steriods mixed with instills

[bunnykinb]

Has anyone had any steriod mixed in with their instills? I am having solucortef with DMSO. After my first instill, now I thought of steriods and weight gain. I am afraid that the steriods in the bladder will make me gain weight.

Anyone had that problem?

[ICNDonna]

I haven't had the two mixed, but I have had steroids instilled and absolutely no weight gain with them.

Donna

[bunnykinb]

Donna,

How long were you doing the steriod instills and how many mg?

Thanks

[Romans8:28]

I have been doing instills with steriods weekly for over a year.., now every 5 days. I did not have any weight gain with it. It does make a great difference in my pain level!

Shelly

[bunnykinb]

Did the steriod instills weaken your immune system?

[Romans8:28]

The side effects you are concerned about are really for people taking it internally not in instills. Very little if any actually goes into your blood stream in instills. My immune system is as hyper as ever, usually don't catch colds even when the kids have them.

I do have chronic infection in the urinary system, had it before I started the instills, still have it, can't really tell how much it effects that but I can tell you without it MY PAIN LEVEL IS INTENSE!

Shelly

[bunnykinb]

I had typed in the search on the internet for bladder steriod instills and found 1 under Remedy.com or something like that. A person indicated they went from 106 to 156 in 6 weeks from steriod instills. That is why I posted this to find out what outcomes have resulted.

Whew, thank goodness about not gaining the weight. I need to boost my immune system because everytime my son gets sick, so do I.

[bunnykinb]

For those people doing frequent instills, did your urethral opening stretch out to where you are leaking?

[ICNDonna]

Sorry to be so very slow in responding to this. I had SoluCortef instillations for at least six years without substantial weight gain. And I have had literally hundreds of instillations without it creating a leaking problem.

When I had a problem with stress incontinence it was for a totally different cause and it was surgically corrected.

Donna

[bunnykinb]

That is good to know that there wasn't any stretching. What concerns me now is that before you had mentioned that you didn't have any weight gain with solucortef but now you said that you didn't have substantial weight gain. How much is substantial?

[Romans8:28]

Just got back in town.
I do not have a problem with stretching/leaking. I do a prolapsed bladder and have long before I did instills. I only find I get some leaking after an instill so have to rest afterward. The reason for me seems to be the numbing relaxes everything. All the leaking problems go away once I urinate out the instill meds.

I did not gain weight on the steriod instills. I am on my second year of 1 or more times a week, though have rescently started gaining since going on the Elavil. But that is a self-dicipline issue since I crave and give into sweets!
If someone gained a lot of weight on steriod instills, I would have to believe it mayb because their bladder felt better they were able to eat more and maybe even get away with somethings they could have before...,

Hope that helps!
Shelly

[bunnykinb]

Yes, that helps. I am only 108 but it can vary up to 113which it too much weight for me at only 5' 2". I never over eat, but I do have a major sweet tooth. I have only been around 130 for 2 pregnancies and when I first graduated high school and started working at a fast food restaurant where I could eat for 50% off and boy did I stock up calories. So, I have a big concern about weight.

Thanks for the information.

[bunnykinb]

Do you know what percentage of DMSO and what percentage of steriod was used?

Thanks

[bunnykinb]

Someone mentioned on a PM to me that steriods or whatever else instills can leak into the bloodstream. What amount does? I am very tired after my DMSO instills and am still worried about weight gain with the steriods mixed in the instill.

thanks.

[Romans8:28]

First of all ANYTHING mixed with DMSO has the POTENTIAL to go into the blood stream because DMSO transports not only itself but other medications deeply into the tissue with it. So this if you have concerns about what they are mixing with your DMSO I would definately talk to your doctor and let him know!

My doctor told me there is concern that other instill meds. can go into the blood stream but so far the research on that has not shown it to be significant. It seems those with hunner's ulcers can be at a great risk for this but again even then regular rescues have not been shown to go into the bood stream significantlly. I have been doing rescues with the solu cortef 2 years this month, every week or more. They just did lots of blood work and everything was normal!
Hope that helps!
Shelly

[bunnykinb]

I did ask my uro who is the chief of urology at the University of Southern California. He told me that the steriod with the DMSO would not cause weight gain. It is like putting a topical ointment and does not go through the bloodstream. But, I wanted to see how true that was from people on this website.

thanks.

