DMSO vs. Rescue

[nabroeker]

I am scheduled to start DMSO treatments this week. What is the difference between rescue instillations and DMSO and does anyone have advice on which is better or which they would try first. I posted under the DMSO thread that I am terrified to do this. I have terrible pain with caths and I read the posting under DMSO that says some doctors are not recommending this anymore. HELP!!!!

[Baba Yaga]

Nab,
I just did six weeks of it. A regular course of it for one or two months is extremely unlikely to harm you. If you are not improving by the end, you may end up switched to different drugs or a different solution for instillation.

ICN Sarojini is one person (the only one I know of here) who reports a bad reaction to her treatment, but she also reported really suspicious conduct on the part of the people doing her instillations.

Are you recovered from your hydro? i was in a lot of pain.

You are already familiar with pain and dealing with it, right? The DMSO may cause you some discomfort at first. You may have one or two episodes of vaginal discharge (clear and odorless in my case), and you may have some bleeding from your bladder/urethra also with some possible discharge. Don't be scared of any of this unless it seriously spikes your pain, because you will adjust within a few weeks.


My doctor did a great job with my catheter. He put some betadine first i think, and then some lidocaine gel. The catheter after that, for me, certainly was not worse than having a speculum opened inside me or getting a pap smear swab.

I was also in the situation of being very self-conscious because the person doing this stuff to me was/is a seriously attractive man close to my age.

I don't know how much it has all helped me yet, but I don't think it hurt me, and I have survived it.

:grouphug:

[nabroeker]

Thank you for your advice. Could you please tell me what the odor was like for you? I have heard alot about the garlic smell and taste.

I am recovered from my hydo. I was in pain for about five days, but seem to be fully recovered now. I did notice an increase in my voiding at night however after the procedure, strange. I was so hoping it would help with the pain of IC, but have not gotten any results as of now.

Please keep my posted on your treatment and recovery. I would greatly appreciate knowing if this helps you and hope you start feeling better soon! Thanks again for your advice.

[Prinny Joy]

I've just recently started rescue treatments, they have a numbing effect to me. WHen I had DMSO it didn't work for me. Maybe because it was pre interstim and I couldn't hold more than 10 minutes. It was awful to me and seems some like it cause we're all different. I seem to like rescue treatments because it makes me feel numb in the bladder for a while, not long. But it made me feel a diff. oppose to how DMSO, or Rimso made me feel. I wasn't shown how to give myself the treatments I was only told verbally. The nurse from my church came over to help me with how it is done and the second time I did it alone was disater for me and my bathroom. I filled the syringe w/ the cap on, so that was a struggle, then I tried putting it in the catheter and mind you w/ the lid on. Did pretty good, got up to 40 w/ the cap on syringe and my prescription is for 50 and then I force it in the cath and it explodes all over me and the toilet and floor, also the mirror I was using. What a mess, had to redo it all and took me 30 minutes, so I'm just rambling right now and my advice is just learn how to do it properly or your bathroom will look like mine did. Oh and P.S. It also helps to make sure you get it in the right hole. Another mistake I made. PEACE

[Katrina]

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

[kadi]

I had a series of 6 once a week DMSO cocktail treatments (5 meds, not just DMSO) in summer 2004 and once monthly for a year after that. They did reduce my pain considerably, though not completely. The risk of damage to the bladder from DMSO is reduced by using DMSO as part of a cocktail.
Since Aug. 2005, I have been using Heparin/Marcaine/Sodium Bicarbonate instills at home. These work better for me.

These were the things I considered about these 2 forms of treatment:

DMSO cocktail instills:
+Lower insurance copays
+Less hassle with approval of treatments since they are FDA approved specifically for IC.
+Less frequent catheterization, so possibly lower risk of infection
-For me, greater side effects (this I managed by having instills on Friday afternoons, so that if I felt achy, flared that night, the next day, I didn't have to work. When I had Friday instills, I always planned pancakes for dinner & a video for Friday night, and to stay home & rest on Saturday.)

