for the most part on Elmiron and other meds. Unfortunately, though, I've been in a three month flare up that, so far, eating a bland, bland, BLAND, diet hasn't helped get rid of it. I started receiving bladder instills a couple of months ago. Initially, my uro tried Lidocaine and heparin instills but after six of them I was only getting a day or so of relief. He switched me to a Marcaine and another drug combined cocktail two weeks ago. Can't think of the name of the second drug. I've had two instills of that and am having the weiredest sensations from them. I do get more time of relief on the Marcaine but I also have this Menthol effect from it in the bladder and vaginal area. It feels like someone gave me a menthol suppository! Sometimes that menthol effect will even radiate to my legs as well as in the chest and mouth. I know that sounds strange because it was simply instilled into my bladder and peed out a few hours later. Both weeks, though I'v had this sensation for days after the instills. Has anyone who has had a marcaine instill also had this happen? It's the oddest thing, not painful, but I'm just a bit worried about it and want to know whether this could be harmful or something I should be concerned about. I mentioned it to my urologist this week when I went in for the second instill and he said he's never heard of that before and has never had anyone one else report that complain of it. He didn't seem too concerned about it and said that if it's giving me more relief than the Lidocaine did, it would be worth it to continue with them.

Anyone ever heard or this or had it happen??? Would appreciate any feedback!

[ICNDonna]

I doubt it is the marcaine causing the feeling --- you might ask what else is in the mix.

Donna

[chhhb]

Hi Donna. Thanks. I did ask the PA what the other drug was. She told me but I didn't write it down. She said it was a steroid and I remember it started with an S, like sori.....? It was a long word. Anyway, I've had that sensation quite a bit today in the chest, mouth, and upper arms and legs. I don't even see how that's possible two days after I've peed something out that doesn't get into the blood stream. Is there a way for the cocktail mix to leak into the blood stream from the bladder if you hold it in for several hours? It feels exactly like a mentholyptis cough drop feels in your mouth except its in other parts of my body. Weird!

[lola99]

I would not doubt that the marcaine is responsible. I've been doing lidocaine instillations for the past week, and seconds after it goes in I feel dizzy, foggy, etc. I am absolutely positive that it is directly connected to the anesthetic, so what you are experiencing is most likely from the marcaine. If you can tolerate the side effects and it gives you good symptom relief, you might want to stick with it. I'm devastated about the lidocaine as it has been the only thing that reliably gave me some relief. This hypersensitivity came out of nowhere.

Best of luck to you!

[kadi]

You could talk with the doctor about the ratio of sodium bicarbonate and marcaine. It's the sodium bicarbonate that allows it to go into the bladder wall (why it works so well, but also why the wrong ratio can make it go systemic and cause problems in other parts of the body - including the heart). This is why it's so important to follow instructions carefully when mixing these medicines. Mixed properly they stay in the bladder, but mixed at the wrong ratios - they can cause severe problems.

I hope you find relief soon. I've been so grateful for my home instillations (marcaine, sodium bicarbonate & heparin) - they've saved my quality of life and career.

[chhhb]

Thanks, Lola. Actually, that stuff never worked. I just kept getting more pain and irritated after the new instills. Was not getting relief so I stopped them and changed doctors. This new urologist has made all the difference. She told me that she suspected that at least half my pain was coming from pelvic floor muscles being constantly tight after such a long flare. She started me on a new medication to take care of muscle tigghtness and spasms in the bladder and pelvice muscles and she put me into physical therapy for the PFD. I can't believe what a difference those two things have made in how I'm feeling and in lessening the pain for me. She's doing instills also because hers are different from the ones I was getting at the other uro. They aren't helping so I think I'm going to ask to not have the instills for a week or two and see how I do with the new med and the PT. Everytime I have an instill, I'm irritated and in pain for a day or two after. I actually think it puts me back a step or two. For some reason, I just don't seem to respond to those like a lot of people do. Am just grateful for the new med and the wonderful physical therapist I'm working with. It's amazing how much better I feel after a session with her. Am getting two PT sessions a week. The other doctor never talked to me about PFD and never tried to address it in any way. So sometimes it pays to get another opinion. Not all uros treat IC the same way or in as complete a way as others do. Good luck to you!