[bunnykinb]

Shelly,

What instill solution was mixed with the steroid? I looked up DMSO and read an article that DMSO should only be held for 5 or 10 minutes at 50cc of 50% DMSO. Longer periods are unnecessary since DMSO rapidly absorbs into the bloodstream. Why would my uro say hold it from 5-15 minutes and why would he say that the steroid would not make me gain weight?

I am confused.

[Romans8:28]

Every doctor is different. My instills are rescue instills and do not contain DMSO. I do however use MSM which is like DSMO. It has all the benefits without the side effects and does not take other medications with it. Unfortunately this is not FDA approved because MSM was so cheap to make they could not get sponsership for all the testing. I still do the MSM and rescues with lidocaine, sensorcaine, solu cortef and gentamicin separately.
The MSM I do with my doctor's knowledge but on my own!

I would encouraged you to do a google search on both MSM & DMSO on this site. There have been many discussions.
You can also try going to jacoblab.com & www.DMSO-MSM.com
Dr. Jacob's the one who found DMSO has much research and information there that could help you. He also wrote "The MSM Definative Guide"", which details more about both products. This will help you to make your own decision. Many doctors do use DMSO with other meds. but it can penetrate with the DMSO, I just thinks it's rare.

Look up one thread marked DMSO+lidocaine=trouble, I think and read the different posts. I think you will find it interesting!
Hope that helps you!
Shelly

[legolas]

Hi my name is Nathalie and I have been newly diagnosed with IC and I was on Heparin but that didn't work. So, now I am on Heparin, Solucortef and marcaine. I have notice some weight gain, so I have been super careful of the food I have been eating by reducing my starches. If you have any comments you can reach me at tesnath@msn.com

[bunnykinb]

Shelly,

From that website you gave, MSM and DMSO both leak through the bladder into the bloodstream. Do you use the steroid mixed into with the MSM or do you do those instills separately?

Thanks,
bunnykinb

Today, I feel bloated from the waist down. I still wonder why the urologist said I wouldn't gain weight. I have noticed a couple of pounds greater on the scale but that may be from the bear claws I was eating every day last week. I will see what the uro says again after I show him the article on DMSO.

[Romans8:28]

Yes both MSM and DMSo can get into your blood stream but the difference is DMSO transport other medications etc. with it, MSM does not!

I still do my MSM and steriod treatments separately, other then I like to add 5 cc of MSM at the end of the treatment, which I drag out through the urethral area. This helps with soreness. I also use MSM gel on my catheter.
I have MSM gel compounded with lidocaine too. Again for on the catheter or externally. I can not tolerate the preservatives in regular lidocaine.

Shelly

[bunnykinb]

I read that normally DMSO is held only for 5-10 minutes; the doctor had said to try and hold for 20. Do you know after how many minutes does it take for DMSO to leak into the bloodstream? I may ask the urologist not to put the steroid in then. Today, I feel very bloated and it is not due to my period since I skipped it this week.

[Romans8:28]

No I really don't but on the jacobslab website there is also a 800 #, Dr. Jacob's son actually still sees patients now. If you have questions you can call and they wil either call Dr. Jacob's himself or ask his son. They know more about DMSO then anyone else and have been very helpful to me. I would encourage you to call.
I will also tell you thier MSM gel is such a life saver for me! They also make two other gels, one is a mix of DMSO & MSM, and one is just DMSO.
(The MSM gel helps in many of those difficult personal areas! a:wink:)
Shelly

[bunnykinb]

Shelly,

Is the MSM gel available only by prescription? Does it help for urethral burning?

[bunnykinb]

Oh, I tried emailing Jacobs Labs, but the email bounced back.

[Romans8:28]

No script needed! You can purchase it directly from jacoblab! My health food store here carries if for me. They give me the bulk price since I buys so much and they keep it stocked in the store it helps both of us! They sell ALOT of it! Call them, you get a quicker response!!

