Saw my Dr.Today

[CathyKi]

He said my liver counts were through the roof and my sed rate was 90 and normal is 30. He wants me to see a gastrologist for the liver. I am not taking anything that would cause my live to be high, My diet is as bland as you can get. I don't understand and I am worried. He said the microscopic blood they kept finding in my urine for the past ten years was probably the beginnings of IC. You can see my med and I dont drink anything but water and milk. I don't know what to do, whats next?
Cathy

[Berkshire Road]

First of all, don't panic, but do make the appointment promptly. When I had a high liver function reading, the cause was overuse of advil and tylenol. Once I stopped taking them, my levels went back down to normal. There are a large number of things that can cause you to get a reading like that, and some of them are simple, like my case, and some can be serious. So you absolutely need to check this out with a specialist and probably get some further testing. The doctor is the only one who can tell you what's happening, so get yourself there as soon as you can. The sooner you have your answer, the sooner you can either stop worrying altogether, or start any treatments that might be needed. Good luck, keep us posted about what happens, ok?

[SandyRN]

Carolyn gave you a great answer. The only thing I would add is that an elevated sed rate usually means there is inflammation somewhere in the body. It could be in your bladder since you have IC. I wouldn't panic, just be sure to go through with the followup testing. I've had the same thing happen to me, several times and it was always from advil/tylenol usage. I have fibromyalgia and at the time that was all that I had to take for pain and I used it too much.

Let us know what you find out.

Sandy

[Annie2]

You've been given great advice. Don't panic, but do follow your doctor's advice and see the specialist asap. I did notice you are on Elmiron. Elmiron can have an effect on your liver, at least in some people. Be sure to tell your doctors that you are taking it. If that is the culprit, sometimes going off for awhile or just adjusting the dosage will help matters.

[Smokey]

try not to panic, I had a high reading with my liver, I had a cat scan and it showed that I had a fatty liver.

[CathyKi]

Thank you so much everyone. I will try not to worry. Anne, I looked Elmiron up and it does list liver dysfunction as a serious side effect. It takes 144 hours for Elmiron to leave your system. Should I just stop taking it until Monday. None of my doctors work on Friday and we are approaching a weekend.

[GriffsMommy]

I hope everything is okay. As everyone else said try not to worry to much until you get to the gastro. I personally stopped Elmiron on my own because I knew it wasn't working and didn't consult with my dr first but you should probably speak with your uro before stopping any meds.

[CathyKi]

I am just going to stop taking the elmiron. The doctor didn't get back to me and I am going to my general doc on wednesday. By then I will have been off the elmiron almost long enough for it to leave my system. Then when they test it again it should be down if it was the elmiron. Otherwise I will have to get tested for a bunch of other stuff like hepatitis which is crazy. I'll bet it is the elmiron because I have reacted to other drugs like arava in the past with an elevated liver count. I just don't think doctors keep up on all these drugs and their side effects. I think it's really up to us to figure this stuff out which is kind of frightening but we are just about all we have except occasionally we find a good urologist.

[CathyKi]

I went 144 hours and had my blood tested again. It was down, from 218 to 30. You were right Annie. It was the Elmiron. What do I do? It helped with the pain. Now its just going to get worse. I have an appointment with my Uro on Wed. I will tell him about the Elmiron that he prescribed but what can be done to help me now that I can't take it.

[Sally939]

Do you take any other meds? There are other things that you can take that will help with the pain. I am sure your doctor will go over them. You could try a drug like elavil or an antahistmine. Have you tried the diet? The diet helps me.

[Annie2]

I am so sorry it did turn out to be the Elmiron. UGH!!! I know exactly how you feel. I had great luck with Elmiron and was on it for 4 1/2 years. I had to stop it in August, not because of my liver---liver panel was perfectly normal, but because it was causing increased rectal bleeding and I have ulcerative colitis so the Elmiron just exacerbates any flares and bleeding I have. I, too, am working through what to do now. Because I have both IC and UC, I developed severe PFD. Physical therapy helped me tremendously. My PFD is under control because of it and my IC and UC have both been helped, too. For now, I am getting by with PT and Elavil (used for both IC and UC) and my meds I take for my colitis.

There are lots of other choices besides Elmiron, however. Have you tried instills? Or how about some of the alternative choices like Cystoprotek? Sounds like it's time for you, too, to go back and read about all the other meds and treatments available then discuss it with your doctor and come up with a new treatment plan. I certainly hope you will soon find something else that works for you!

[sickofmybladder]

I'm so sorry you had to discontinue the Elmiron - but I agree that instillations are probably your next step - I do them and they have helped. It is possible that your uro might could include the Elmiron in the instillations and it wouldn't cause the same liver effects for you - I would check with your doctor.

[SandyRN]

I'm sorry about the Elmiron. I had problems taking it too and didn't take it long enough to find out if it caused any liver problems because my hair was falling out in noticeable clumps.

