Had to stop

[IcyAngel23]

I had to stop because my CyA levels were at a toxic level. I have to stay off of it for two days and then lower it to 100 BID. I'm at 150mg BID right now.
My levels went from 40 the first month to 400 this month. So in addition to the extreme headaches which could be the result of my high levels I might have to get be forced to get off this drug.

[ICLori]

Oh, I'm so sorry....did the doctor know how you ended up getting to toxic blood levels? I mean, was your body not filtering out the CyA properly and it was building up, or....?

I hope that maybe the headaches will go away now, and that it will still work for you even at the lowered dose.

Blessings,
Lori
P.S. My doc doesn't even measure blood levels of CyA...I wonder why? He just looks at my kidney function....

[Bozema]

Kirsten-

I'm so sorry to hear you had to stop. I too wonder why your doc was measuring your cyclo levels - like Lori, they have been measuring kidney and liver function for me. To my knowledge, they've never measured the level of CyA in my blood.

At least I hope this helps with the headaches. Keep us posted on what happens next....

-Laurie

[Bozema]

This makes me wonder about the studies we've seen so far and the high success rates. All of us seem to not be doing as well as those in the studies. Makes me wonder....

-Laurie

[ICLori]

I know, that's exactly what I've been thinking, too, Laurie! And the same with Cytotec - only about 1 in 5 (as best as I can figure) are getting relief from Cytotec, but in the studies, over 80% did....and the three of us did not have nearly as positive an experience with the CyA as the studies said...

I have to wonder what on earth is going on???

Blessings,
Lori

[purpleviolet]

I wonder too why so many studies don't correlate with reality. I think just being in a study, even with placebo effect taken into account, skews results. U know there is a study going on to evaluate placebo,100,200,300 mgs of elmiron for 7 months and I predict the results will almost be meaningless, because the symptoms of IC with flares and periods of calm probably have a greater variation than 100mg of elmiron would. I should post under elmiron. PV

[Bozema]

Well I haven't entirely given up hope yet on cyclosporine. I'm not flare-free but I do think I'm better on it than off it. I do think however it's time to reduce my dose given the small infections I've been getting here and there (things like fingernail infections, nagging low grade sinus infections and so on).

As for elmiron, I don't know why they waste so much time studying it 100 different ways. It just doesn't seem to benefit that many people - 30% success rate is hardly something to rejoice about, let alone that it takes six months or more to be effective. I know some people do respond to it, but it doesn't seem like the majority of IC patients get much benefit and while you are sitting around waiting for it to work, you are miserable. Somehow I knew I wouldn't be one of the ones, and sure enough, I wasn't. For me, elmiron was one big waste of time and it hardly stands out as an effective treatment.

Actually the whole research process frustrates and angers me. They really don't know what causes IC and it seems like there is not enough effort being made to figure it out. Once you have some type of a cause and effect relationship, it becomes much easier to find effective treatments. Perhaps it's just me, but if this were a predominantly male disease instead of a predominantly female disease, they'd be all over it, with tons of research dollars pouring in. I still feel there is a bias among most uros toward male disorders and I think many still feel this is a hysterical women's problem. Never mind that it not only makes our lives miserable, it awfully hard on the men in our lives.

I think the problem is that most people don't even know what this disease is. I spend an awful lot of time explaining what has happened to me. If this is so darn common, why doesn't anybody know about it? I see ads regarding male prostate health and erectile dysfuntion on TV every night, and ads all the time for vesicare, so it's not like the drug companies are too squeamish to deal with a urinary tract diseases.

So I ask you, what's the problem here? This disease is destroying lives and somehow I think the research community could do a whole lot better. What's keeping this from happening? Why are we hanging our hopes on tiny trials in Finland instead of significant, major research efforts in the United States? Why are they wasting more time on a drug that has met with only limited success?

-Laurie

[IcyAngel23]

laurie- Because we have researchers like Dr. XXXXX (name removed by Jill O.) heading up most of the research on IC and manipulting it to his treatments. It seems here in the US it is all about the money and over seas seems to be for the regonition.