And yes is is wonderful for urethral burning..., when that is really bad the compounding pharmacy uses my MSM gel, mixes lidocaine powder with just a little of my silverbiotics then adds it back to the gel. (It doesn't dissolve in the gel alone!). AHHH that helps even more.., like I said even for the physical relationgship etc.!

[bunnykinb]

I am having another fat day feeling and I know it isn't just in my mind because my pants are a bit tighter but the scale is the same.

I left a message with the urologist's secretary if she can find out from another urologist my question of DMSO used with steroids and weight gaining effects. I would rather leave the steroid out this time and wait to ask the doctor again.

DMSO by itself or with sodium bicarbonate doesn't have any weight gaining side effects right?

As for the MSM gel, I was thinking about getting lidocaine, but if the MSM does better, then that is my better bet.

[Romans8:28]

I will tell you many of us have the IC belly. I know I often feel like my tummy get swollen. At least in the rescue instill I think the steriod seems to help the swelling feeling!
You doctor should do what you are more comfortable with!

MSM & lidocaine are both good just work differently!
MSM helps to sooth and keep the inflammation down. Lidocaine numbs immediately!

SHelly

[bunnykinb]

Well, I went to get my instill again but this time a different nurse did it. I asked for lidocaine and the cath insertion and removal was better. But, soon after the DMSO was instilled, while I laid down for a little bit, I could feel the burning again. It hurt to pee as well. So, maybe the DMSO is causing the burning.

Does MSM gel numb as well later?

[Romans8:28]

DMSO most likely is causing the burning it is known to do that..., MSM does not burn!

The MSM gel helps with inflammation etc. & is soothing but doesn't actually numb things. That is why I buy the MSM gel then have the compounding pharmacy add lidocaine to it. This gives me the most wonderful gel of anything I've found! The lidocaine has to be dissolved in something first, then added. I use Silverbiotics.

Shelly

[bunnykinb]

Hey, I wanted to respond yesterday, but the website was having problems. Where did you find the compounding pharmacy? Did you take the MSM gel, get a prescription for the lidocaine and what about the Silverbiotics? You made it sound so simple, but I never knew about compounding pharmacies etc. How do you know that the lidocaine has to be dissolved first? Does the compounding pharmacy rebottle it for you? Your assistance is greatly appreciated.

I had a different nurse last Thursday and when asked, she did put lidocaine prior to cathing. This time I felt the gel unlike the first nurse. However, soon after the DMSO was inserted, I started with the burning again. I still have the burning sensation as of today. I called the uro's office to ask about getting lidocaine prescription, but then also needed to find out from you.

[bunnykinb]

Oh, I called the uro's office to get a prescription for lidocaine and he said it really wouldn't do any good since it doesn't numb for long.

How soothing is it to use MSM gel alone?

[Romans8:28]

you can find compounding pharmacies on the web. There are many. I have to get many of my meds. compounded without the preservatives. We learned the lidocaine had to be dissolved first by trial and error. My doctor wrote the script for her to add the lidocaine etc. to my MSM gel.., the first time she did it, it came out crystally (new word). Then it would burn not good so we looked it up and it is water soluable. I basically by the bottle of MSM, take my silverbiotics and it is mix it in a little medicine bottle. The pharmacist knows the percentage of lidocaine to make it a 2% lidocaine gel.
Then the lidocaine is added the MSM gel with a glass rod, and shaken well!

Look in your phone book for a local compounding pharmacy. most towns have them and we live in a really small town. ours just moved here last year.
If not look in towns close to you, because the cost of shipping might make it out of reach.

If you do not have a methlyparaben reaction like I do. you may try the lidocaine gel like they use at the doctors office and then just use the straight MSM gel along with it. (Ask for a script for 2% lidocaine gel.) it might save you some $$$ especially if you have insurance.
I can not use regular lidocaine since I react to methlyparaben.

I hope you are feeling better soon!

Shelly

[HGC]

I have DMSO and solumedrol (a steroid) instilled in my bladder every 3 weeks for the past 14 years and it does not cause weight gain. It is not the same as taking an oral steroid. The next time you have DMSO instilled ask the nurse to instill lidocaine into your bladder and leave it there for about 15 minutes - this really helps with the burning. The nurse can drain the lidocaine prior to instilling the DMSO. I hope this helps.

