How to conserve a rescue instillation?

[puskafee]

My uro has agreed to start rescue installations, 3 times a week, at his clinic, with the (slightly modified) Parsons formula:
- Heparin 40,000 I.U.
- Lidocain 2% 10ml
- Sodium bicarbonate (NaHCO3) 8.4% 5ml

However, he does this for the first time - so far he has only done DMSO instills.
He has asked me to try to find out how long (minutes? hours? days? weeks?) this mixture can be preserved (and at what temperature) after it has been blended. It would be very practical and cheaper if his lab can prepare all instill mixtures for a week or more. (And keep them in the refrigerator, if needed)

Would anybody know this? Or can somebody tell me where I can find this info? (or give an email of s.o. that knows this)

Thanks a lot

[jen74]

I am not 100% sure, but I do know that in my urogyne's office, they have a bunch pre-made and they do not refridgerate them. I do mine at home, it was way to expensive for me to do them in his office. I mix all the ingrediants when I am ready to do the instill.
Jen

[puskafee]

Thanks for the reply.
What is the exact formula that you use? And where do you get the ingredients (on doctor's prescription?), and how much do you buy at one time?

[L. Thomas]

I mix my own instills and do them at home. My urogynecologist has a full time nurse thad does instills and teaches how to do home instills.

When I was learning how to instill I asked about storage. I was told the ingredients were very stable and not to worry about storage, just keep it in a clean place.

I keep the opened vials and the pre-mixed vials at room temperature and I keep the needle in the sheath attached to the end of the syringe. I keep the supplies and pre-mixed syringes in a large make-up pouch and the unopened vials in a box on the closet shelf. The smallest vial that sodium bicarbonate comes in is 50cc. You can get lidocaine in 20cc vial but I get it in 50cc vial. The heparin is in a single does vial.

I usually mix 4 instills at a time because that is how many times I can use each catheter. I mix 4 so I won't get confused about how many tiems I have used a catheter.

Some people have a lot of trouble getting the ingredients but I live in a small town (less than 10,000) and there are 3 pharmacies that can get the supplies for me. They don't keep them in stock and do have to order them. Check with your insurance and see if they participate with any mail-order pharmacies. I can get the meds from a mail-in pharmacy too. I would try to find a compounding pharmacy check about availabiltiy. DO NOT HAVE THE PRESCRIPTION WRITTEN TO BE COMOUNDED AT THE PHARMACY. You will pay through the noes and it will cost you $$$..about $10 an instill.

Because Baxter has a recall on heparin, it may be hard for you to fine. One of my pharmacies couldn't get the heparin. It is a chain and they did not use a provider that carries any other manyfacturer. Another pharmacy found a manufactuer...Abraxis... that had heparin.

My instill ingredients are:
2cc sodium bicarbonate
8cc lidocaine
10,000 units heparin

My insurance will cover a 90 day supply for 1 co-pay. I get a 90 days supply at one time. I get one prescription to cover meds and another to cover durable supplies. If I take the prescription to a duralbe supplies provider my insurance will cover the catheter and syringe but not the needles.

If your insurance doesn't cover durable supplies the catheter will cost around $5 each and the syringe will cost about $1. With my insurance a catheter cost about $1 and the syringe cost about $0.10. You should be able to get them at a pharmacy that fills prescriptions for diabetics.

Sorry this post is so long. I think I have answered all of your questions. Feel free to ask any questions you have. I may not know the answers but there are a lot of folks doing home instills and they may have the answer for you.

[puskafee]

A very helpful message indeed. I wish you the best luck.

[puskafee]

I see that the formula mentioned by some in this thread is not what Dr. Parsons had published (40,000 IU heparin, 8ml lidocain, 3ml sodiumbicarb).
There is much less heparin in the mix (10,000 IU, I also saw 20,000 IU in another thread)
Is there a reason for this?

Kind Regards, Puskafee (Peter)

[jen74]

I use 40,000 IU heparin, 10ml lidocaine, and 30cc of saline. I think the reason some use less or more of a certain ingrediant all depends on the doctor who is prescribing the meds. I guess they all have their own opinion. I get a script from my doctor and I bring it to the walgreens and they order the stuff for me. I had not had a problem so far. Good Luck to you.
Jen

[L. Thomas]

I see that the formula mentioned by some in this thread is not what Dr. Parsons had published (40,000 IU heparin, 8ml lidocain, 3ml sodiumbicarb).
There is much less heparin in the mix (10,000 IU, I also saw 20,000 IU in another thread)
Is there a reason for this?