Home instills:
+Less doctor appts, less time wasted in doctor's waiting rooms
-More insurance hassles (this I reduced by buying supplies through a "contract pharmacy"- a pharmacy contracted to provide supplies, bills directly to ins. company, at lower price for supplies & meds.)
-Overall cost is more than DMSO instills, but for me it is still manageable.
+Greater control over symptoms--if I flare in the morning, I can give myself an instill & still go to work, rather than having to wait for doctor appt.
+For me, less side effects. No systemic side effects like body odor, nausea, or achiness, like with the DMSO cocktail. I do get some urethral burn with the home instills sometimes, but it's so much less than the IC pain, it's not a priority issue.

Things to consider anyhow, in your conversation with your doctor.
Good luck and hoping that whatever you decide on brings you relief!

[nabroeker]

Kadi,
Your info is to much help to me! Thank you for your time and thoughts. I saw one of your meds in Elavil. Does this help you sleep at night? I get up around 8-10 times a night and need some relief!!!! Thanks

[Katrina]

Great post Kadi! I feel I need to add...rescue installations do not need to be home installations. My insurence that normally gets on my nerves a lot did pay for the Heparin and Lidocaine and even if it didn't Heparin is a cheap drug. Home installations were less cost yes! The only side effect Heparin gave me was retention once...and I held it a very long time when that happened. It wasn't severe and only lasted a short amount of time. DMSO...multiple side effects. I know that at least for me Heparin helped during a time when I really need the help....and now I only do it for bad flare ups. We are not all the same as to how much we need with either drug.

The thing about rescue: if you do Heparin or Elmiron your helping to create a coat for the bladder which can help you get to a point where an oral coat can help you instead....(many times Elmiron instills are do to help you through while you take Elmiron orally so that you don't have to wait the months it can take to work) If you do a coctail of rescue with added pain relief such as Lidocaine you may have a better day than like DMSO which was normally a bad day.

oh yes, when I went to home instillations of Heparin insurence wouldn't cover it anymore at some point...but it was still less than copays of most of my meds and cheaper than multiple doctor appointments. There is a lot of info on the board about doing home installations.

[Dixiefireball]

I've tried the DMSO but they hurt me so badly it took a while to recover from them plus the smell was AWFUL! I went threw many treatments and was finally against a wall when my Dr. suguessed that i try the rescue treatments at home I had tried them in the office before but I didn't give it a far chances to work. I said yes i would give it a try at first i started off doing them two and three times a week. i didnt' see a difference in my pain or urg/ freg. I went in one day after a x-ray of my kidneys crying in pain and my RN came out with some new information on how it was safe for ICers to use the rescue treatments up to three times a day if needed at home. I said i wanted to try it. So with the approval of my Dr. I did. in a bout a three to four weeks time of doing these at home i seen a big differences matter of fact i went into remission for 18 Glory mths. Sadly i'm out of remission for other health issue but am i sorry for giving these a fair chance the answer is No. I'm glad i did and I still do these treatments every day they give me a great deal of relief still, but the effects doesn't last as long as they use to. after a peroid of time i grew where i could hold the treatments longer and longer and i notice as long as i didn't feel a urg to pee they kept my bladder kind of numb and relived my pain a great deal. I'm one of those ICers who has progressed threw the years, but most Icers don't progress in there dx. i also have those nasty hunner uclers.
I honestly believe its worth giving them a shot to see if they will work for you. You can start them off in the office so your under the care of your dr. then if you both agree they work maybe you can start them at home.

one things to please remember with either the dmso or the rescue installments please ask the Dr. to give you a sample anti after each treatment or a mild anti. to take at home after each treatment to advoid the risk of a UTI. these can delay in seeing an improvement in your health.
Its up to you and your dr. what you try but honestly i say stay away from the dmso. the rescue treatments are the way to go, but that is my personal exp. after trying them both.

Jill the owner of the ICN Just posted a well informed thread on rescue treatments v/s the dmso. it was very well said.
if you haven't read it please do. keep asking question and be open and honest with your dr. the more he knows about you the more he can help you.
if you have any more question on the installments please P.M.
Sending you hugs and prayers.
Rhonda

P.S remember there is no quick fixes when it comes to IC. but following the IC diet and taking your time with each treatment makes a huge differences in finding remission.