[bunnykinb]

Oh, that is a good suggestion for the lidocaine gel. The nurse and doctor had said that lidocaine really doesn't help much though. I should insist on trying it anyways, right?

[HGC]

Have them use liquid lidocaine not the gel - you can't instill the gel directly in your bladder. They need to instill the lidocaine through the catheter into your bladder (the same way they do the DMSO) and if they leave it in for about 15 minutes it will numb your bladder so the burning won't be as bad.

[bunnykinb]

OH, I thought I was already getting xylocaine in with the instill. I'll have to ask again.

Thanks.

[HGC]

You might be getting xylocaine mixed with your instill but it is not numbing your bladder prior to the DMSO. Try having them put the lidocaine in by itself for 15 minutes and see if that helps. I hope it does.

[bunnykinb]

I don't know if DMSO can cause burning for days. I had my 4th DMSO on Thursday. Here it is Wednesday, and I still have burning. The pyridium and urelle aren't helping.

[ICNDonna]

When I was having DMSO instillations, they always put in the lidocaine first, then waited a few minutes before putting in the DMSO. It definitely helped. Just once the nurse mixed the lidocaine with the DMSO and they might as well have dumped the lidocaine down the drain --- it didn't help at all.

Donna

[bunnykinb]

I am still feeling awful from the burning. My uro won't prescribe lidocaine gel since he says it won't help. I just feel like curling up in a ball and die. But, that is not an option since I have my kids, but doctors don't seem to truly understand.

[ICNDonna]

I would flat out refuse to have DMSO instilled without the lidocaine first. If your current doctor is not willing to give lidocaine a try for you, you might think about seeing a different urologist for a second opinion.

Warm hugs,
Donna

[HGC]

If you are still burning a week later you might have an infection. You should have a urine culture to be sure.

[bunnykinb]

I have had this happened where I am having burning for weeks without any UTI or yeast infection. Before even seeing a uro, I was having burning that lasted 3 weeks without sign of any UTI through cultures. It is the nasty IC.

Pyridium doesn't help at times or if the burning last for days, it will stop helping. I switch off between pyridium and urelle. I ordered some MSM gel since 'Romans' said it helped her. I am in desperate need of relief. My kids don't understand the mommy is not feeling well. And, this has been going on since late 2003 soon after my sigmoidscopy.

[Romans8:28]

Burning to me is one of the most insane symptoms of IC!!! I have PM you with the answers to your questions and some other suggestions as well!
(one of which is using the rescue instills instead of the DMSO.., they are so much more soothing and help my burning!!!)

I did however have a idea I THINK WE NEED TO ADD TWO MORE ICONS TO OUR EXPRESSIONS.. A FIRE HYDRANT AND A FLAME OR FIRE,,, :)!
Hang in there and hope I will be able to help you!
a:grouphug:
Shelly

[bunnykinb]

Shelley,

I have read your PM and PM you back. Thank you so much for providing the valuable information. I had another question on the PM.

I'll have to read up on what the rescue instills are. I did have in late 2004/early 2005 heparin with sodium barcarbonate, but it didn't help. I was only getting it once a month, so that might be where the problem lies; I was doing it enough and probably needed lidocaine too.

What are your rescue instills made up of?

Thanks a bunch,
Bunnykinb

And a big thanks to my IC friend who introduced me to this website while you emailed each other through Hyster sister. I am happy to find some answers and hopefully some relief on this IC.

[bunnykinb]

Shelley,

Did the MSM gel burn at all when applied to the urethra? I had some burning so I emailed Jacobs Lab. Jeff Jacob said that the burning sensation should subside with repeated use. I wanted to know your opinion on this. I was hoping for relief and instead I feel more burning. Yikes.:confused:

[Romans8:28]

As i pm you, it did not burn that I can remember. Bunny are do you have a sulfur allergy? The books said that it is not related, different type of sulfur but if it made you worse I would be cautious. I little burning at first but it has never made me flare. Did you get the pure mSM gel, not the one mixed with DMSO?

keep me posted!
Shelly

[bunnykinb]

I bought only the MSM gel without any mix of DMSO. When I called Jacobs Lab, I told them that I am allergic to sulfa and I had an allergic reaction with a sulfa antibiotic. I was told that I shouldn't have any problem since it was not a sulfa drug.

