Have a ? about Rescue instillations

[libertysrose]

Hello my name is Shae and i just got diagnosesd with IC on 3/9/2006
i also had my first rescue instillation that same day . My ? is have they ever made anyone sick, or nausous after wards and also did anyone have a weird taste after words. the reason i ask is because after mine i felt really sick to my stomach and i felt like i might throw up and after the first 15 mins after having it done i had the worst taste in my mouth a medicine taste. i also had one the next day and the same thing happen. plus my pain didnt seem to go away it seemed to get worse until i voided it but then with in 2 maybe three hours the pain was back. also my doctor perscribed me birth control pills to help relieve the horrible pain i have at my monthly is anyone else on those to for pain?

I also wanted to say i thank god for this message board because after i found out i really felt sorry for my self but then i read alot of these posts and realized i am not alone and i feel for all of us that have to go through this but thank you for all those that can help support each other through it.

[Katrina]

:welcome: to the ICN! Do you know what meds were in the rescue installation?
http://www.ic-network.com/handbook/ this is an essential link for everyone with IC. It is very informative on meds, living with IC, and self help....take a look!!!
The rescue meds I had were Heparin and Lidocaine and I never had any side effect other than some slight retention. The Weird taste in your mouth makes me wonder if you actually had some DMSO? Lots of people are on the pill or even seasonale to keep them from having a period or lesson the pain some of their period.
Anyway, maybe you should try a different medication...sounds like if that was a rescue it may not have been the right one for you! :grouphug:
http://www.ic-network.com/forum/showthread.php?t=7562 this is thread of pain relief the second page has attachments I believe the last attachment is the list of pain relief ideas.

http://www.ic-network.com/forum/showthread.php?t=11535 This is newbie kit from the oldies to the newbies

[libertysrose]

I am not sure what is in it but i will talk to my doctor on tuesday when i go in for my next rescue. as far as the pill i would have thought she might have but me on one to stop my menstral to but she put me on yasmin and i dont start it for another few weeks. i was diagnosed with endometreosis last year so maybe thats why she put me on yasmin . thank you for your input i truly appreciate it.

[Katrina]

I don't know the drug...is it a progesterone? If you have endo you wouldn't want to be on a pill with estrogen...although for my endo progesterone made me worse too. :grouphug:

[Dixiefireball]

i hate to ask but are you sure it was an rescue treatment or was it the DMSO treatments they put in the bladder as an installment? The reason I ask the dmso leave behind a awful oder for many of us like a garlic smell and it killed my bladder I was very badly sick and flared for weeks because of that one treatment.

However I do these heparin rescue treatments at home daily and they have been a God sent to me. Yes granted they don't work asap like we would want because there is no quick fixes to this disease, but they didn't hurt me nothing like the dmso did.
thanks to the rescue treatments I did go into remission for 18 glory months. sadly no two icer are the same it takes time for all of us to find the right combo to help.
the one great place to start is the IC Diet you can find that at www.ic-network.com/handbook plus a lot of other GREAT and helpful info.
sending u hugs and prayers
Rhonda

[Katrina]

I know many who have had a bad experience with DMSO....

Quote:
DMSO As A Treatment for IC
DMSO, also known as RIMSO-50, was the first bladder instillation approved for IC by the US FDA. Yet, it continues to generate controversy from patients, physicians and researchers. Patients report that the therapy can be extremely painful. Physicians seem to be reducing their use of DMSO in favor of therapies, such as rescue instillations, which can soothe an irritated bladder. In fact, some clinics no longer use DMSO at all. Researchers have presented two studies at the AUA annual meeting in recent years that suggests that DMSO can cause damage to the bladder muscle when used in high concentrations. We'd like to collect your experience with DMSO. Have you used it?? What side effects did you experience??? What results did you have??


quoted from part of an ICN newsletter!
I am not saying DMSO should be avoided like it is terrible....but it normally increases symptoms before it helps....if it helps...and in me and others it took quite a while to get back to my norm. The same is not said about Rescue installtions...there is always a risk something won't work for you but I would rather try something that hadn't made me worse before it made me better first. Esp. now knowing how much worse some got.
Jill's post DMSO shows possible dammage to bladder: http://www.ic-network.com/forum/showthread.php?t=22386

Some common side effects of DMSO:
Bladder discomfort or burning while holding it in your bladder
Urethral discomfort
Bladder or Pelvic Pain
Bladder spasms
Headache
Garlic Like Taste or Odor
Nasal Congestion
Shortness of Breath
Skin Rash, Hives or Itching
Swelling


DMSO is being reconsidered as a treatment these days because of the problems with it. True Rescue installtions are more soothing and pain relieving. Meds like Heparin, Lidocaine, Elmiron, Marcaine are rescue installtions. I sure hope that if your doing DMSO you (also known as Rimso) you can switch. Please keep us updated.

[libertysrose]

thats what thet are calling them is rescue instillations, but i am not sure what is in them i am definatly going to ask the doctor whats in them so that i know. as for the yasmin it has progestin drospirenone and ethinyl in it. i am not sure all i know is i was sick to my stomach bad and really got nauses plus that was a horrible tast in my mouth before i voided the rescue.

[libertysrose]

it wasnt a garlic taste it was more of a medicine taste they said something like it was a medicine to numb your bladder now that i think about it

[ICNDonna]

Rescue instillations can contain different medications, depending on the doctor. I do know that when I have DMSO instilled, it most definitely can be tasted within minutes. It's more purified now that it used to be so it's not as awful, but it can still leave a pretty awful taste.

Donna

[libertysrose]

thank you for that post i was thinking maybe it was just me... it does taste awful but it doesnt stay for long..are they suppose to make you sick to your stomach though?

[rosesitty]

I agree - it sounds like DMSO, doesn't it?
Stephanie

[libertysrose]

thank you everyone for your responses , this is all pretty overwhelming finally finding out what is wrong and now all the new medications and the side effects and the diet is hard to get use to , i really appreciate you all answering my question i know i will have more and its nice to know i have some where to go.

[Katrina]

Many times there are coctails...different meds...which can include rescue stuff, Dmso, and numbing things....maybe that is what is going on. I subscribed to this thread to help you as much as I can. :grouphug:

[libertysrose]

thank you , i go back for another one today so i will find out what is in it .
It has been 3 days since my last one and i have hurt all weekend and yesterday its almost like it has aggitated me...i also started Elmiron capsules 3x a day over the weekend i am a little nervous about the side effects i just hope it helps. i also started the diet oh and that has been hard but i know it will be worth it in the long haul.

[libertysrose]

I went to get another rescue today and told the nurse what i was experiencing...she said it had to be something else other than the rescue they had never had anyone react to them like that. i asked what was in it and she told me Heparin and Lidocaine.
i dont know maybe it was i had no problems with it today so that is a good thing

[Katrina]

Many people do Heparin and Lidocaine...including myself. Those side effects were common for DMSO though. Regardless glad this time went better. :grouphug:

[libertysrose]

thank you for all your help .