4th dmso today - so when does the pain stop

[Portia17]

i had my 4th dmso today and my period. so is that why the pain is worse

when does this pain go away or does it ever cause i am ready to rip my bladder out

[ICNDonna]

I know the feeling! If the DMSO is going to help you, it can take several weeks to know for sure. I hope it's an answer for you.

Donna

[christinaw]

i have had 4 DMSO bladder cocktails and not feeling relief yet either. :(
Urologist said that one more and if no improvement then it isn't going to work for me.
Hope that you have better luck than I do-

[~*~Christine~*~]

Are the instills just DMSO or a cocktail? Some people can't handle just DMSO and need it mix or can't handle DMSO at all. I had one DMSO instill and quit due to the severe pain and am now trying a cocktail; if it doesn't help you and is making it worse I would suggest you talk to your uro about it

[kadi]

Last summer I had a series of 6 DMSO cocktail treatments (DMSO/Heparin/Marcaine/SoluCortef/Sodium Bicarbonate). For me, the improvement came about 10 days after the series was over... I now have 1 every 4-6 weeks, & while I still have IC, the flareups are less frequent & less painful. I do not have the level of daily pain & pressure I had before the series. Before the series, I could not exercise, wear pants, drive longer than 30min without pain, did not even want to attempt travel. Now I can wear pants & jeans if they are loose, can work out at the gym or take yoga, can drive several hours without a problem & have taken 2 trips (one cross country to NC and one to Houston).

The doctor had told me that if I was going to see relief, it would have been obvious around the 4th treatment. I was terribly disappointed after my 4th treatment, but kept hoping I'd be one of the ones who got better after the series was over. And I was. My doctor said it's rare, but I did see it mentioned in the blue "Patient to Patient" book for sale in the ICN store...

Hoping you will feel better soon!

[Portia17]

Not very encouraging news that if the dmso dont' work so what then that is it? So what I am supposed to do live like this the rest of my life. So Christina what are you going to do then. You have any ideas? I am really upset about what your uro told you. I might as well just give up then

[kadi]

No!! Remember, you may still start feeling better after the series is over. DMSO is not the only option. Some have success with the cocktail. Some are okay with just DMSO. Many, many people are having success with the lidocaine/heparin instillations. They have to be done more often, but it seems that as you use them, you need to do them less frequently.

Are you on any oral meds? A lot of people have success with Elavil, Atarax, & Elmiron. (Those are the top 3 meds currently considered the most effective). The Elmiron takes awhile to work, some people start feeling better after taking it 6 months.

Hang in there--I was pretty desperate a year ago, thought I'd never feel normal again. This morning, I just now got back from running errands - the bank, the drugstore, and 2 grocery stores. I did not need to use the restroom at all on the trip and feel perfectly fine. A year ago, I could not have done this many errands at once nor could I have made it to even one grocery store without having to use the restroom.

Sometimes it takes awhile and trying a lot of things before you find "your" combination that works. I went through 17 meds before I found what worked for me, but I do feel good most of the time. (Though whenever I flare, I'm paranoid that my life is over & I'll never feel good again)

As much as possible, try to stay hopeful, okay? Hang in there. This is not forever.
Love,
Kadi

[ICNDonna]

When I first started DMSO the treatments were extremely painful. I was ready to stop them when one night I slept all night without any potty trips. That was enough to convince me to continue. I'm on a monthly schedule now and even though it does hurt for a few hours afterwards, it seems to help the rest of the time.

Not all ICers are helped by DMSO, but I'm glad I tried it.

Donna

[christinaw]

Portia17-Do NOT EVER give up!!! DMSO cocktail is only 1 treatment option---and it is my understanding that everyone responds to these things differently. I have DMSO cocktails and am still in several pain afterwards for several days--but trying to cope w/ it and continue until we see if it helps. And, if it doesn't, then I'll move on to the next option. And I continue to take Elmiron, as I understand that it can take up to six months to see effects. I am also regulating my diet, taking prelief, praying A LOT, I just tried acupuncture yesterday for the first time....I hope that things improve enough so I feel up to trying yoga and light exercise again. I really miss exercise!!!!!!!
Portia, don't ever give up. We all have to keep searching until we find what works best for us. I'm a long way off from normalcy too but I am determined to get my quality of life back someday, someway.
Hang in there--we'll explore options together!! :) People on this site seem to really have great info to help us find out what to do next! There is safety in numbers and we're not alone!!!!

ChristinaW

[gidgit]

I had my fourth one on Friday (DMSO/Heprin only) was the usual burning and spasms all that day, Saturday was ok until Sunday night! Could the DMSO have triggered this? :headbang:

[DebbieD]

Yes It could have. I did DMSO for 7 years , no Luck on me :loco: . So after all said and done I had a Urostomy. with 3 revisivons and A rIGHT kIDNEY REMOVAL.bUT i HAD a bUMCH OF gREAT dOCOTRS. :woohoo:

DebbieD

I hated That DMSO> :bonk:

[gidgit]

Oh my, you have had a time of it!!!! You sound so brave and strong.
I am not too sure what other path to go...can't take the Elmiron.....


sabrina

[kadi]

HI Sabrina,
When I get the DMSO cocktail (DMSO, Heparin, Marcaine, SoluCortef, Sodium Bicarbonate)Friday night, I frequently get the mini-flare from it on Sunday. They told me that's probably when the Marcaine, which is a long lasting anesthetic, wears off. Don't know if you have anything like that put in at the same time, but that might account for it.
Wishing you success with your treatments. They've helped me a lot.

[gidgit]

Thank you Kadi...
Nothing special in the DMSO except the Heprin. So far, this flare up is the worst in recent memory! I am still not 100% maybe not even 75% My finally called one of my doctors and he prescribed Medrol and Cipro and ultracet for pain.....(I am i n the Navy and both my URO and GYN are not in this week, so I called my civilain Doctor which has been the best)
I am so weepy right now with this, I guess it has been just so long since I have had such a terrible, mean flare up! tomorrow will be better...it must!

Sabrina

[Portia17]

okay so if dmso does not work, then what happens? i already take elmiron and pain mgmt pills and diet

ty

[kadi]

Hi Portia,
Maybe the next thing to ask your doctor about would be the Heparin/Lidocaine instills. Elmiron, Hydroxyzine, & Elavil tend to be the mainstays of oral medications. So you could talk to him/her about those too.
Here is a link to the Patient Handbook so you can look for new options or check out anything your doctor wants to try. But again, don't worry, you may still get better when your initial series is over. It happened that way for me.

http://www.ic-network.com/handbook/

Sending a hug & hoping you feel better SOON!

[isabelle]

I had 8 DSMO cocktail treatments and I probably shopuld of stopped after 4 but I was hoping it would somehow work considering some people say that they didnt get better until after the last treatment. 6-8 treatments once a week is what I hear works... I also just read though that DSMO works for 30% of IC people and ELAVIL or other antidepressents like it work for 60%... Has anyone heard this before? I know we r all different and everyone has a different reaction with what works for them so we shouldnt give up on one thing though....