Kind Regards, Puskafee (Peter)

The 10,000 unit vial is the same volume as the 40,000 unit vial. The 40,000 unit is just stronger. The heparin is used to address the pinpoint bleeding of the bladder lining. I guess it just depends on you MD and success of treatment of their patients as to the strength and ingredients in the cocktail.

[coopsmom]

i get mine compounded at a pharmacy I pay i think like 70 bucks a month for a months supply i get my caths and everything that way, my gyno told me that i could reuse my caths by washing them out and putting them in alcohol and then washing them again and getting the alcohol off really well. Make sure they are the red rubber caths. I would rather the compounding pharmacy do it, it was about the same in price so i let them do it. and your insurance might have one just call i know my insurance co. has one but i have a pharmacy local who compounds. Good Luck You can do it I thought that I could not do it but just ask God for some help and I know you can do it.
Through God all things are possible (even cathing yourself):pray:

[bunnykinb]

Jen,

Since you use 40,000 of heparin, how often do you do your instills?

Everyone,
I didn't know I could make up the mixture ahead of time and store it. How many days can the mixture be stored?

Thank you

[L. Thomas]

It depends on your meds. Ask you MD. They may have different protocol. The time I had the instills compounded at the pharmacy they gave me 30 in sryinges. At that time I was using one a day.

I mix 4 at a time because that is how many times I can use a catheter. I use about 3 a week so it will last about 2 weeks. I don't refrigerate them or the opened vials. I keep the syringes stored with the needle and sheath attached. I have a zipper vinyl/cloth pouch that hold the premixed instills and the open vials.

[bunnykinb]

I was curious because as soon as I can do the instills on my own at home, I would like to be able to mix some and carry them with me on vacation trips.

[L. Thomas]

I was curious because as soon as I can do the instills on my own at home, I would like to be able to mix some and carry them with me on vacation trips.

When I am traveling I have a small zipper pouch that holds 2 instills. I keep it in my purse. Of course if you are flying that wouldn't work. I pack the other meds and supplies in my luggage and mix as needed when I get to my vacation spot.

Like I said, this is a road trip and I know where my luggage is and what is happening to it. Just check with your MD about how many to mix.. If you mix too many it is just hard to manage storage.

[jen74]

Hi Bunnykinb.
I do the instills once a week usually, or if I am having alot of pain, maybe every four days. I know some people who do them every day.
Jen

[L. Thomas]

Hi Bunnykinb.
I do the instills once a week usually, or if I am having alot of pain, maybe every four days. I know some people who do them every day.
Jen

Check with you MD. You may be able to do them as needed. I did an instill everyday for almost a year. There were some days I did more than one a day. Now I would say on the average I do 2-3 a week. There are some times that I don't need one for as long as 2 weeks.

[bunnykinb]

Jen,

I use 40,000 cc of heparin too along with 8cc lidocaine and 3cc of sodium bicarb. I was told with that amount of heparin, I can only do it once every 2 weeks. If I want to do it every week, I should cut the heparin to 20,000.

[kuni_bob]

When I had my first rescue instills done (back in 2003), I had to get them mixed at the pharmacy downstairs and head straight up to get them done, because my uro thought they had to be used straight away after they had been mixed.

That said, that was in 2003, so a LOT has changed since then. I think my uro's office now uses pre-mixed ones, and they still work just fine! :)

[bunnykinb]

I asked the uro today if I can mix the meds ahead of time and to take along on vacation. He said no because the meds are to be kepted refrigerated and I would run into possibly getting an infection.

[L. Thomas]

I don't know what size your vials are but if you can't mix ahead you might try to take them unopened and after you open them put the meds. in a cooler stored inside a zip loc bag. They make really small softside coolers.


The S/B, lidocaine, and heparin are always stored on the shelf in my urogynecologist's office. Of course the heparin is in a single vial but the others are for more than one instill. I was told to always have the instill at room temperature because it causes pain if the meds are cooler that normal body temperature.