[Prinny Joy]

I was never given an option that rescue could be done at the Dr. ofc. Well that sure is nice to have learned that. I get the imprseeion most do their own??????? I think it depends on the severity of frequency cause DMSO may have worked for me had I been able to hold it. I do get a foul taste in my mouth when I've done the rescue.

[nabroeker]

Just wanted to say much appreciation to everyone who has given advice so far. I am in a dillema of what to do next and all of your advice helps me. So good to know people with IC have a place to pull together and get answers. Thanks to all!!

[Katrina]

Prinny Joy, did you do marcaine, lidocaine or was there Heparin or Elmiron in your rescue installtion? If it was just lidocaine or marcaine that makes sense that it just numbed things but if the Heparin or Elmiron is there too it should helped longer. Between lidocaine and Marcaine I hear marcaine numbs longer and is safer....but I have only ever tried the Lidocaine myself.

[Baba Yaga]

I also am curious about whether rescues can be done at the doctor's office. I am no where near ready to do these on myself. I can't even find the place in a mirror, and have an aversion to probing it if i do.

Nab, i should add that i tried to ask my doctor about the concentration of DMSO and he was pretty decisive about it and didn't view the controversy about DMSO as warranted/based on credible data -- Not that we actually discussed what controversies he was aware of. If I had the option of doing 25% DMSO with other stuff like elmiron, heparin, or hyaluronic acid, i would have preferred that, and felt calmer about it all. If you have that kind of say in your treatment, i would encourage you to go that route (minimizing the DMSO) -- but that's just my one opinion.

i think a small amount of it is probably good in any instillation because of its supposedly amazing absorbtion properties. But of course this may also depend on the individual patient.

[Katrina]

My first Rescue installation was done at the doctors...as are most people. If you choose it can stay that way.

[hoping4acure]

DMSO wasn't for me either...I believe it made my bladder worse.


-ANYWAY-


I got my rescue treatments (Elmiron, lidocaine, and bicarb) in my doctors office EVERYYIME. I never did one myself. I believe this course of treatment was less abrasive and helped me a whole lot better.

[Baba Yaga]

Need2heal, were you temporarily worse from the dmso, or would you, like sarojini jen, say that it caused a permanent worsening?

[nabroeker]

Hello All,
I called an canceled my DMSO treatments today, much against the advice of the doctors office. I just feel scared about them and have decided to try rescue instillations. I ask my doctor about them and he said he had no clue what they were!!! I live in a small town without many options and have had it with doctors!! If I can not do rescue instillations I am not sure where to go now. Any options?????

[Katrina]

http://www.ichelp.com/TreatmentAndSelfHelp/medsguide.html ICA treatments and Meds
http://www.remedyfind.com/hc-Interstitial-Cystitis.asp This is a link to a site with IC treatments rated by patients.
Oral Elmiron is a good start. Diet has helped more people than anything else, the rest kind of depends on your symptoms....pain, burning, frequency, urgency, bloated, sharp pains, pressure pain, let us know what they are so we can let you know what treatments help those symptoms the most. :grouphug: Heparin is pretty common and one of the rescue installtions...your doc may know the drug even if he doesn't know it referred to as rescue installations. :grouphug:

[hoping4acure]

Baba Yaga: It was permanent worsening. I went through hell with my first URO. He didn't even tell me about any other options! He swore by the DMSO, after my first round of treatments, I was fine for about 6-8 weeks and then WHAM! came back in the worse way. He STILL didn't tell me about other options. NOTHING. Didn't tell me about Elmiron, or anything else for IC. NOTHING. Wouldn't even give me pain killers...said he didn't want me to get addicted (yeah...we all know know THAT story) I wasn't sleeping, he wouldn't give me anything to help me sleep. I was going out of my mind. His answer was...well, it's time for MONTHLY DMSO treatments! So, not knowing any better, went along with it. By the time I got rid of him (thanks to my GYN) My bladder was so beat up. The 2nd URO told me she heard of him (first URO) and she did things "differently" She sure did...she helped me into remission! I live in a little town south of Boston, and the URO my GYN sent me to is in BOSTON, which is where I should have started in the first place.

