Update after treatments

[blue]

My 6th DMSO was on May 10th. I did well until May 19th. I'm in a bad flare now. I feel like I need to call the doctor back, and see if they can do more! I was doing great while in the middle of treatment, but now, I'm miserable. So, I would say it lasted a week and a half after my 6th instillation! Bummer!

[kelly McC]

I am sorry to hear that. Glad your giving doc a call. Hope you are feeling better soon,
Take care,
Kelly

[Sarojini]

I was the same way -- I had 6 DMSO instills, and then took a break. Two weeks later, I had a flare. So I had three more DMSO instills. And now I'm having another flare. So... decided to quit the instills for a while and explore other options.

[Dixiefireball]

blue this is a little diff from dmso and it may help you it did me i now have no more pin point bleeding on my bladder i still have ic but not that part. thank heavens
asked your doctor about trying a cocktail called heparin and marcaine.
it goes into your bladder the same way but the marcaine is a nerve block and numbs your bladder up so you dont feel the pain or prussure you still know when you have to pee tho so dont worry about that.
and the heparin helps heal your bladder.
just a thought.
sending you hugs and many prayers
Rhonda

[Sarojini]

I am going to ask MY doc about heparin and marcaine. I seriously think it would help me more than the regular, garlicky DMSO. I also think it would be SOOOOOOOO much easier for me to be able to do it at home.

Rhonda, how often do you do your treatments?

[blue]

Thanks for the info, I'm going to ask about it!

[Dixiefireball]

Most doctor will start you out on only two to three times a week but since the new study came out and i was already doing them two to three times a week I now do them one to three times a day i started off full blast when i learned about the study that it was safe three a day then i worked my self back down to one a day unless i have a uti or i'm having my peroid Yes it would help me while I'm having my peroid but i have learned if i do them while having my peroid beside the mess.:toilet: i'm more pron to getting an infection but that is me. IF your doctor agree with this I truely hope it helps you like it has me. last year i had over 90 pin point bleeding spots on my bladder now i have NONE:thumbsup: sending you hugs and prayers
Rhonda

[Lyn40]

Rhonda,
That is wonderful that your pin point bleeding is so much better. That gives us hope. Today I scheduled my first DMSO instillation. I've only been thinking about it for way too long. The drugs they will be using are:
Rimso 50, Nabicarb 44.6 MEQ, Heparin 15,000 U/ML, Kenalog 10mg/ml
Does anyone know if any of these drugs work the same as the Marcaine? The nurse explained it to me, but I have forgotten.

Thanks,
Lyn

[Sarojini]

No --- none of those drugs are an anesthetic like Marcaine. The Rimso is the actual DMSO part, the Nabicarb is sodium bicarbonate, which is supposed to be soothing, and it reduces acidity in the bladder. The Heparin is a bladder coating, and the Kenalog is a steroid to help with inflammation.

My DMSO treatments were Rimso, sodium bicarb, and cortisone.

I WISH they'd used an anesthetic in there...

[lotsofgirls]

Hey Valli,
I had the same reaction with the RIMSO and asked my uro about continuing but he didn't like the idea. His explanation is that the RIMSO "hammers" (his word not mine) the bladder for 6 weeks, and that it needs to heal for a month or so and then see what difference it makes to the symptoms. I did get alot of urgency relief but that was it. I am going to see him about doing some follow ups again.
Cath

[blue]

My follow up is in a few weeks!

[raevarg]

Hello Blue,
I had about 6 instills and improved alot. This past year my husband had cancer, two weeks after that I broke my back then the highway bought our home so we were faced with a big move just as my husband had finished his chemo and radiation. I did quite well for quite a while. He had his last treatment in the middle of november and we moved Jan 22,2004. I have been great actually until this past week and IC was the farthest from my mind. I went to my PC for what I thought was maybe a bladder infection and they told me to go see my IC doctor. I was in a flare. It does help. IC is never far away though it seems. I have taken Elmiron for over a year now and that too is a help.
Rae

[aantol73]

Blue,
I hope you did call your doc and were able to get some relief....
Sending warm hugs and thoughts!!!! HOPE YOU FEEL BETTER SOON!!!!

[blue]

Rae, my daughter's middle name is Rae, even spelled the same!