One Year Later...Still In Remission!

[Trying2Cope]

Some of you might remember my post in which I detailed my search for something that would work for my IC symptoms. I used to be in so much pain I would cry myself to sleep. I took Elmiron and several other drugs, and suffered horrible side effects, including low testosterone (I'm a man, so that's not good).

My cat got sick, and while searching for her symptoms online I stumbled across an article about feline IC. The symptoms are similar to human IC. Cats are treated with a combination of glucosamine and MSM. I figured what was good for my cat should be fine for me (note: I take the supplements made for humans, not cats. DO NOT take supplements made for pets).

Within a couple of months, my IC symptoms were gone. Today, more than a year after this discovery, I remain symptom-free. Many have asked the brand/dosage of MSM and glucosamine I take. I don't believe the brand name makes any difference. I have taken different kinds, and I currently take a combination MSM/glucosamine capsule that I found at CVS drug stores which works just fine for me. Each capsule contains 500 mg of glucosamine and 500 mg of MSM, and I take 1 capsule twice a day. Make sure the supplements you take don't contain any other supplements, just glucosamine and MSM.

I can't even describe what it is like to be symptom-free after more than a year. My IC seems like a bad dream...or a nightmare...that I had a long time ago. I eat what I want and drink what I want (but still have to stay away from MSG). Urination is no longer something that I dread.

It is great to read some of the comments from others here who have also benefited from these supplements. I am glad I was able to share my experience with others, and possibly help some people, too. For those who didn't see relief after trying this, I can only pray that you will eventually find a treatment that works for you, and that you will also be pain-free one day.

If my condition changes, I'll post some more. Otherwise, I'll only be checking my PMs once in awhile and posting updates on my remission once or twice a year.

If you have a great urologist, keep them. If you don't have a good one, fire them and find a good one. Keep trying different things until you find relief. There IS life after IC. Things CAN get better!

Trying2Cope (Terry)

[sleepyangel30]

so good to hear that... i hope it last for yrs and yrs.

[tigger_gal]

how awsome, I wish hope you stay n remssion and have found your miricle med

[lili]

I read your original post and started taking MSM with glucosamine in July. While I still have to watch what I eat and drink my pain symptoms were reduced by 90%. Thank you so much for posting this information. It has made a HUGE impact on the quality of my life. I feel normal after 6 years of unbelievable pain and suffering. You have truely saved my sanity! Lili

[alina]

hello all!

I tried typing msg in the search box and nothing came up... can someone please tell me what it is and a foods list or link of what has msg in it so i know what to avoid? Thanks!!

[futurehope]

MSG is short for monosodium glutamate. Try doing ta search on that. Processed foods tend to have this in them.

[Hypnogal]

I ordered GNC glucosamine/msm 500mg (each) and I plan to start it tomorrow...or as soon as I get it. I ordered THIS because it contained no fillers or other ingredients. I was concerned about the GLUCOSamine creating insulin resistance, but I hear that's only in obese people or diabetics - so I won't worry. I also worry about excessive hair growth from the msm (not a big deal but...) has anyone experienced either of these problems? Any Diahhrea on this supplement combo?

[alina]

oh noo! where does it say about excessive hair growth?? Meaning hair growth on your face?? :(

[Hypnogal]

I'm finding a mix of information on the web, somewhere between "thicker longer hair and nails with MSM" (various sources) and some (few) message board complaints about increase in all body hair - but even those complaints are rare. Don't take my word for it - please! I just am telling you what ANYONE can read on the web - and the web is a place full of misinformation! Put in "msm" and "hair" and do your own search. Tell me what you think, I was just wondering - not making an announcement.

Relax.

[alina]

yeah I did do a search--the only reason I was panicking was because body hair is a HUGE issue for me, I am blessed with lots of it and waxing is so painful ...im still goin to try the glucosamine stuff bc my IC is even more painful!

[Hypnogal]

There's a little PCOS in my family - I don't have it, but I know what a "little" extra body hair in the wrong places can do to a person...and I didn't want to experience that. I'm going to take the glucosamine/msm and not worry about it. Not at all! Besides, if I get stronger longer nails and the better skin people talk about - shoot, that would be great. Not to mention less arthitis pain (maybe) and maybe less or no IC pain? Gotta weigh those pros vs cons here. So break out the tweezers and electrolysis if needed - I'm in. Lets keep in touch about our experiences.

[Maxeeeeene]

re. the MSM and Glucosamine--I'm going to try it. How long did it take for it to work?