Sorry I went on like that, but I can really get going just thinking about that damn URO! Can I come for air now? LOL...


So to answer your question...yes it was permanent worsening.

[Katrina]

(((((((((((need2heal))))))))))))) so very sorry you had such an awful experience with DMSO. Thank you for sharing and warning others! So glad your doing a lot better now...there is hope :):)

[Dixiefireball]

Yes normally a Dr will start you off in the office to make sure your going to be okay with the rescue treatments they want to see how your going to react and see if they see an improvement before they give you an RX. Plus they will train you in the office to do these treatment and want to makes sure you understand how to use them.
hope this helps.
Rhonda

[nabroeker]

Here are my symptoms as asked for by Katrina:

Frequency, about twenty to thirty times a day
Urgency
Sharp pain in abdomen
Dull pain in bladder
Achy feeling in bladder
Bladder spasms
Constant pain in urethra, especially after voiding
Pain in my right side, front and back
Painful intercourse
NOT SLEEPING!! This is the worst for me being a teacher

If anyone can help with more suggestions they would be appreciated.
I am going to try to start a more strict diet. I have trouble giving up acidic tomato foods!

[nabroeker]

Need to heal,

I FEEL YOUR PAIN!!!! I can not stand my uro. He is the same way, he has one option for me and thats what he does. He gives me no other choices!!!!!

[Katrina]

Frequency: about twenty to thirty times a day Make sure when you go everything is getting out. You may have some retention. Adhesive heat pads can help to relax your musscles and allow you to go better....I find stimulating the urethra helps with the retention somewhat. Also, antispasmodics help...you may want to keep trying different ones until you find one that works for you. Also diet can help this symptom as can antacids.
Urgency:...usually need an antispasmodic and look into if you have PFD....
Sharp pain in abdomen. antisasmodics, adhesive heat pads alternating with cold, warm baths with baking soda.
Dull pain in bladder. are you refering to a pressure pain? you may have retention. otherwise pain meds (pain meds may be in different forms)
Achy feeling in bladder: pain meds....and helping allow your bladder to heal...Desert Harvest Aloe Vera, heat and cold.
Bladder spasms...antispasmodics there are a lot. Some listed in handbook...don't give up on them too fast there are many different kinds.
Constant pain in urethra, especially after voiding. Sounds like PFD symptom.....moisture, cold, heat, musscle relaxants, physical therapy.
Pain in my right side, front and back (do you have a hunners ulcer on your right side?) is he pain constant, acy, sharp, constant? does it go along with the spasms? is it affected by diet or anything (activity?) there are some flare triggers in the newbie kit that may help you answer that.
Painful intercourse..http://www.ic-network.com/forum/showthread.php?p=183302&posted=1#post183302 Jen's thread of great tips to avoid pain during/after sex http://www.roadtoslainte.blogspot.com/ more sex help

NOT SLEEPING!! This is the worst for me being a teacher....http://www.ic-network.com/forum/showthread.php?t=11535 This is newbie kit from the oldies to the newbies there is a list of sleep helps in there

Diet...prelief or Tums may help you handle better the times you cheat on the diet.
http://www.icnshop.com/ there are IC friendly things such as alternatives, soaps, foods, books, and many other things. It is a good place to take a look at.
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 idea
:grouphug: We have a lot of members that are teachers...you may want to start a thread asking if they have any specific clues that can make a day easier....one recommendation I have Is to sit on a pillow....both in a car and at school. :grouphug: I know before I quit work I had a lot of difficulty getting a chance to go the bathroom as often as I should of...put me through way more pain than I should have.
You didn't mention having any bloated stomach otherwise known around here as the IC belly but that does not mean that an allergic like reaction isn't going on. Some of the antihistamines commonly used for IC are very helpful in helping people sleep...but they can be strong at first. If you try one it may treat multiple symptoms and help you sleep but you may want to start it only at night and during a weekend because some of us have had some reactions to some of them.
I hope that helps you with a place to start at least! :grouphug:

