Customised Rescue Instill

[iris2]

I tried to red a lot about different doctors instills and peoples posts.

I had my uro write for the following because I saw this one was suggested to use daily or more.. Heparin cocktail with alkalinized lidocaine — C. Lowell Parsons, MD
Heparin sulphate 40,000 IU
Lidocaine 2% 8 mL
Sodium bicarbonate 8.4% 3 mL
To reach a total fluid volume of 15 mL


I routinely alkalize my urine with sodium bicarbonate buffered (orally) but this is not go long term. I tried potassium citrate it seemed to help but I could only try it a couple of days because I got diarrhea very bad and I take a lot of oxycontin so I usually am dealing with the opposite.

I think for my purposed I should ask him for perhaps

50ml sodium bicarbonate
Less lydocaine (marcaine?) as I get some retention
40,000 units of heparin is perhaps fine
100mg hydrocortisone or some other type of steroid for
Inflammation


I cannot find any material about using an instill with s steroid such as hydrocortisone or kenalog or solucortef with instructions on whether it can be used daily. Does anyone know if this is okay?

I can tell the instill gives me some relief but not too long.

My idea is the bicarbonate would be better in some ways as an instill instead of drinking it all day.

The heparin does several things as I remember and long term helps rebuild the lining.

Not sure which is preferable marcaine or lydocaine? Does anyone else think this might be what is causing me some retention after?

I have a lot of inflammation in my body, not just my bladder. Arthritis, allergies, pains in my fingers toes and migraines for the first time lately. I think adding a steroid to the instill might be a big help. Actually I think if I could get him to try it it would be helpful to "load up” on it orally to start with. Short term steroids can do wonders for inflammation.

I know there is a lot of stuff and questions here. Appreciate all and any input. Experiences with these things would be helpful.

I have tried a lot of other stuff if I can be of help to anyone else.

iris

[ICNDonna]

I had steroid instillations for several years and they did help, but the help was temporary. I have also taken them orally, but it was for a severe allergic reaction and the side effects of steroids can be significant. While I was on them (for only about two weeks plus the tapering off period) I gained so much weight my clothes didn't fit well. My fingers were even puffy. Fortunately when I stopped taking them, my body went back to normal fairly quickly. The steroid instilled did not have any side effects for me.

Many people do heparin instillations daily --- when I did them, I started with twice a day for the first month, then cut back to daily. It took a while, but they did help.

Donna

[GriffsMommy]

There really are so many different instill "recipes" depending on what dr you see. I had a local NP start me on the rescue instills and gave me the scripts to do them at home. When I checked with my new dr who is the one who taught her how to do the instills he has since changed his "recipe." He still uses heparin, lidocaine and sodium bicarb but he is using different amounts. I have no problem with the mix that I've been using so I didn't want to rock the boat so to speak. I called the local NP and she was more than willing to write me the scripts to get the instill meds through mail order. She was pretty shocked that they are using different amounts now.
From what I understand the lidocaine is used to numb the bladder which is what I love the most about the instills, it is so cool and soothing. The heparin is supposed to help heal the bladder lining and the sodium bicarb is supposed to help the heparin be absorbed into the bladder wall better. I have never used a steriod in my instills so I can't answer any questions about that.
As for using lidocaine verses maracin I think it has to do with the dr and the patients reactions. I have heard that some people have problems with the lidocaine so they use the maracin instead.
I hope you have luck with the instills. I know they help many people.

[L. Thomas]

My instill is:

2cc sodium bicarbonate
8cc lidocaine
10,000 units heparin

If you read the boards there are threads with post about steroids and elmiron used in instills. There are also threads with post about changing from lidocaine to marcaine

[iris2]

:hi:I see your do changed the amounts. AS I posted I asked mine for lidocaine 8cc
Heparin 40,000
Sodium bicarbonate 3cc 8.4%

I was thinking after reading several other instills that have much more sodium bicarbonate that it might be advisable for me to have my instills increased to 30-50cc sodium bicarbonate. The pharmacist said she could work with me and get the instill to any ph I want. OF course I don't know if just because I get the ph to say 8 with the instill it will help more. I do know that when my urine is 7.5 to 8 I get tons of relief.
Does anyone know if this might make a difference?

