Heparin/DMSO question

[nifer]

My doctor is weaning me off of my cocktail of DMSO and heparin so my last treatment was just heparin. I think I had my FIRST real IC flare this week... I used to only have frequency and this week I had major bladder pain and urethral spasms... Has anyone else gone off DMSO to just heparin?? He didn't really explain why he just went to one since both were working... My next 'fill up' is on Wednesday so maybe I can convince the nurse to give me both again... I can't seem to wean off of the drugs without frequency. I started my six treatments in September and haven't gone more than 2 or three weeks without a treatment yet. I didn't think my IC was that serious that I would need continued treatment. It can be such a pain to get to the hospital, find parking... and then wait for an hour to get your treatment!

[momw/ic]

My doctor recently switched me from dmso every week to heparin and marcaine every day. He thought I would get more benefit from daily instills. He taught me how to do it myself and I now I do the heparin/marcaine in the privacy of my own home without the pain of going to the doctor (not to mention the co-pays). I was really skeptical at first and was certain that I would never be able to do this myself but so far it is working out really well. Instead of flaring 3-5 days a week I typically am only flaring about 1 day a week. NOT BAD!! Good luck with your decision. Don't be afraid to speak up and tell your doc what works for you!

[rachelm]

I wish I could convince my dr. to let me do my heparin/marcaine at home each day. I'm going to the dr. every day for bladder washes. He is 45 min. away and I'm in severe pain so I can't drive myself. scream I already know how to self-cath and am having to do that several times a day sometimes every hour because my retention is so bad. So I have asked his assistant and him several times and they have explained that the marcaine can cause resperitory distress if too much is instilled so they don't feel comfortable sending it home. I wish they would just mix it up and send me home with a weeks supply of syringes. Oh well. I love my dr. and all of his staff and they have all been so helpful to me so I don't want to switch dr. How do you take home your instills? Do you mix them at home?

[momw/ic]

I have the heparin and marcaine mixed at a compounding pharmacy per the docs prescription. I have scripts for catheters and syringes that I get from a medical supply store. I get a months supply at a time but he also put 5 refills on everything. My doc is 30 min. from me so this is really actually a nice break. A lot of times I would hurt worse coming back from the doc because of holding me pee until I got home.

[Dixiefireball]

I use the heparin and marcaine treatments at home one to three times a day. ( sorry I can't tell you how i mix that and everything i have to put in it in fear something i say may be taking wrong.) but the marcaine and heparin has saved my life when i was about ready to give up hope of ever haveing a few normal days then the sunshine came threw for me. I wish i could say this has taking care of all my ic problems but it hasnt i still have painful peroids and my nerves will set me off into a flare also but the heparin does help that to a point.
I don't know how bad your ic is but if the heparin was helping you I would ask my doctor not to take you off of it. If you go off of it all is going to happen you will have more pain and end up back on it again.
best of luck to you. grouphug Please let us know what happens.

[Marti]

Sorry, but your doctor is wrong!

Patient self-instillation is common and done all over the US. Send him to

http://www.ichelp.com/PhysiciansReso...ilRecipes.html

The concern about marcaine causing respiratory effects is lore- it has never been reported in the peer- reviewed literature. If he is concerned aboutit, ask him to give you the lidocaine cocktail w/o the marcaine.

Or find a Dr who supports patient self-instillation. I had to drive five hours and pay out-of pocket.

It was worth it. Managing our own symptoms gives us back our lives.

-m

[liz2]

I wonder why some doctor are using gentamycin in their instills? That is a very, very powerful antibiotic that is usually used in a hospital protocol.

I do my own instills but would never want to handle gentamycin by myself or outside of a hospital setting. Allergies to it are common.

[liz2]

Marti, I think it is the level of marcaine used that has the potential for causing respiratory problems. That is one of the known side effects of too high a dose of marcaine. I believe peer research is looking at a lower dose.