Dmso

[blue]

If you guys remember, Elmiron didn't work for me,there were too many side effects. Today, I went to the Urologist, and he suggested the DMSO. I start on April 5 and one a week for 6 weeks. I'm really worried!

The doctor doesn't prescribe me any pain medications. He just told me to take over the counter antihistimines......

I don't want to do this, I wish the Elmiron would have worked!

[ICNDonna]

My suggestion would be to be very certain that your uro instills lidocaine, or similar substance, before the DMSO. I couldn't tolerate DMSO without the lidocaine.



Warm healing thoughts,
Donna

[Sarojini]

Hi Blue,

Donna's right... lidocaine would improve your experience, I think. My uro doesn't instill lidocaine first, and believe me, the instills haven't been pleasant without it!! :eek:

Jen

[froglady]

ok scaring me too!! I just went to my uro today and he suggested the DMSO as well, but for 8 weeks. is the injection painful or does the medication burn??? Anyone know?

[Dixiefireball]

i do the dmso at home and heparin and marcaine it has been a god sent to me i don't know what dmso the doctor is going to give you but the marcaine is like a nerve block which seetles down my bladder kind of numbs it and makes it feel alot better.
i how ever did those at the office about a year back and didn't have no good result out of them but after tryng almost everything i went back to them and started them at one one to three times a day and they have helped me so much.
I will be praying for you I Hope they help you like they have helped me.
IF your uro doesnt want to give you pain medicine maybe you should asked him to refer you to a pain clinic or yet ask for a pain contract this way the doctor is protected and so are you. that is what my doctor put me on and i will not take no pain medicine from any other doctor at all! and he gives me 120 perocets 10.325 a mth. my ic how ever is chornic.
sending you hugs and prayers
Rhonda

[froglady]

he gave me this name so I could try to find it cheap.... Rimso-50.

any luck?

[DanaW]

I tried3 DMSO treatments and it did not help me. And, luckily, I was prescribed pain meds. I would take 2 pills before the treatment and then I would take more later as needed. Everyone is different. Some people have great success with it....I felt like I had the flu the whole next day....couldn't get out of bed and then had a constant flare that never went away....(I guess that is the usual case anyways with me) I did get used to the actual treatment bc the nurse numbed the area with lidocane first.... It is good that you are giving it a chance. You might feel better. Good Luck

[Sarojini]

Hi Froglady,

Didn't mean to scare you... I'm so sorry! :(

I'm doing DMSO (Rimso-50) instills right now (once a week for 6 weeks, then I think monthly after that for a few months). I am about to have my 4th treatment tomorrow afternoon.

My first instill was done while I was still under anesthesia after my cysto/hydro, so I had no idea what to expect for the following ones. My second one was terrible (very painful--it burned and my bladder spasmed, and it made me have this incredible urgency to urinate, so much so that I was sweating and turning red about 5 minutes after they put the solution in) ... BUT before I scare you even more, I need to say that my third one was MUCH more bearable... it was still a bit painful, and I still had the urgency, but for some reason it was not as agonizing. They say that they get easier as time goes on, and so far that seems to be the case.

Anyway, if you've never been catheterized before (I hadn't been), that will be a new experience during the DMSO treatments. They numb your urethra with a little lidocaine jelly to make insertion of the catheter easier, and then put the cath in. They say it helps to try to relax the muscles down there when they do this-- some people claim that cathing is not painful, but I find it hurts when the catheter passes my bladder neck no matter what they do. At least it only lasts a few seconds, and once the catheter is in it will feel better.

Then they allow your bladder to drain through the catheter. I found this part weird---it was a strange sensation to feel my bladder empty that way, especially right at the end, when there is this "pinch" or "tug" feeling when your bladder empties completely---it is much different than peeing on your own.

Then they put the Rimso-50 in through the catheter. Like everyone's said, you can ask if your uro puts lidocaine in first (or mixes it with the Rimso). Anyway, the Rimso kinda burns if you don't have lidocaine, and it also makes your nerves go a bit bonkers so you will feel like you've got to pee SOOOOO badly, even though they only put 50-60 cc's in! I bet lidocaine would help with that sensation too.