When my dr take blood to test my kidneys and liver they test my blood levels too. My dr talked to a few drs familiar with CYA before giving it to me to so he would know what to look for. If you only look at the kidneys by the time they show distress the damage could already be done. I know our drs are all new to this drug but ask them if they are checking your CYA levels. You might not even know they are. If not ask them to do so. It does take two weeks to get the results but it's worth it.My dr has no idea how my levels got to be so toxic. After the first test my dr kinda slacked off and only wanted tests done every two months or so. I've been having headaches for over a month now so it could've been steming from that and kept building up. I don't have bladder pain but I have headaches tremors,seizures on the left side,mouth sores and nausea.
I can't give up on this cause if I do it's like I'm giving up completely.
Who knows why some of these trials seem like they have such high rates of success but don't work for us. THe way I see it is they only tested a small number of people and we don't know the degree of IC or the age. Any drug if you look hard enough can be supported by a smaller number of patients. Maybe we are all just the extreme cases that can't be solved until they can understand IC better. We are their test subjects and that isn't always a good thing.

[ICLori]

Laurie, I absolutely believe that this disease was ignored for so long primarily for misogynistic reasons. Anything that happens mostly just to women, is not very important. It's starting to change (a little bit) but this is still a man's world, and will be so long after all of us on these boards are in heaven.

Now that drug companies see that 10 million Americans have this disease - or 1 in every 4.5 women, according to one researcher - instead of the 450,000 figure they've been quoting forever and still quoting despite recent evidence to the contrary - they are showing interest. I know of several new trials that have been announced on the boards.

The most exciting one was about HB-EGF. If you remember, when they found the APF stuff, they were able to reverse the effects of it by administering a dose of HB-EGF. Now, this was temporary, you have to keep getting the dose (like taking a pill every day, no big deal I think) but apparently it completely reversed the action of the APF - the bladder was able to repair itself completely in the studies. Now, a company has come forward and taken on the challenge of making this stuff into a drug that will work for us. I have very high hopes for that particular drug, but to be honest, I don't expect to see it available for at least another 10-15 years, which is a LONG time to wait...

I am very interested in how the cases of IC seem to be skyrocketing worldwide. They are calling it a pandemic. If the rise in cases keeps going at the same rate, I don't think it's an exaggeration to say that we can expect 100% of the people to have IC within the next 20-30 years. Even if only 100% of the women and just 10% of the men get IC, that will still be enough to get the attention IC needs - so many women will be unable to work, unable to be intimate, etc. that men will really be hurting....so at that point, IC will become important, when men can not get their needs met via the women anymore.

It's hard for me to tell if CyA is working for me or not. I have noooo idea. And I'm mucho disappointed, let me tell you.

Still haven't heard back about the lab results...I was supposed to go in and retest, which I did, and Dr. T. is gone for two weeks but some other doc (I don't know who) was supposed to call me. Mystery doc never called. Which I take to be a good sign - I am thinking mystery doc saw the lab results, they were within normal limits and decided not to call because generally docs don't call when the test results are normal.

Sigh. Feeling mad at Cylosporine-A tonight. Why isn't there something that really works, without side effects, darn it?

Blessings,
Lori

[Bozema]

Hi Kirsten-

Thanks for the reply. My doc regularly does transplant work so he is very familiar with cyclosporine. That's why he was very comfortable prescribing it to me. Perhaps he is measuring my blood levels and I just don't know it. I'll ask next time. He did assure me that if elevated creatinine levels appear, that reducing the dosage or coming off the drug would reverse the damage, so he assured me not to worry as long as I was following up with regular blood tests.

As for the research, the Finnish studies did include a lot of info about the age and relative severity of the subjects of the study. Most were far older than us and had had the disease much longer. So I don't know....

The fact that Dr. Parsons dominates the research (if that is indeed true) tells me that not enough research is being done. If you look at cancer research, there are hundreds and thousands of researchers studying the various diseases from several different angles. Same for diabetes. IC is not getting anywhere that level of scrutiny and attention for a disease that supposedly a lot of people have. The research money follows the recognition and those diseases have it and IC does not. There is a lot more money being spent on male erectile dysfunction than there is on IC and other female uro-gynecological disorders, despite the fact that they are at least as equally if not more so devastating to the patient.