[alina]

hey hypnogal- yeah we should definitely keep eachother posted --how much glucosamine are u goin to take and how many times a day?? thanks and best of luck with it!

[purpleviolet]

I take it too - glucosamine and msm by Planetary Formulas because I like the accompanying herbs but I think the main thing is getting a product you like. I feel not too bad of late but could be the normal variation. Can't drink coffee, though. I also take sialic acid. PV

[alina]

today i took three glucosamine tablets, bc thats what the directions said on the bottle...and my frequency has gone from once every three hours to once every 20 minutes.....it hasnt been like this in a while, so I dont know if I should keep goin with it or not......

[Hypnogal]

Alina, I say stick with it.

Okay - here's the link to answer your questions. These are answers by the man who MADE MSM so remember he has something to gain $ here of course, but I think he is honest, he is a REAL M.D. Still, he says he has treated 18,000 people with MSM and well, you can read the side effects.

click on or cut and paste

http://arthritis.about.com/gi/dynamic/offsite.htm?zi=1/XJ/Ya&sdn=arthritis&cdn=health&tm=77&gps=143_1010_1020_595&f=20&su=p284.8.150.ip_&tt=14&bt=1&bts=0&zu=http%3A//users.rcn.com/ereshkigal/msm.htm

OTHER websites interested in purely selling it says it CURES everything - this is not true, of anything.

OTHER websites say that it is a MILD diuretic, so if your problem is frequency - ? And also other websites say should not be taken with diuretic medications...so you decide. I don't know.

Hey Alina, let me know how you do this week. Maybe I'll wait til my bladder HURTS again or my knees HURT again. I don't want diahhrea and I don't want urinary frequency - so when I do start I will start VERY low 500ms a day and build up very slowly over months. Max dose for this stuff is 2000mgs, but that seems pretty high to me.

[mom_in_ma]

I tried the msm/glocusamine regiment....gave it a fair shot. Didn't do a think for my bladder, but it did make my fingernails grow hard as a rock!

[Hypnogal]

How much did you take? Did you get diahhrea or softening of stool (pardon my asking)? Did you get headache or nausea? Did you have any arthritis previously - did it help with that? Any excessive hair growth? Did your hair grow faster too? Did it make your skin any better - clearer or smoother?

How long did you take it?

Thanks.

[Hypnogal]

Hey, since I started the glucosamine/msm 1 pill (500mg) 3x a day I've had NO vulvdynia and my bladder is much much better - no bladder spasms, no urethral spasms. I had one flare this week from the wrong kind of Quercetin and even THAT wasn't as bad as past flares. Wow. This is working for me. I have less pain already. Incredible. How are you doing with it?

[alina]

after a few days I had to stop, because I was feeling worse :(...maybe it was the brand I was using?? Can you tell me which brand, dosage, and ingredients..maybe it was something else in the pills that was making me flare :(

thanks so much!!!!!!

[Hypnogal]

Sorry you are hurting, but remember - I follow the IC diet too - and taking these doesn't mean we get to drink OJ or anything. These are not to prevent a flare - they are to help heal the bladder - so get these, eat rice, chicken and green peas the day you take them and then you'll see if they are okay -they will be.

GNC - glucosamine/msm 500mg capsules. There is NOTHING in it but these ingredients. EVERYTHING flares me and I've been fine with these.

What were you taking?

[glassd18]

MSM/Glucosamine flared me too!!

[cprice25]

I've been taking GNC msm/glucosamine since August. It is definitely helping. I went off the MSM for one week and my frequency was good one day and bad the next. I'm going back on the combo today to settle things down again. I had noticed that with MSM/glucosamine my frequency was very consistent and gradually got better. If I was not dealing with other medical issues I'd be better by now. Most pills bother me so I had to use a combo that had no other ingredients at all.

Thanks Trying2Cope!!

[bjcov]

has anyone seen where you can just buy glucosomine. since I already have MSM 1000mg?

[formom]

I know they sell it at my CVS, but I use it with the msm in it. Try and check at a health store or a GNC if you have not already. They may have just that. Good Luck

Also, my brand has Chrondoitin in it, and alot of ones do and it does not bother me. Just wanted to let you know. Try little doses at a time to see if it agrees first, but I am sure you already know that.

[domawa]

Do you know if you can take msm/glucosamine at the same time you are taking Elmiron? I began Elmiron two weeks ago. My symptoms before that were mainly urethral burning and every once in a while some bladder pain. I had the PST and it was positive so my doctor put me on Elmiron. I also take Hydroxzine, Elavil, Prelief, and an occasional Valium.