Then, you just try and hold the stuff in your bladder for as long as you can (they usually tell you 15-30 minutes), and then you urinate as usual. I find it burns to pee the first several times I go after an instill. Try taking Pyridium or Urised to help with that.
I also get an increase in IC symptoms for about 24-48 hours after the instills (frequency, urgency, pain). I find heat helps, and of course, a pain pill if you've got them.

Oh, and lest I forget, be prepared to be pretty stinky after a Rimso treatment. Often the first time you urinate the stuff out, the whole bathroom fills up with this strong garlicky chemical smell. Also, DMSO penetrates tissue so some is systemically absorbed... so you'll likely get a nasty taste in your mouth, and your breath will have that same odor for a few hours. :eek:

My husband eats garlic and corn for dinner on nights I have it, and it replicates the smell pretty well, so I am not alone in my stinkiness :lmao:

Ok, that's Jen's Novel About Rimso... :lmao:

It shouldn't be too bad for you... good luck!!

Jen

[Amber O.]

I was supposed to have my first DMSO treatment last Friday I went to pick up the meds & Rimso-50 & heparin are not covered by Medicaid. They will override it one time so my Dr is trying to see if they can do all 6 @ one time, the pharmacy said to try it that way. It is $80.00 for the Rimso-50and ythat is expensive for 6 weeks. I am nervous about it too & a lot of people have told me a lot of different things. I wish you luck w/ yours.
Amber

[ICNDonna]

Rimso-50 is the brand name for DMSO.

I have a DMSO treatment once a month. I go to the doctor's office, they instill the DMSO --- then I head for home. It usually takes me about 45 minutes to an hour to get home and I hold the DMSO that long.

I do make sure they instill the lidocaine first --- just once they mixed it with the DMSO and it was like there wasn't any lidocaine there. When I went in the next time for my treatment, I mentioned that and they always do it that way now.

After a treatment, I do feel uncomfortable for a few hours and what I do is just sit back and watch a movie or read a book and take it easy.

Sending an encouraging hug,
Donna

[blue]

Thanks everyone!

I spoke with the nurse today. I wanted to know if I could have something to help between now and then. She said she would call me back, either way, but she didn't. She did say, he might not want to give me anything, until we see how the DMSO does!

Dang him! I need something. I believe, right now, my IC is worse than it's ever been!

[DanaW]

They obviously are not going to prescribe pain meds for you. Do you have a Primary Dr. that may prescribe something to ease the pain? I know this must be tough when you are in pain and no one is helping. I would still try to find another Uro. if he continues to not show any compassion.

Donna, now that I think of it.....I don't think that they actually put Lidocane in my solution. She just numbed the urethra before the procedure. Maybe that is why it was so unbearable for me to continue.......hmmmm

[Dianne]

I would never agree to DMSO with anyone who wouldn't use lidocaine or prescribe pain meds. after if I requested because that would tell me that person doesn't have an understanding of IC or the amount of pain we're talking. I always mixed lidocaine with the DMSO and had no pain at all but Donna says she needs hers before. We're all different and need to do what works for us, but I've never known anyone that did DMSO plain and didn't suffer greatly. I personally didn't need pain meds. after but I wouldn't have worked with a Dr. that wouldn't have given me them if requested. I did a years worth of plain DMSO and it almost unbearable. Years later when I had a different Dr. that let me mix lidocaine in with it, I couldn't believe it, no pain whatesoever. I was incredibly angry to think about what I went through the first year before I knew better. Never again thanks to this site :)

[ChefGrl84]

you definately should get the lidocaine.. my first instill was without anything, and it was so painful, i could only hold it in for 8 mins (told to hold t in for 20, but every office is different), i was almost crying trying not to let it all out.. then the next time, they did a 1%lido solution...didnt help much, but then the third time they did a 2% lido solution that they left in for a couple mins before, and i felt a lot better.. and remember, even if your feelin fine before the DMSO, still get the lido.. thats why they didnt give it to me the first time, because i felt fine.. not hurting at all..

most of the time afterwards, i would leave the docs office and immediantly stop at the wendys down the road because the urgency was sooooooo bad.. the last treatment though, was great... no urgency at all.. but i was bad afterward.. i ate WAY too many no-no's and made the urgency and frequency all come back, not as bad as before but still annoying..


all in all... i wish you luck with the treatments and hope that it works well for you :)


Rachel :angel:

[kadi]

Is marcaine like lidocaine?