[Prinny Joy]

Nab, teacher here as well. Only totally disabled. I did manage for 7 years teaching w/ IC, had to give it up two and half years ago. I recall getting up at 1:00 am and then being up ALL night after that and then going off to teach my first graders. Sure wish I was teaching again. What grade for you? Dixie, my learning how to do rescue came from my church nurse. I was given verbal instruction and no one taught me anything. In fact it was the church nurse who said I needed a mirror bigger than my compact which is what I used and she also said I should get a light that I could use. I hope Dr.'s would think about such explanations when just telling people you use a irror and it doesn't hurt. That is pretty much the way I was told and had I not had a nurse come over and show me I wouldn't have ever even done one. Anyway, they didn't teach me. And those who do get these rescue treatment prescriptions please make sure you are taught how it is done.

[Dixiefireball]

My uro's RN did tell me about about the mirror and using a light downstairs if i had to do them alone in the beginning but told I would get better doing them over time. With in a few weeks I no longer needed a light or a mirror. What was easiest for me in the beginning was sitting in the tub or laying on a towel and letting my husband do it for me, but those both was just a bigger mess. Now i can stand over a toilet without a mirror or a light and i get the cath in every time without any help, but still its nice to know that my husband knows how to do these for me if needed. I so understand that not all people have this type of help and must do it alone, but personally i would rather do mine alone.

I think its wrong for a Dr. to give an RX out and a patient doesn't know how to use it. One thing my Dr does it make sure i understand how and when to use any RX or orders he gives me. If i don't understand the medical talk i tell him and he will word it to where i do understand. (i wish they would all do that, and take the time to show they care.)

DMSO are painful. I wish I never had the first one done. (which was my first and last.) rescue treatments are far more safe and helpful to my bladder and must be like that for man others after the thread and research I've read.

nabroeker i read and answered your PM to me before i read this thread. I wanted you to know that because i gave you a lot of information before i knew you cancel the appt.
the IC diet is very important on how we feel with IC. I know its hard to get use to it took me forever to give up my cola.
there is a book in the ICN shop from a member here Julie B. that i so wish that had been out when i first was dx. it makes learning our trigger points so much more easier then tackling this alone and remember we are here for support too. You can do it hon. i have faith in you and so does all the others here too.
as for your DR. if you don't believe he is listening to you then its time to find another uro or a gyn/uro. I understand how it is to live in a small town and how those Dr. are set in there ways. You may have to travel to another town over. (i do.) to find the treatments you need, but there is a Dr. out there who does care and who will listen to you or even maybe be willing to research IC to help you. If you have a primary care Dr I would talk to him/her to see if they can help you while your searching for a new uro. or if they would be willing to give you the elimron or any of the other Rx's you may need until you find another uro.
My primary care Dr offered to treat my IC but since I'm not the avg. run in the mill icer I Delcine his offer, but its nice to know if i need him to care for me while my uro is out of the office or the office is closed for what ever reason that he is willing to help.

Please keep us updated on how you are.
Rhonda

[nabroeker]

Katrina,
Thank you so much for taking time to find and list all of those treatments and options. I have started researching many of them. You dont know what a god send this site has been and finding all of you girls who are out there to help and give support. My family and friends are great at making me feel better and saying the right things, but no one understands unless you deal with this pain every day. What a great idea to start a new thread for teachers Katrina, I will have to do that in the near future. You have been a tremendous help and are full of advice and information! :angel: Thank you SOOOO very much and I will keep you all updated!

[Katrina]

Your very welcome nab, anytime!


the nurse that taught me taught me to do it by touch and feel instead of sight....which worked and considering how it takes a while to get the perfect size for you it may be a very good thing since at least for me I had a very hard time getting it to stay in at first...sometimes still do.

Good advise Rhonda!