I know elmiron is supposed to coat your bladder and I think msm/glucosamine does the same thing. I wonder if they would work well together.

Donna

[karen10]

Yes, you can take together, but since it does do the same thing, at some point, most try going off the Elmiron.


Note from ICNDonna: You should never combine over the counter medications with prescription drugs without first discussing it with your medical professional.

[bjcov]

I am gonna have the PST in a week. I have been feeling a little bit better w/ the "gotta go feeling"(my only symptom) its not as severe as it was a month ago. I'm scared the PST will send me backwards. Any advice? He did say that he would use Heparin, Lidocaine afterwards. I am currently on Elavil 50mg. He won't add Hydroxizine or elmiron til I do the test.

[formom]

I took msm/glucasomine while taking elmiron, then started cystoprotek which has glucasomine and chrondoitin in it already, so i stopped taking that supplement and just take the msm supplement with cystoprotek, and elmiron. I believe i took like 1000 mgs of it before i started the cystoprotek.

Just check with your doc first or start slowly to see if you can handle it because sometimes the dosing on the bottle is alot higher than you really need. Good luck! It helps alot of people!

[karen10]

As you know everyone is different, so not sure how you will respond to the PST. I did have more urgency that day, but took some Urelle and that took care of it for me, and I was fine after that. It's minimally invasive compared to other tests and the cath isn't in for very long at all. The solution that is used afterwards is also very soothing. I hope it goes well for you! :)

[Bea]

I am taking quercitin by itself and dont notice much of a difference.. i am scared to take msm glut.. cause I am allegic to bactrum.. which is sulfa based.. it that the same thing in msm glut

[karen10]

Bea -- someone else posted a website in this thread about MSM. Here's what it says about your question:

10. I'm allergic to sulfa drugs. Will I have a bad reaction to MSM?

No. Sulfa drugs are sulfites. MSM is a sulfur compound, but is not a sulfite.

Look in this thread for the website to read more about it. I'm allergic to sulfa drugs too. I'm planning to start MSM as soon as I can get to the store to get some!

[mom2angels97]

Does anyone know if this is good for just frequency, I don't have pain. I would like to add this. I'm currently on Vesicare and that seems to be working a little. Just wondering if I could add this as well.

Thanks, if anything, maybe it will help me with my aches and pains.
:smile tee

[formom]

I too am allergic to sulfa drugs, but I am fine with just taking the MSM supplement. I use the CVS brand, and have been for about a month now.

[bjcov]

mom

I have frequency too. I am feeling about 70% better since taking Elavil. I take 50mg. I still have the gotta go feeling, but the severity is much better. Plus, I try to stick to the diet. A month ago, the feeling was not livable, now I feel like I'm not going crazy. Just a suggestion.

[mom2angels97]

Thanks, but the elavil didn't agree with me.

[Maxeeeeene]

I'm responding to the people who have frequency no pain. That’s me. I have unbearable irritation, unbearable frequency, weird feelings in my bladder and my urethra—but never any pain. I was told by one urologist that I couldn’t have IC if I didn’t have pain. It's worst at night--when I have to get up to pee, literally, every five minutes and then after I go to sleep at least every hour--and then it requires great effort to squeeze a little pee out of me. I've yet to find a uro to help me. And meds that used to work for me--hydroxyzine and terazosin--no longer work for me. I've been on Elmiron for about five months and I don't see any change. Certainly, diet has a lot to do with it. But it’s not enough. There is absolutely nothing I have found that I can take that relieves the unbearable urges, the weird irritated feelings. Lately the feelings seem to be more concentrated around my urethra.

I’m just wondering if there is anyone else who has this constellation of symptoms.

Thanks.

Maxine

[Maxeeeeene]

I'm wondering if one reason my symptoms have gotten so much worse could have anything to do with having switched from brand to generic Wellbutrin.

Thanks.

Maxine

[bjcov]

I have no pain either, just the strange gotta go feeling. I do the diet, but I'm not even sure if that works either. I am on Elavil 50mg. I am feeling better than I did 2wks ago, but is it the meds, diet? Who knows. I thought mine was all urethral til during an internal exam, my gyn pressed the bladder and it really hurt and is very sensitive. I don't have any answers either. Which is a bummer. The only way I was ever able to feel better again in the past is by getting pregnant. And I don't want anymore kids, so here I am suffering. I am wanting Elmiron and Hydroxizine too but my gyn won't do anything until I have a PST test.