-Laurie

[Bozema]

Lori-

I too am feeling frustrated tonight. I'm not particularly interested in what's coming down the line in 15-20 years from now. I'm 43 dammit and I want my life back now, not 15-20 years from now. I don't buy into the hope that someday there might be a treatment or cure - that's all swell but what about those of us who are suffering now? I am angry. If I see one more ad for erectile dysfunction or male prostate problems I swear I'll throw a rock through the TV screen. I bet they spend more research dollars on male pattern baldness than IC.

I think you and I are basically in the same place.

As for the test, If I were you, I'd call and ask for the results. Since your regular doc is not around, the most likely scenario is Dr. X has forgotten and hasn't even looked at the results. I don't trust anyone in a doctor's office to get it right. A few weeks ago I received a bill for $2,000 for a hysteroscopy I never had from a doctor I haven't seen in over 2 years. I had to convince them they had the wrong patient. Unreal.

I hope things turn out well for you. I'm still rooting for all three of us.

-Laurie

[IcyAngel23]

I'm ****** too. I want my life back. I want a life where I'm not twitching,confused or just plain tired. I'm so spacey on CYA. I run into things and I feel all ditsy. I promise I'm really not this airheadish. I know lately my posts aren't are informative as my firs ones were.So since I'm off of CYA for two days I'm going out and having a few drinks with the girls. I'm going to act like a normal 20 something.

[purpleviolet]

I guess any doctors/researchers doing a study are interested in seeing that their study was successful so its skewed that way subtly. We're all human, it just that we are the suffering ones. PV

[IcyAngel23]

Went out tonight and had my first drink in ages. Since I had to stop CYA for two days I was able to have a few drinks. I know it probably wasn't the best idea but I had the best time out with the girls. If I have to pay for it for a few days it was worth it. So today I said to hell with my IC I'm going to have fun and for a few hours my IC was on the back burner.Oh and I'm sure I'll be paying for it tomorrow. Oh well.

[ads]

IcyAngel,

If you have to stop the current immunosuppression med, what about trying a different and newer one? You might look up the University of Minnesota because they do a lot of transplants and have tried many drugs for immunosuppression for transplanted organs. The newer drugs they are trying aren't as hard on the kidneys, which they transplant. Perhaps, your doctor could call the transplant clinic at the University of Minnesota-Fairview in Minneapolis. They have even eliminated steriods in most of their newer patients because it had a lot of bad side effect.

I have been watching your posts and learning a lot from you. Thank you for sharing and I hope your situation turns around.

To better days,
ads

[IcyAngel23]

Cyclosporine is the only immunosuppressant I know off that has been in trials with results. Since I don't have a transplant those others probably wouldn't work the same way CYA does.I can start again tomoorow but I'll have to get tested every week to monitor my levels.

[IcyAngel23]

Since starting back up again I've been going thru the side effects I went thru in the begining. Even with the compazine I can't keep anything down so it's been rough. I just can't seem to get comfortable.

[Bozema]

Kristen-

I'm so sorry to hear it. Hopefully your body will readjust again soon and all this misery will stop. You do seem to have a tough time with this drug.

Hang in there girl. This too shall pass.

-Laurie

[louise]

Hi to you gals on the cyclosporine!

I have mentioned here before that my uro has found a rheumatologist to work with him IF I decide I want to give the CYA a trial. My GP even had a phone call from my uro recently asking him if he would be willing to do the follow-up
re the blood testing, etc. that is involved with taking the drug. He said he is willing, but he told me he is against my taking the drug because he has been involved with transplant patients who take it and he knows how sensitive I am to any new drug and he knows what I have lived with all these years.

NOW ALL I HAVE TO DO IS DECIDE WHETHER I WANT TO START TAKING THE DRUG!!!

I have done a fair amount of research on this drug, enough to know that it is not Tylenol and that it has some very serious and even future problems that
can occur with it.