[nabroeker]

Prinny Joy,
I currently work with an autistic second grader who is in the classroom all day, but will be teaching first grade starting in August. I recently graduated in December, and got the job as a full time para for this second grader. It is very stressful, but learning alot. I can pretty much schedule my breaks as of now, but have good friends in the building to cover while I run off for the restroom. Thanks for your support and care!

[Prinny Joy]

Self treatments SHOULD be taught and should be taught so people don't hurt themsellves. DIxie I sure wish I could teach my husband who has offered to learn. But I feel some things I don't want him to know. Just my own pride maybe but I like to keep a couple of things private. Dr.'s should take the time to explain and I sure wish all of them did. Maybe I wouldn't have to keep looking ofr the right uro and be in the situation I am in. My advice to those who haven't been taught is to make sure you are taught. That is the best advice I can give.

[suezan]

Hi,
I'm new to the board.
I just had my first DMSO Treatment Friday..
The instillation was painful for me, but I got through it.
My uro did numb my urethra first although it didn't do much good for me.
After I felt like I needed to void right away..
Went to the bathroom at the doctors office as soon as I was dressed.
My urethra was already swollen and I couldn't void.
It takes about an hour to get back home..
The car trip was really hard, but I made it..
(I don't want to do it again and drive)..
When I got home, I still could not void and started to have spasms in my urethra, pressure, pain in my back and sharp pain and ache in my bladder.
It took about 20 min or more of sitting on the toilet before I was able to get the medicine out..
and BURNING started right away..
For about 2 hours, I could not get 3 steps away from the bathroom.. and would only empty 3 drips at a time..
in extream pain..
I called my uro right away and he told me to take warm baths and anti inflammatory med.. Plus Pyridium to help the spasms..
PRAISE GOD that I had some at home!
I had a tough go over the weekend..
and a member referred me here to this board for info and support!
A BIG THANX TO HER!!!!
I go for my second treatment on Wed.
I did ask my uro about rescue installations and he said that DMSO was the only one he uses and that he heard about..
I'm going to print info to take with me for my next apt..
I feel like if I don't continue or try this first, anything I suggest will be shot down..
I too live in a small town and my uro travels here and to another town.. to his patients..
We are lucky to have him..
I haven't had any odor from this treatment..
but I am having nausea, headache, and just the flare symptoms.. along with urgency urges..
and I mean URGES!
I'm so glad to have been sent here..
I'm looking forward to getting to know more about IC and meeting all of you.

[Dixiefireball]

Yes heparin rescue treatments are a lot safer on our bladders and also much easier. The first dmso cocktail i had I thought it was going to kill me. I was double over in pain. However I didn't have any swelling like you did. sounds to me you may have had a very bad latex reaction.
Even if you are able to get him to get the heparin rescue treatments in for you and his other IC patients this is something you need to ask him about. Even if you don't have a latex reaction any where else on your body you could have one there. (i do)
then again it could had been something that was mixed in the dmso treatment. What ever it was a reaction to something that needs to be looked into. It could had even been the stuff they cleaned you with before the treatment. Please have them to be ex. careful in your next treatments to try to figure out what this reacting came from.
heparin rescue treatments was a God sent to me.
mine is a simple mixer of heparin, marcaine, and sterial water.

P.S that happen to me one time after a surgery. they had put toral in my IV before I woke up. Not looking to see that I couldn't take anything like that. after my surgery they knew I couldn't pee but still let me come home. I almost had to go back to the E.R. , but luckly i was able to sit in warm water and the swelling went down enough for me to get a cath in to drain my bladder.