[glassd18]

Maxeeeeeene I have the discomfort that moves around to urethra etc...with mostly unbearable frequency. I do have pressure though which is considered pain!!! I take .5 or 1mg of Ativan before bedtime, and that helps a ton to relax the muscles in the pelvic area. I am also trying Valium suppositories, but I haven't started them yet. I have trouble finding meds that help me also, and almost every alternative flares me so you are not alone.

[soozans]

Did the Glucozamine work?/ I get spacey on msm..so I thinking of trying just the gluc alone ..or however you spell it!

[Maxeeeeene]

I have a uro appointment this week and I'm going to wait to see if she says anything about diet--can you believe it--not a single one has.

Does anyone else feel the IC hit them when they're lying down to relax at night? I've been taking Valium, and that seems to help with the queazy feelings in my bladder--but not enoough. I'm going to ask the uro about Ativan. This is the first I ever heard of it I wonder if I can take them both.

Lately, the weird feelings seem to have traveled more down to my urethra--in other words--it seems to be the urethra who has become my new ruler, telling me to pee every five minutes--althought the irritation in the bladder is still there. These are my feelings: constant irritation in bladder, which gets much worse at night, weird feeling in my bladder, sometimes almost as though my bladder is cold and itchy, the desperate need to pee immediately or else I'll jump out of my skin, this queasy feeling in my urethra, telling me to pee, this heaviness in my bladder, a dull kind of constant pressure, sometimes the feeling of electric shocks going through my system--and some other things I'm forgetting--but then, of course, when I try to pee I can't and if I concentrate very hard and direct what seem to be my rectal muscles to do the peeing for my useless urethra I can squeeze a few drops out. I suffer whether I'm strict about the diet or not--but of course I'm much worse if I'm off the diet.

Basically what I'm looking for is a drug to relieve me at night. I tried Urelle, which was recommended by someone here, but it doesn't do a thing for me.

[glassd18]

Hi Maxeeeeeene,

I understand how you feel about the trying to pee and can't. It is called hesitancy, and happens when we are tensed up too tight down there. Try to relax your muscles by lying on the floor or your bed and breathe deeply thinking good thoughts. Relaxation is extremely important. A warm heating pad across your lower abdomen will help relax these muscles. Make sure that you are drinking enough water during the day too. There could be other reasons that this is happening as well. Tell your uro about this because it is important for him/her to know. There are meds that can help.

Our bladders always seem to make more noise at night because we don't have any distractions to take our minds off of it. Once again a heating pad, relaxation, and some meds can help with this problem too.

Regarding Valium suppositories or Ativan. You should NOT do the two together as they are the same type of medication, and could cause you to overdose. These are anti anxiety meds that help relax the nervous system, and the muscles. Too many of these at the same time can be harmful. I use Ativan orally or Valium suppositories not both, and I'm sorry if my previous post sounded like I was taking them both together.

Lastly if you are not satisfied with the care your uro is providing you can get another opinion, but always talk to your doctor and pharmacist about the medications you are taking, and the symptoms/problems you are having.

I don't know if you have tried any of these yet, but the typical meds for IC are: Atarax (hydroxyzine), Elavil, and Elmiron. Most doctors prescribe these first as a first line of defense against IC symptoms.

The other thing that was suggested to me, and I do on and off (I should be doing it all the time) is journaling what I eat, drink, how many times I P, how much I p when I p, and my symptoms. When you go to your uro you can bring this with you, and it can help them to help you.

I hope you find something that helps you soon, and please keep us posted.

[mumto3]

Hi there. I'd like to try glucosamine and MSM if they've made a difference to so many people...but what is MSM short for? I'd like to read more about it before trying it.
Thanks!

[karen10]

Methylsulfonylmethane (MSM) is a naturally occurring, organic sulfur-containing compound. :) Also check this site for CystoProtek. It has glucosamine and was developed just for bladder health, coming out of IC research. I use that product and continue to improve every few weeks. I've been on it about 3 months now. I'm almost symptom free most days. It works like Elmiron (repairing the bladder lining) and they recommend you try it for 4-6 months before determining it's not working for you!

[bjcov]

My pharmacist said that MSM is all the rage these days. She said that she knew someone who used it to brush their teeth. She said she was impressed I was using it.

[redhead43234]

I read in "Along the Healing Path" that MSM works best when coupled with buffered vitamin c (like ester c). Anyone tryed this?

(A note from ICNDonna: Neither the ICN, nor any other organization in the world, has recommended this book or other books by the same author. It is one patient’s opinion – not backed by research. We recommend, “The Interstitial Cystitis Survival Guide,” by Dr. Robert Moldwin as a more reliable option.