BUT AT THE SAME TIME, I HAVE ALREADY BEEN LIVING WITH THIS PAIN FOR MORE THAN THIRTY YEARS DUE TO HAVING AN EARLY HYSTERECTOMY AND DEVELOPING MY FIRST UTI IN THE HOSPITAL. SINCE THEN MY BLADDER AND MY BONES HAVE BEEN MY WORST MEDICAL PROBLEMS. I HAVE SEVERE IC WITH VERY LOW CAPACITY AND DO NOT KNOW THE MEANING OF FLARES - I HAVE THIS EXCRUCIATING PAIN ON A CONSTANT BASIS BUT PARTICULARLY IN THE NIGHT TIME WHEN I AM SO EXHAUSTED FROM COPING WITH THE PAIN ALL DAY AND AM READY FOR SOME REST AND SLEEP. MY URO AND PAIN SPECIALIST HAVE BOTH TOLD ME THEY HAVE NOTHING MORE TO OFFER ME IN THE WAY OF TREATMENTS AND ANYWAY AS MY PAIN DOCTOR SAYS, "ANYTHING YOU TRY IN THE WAY OF A NEW AND DIFFERENT DRUG JUST MAKES YOU WORSE". AND HE IS RIGHT. SO UNLESS I AM WILLING TO GO THROUGH WHAT THOSE OF YOU WHO HAVE BEEN ON THE CYA FOR MONTHS HAVE I JUST HAVE TO LEARN TO LIVE WITH THE PAIN - OH, YEAH, THAT WAS ANOTHER DEVASTATING STATEMENT MY PAIN SPECIALIST THREW AT MY HUSBAND AND I AT LAST WEEK'S APPOINTMENT. WE WERE BOTH VERY UPSET AND IN DISBELIEF WHEN WE GOT HOME.

I WOULD APPRECIATE VERY MUCH ANY ADVICE OR SUPPORT FROM ANYONE WHO IS PRESENTLY TAKING THE CYCLOSPORINE OR IF ANYONE TRIED IT FOR A PERIOD OF TIME AND DECIDED TO STOP IT FOR WHATEVER REASON.

SINCERE THANKS!!!

LOUISE

[IcyAngel23]

Louise-

Even though I've been going through a tough time with CYA I would recommend trying it. Each one of us is different and react differently to this drug. The research is promising if you can stick with it. I would say that what I've went through hasn't been any worse than my IC. So I've gotten some freedom from taking CYA. I'm not in remission or even close to it but I am able to do more. CYA is not to be tken without eep thought but since your in the same boat as us you know what life is like everyday without it. I'm still on it but my dose has been reduced even lower than what I started on. I used ot take 150mg BID now I take 100mg BID. The reason I had so much trouble is that my brand of CYA kept changing which my dr said was fine cause I didn't hve a transplant but each brand has a different absorbtion rate. Make sure that your dr is testing your CYA blood levels every two weeks for thew first few months. My dr after the first two dropped it to every two months because my tests we so good but I ended but with a toxic CYA level. My drs thought I had a brain tumor from all the symptoms but it was just the toxic blood levels so I'm glad that was caught before I had big problems. I can't make the choice for you but you've tried everything else. The pain from the IC is worse than the side effects of CYA. Take care. I wish you well with your choice.

[ICLori]

Louise, it sounds like you have a really good idea of what the risks and possible benefits are...whatever decision you make, will be a sound one. I wish you the best of luck if you decide to try CyA, and the best of luck finding another remedy if you decide against it. I know you have suffered so much - only those of us who are in a terrible way and don't get relief from the traditional remedies, end up here...

Blessings,
Lori

[Bozema]

Louise-

As Lori stated, you understand the possible upsides and downsides of this drug as well as we do I think. Each of us has manifested this disease in a different way and each of us has reacted to cyclosporine differently. It would be tough for me to judge what is or is not a right choice for you. I think only you and your doctor can make that decision.

I given each treatment choice I've made a long the way a lot of thought and consideration. Each time, I've followed my instincts and inner voice to guide me as much as any study or anyone else's experiences. You've tried a lot of things that haven't worked and no one knows better than the rest of us how frustrating it is when yet another treatment fails.