Sending you hugs and prayers
Rhonda

[Katrina]

:welcome: to the ICN Suezan!!
http://www.keysurvey.com/survey/98271/aa4e/ at this link you can put in your experiences with DMSO...hopefully we can get doctors to realize that it has been a very bad experience for a lot of people.
I think your doctors advise on what to do was pretty good...some of your reaction is from the stress of the pain. heat alternating with cold on your pelvic musscles along with that bath (which you may to have with just water and baking soda) should help!!
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

[suezan]

Thank you so much for the info, Katrina..
I'm going to read these post right away..
and I sure will pass on my experiences with my DMSO treatment that will help others.. That is for sure..
Dixie,
:bonk: I do have a latex reaction! I didn't even think to tell my uro about it.. cause, uh umm,
it's
Just another one of those things that people look at you in disbelief about..
I'm going to make sure for my next treatment he makes notes on what is done and avoid those things we can so it might not happen again..
Guess I'll find out..
I wanted to ask, when it comes to having a cath or
for self cath, how do you avoid causing your urethra to rebel if that's what this was from

[Dixiefireball]

ask for the non latex cath's. more then ever for some reason more patients are having latex reaction this is very common. This isn't just in IC patients either. Most Dr offices is switching over to everything non latex because of so many patients having this reaction, but if you don't tell them about the reaction there more then likely will use a latex cath. one way of telling is most of the non latex cath's are clear. when the latex one are more rubbery most of them are red in color, but can come in other colors.
clear ones are the best bet, but still its a serious allergy all your Dr's need to know about.

[Dixiefireball]

Oh sorry I forgot to add this.

Please make sure you tell any Dr. of any and all allergies you have even if its to silk tape tell them.
I have a long list of allergies i can't even take medicine with dyes in them so that stops most of the anti spasm medicines, but if you take something your body doesn't like it could become deadly! Tell them Everything please.

[LL215]

I had rec'd once a week for three weeks the DMSO rx at my uro' office..I held the last rx for 30min. as usual, but when I urinated I thought I was going to die!! never had complete pelvic pain and "severe" burning that knocked me down to the floor!! my husband came home from work after I managed to call him,,we went to the ER and my uro met us there. I could not even stand because the pain was so unbearable. I was admitted and given high flow IV fluid, lots of IV pain meds and drank "gallons" of water to flush out the damage.My diagnosis was "chemical cystitis post DMSO instillations with the magnitude of a second degree burn" obviously I recovered, but the 3 days I was in the hospital I actually passed tiny pieces of my bladder lining tissue in my urine!!! GROSS!!! my doc wanted to also do Lidocaine instills and I would not let anyone near my pelvis!!...Not typing this to frighten everyone..just to let you know this can be very bad for your bladder...Lori

[hoping4acure]

I agree with you Lori! DMSO did damage my bladder also. I remember peeing out those SAME white pieces of bladder lining! YUK!

[Katrina]

I peed those white things while on DMSO too....this is definatly a treatment to know all you can about first....and have a doctor that knows plenty too.

[curlycue]

Hi Ladies,
DMSO was awfull, for me it just about killed me, but I did it cuz there was nothing else out there to help me, at the time.

I do the rescue treatment and that has improved my life 50% and at first I hated the thought of putting a cath in my bladder but the dr showed my husband how to do it and then one day I was in so much pain that I did and started self cathing myself and it was the greatest thing I ever did for myself.

[Dixiefireball]

I agree I believe DMSO causes a lot of damage to people's bladders. there is a few here that dmso has worked wonders for, but I'm one that says keep that stuff away from me at all cost.

However the rescue treatments are totally diff. and have worked wonders for me they have been such a blessing, but still with rescue treatments they sometimes need ajustment to get the mixer right for each person.

However if i was lori and suffered threw this with the dmso I would be scared to try the rescue treatments my self. to be honest.
its a God sent to some but a nightmare to others sadly

[curlycue]

I agree.

[rosesitty]

I would agree that the heparin treatments are helpful, with the success rate being different for everyone, but I'd give everyone the heads up that every time a catheter is put in, it can lead to a UTI. I haven't had an infection in 20+ years, after five instills in a week and a half, I got a raging one from heck. I'm afraid to start them again. I'd had 30+ instills over a two and a half year period with no problem, but got one with so many instills consecutively. Interestingly enough, my internist cousin believes the ecoli UTI was from the docs office because it was resistant to Cipro. That also gave me a scare, no matter how sterile they try to make it, bacteria are sneaky! Just thought I'd share.
Stephanie