My apologies, but, for legal reasons, we must add this to any message posted on our boards which recommends this book.)

[futurehope]

Now, I haven't read your book and know nothing about it, but, quite inadvertantly, at one of my three doses of Glucosamine/MSM I take a 500 mg Ester-C. Now, the Vitamin-C accompanies the Glucosamine/MSM at only one of the three doses I take per day.

I'm quite pleased after 2 1/2 months with the healing my bladder has undergone, and I plan to continue my regimen (and to stay off Elmiron, if at all possible).

[jen74]

I tried taking gluosamine awhile back and it gave me terrible heartburn so I had to quit taking it. I wonder if just the MSM would help?
Jen

[futurehope]

I get heartburn very easily and have not had a problem with the CVS glucosamine/MSM which is in a tablet. I chew them (yucky) with meals as I do not like swallowing large tablets.

The GNC brand of Glucosamine/MSM, in a capsule, bothered me.

My suggestion is to try another brand.

[formom]

Hi futurehope!
Does your glucosamine have anything else in it besides the msm, like sulfate or chrondoitin? I have a CVS brand with sulfate plus msm and was wondering if you had that one? I too get heartburn but I thought it was the Elmiron or Cystoprotek but at this point who knows what the heck it could be from!LOL!
Thanks, Renee'

[futurehope]

My CVS brand contains:

Glucosamine Sulfate 500 mg
Methylsulfonylmethane (MSM) 500 mg

Other ingredients are: Cellulose, Hypromellose, Croscarmellose, Sodium, Silicon Dioxide, Magnesium Stearate, Dextrin, Dextrose, Soy Lecithin, Sodium Carboxymethylcellulose, Sodium Citrate

I chew with meals and have been fine. Though you need to know that at night I take one Nexium 1/2 hr before dinner, and a Zantac prescription before I go to bed.

[formom]

Thank you, I believe that is what I have, I am going to start to take that again and see what happens.

[redhead43234]

I bought a bottle of MSM Glucosamine at the health food store the other day and didn't see that it has chondroitin in it as well! Has anyone had any problems with chondroitin?

[formom]

Redhead, I used that for about a month and had no problems with it at all. The brand I used was Lifestyle from CVS. I may go back to that again because that was really helping, but I thought I would try the Cystoprotek for awhile to eliminate taking soo many different things but I think it gave me bad heartburn even when I did freeze them for 30 minutes first. Good luck with yours and let us know how they work for you. :)

[notmybestday]

I feel like we're onto something here -- it hasn't been universally helpful, but so many people are reporting good things about this.

[karen10]

Jill Osborne: What was your motivating factor for creating a supplement for IC?

Dr. Theoharides: I've been studying IC for years with my former colleague Dr. Grannum Sant. I was very frustrated that there were no prescription drugs that were effective for IC. Those that were available, like Elmiron, were addressing the GAG layer partially. As you know, Elmiron is supposed to replenish the GAG layer. But, it is a very small synthetic sugar, meaning that it's not natural. Because it is small, it is washed out of the bladder very quickly. Moreover, a recent paper showed that only about 10% of Elmiron is absorbed when taken by mouth and it is even less likely to make it to the bladder. So, to me, it appeared reasonable to try to use the natural components of the GAG layer instead of a small synthetic molecule.

When I brought this interest to a couple of friends, one of whom I had helped medically, they suggested that a small company be formed to bring these ideas to fruition through a nutriceutical, thus founding our company Algonot. The name was chosen because it means NO PAIN. Algos, in Greek, means pain. Thus, Algonot means “NOT PAIN.” It’s like saying analgesic.

I insisted from the beginning that this little company be as educational as possible so its website, http://www. algonot.com, tries to make articles available from me and other colleagues. It's the only company that I know in the world that states that if a person doesn't get any benefit by four months, they will return the money. So far, to my knowledge, we haven't had anyone return them except in a few cases where the bottle was damaged. I should also say that Cystoprotek can be taken with other drugs, including Elmiron.

Taken from: http://www.ic-network.com/guestlectures/theoharides1205.html

[redhead43234]

The chondroitin in my MSM/Glucosime pill caused me to flare horribly! I have since bought just a MSM/Glucosime pill, 500 mg each, and it has not caused me to flare, hopefully before to long my symtoms will be better...

[estella19]

It seems like the msm/glucosamine from cvs is the best one. Has anyone noticed an issue with constipation with this brand? Glucosamine has given issues in the past