My general rule has been to try non-invasive or less invasive treatments before invasive ones. I had a horrible reaction to the one bladder instillation I tried and I've avoided them ever since - and yet they give relief to some people - just not me. Since I believe that surgery contributed to my problem and I also look at it as a permanent change that may or may not work, I will consider it only if I become much worse than I am now and I am totally out of other options. Oral medications such as cyclosporine to me, while they carry some risks, are generally (though not always) reversible if you stop them - and you carefully monitor your reaction along the way. I have not had the experience of an oral medication making things permanently worse, though I have had side effects that have subsided in time once the drug has stopped. So that has guided my decision-making process. You have been doing this longer than I, so your criteria may be different than mine.

All you can do is look deep inside and make the best choice for you. Good luck.

-Laurie

[IcyAngel23]

Lori and Laurie

Awesome advice. We can only make choices for ourselves and it comes down to what you feel is in your best interest. I can't tell anyone to or not to try CYA because the possiblity of relief is what we hold onto everyday. The road isn't a smooth path but everything up until now hasn't been either so why would I expect any different. I have to say you two are very strong and caring women. There are som many patients who are afriad to take drugs like CYA because they fear the risks. Well I fear IC the toll it takes on a person. I'm out there everyday like you two looking for the small possibilty of remission. If I stood back and waited for others to try CYA and for it to become mainstream then I wouldn't see myself as fighting this disease head on with full force. If this doesn't work then I can move on to the next thing and set my mind at ease that I did everything I could. Maybe it's just me but I read on the boards about people not taking tests they need or treatments because they are scared of being in pain. There are different types of IC and the more I read on the board the more I understand that we are in the minority. Severe ICers wish they had mild IC but those with mild IC complain about being uncomfortable for a short period of time. I'm just venting but I really think that there are people who have IC and have no idea what's really like to have IC in the severe sense. Seeing them helped by an instill or something simple like that makes me think we don't have the same disease. Well this made me feel a bit better. With you two I know you understand and live what I go through everyday. I've just been so beaten down by this disease that I have little sympathy for those who sit back and wait for others to try out new treatments and then act like were crazy for doing so. IC may not be terminal but it's as bad as it can get without actually dying. I just think that there should be alot more support and ecouragement from the IC community for those who step up and are willing to take the risks. We may be doing this for ourselves but we are also doing it for the community as a whole. I admire those who've come beofe me and paved the way for treatments I've tried. Experiemental doesn't mean unsafe. CYA has been approved by the FDA for over 20yrs and it's now being used for more than just transplants. We are a small community and we've had alot of advancements since I was diagnosed over three years ago. Just something to think about.

[ICLori]

Hi, Kristin!

Like you, I often feel I'm on one side of the canyon, and others with more moderate cases of IC (or who find conventional treatments help them a great deal) are on the other side of the gulf.

It is hard for us to understand their reluctance to try riskier meds or procedures - for us, IC is so horrible, we can't imagine anyone not jumping at any chance to get it into remission, no matter the side effects or possible consequences of treatment. We are like people who would gnaw their own leg off, to escape a horrible trap.

It's also hard for others to understand why some of us would do nearly anything to have relief, even experimental treatments that may carry huge risks. For them, they might be uncomfortable only part of the time, instead of all the time, or perhaps they find a lot of relief with more conventional treatments. In their case, it's hard for them to imagine our desperation.

In fact I often think that I have a "window" on how severe someone's symptoms are, by what risks they are willing to take, and what horrid side effects they are willing to endure. Someone who won't take Elmiron because they worry their hair might not be so thick anymore? That's probably someone (in my mind) who is not praying to God every day to let them die in their sleep because they are so tired of the constant excruciating bladder pain.

That's part of what makes it so hard, when we go to doctors, too. I think those of us with more constant, severe symptoms, are sometimes not believed by doctors, because they see so many other IC'ers (the majority of IC'ers, I believe) who only have occasional flares, and are comfortable 90% or more of the time, even before medication. And for these less severe cases of IC, the meds are often more successful. I have been reading more about this lately on the internet, and I have run across statements from doctors, where they are saying, "if someone comes to me and is already in end-stage IC, there is not much that I am going to be able to do for them - not many treatments will be successful at that point."