[jjmowen]

I personally find the treatments to cause some pain that evening and the next day. I have been having them monthly since last May. When I first started, I found them to be more painful than they are now. They also seem to be worse if I am already feeling bad that day. I went through 8 weekly treatments first and then went to monthly. I didn't find relief until after the 5th or 6th. But I went from going every hour in the day time to every 2 hours. Also I used to get up 3 or 4 times at night, now I only get up once or twice.

I take a pyridium plus and a Tylenol 3 immediately after getting home and drink a full glass of water. The urgency and burning seem to let up faster if I drink the water as soon as I get home. I also lay down and use a heating pad. That seems to help alot.

I would seriously suggest that you discuss the pain issue again. You may need something for pain after the 1st treatment in case you are uncomfortable.

Good luck.

[Dixiefireball]

Heparin and marcaine is covered by medicaid i get them every mth and they are also override it for me the marcaine doesnt cost me nothing not even the 3.00 i do have to pay the 3.00 for the heparin however.
Marcaine is like a nerve block and it really helps my bladder.
:)

[kadi]

I'm still not getting it. Is marcaine used in addition to lidocaine or instead of???

I've decided to hold off on trying DMSO til summer vacation and in the meantime checking out some other options too. (I'm a teacher & am worried about losing work since I can't exactly write myself a pass to go to the bathroom during class! And I'm out of sick leave, so every day I miss I lose pay too.)

These posts have scared the heck out of me. Am wondering-does the DMSO only help with bladder pain? Has it helped anyone with urethral pain? How about expanding the diet? (I'm super-limited). Anyone able to wear pants after DMSO?

I've got a lot less pain than I used to have. But am still very limited on diet, cannot wear pants (really miss my jeans!), can't drive long, am having to live a very careful small life. I feel old at 36! But have been so scared by these posts, I'm afraid what if the DMSO makes things really bad again??? Am also worried because I have a lot of medication allergies & intolerances - 5 meds at once into my bladder worries me. I miss my old life, but I'm so grateful I'm not as sick as I was last fall... Maybe I need to just settle for how it is now?

Anyone with experiences they can share? If you could please phrase things as positively as possible- I'm really struggling with fear on this. Thank you.

[Dianne]

Kadi, hi, marcaine and lidocaine are basically the same but marcaine is longer actiing. Generally you would use one or the other but not both at the same time. As for DMSO, I've never been able to tolerate the cocktail additions (sodium bicarb, heparin, elmiron, etc.) but DMSO plain with lidocaine didn't hurt before, during, or after. Actually the only thing that ever hurt me was plain DMSO without lidocaine but only during the instill, not after. I've never had to take pain meds. after and I generally was already better that eve. I never lost any time from work either. It worked great in the early days but over time quit working. As for urethral pain, I wasn't having urethral pain back then but DMSO never bothered my urethra either. I do have urethral pain now but it is totally controlled with Blue Diamond Almond Breeze almond milk. I tried to email you privately but you're not set up to receive pm's. If more questions, I'm at montanapets@earthlink.net I've probably done 50 DMSO over the years.
Dianne

[Dixiefireball]

the sad fact about ic is everyone is diff.:( I do think its a good idea to wait until this summer to try it just in case. How ever I am one of the icers that does great on the dmso heparin and marcaine. before i started the dmso at home i was a wreak. but since everyone is diff. and you are a teacher I would wait until this summer to start them. I agree you don't need to miss any work if you can help it plus if your out and a sub is taking your place the children may not learn what you need them too.
sending you hopes and prayers Rhonda

[malone]

I had So many DMSO treatments that I had too many and got SO sick. But they did help alot. I was highly allergic to the Lidocaine and did not need it. Good luck!

[jjmowen]

For me DMSO was such a huge help. It cut my pain alot, also helped with burning, frequency and urgency. Without it, I would have quit my job by now. With it I can still work 40 hours a week.

I still have to follow the diet at all times, but am able to stand riding in the car much better. My quality of life is much improved because of DMSO.

Please don't be discouraged and scared. It may work very well for you.