It turns out after over a month of taking extra meds and suffering that I had a UTI. My uro doc apparently forgot to send the script I asked for to test for it. My regular doc tested me last week and prescribed macrobid yeaturday. I look forward to relief and not being angry at my uro!

[bunnykinb]

Iris,

How often do you do your instills?

[iris2]

Iris,

How often do you do your instills?
__________________

I just started doing what are supposed to be daily instills but the pharmacy I was using never seemed to get them made but maybe one a week. Just dropped off my rx at another compounding pharmacy. He said he could make up to 4 at a time any day. So basically I am just going to try up to 2 a say to see if they help.

I cannot remember when I had all my procedures done. I think I should get my records and start keeping a better record myself.

dx 1995 (no one said bad or moderate...)
bladder biopsy hydro/cysto in 1995
About a year later the same
puridium plus started having some pain (never had much before) around 2003
2004 oxycontin up to 40mg twice a day: my psychopharmocologist prescribed the uro refused any pain med
Around 1998 had DMSO instills every two weeks worked for about 8 months had no symptoms
Following year same
Somewhere in here tried about 8 months of oral Elmiron the only thing that happened was my hair fell out.
Last time I started DMSO was mid 2005 had a lot of spasming and urologist refused further treatment. In December she tried distention one final time and it did not help again. Since then everything downhill.

Tried elavil, atarax, vesicare and others like vesicare which gave me terrible retention. Went to Naturopath for about a year. My symptoms got much worse. The herbs were irritating my bladder.
Changed uro's as this one refused any other treatments Tried or went through several uro's before I found my current one. He is an hour and 15 minutes away by highway. There is no one left to try.

Tried DMSO again with new uro helps some in around 2006 or 2007
In December 2006 went to Florida in Botox study. Went back for three months shots. It did not help and I dropped out of study
Also tried another instill with Elmiron for several months
March 2007 had hyro/cysto with pain block
This was the first time I ever had urethral spasms (before the block) and bleed about two cups for urine that looked like coca cola with the spasms never had this again although the urethral spasms have started up here and there again.

Recently tried Potassium Citrate helped a lot but gave me diarrhea


Currently:
30mg oxycontin twice a day
OxyIR 5mg up to 3 a day for breakthrough pain
valium 10mg twice a day
klonopin 1mg a day (not enough)
ritalin 20mg sr up to twice a day
perphenazine 4mg as needed (usually only a couple times a month)
Brioschi all day to alkalize urine

Supplements:
I take recommended supplements by Dr Tori Hudson, The Townsend Newsletter

Glucosamine or NAC 1500mg day
Quercetin 1500mg/day
Ester C 1500mg/day (all split into three times a day)
L-arginine 1500mg/day
Corn Silk several tabs or 40 drops tincture three times day
Slippery Elm Powder heaping 3 /day


I also take:

1000mg fish oil
TBSP Flax seed at least once a day
Flax seed oil on my food
Magnesium 500mg every day (for constipation from oxycontin)
citracel 1/1/2 tabs 2/day (for constipation from oxycontin)
Or more as needed depending on amount of oxycontin or other pain med causing constipation same for magnesium

When I am not too depressed I hike or take weight bearing class (exercise a little)
I eat an I.C. diet avoid all foods that irritate my bladder

I saw how some people post their treatments like this or actually format it better but it helped me. So I thought it would be the right thing for me to do

I don't have much of a life. Had major depression before the I.C. started. Since 2004 and the pain getting so bad and not sleeping form the frequency I just do not cope much. Stopped working altogether then.

I am currently trying antidepressants again. I had stopped because they almost none of them worked and almost all of them gave me flares. We'll see: smile tee

Sorry this was so long an disorganised.

I like your bunny thing. I don't know how to use differnent icons and stuff like that.

All the best to all of you,

okydoly

(which is for my 14 1/2 year old sick doggy whom is the love of my life. I'll have to figure out how to get his picture on here. I should change my log on name to okydoky, I did everywhere else