Nothing about IC is ever easy, sigh - especially not when it comes to severe cases. :( And sometimes those of us with near end-stage, or end-stage IC, feel as if we have a different disease than those who have more mild or moderate stages of IC.

Blessings,
Lori
P.S. Sometimes I feel envy, too, when I read of people going into remission, and wish it could happen for me too.

[louise]

To You Gals Who Are On The Cya - Many Thanks For Your Advice, Help And Especially Your Individual Opinions.

First, I Have To Say That I Have Had Severe Debilitating Ic For More Than Thirty Years Along With A Host Of Other Medical Problems That Come With Ic And Without It. I Had My First Major Surgery At Age 15 Which I Feel May Have Had A Lot To Do With The Medical Problems I Have Had Throughout My Life. Then I Had To Have An Early Hysterectomy Which Brought On The Bladder And Bone Problems. Since My Ic Was Diagnosed, I Have Tried Every Treatment That Both My Urologist And Pain Specialist Have Put On My Plate.
As My Uro Says, My Ic Is The Worst Of All Of His Ic Patients And I Have Been Willing (unlike A Lot Of His Patients Including A Girlfriend Of Mine Who I Diagnosed With Ic And Referred To My Uro
Who Diagnosed Her Via Cysto And Hydrodistension) To Try Any
Treatment He Has Asked Me To Do Including Clorpactin And A Hydrodistension At The Same Time Which Were At The Very Least
Horrible As Far As The Pain Was Concerned. It Took Me A Good Three Months To Recover From That "treatment". Another One I Tried Involved Lidocaine And Baking Soda Treatments Nineteen Days In A Row At The Hospital, Including A Long Weekend Where The Poor Nurses Didn't Even Know What Ic Was Let Alone What To Do With Me As Far As The Instillation Was Concerned. I Wasn't Able To Take Elmiron Because I Am Allergic To Sulfa And Sulfate Drugs And Had Excruciating Pain When I Decided To Give It A Trial Because I Was Desperate For Something To Relieve My Severe Incapacitating Pain.

Due To All My Health Problems, I Have Been On The Canada Pension Plan Disability Benefits Since 1991 When I Would Definitely Rather Have Been Out Working And Contributing To Put Our Two Children Through University. But After Two Car Accidents And 12 Operations Combined With The Ic, Severe Osteoporosis, Osteoarthritis, Fibromyalgia, Hypothydroidism, Pfd, Costochondritis, Three Episodes Of C.difficile (one Requiring Ten Days In Hospital And Almost Cost Me My Life When My Heart Rate Went Into Overdrive Due To The Dehydration And My Bowels Almost Rupturing Due To The Severe Infection). This Is Just The Tip Of The Iceberg Of Numerous Medical Problems (like A Lot Of Us I Know I Am Not Alone In This Category!!) I Have Had For Years.

So Now When It Comes To Making The Decision Of Whether To Try
The Cyclosporine Or Not, It Is Not An Easy Decision For Any Of Us To Have To Make Due To The Possible Immediate Side Effects And The Possible Long Term Serious Side Effects. To Quote A Well Known Urologist In The U.s. That I Am In Contact With Periodically, "icers
Are Sensitive To Everything"!!! And On That Score, I Have To Agree With Him Whole Heartedly. For Every Ic Treatment I Have Tried I Have Endured Many Very Unpleasant Side Effects. The Visit To The Hospital For Ten Days When I Developed A Very Serious Dose Of C.difficile Was Caused By Trying A Certain Respected Doctor's Ic
Treatment Which Involved Taking Antibiotics For Many Months.
Unfortunately Unlike Some Icers Who Went This Route And Actually Went Into Remission, Instead I Develop My Third Episode Of C.difficile And Come As Close As I Ever Have In My Life To Dying.

So I Do Not Take This Decision Of Whether To Try The Cyclosporine
Lightly. And Yes Of Course I Would Hope Desperately That The Drug Would Give Me Some Relief From This Extreme Bladder, Pelvic, Low Back, Etc. Suffering I Am Now At The End Of My Rope Of Coping With.
Once I Was In Such Terrible Pain And Phoned My Uro. I Told Him I Didn't Know How I Could Live Another Possible Twenty To Thirty Years Like This. He Took Me By Surprise When He Asked Me If I Had A "plan". I Said I Could Never Do That To My Husband Or My Children (and Now I Could Add Two Adorable One-year-old Grandchildren That Our Son And Daughter Gave Us This Past Year).