[bunnykinb]

Hmm, when I draw up the meds at the uro's office, the bottles are not cold like from the refrigerator. The heparin is a very small vial. I'll ask the nurse how are opened bottles stored.

I thought I was feeling better. I had an instill last Tuesday and had my period the week before. Yesterday and today, my burning has started up. I wonder if it is because of lack of sleep or because my son has his 8th grade promotion and will start summer school at the high school next week. Stress?

[prestwood16]

i get mine compounded at a pharmacy I pay i think like 70 bucks a month for a months supply i get my caths and everything that way, my gyno told me that i could reuse my caths by washing them out and putting them in alcohol and then washing them again and getting the alcohol off really well. Make sure they are the red rubber caths. I would rather the compounding pharmacy do it, it was about the same in price so i let them do it. and your insurance might have one just call i know my insurance co. has one but i have a pharmacy local who compounds. Good Luck You can do it I thought that I could not do it but just ask God for some help and I know you can do it.
Through God all things are possible (even cathing yourself):pray:

How many viles are you getting for a months supply for $70.00. I get 7 viles for $140.00. Of course, right now with the Heparin recall Their having to use Elimiron and that might be the reason for the increase. I'm suppose to do my home instillations 3x's a week, but I usually don't 1 to 2 times. My insurance think goodness does reimburse me $120.00 of the 140.00 or I couldn't afford them.
EVERYONE ELSE!!!!!! LEARN TO DO YOUR OWN INSTILLATIONS AT HOME!! If you get the 10' french red rubber caths ,tiny suckers, doesn't hurt a bit. I wear contacts and i'm blinder than a bat and the other night I did it without my contacts or glasses on. I could do them blindfolded and I've probably only done about 7 total. I was a pro by the 3rd one. I tried the whole sterlized and reusing the same caths. I got one of the worst infections of my life, so I bought a box of 100. I paid $145 for them, I check on line after the fact and could of got them cheaper, but those 100 caths will last me at least a year. AND, have a Compound Pharmacy do your prescriptions. So, much easier. Call around, usually one of your local pharmacy's will know of one. Makes it lot easier. AND Lastly, I KEEP MY COCKTAILS REFRIGERATED B/C WHEN BLADDER IS HURTING I FEELS SO MUCH BETTER IT GOING IN COOL!!! JUST WHAT I DO!!!!

[L. Thomas]

EVERYONE ELSE!!!!!! LEARN TO DO YOUR OWN INSTILLATIONS AT HOME!! I could do them blindfolded and I've probably only done about 7 total. I was a pro by the 3rd one.

:woohoo::woohoo::woohoo:
Yeah!

[ICNDonna]

It's always a good idea to talk with your physician about storing mixed instills. Not all instillations are the same formula --- plus your doctor needs to know what you are doing.

Donna

[crazy_beautiful]

I just use lidocane and sodiumbarcarb. I mix them when I am ready to do an instill.

[dngwic2]

I've been on Dr. Parson's receipe for almost a year and a half and though I have some mild improvement I'm really not pleased with the results. I have modified the receipe per Dr. P. Lately, I'm taking the 7.5ml lido, 4ml heparin, 6m sod/bi, 5ml sterile water (it seems to help with some of the burn, some of the time). I do this morning and bedtime. Mid day I do 6ml sod/bi, 5ml water, and 5ml lido. It seem like I frequently have to play with the formula. I mix all my doses in the morning and do not (OMG :cussing:) put them in the frige. Cold is my enemy:confused:, WHY? Can't travel much but have a nice travel kit that can hold about a week a meds for me. Does anyone else instill this often? I am so :cussing::cussing::rant: sick of IC. It is consuming me. Has anyone had a problem with losing weight? I've always had a weight problem but now I've lose over 50 pounds with no dieting since starting instills. I know depression is a big problem.:help:. Jacqui.

[L. Thomas]

I had to instill daily for several months at first. I did have some days that I needed more than one instill. I was given the OK to do more than one a day if I needed. I never needed more than 2 a day and that was not frequently.

I do have to do instills alomost daily during early Spring and Fall (MD and I both think it is allergy related). Most of the time I need an instill about every 3-4 days. There are weeks that I don't need one.