I PM you back too.

[walnut]

I used to get DMSO cocktails. They had heparin and cortizone in them. They put marcain in firt. Everything went fine the first two set of treatments. In 2005 I had one DMSO treatment and had spasming and discomfort. I have now read this is not unusual and most get discomfort with the DMSO for several treatments. My doctor stopped the treatments and I have had no treatments for almost two years for th e I.cc. My flares in this time are almost constant. At best of times I go about 15-20 times a say. Worst 40-60 or generally constant. I take oxycontin, valium , prleif and antacids. I have found this combo by trial and error but after several years it only helops a little. I think as I hav epelvic floor disfunction some of the time that muscle relaxants would help greatly. I think this could help with my bladder spasms too and the constipation which I think is exasperated by the pelvic floor spasms? Question: I have tried Flexeril for my back and it caused a flare. So I do not know what other muscle relaxants would be best to try? I should post this plart somewhere else.

My doctor insists that DMSO is no more "caustic" my word, to the bladder than a rescue instill which she does not seem to know much about. I think she is wrong? She wants to start an I.C. clinic in Pittsburgh yet seh will not see me for several months sometimes when I am in a flare and generally has no answers to any of my questions. She also refuses to do rescue instills even though the DMSO cocktail seh does is a resuce instill with DMSO. I think she is just trying to make more money at the great expense to the health and well being and most especially quality of life of her I,C patients. I am appalled!!


THe question here is it commen knowledge that DMSO can be more irritating to the bladder than most rescue instills , at least more most of us??

[HGC]

Everyone is different and not every treatment works for everyone. I have DMSO and solumedrol (a steroid) instilled in my bladder every 3 weeks and have been doing this for 14 years. In this time I have also had 11 hydrodistentions and according to my Dr., my bladder looks better today than it did 14 years ago so if DMSO is "caustic" I am the exception but in my opinion it is not "caustic" and it has given me back my life. I used to urinate between 70-80 times a day and now I'm down to about 20 times. To me, that's a huge improvement. While I think it's helpful to read about other people's experiences, please remember that we are all individuals and what works for one person might not work for another and vica versa.

[HGC]

Walnut - I tried to answer your PM but your box is full so when you empty it I will send my response.

[bunnykinb]

HGC,

Did you have immediate burning once the DMSO was put in? I am still having burning with each DMSO cocktail mixed with solucortef. I go in this week for my 6th one.

This will also be the 4th week of continual urethral burning. Can a nasty flare last this long or is the DMSO making things worse? I used to be able to hold the DMSO in for 15 minutes, now I can barely hold it in 5.

[HGC]

I have lidocaine liquid (not the gel that they put on your urethra) instilled in my bladder for 15 minutes prior to instilling the DMSO and this helps with the burning. Occassionally the DMSO still burns but not as badly because of the lidocaine. Remember the lidocaine gel that they put on your urethra is not going into your bladder so therefore your bladder in not numbed by it. DMSO can make you worse before it makes you better but if it does work for you it will be worth it.

[bunnykinb]

When I call the nurse tomorrow, I will ask her about having lidocaine liquid first. After the lidocaine is put in for 15 minutes, is it drained before the DMSO?

The way I feel right now, I know I couldn't even hold anything in.

[HGC]

Yes my Dr. removes the lidocaine prior to instilling the DMSO. I hope this helps you. There is absolutely no reason why the nurse can't instill lidocaine into your bladder first - actually you should insist on it. Remember it's your body and if it might help you then you should try it.

[bunnykinb]

I had asked for the lidocaine gel the prior two times from a different nurse since the regular nurse said she puts it on, but I don't feel or see her do it. Hmm. The nurse said lidocaine gel may burn before it numbs. No suggestion from the nurse has been given for lidocaine liquid. That is why I will call the office tomorrow.

I totally HATE my body. We went to Knott's Berry Farm yesterday and I felt horrible. I didn't go on much rides.