Steroid instillation

[playethic]

Urologist today tried me on instillation of a steroid (I forget the name, starts with 'K' I think). Asked me to wait (he's always very specific that instillations must be voided exactly one hour after 'not 45 minutes, not an hour and a quarter') and after an hour went and saw him again. The pain seemed to have lifted a little. Not a lot but a little - (it's possible it was the steroid, or maybe the methadone that I'd taken 2 hours before kicked in, or maybe something else, but for now going with it was the steroid). So I will be trying them

Wondering if anyone else has tried steroids in instillations and what the effect has been?

Also - one of the nurses mentioned that occasionally they are requested by the urol. to add a different medication into the rescue instill... she couldn't remember the medication name but said they had to crush up pills and add it into the mix. Anyone know what 'rescue' medication that might be?

Also, for those who've themselves asked doctors to try different medications for instills (eg. adding marcaine or omitting sodium bicarbonate) do you find doctors are open to your requesting your own mixes to try? Are there ways that you approached these requests, to try to increase the likelihood of urol's reacting positively?

Thanks for your patience with my barrage of questions...

[ermkenne]

Hello,

My current instillation has Solu-Cortef (hydrocortisone, a steroid), sodium bicarbonate, marcaine, and heparin (20,000 units), the exact formula is given in my signature. I have tried different instillations that did not include a steroid, and do not believe that I have had the relief I have with this current instill. I get immediate relief when it hits my bladder. The sodium bicarbonate enables the medication to breach the bladder and actually penetrate it. I also tried this same instill with 40,000 units of heparin, and had pain, so the heparin did make a difference.

Previously I was on lidocaine 2% (25 mL), marcaine (25mL), sodium bicarbonate (3 mL), and sterile water (4 mL). I was on it for several months until I felt it did not help anymore.

You should discuss with your doctor different instillations to try. Research what different people have had success with, and bring it up to your doctor. That is what I have done. I have always been one step ahead of what to try. I also tried lidocaine 2%, heparin, and sodium bicarbonate (terrible for me). Everyone is different. I know there are some different information in the ICN handbook, and also on the ICA website. There has been a lot of research done on these, and you also need to do research yourself. Never change your instill on your own, you need to discuss things with your urologist.

Hope you find help.

Erin

[playethic]

Hi
I have no idea what %'s my instillation is. I wouldn't have thought of it. Now I think I'll ask. Thanks for that.

[ermkenne]

It is important to know the dosage, and also what is in the instillation. That way you can do research to find out what other ones are out that. I believe you have taken the one with Kenalog (triamcinolone) in it, it is a common steroid used in instillations. Some people respond well, and others don't.

I have definitely responded positively. The Whitmore protocol uses the steroid instillation. Another important thing to know is if there are any preservatives in your vials. Preservatives can irritate the bladder further. I have encountered this issue before. I do my instills at home, let me know if you have any further questions!

Erin

[IndianaKaren]

I have had two treatments of the lidocaine, marcaine & sodium bicarbonate -- for a couple of days after each treatment, I am extremely tired. Is that a coincidence, or did you experience that side effect?

[greengenes3]

I'm currently doing heparin, solu-medrol, lidocaine, and sodium bicarb for my instill. I have a good relationship with my gyn so I trusted her to give the best cocktail out there. The nurse did my first instill and it was awful. The NP did 4 since and it's been fine. I did better without having the cath go all the way up to the bladder. She uses a ped cath and goes only a little up the urethra (mine was inflamed). The instills have helped. I have a lot of stress in life and that has been my undoing. And the diet is key--I notice a huge difference with the diet alone. I feel that everyone is different. I have read on the boards all the different combo instills and there isn't one magic cocktail. It's trial and error. Hopefully you have a good relationship with your doctor that you can talk with your doctor about your treatment and your ideas. I mentioned Elavil today and she listened to me. She gave me the pros and cons then asked what I wanted to do. I wish you the best. I tell people you are your own advocate in health, so speak up with your doctor. Change doctors if they don't want to listen or brush you off. It's your health!!
Karen--The only side effect I have noticed from the instill is burning and itching. The first instill was awful and I have a post under the heparin section of the boards about that experience but have been fine since!! IC is tiring esp if you aren't sleeping normally and exhausted with pain so hopefully it's just a coincidence but I ask your doctor!!

Gina

[playethic]

That's helpful to read Gina re: pediatric catheter. I might ask the nurse that.

You're lucky with your health provider. Unusual that your gyno covers IC, that they don't shuffle you to a urology specialist for anything catheter-related - how did that come about?

What did she say were the pro's/con's about the Elavil?

[greengenes3]

My gyn quit ob to focus more on urology type issues in women. She's more like a urogyn. She recommended me to this site when I got diagnosed. So yes I'm very lucky!!

Pros of Elavil will be pain control, less spasm of my bladder hopefully, less trips to the potty. She told me it's an antidepressant too although I'm not depressed yet. Cons are extreme fatigue (take at night and hopefully I'm not drugged all day) as possibility, GI--she's seen diarrhea to constipation, and dizziness. She likes nortriptyline better, less side effects (her experience). I choose the Elavil because of the spasms and pain. I need sleep bad!! If it doesn't work out I know there's other meds to try. Also I was worry about the pain pill I was taking nightly (drugged and still peeing all night!!) and dependence issues with it. I was taking my muscle relaxer for my back (Flexeril) and that helped a little. And I'm on Urelle for bladder spasms which does help. I use Prelief if I'm not sure what I'm eating is okay and that has helped but made me constipated which I have to take Miralax for!! I joke with my parents that I'm on more meds than them. Life can be crazy but I'm not letting IC beat me!! My faith keeps me going along with the support of my family!!
I pray all will go well with you. Keep us posted on how everything goes!!

Gina

[nanawaggs]

Hi, playethic ~

I have Kenalog in my instills and I truly believe they are very helpful. It took quite a few last year to get me very normal and I've had almost 2 months free of instills until yesterday. I'm praying for the same positive results as last time. My doctor is so encouraging about having something that will help and has told me he has so many options, so I don't believe he'd be offended in the least to discuss my different choices.

Do hope you find what works for you....there is so much valuable info right here on the ICN.

Blessings,

[L. Thomas]

When heaprin was in short supply Dr. Dell substituted Elmiron. It is in a capsule but not a tablet.