So Thanks For The Help You Guys Have Given Me In My Dilemma Of Whether To Try The Cya Or Not. I Would Just Like To Say That Of Course I Want To Try It - Of Course I Hope It Will Relieve My Extreme Pain - But At The Same Time I Want To Be As Informed As I Can Be Because This Treatment Is Not Just A Simple Dmso Instillation - It Is A Very Serious Drug Used For Transplant Patients And Other Very Serious Disorders.

Sincere Thanks,

Louise

[Bozema]

Hi Everyone-

I've tried not to make too many judgements about what people choose or don't choose to do in terms of treatment. Pain is a very personal experience - I'm sure what each of us individually experiences is somewhat different. So people make their choices based on what risks they're willing to accept in relation to the experiences they've had. There are some tests and treatments I admit I'm avoiding because I can't deal with the concept of any more pain. I try to keep myself open to all of them, but I've conceded there are some things I'm not ready to do. There may come a time when I am.

That said, I do wonder about some people - people with multiple diagnoses, who have tried countless treatments to no avail, people who have claimed to have suffered for many years. I know that happens - can happen - does happen - some people are unlucky. Maybe I'll be one of them, I don't know. But I read the profiles and wonder how anyone could possibly have that many things wrong with them. It makes me wonder if they are not seeking the best medical advice they can, that their doctors are throwing darts at a dart board, are not taking them seriously, whatever. I think many aren't questioning what their doctors tell them and so they don't press the issue, question, get second opinions or think out of the box.

My father was seriously ill with lung cancer this past year and miraculously he has survived surgery and chemo at the age of 82 and for now is doing well and for now is cancer-free. This is not the case with the majority of lung cancer patients. What amazed me about his saga was the doctors who didn't believe he could still contract lung cancer 40 years after quitting smoking, who didn't think he should bother with chest x-rays because it was unlikely, and then later didn't think he should bother with treatment because he was already old. And my father, who is a very strong-willed person and who wanted to live, wouldn't stand up to these doctors - his generation - who treats doctors like gods doesn't question enough. Thanks to my sister and I and my cousin (who is a doctor) who pushed him, and my dad finally deciding to fight, my dad pressed the issue and is alive for it.

I think a lot of people are passive, accept the multiple diagnoses as gospel, accept what the doctors tell them as the absolute truth, don't go outside the box, accept it when the doctors tell them an experimental treatment is too risky and are afraid to question a doctor's authority or press an issue.

My sister is diabetic and we talked at length the other day about both of us not being good at accepting the fact that we are ill and our lives are forever changed because of it. My father is frailer than he was before cancer and is frustrated by it - so no doubt we get that quality from him. In one sense it is a character flaw and in another it is what keeps us pushing forward and fighting for answers. Not everybody has that quality and some people just get tired of the fight. I can sure understand why.

And I do know that doctors don't know everything, most don't understand IC well, and many have not kept up with the latest and so are probably more hurt than help to their patients. Many fear liability and won't try anything remotely different than the standard treatment. The truth is that it's up to us to chart our own path. And the reality is that the answer may or may not be out there and some people get tired and give up along the way.

The other truth is that NOBODY out there understands this area well - doctors, patients, researchers or the public. They don't know what it is, what causes it, whether it is several different diseases. Some still question that it even exists (we all know better). In this the one area only where I envy cancer patients - everybody can understand it and relate to it. We do not have that luxury and our resources are fewer.

So that's my rant. For now, I'm moving on with treatments the best I can, following my own path and seeing where I'll end up.

-Laurie

[Bozema]

Louise-

Good luck with whatever you choose. You have been through so much I can understand your dilemma about the risks of cyclosporine and at the same time wanting to give it a try. This goes along with what I just wrote with doctors throwing darts at a dartboard - they have been throwing things at you for so long with no understanding of what actually causes this disease and possibly have made things worse for you instead of better.