I agree 100% about the instills. You can do home instills with elmiron mixed with lidocaine and sodium bicarb. OR you can do heparin, lidocaine and sodium bicarb and the heparin acts much like Elmiron does in aiding to rebuild the bladder lining. I only use mine now for rescue instills when I'm in a flare but I really should start doing them 3-4x a week again because my bladder has been in an uproar lately.

Let us know how things turn out.

Sandy

[CharlotteY]

Just to clarify a couple of other posts written above... Tylenol is excreted through the liver, but ibuprofin (Advil, Motrin) is excreted through the kidney. In fact, I've seen several patients who were on dialysis due to excessive ibuprofin intake over a number of years. My husband has also told me of a number of his patients who have committed suicide from purposeful, excessive Tylenol intake leading to liver failure. I'm so glad that your liver function tests have improved since ending the Elmiron. I hope you find relief from the instillations. They helped me quite a bit.

[CathyKi]

I told the nurse practitioner about the Elmiron and how it effected my liver and she said that my reaction was extremely rare!?!? She said I could have an instill on Friday. They will try it with the lidocane half dose first and maybe elmiron next time. I wonder if they know what they are doing to be honest with you. She kept telling me to go to a teaching hospital and get on some new drug studies, gee I really want to be a guinne pig. I started crying, and I told myself I wouldn't do that. I even made her cry. Will I be able to drive myself home after the instill on Friday and if I get relief how long does it last? She said they would be willing to show me how to do them. She keeps telling me I am unusual, how this all came on suddenly but from what I have read here it seems pretty typical.

[Annie2]

I know this is an unexpected problem, but hang on. Many people get tremendous relief from instills. You should be fine with the instills and should be able to drive yourself home afterwards. It's great they are offering to teach you how to do this yourself at home. If instills help you, it will be so much easier to do them yourself at home and not have to go into the office every time.

I don't think sudden onset is all that rare. Yes, many ICers have a history of bladder symptoms that increase gradually for years. However, I know there have also been many of us on the boards here who had no history of bladder problems and experienced sudden onset. It was sudden for me. I was fine one day and in agony the next. Not only do I know the exact date it began for me, but I also know the exact time of day my symptoms began.

Liver function abnormalities are not exactly common, but common enough that everyone taking Elmiron is advised to have blood work done (liver panel) on a regular basis to check to make sure the liver is handling it ok.

Good luck on Friday with your instill. I hope this treatment will bring you great relief!

[CathyKi]

You have all held my hand through this time and I appreciate it so much. Tomorrow, I will hold you in my thoughts, like holding your hands. My first instill, its like taking another step down this spiral, how did it come to this. Just four months ago I was another person. I just pray it doesn't make this any worse.

[GriffsMommy]

Intills really aren't that bad. Since they are using lidocaine it should be very soothing when they put it in your bladder and you shouldn't have any problems driving home. I would suggest if you are worried to ask if they can use lidocaine in the cath or put it in your urethra before hand to help numb it. They may already do this but not every dr's office dose. Let us know how it goes.

[CathyKi]

They only did 1/2 the amount they usually do. The install didn't seem like hardly anything. It gave some relief but it is definitely still there. I don't know how long it lasts but they said to call them right after Christmas.

[curlycue]

Hi ladies....................... Does anyone know what kind of meds raise liver blood work, or damge the liver? I take 2 tylenol pm at night, have been for about 4 yrs, you guys think that will come back to bite me after a couple of more yrs. Thanks

[CathyKi]

I am progressively getting worse since I had to stop the Elmiron because of my liver. I have to go with extreme urgency every five minutes. It's worse that the normal frequency I feel all of the time. My urine is burning and my lower right side hurts. Could I have gotten an infection from the instill or could it be causing this?

[Berkshire Road]

Any time you suspect an infection, you should go and get checked for one. Just go pee in a cup somewhere, so you can rule out that possibility. Infection from an in-office instillation is fairly rare, but it can happen. A lot of other things can cause pain in that area also --- ovarian cyst, appendix -- you definitely need to be seen!

I see you're taking cystoprotek, and I guess that's not helping. Hmmm. Have you tried CystaQ or freeze-dried aloe vera capsules? They are both available in the ICN Shop. They both are supposed to help coat the bladder, or help the bladder heal its own lining, I don't know... but a lot of people have had success with them.

Have you asked your Dr. about pain medication? Also, have you had your regular dr. and your IC dr. get on the phone with each other and discuss this situation? Maybe they might think it's worth the risk if they understood the benefit. Or put you on, maybe one month on and one month off. I don't know, I'm not a dr., I'm just throwing ideas out here...

Well, it's a bad time of year to be having a problem like this, and so my thoughts will be with you even more than usual. Please keep seeking good medical care, and keep us posted on what's going on!