Keep us posted on what you decide to do and how it goes.

-Laurie

[Bozema]

Lori and Kristen-

Just wondering how both you are doing these days. I am doing well - been off cyclo for about a week and actually feeling pretty good.

Are you both still taking it or did you stop?

Just checking in - also note that Louise posted another thread with a question about dose.

-Laurie

[ICLori]

Hi, Laurie, I've had a really really great couple of weeks, probably (I think) because I've been taking an antibiotic I was prescribed because of dental surgery I had. I've used the last of the antibiotics now, though, so we will have to see what will happen from here.

Hope you guys are doing well. I didn't stop taking it - I never got a call about the second blood test for my kidneys so I figured all was well.

Going for another cysto/hydro on November 7th to see what shape my bladder is in, how much capacity I have now, etc.

Haven't been on the boards much lately, have been super-busy.

Blessings,
Lori

[Bozema]

Lori-

It's great to hear you are also feeling good these days. Good luck with the cysto-hydro on the 7th - keep us posted.

-Laurie

[IcyAngel23]

I stopped taking it about a week ago too. I'm feeling pretty good so far.
Glad to hear you're doing well Lori. I might go back on it but for now I'm going to stay off of it.

Kristin

[marsi4]

Hi Louise and others with severe ic,

I can understand what you are going through as I have suffered with ic for 35 years as well. In the last two years I have developed osteoarthritis and severe back pain as well. I spent almost two years being bedridden and that is when I started experiencing horrible back pain. Although, I don't think that my backpain was caused from laying in bed most of the time, but I think it's caused from osteoarthritis. I have pains and aches throughout my body. I am going to go have my back examened to know for sure what is going on. I suffer a lot like you do and like some others on this board and my heart goes out to you. What really upsets me though is that doctors keep telling us that there is nothing more they can do or offer us.

Bladder removal, is a last and final option for patients who have tried everything else with no relief, but yet most of us are refused this option. Doctors would rather let us suffer than take the risk of doing this surgery because they don'T want to bear the responsibility of doing such a surgery and not attaining a positive end result where the patient is pain free, or have to deal with post-operative complications. What about everything we have to deal with on a daily basis with this disease? Because this disease is poorly understood doctors are reluctant to take drastic measures, because the outcome is uncertain. I think a patient should be offered the choice of having surgery as a last resort, if one' s life becomes unbearabe.. I am considering bladder removal and I know that I may continue to have pain after the fact, but it's a chance I,m willing to take since nothing else has worked for me. I honestly think that it is the only chance that those of us have with severe ic to ever feel somewhat well and normal. I honestly don't think that there is anything out there that we know of that will make us better with end stage ic at the present time.

I think that supressing one's immune system will only supress and lessen the severity of symptoms for a bit at best, but it is far from a permanent solution. If you have other health issues as I do, I would not further tamper with my immune sytem and try to modify or alter it's natural function in any way. I'm just sharing my thoughts and opinion about immunosuppressant drugs. When I inquired about it with my rhumatologist he quickly told me that he would not consider this treatment for me to try and get relief. I do respect the courageous few who have tried it in desperate need, but I am not interested in trying it because I believe it would not work for me and I do not want to further impact my general health which isn't very good. I totally agree that it is a personal decision and we should have the right to try it as a last treatment prior to surgery if we chose to. I totally agree that doctors have a lot to learn about many diseases, ic being one of them. There is so little known about this disease and doctors don't have much to offer in treating it or managing it. What upsets me is that they can't help us , but at the same time deny us surgery. I think patients should have the right to choose a surgical procedure if nothing else has helped them, since it is our life and body that is in question, instead of being told "there is nothing more we can do to help you". We are the ones suffering and in need of some way to be able to preserve our life and put an end to our suffering. I'm going to insist on surgery and pray I can improve my quality of life. I will not back down unil I know I have done everything I could to feel better and sustain my life. I am deeply saddened when I read of others who are in the same boat and are desperately looking for answers. I pray we can all find a permanent solution that will make our lives more manageable and liveable.

Marsi4