Really ticked off

[donna01]

So, I haven't been on here in a while and you may or may not remember, I could not tolerate urso at all. I lost my hair, I was nauseous all the time, I itched like crazy and my stomach aches woke me up at night. I have been off of it over 2 years, feeling fine I might add. I have been trying to get accepted at the University of Missouri for a new treatment (with no side effects so far) that is in its 3rd clinical trial, but have to get my enzymes into 120's minimum. I am in the 160's. My Internist pushed for them to give me Ocaliva. My insurance DENIED it because they want me to see a Gastro again. Problem is, I've seen 2 now and both want this ridiculous scam of doing a liver biopsy, which I refused, with both of them and they fired me for refusal. I told them, "It is not a cure for me and therefore I am not going to let you aggravate my liver any further." In the U.S here, it is a money making scam. My insurance would rather pay 10 to 15,000 for a biopsy than cover the medicine? I am beyond mad. I don't know what to do now... Any suggestions?

[Shulsey]

You need to see if your Dr will refer you to a heptologist. I see mine at Indiana university Medical plus I see my GI in Evansville IN. My GI referred me to the university because they are the ones who are able to push the insurance to accept Ocaliva. It will take some time because the insurance companies want to keep denying. But the Dr has to keep appealing it until it goes through. Im on that plus the Urso. Also, my GI only had one liver biopsy done at diagnosis in 2012 just to rule out that this isn't something other than PBC. I asked just two days ago about if he was thinking of another biopsy. He said not at this point because he doesn't want to aggravate my liver more than it already is, there's no reason because Im already taking treatment. But he did request the EGD. I pray that you can find a great health team to help you. Keep fighting hun 😉.

Stay strong❣️

Shannon

[Sachin1234]

I can understand your frustration ..no dr. Will like to prescribe medicine with out Knowing the facts, I guess! I was diagnosed first then had my biopsy done..there is know other test better then biopsy to find liver textures..I'm doing my next one in 2 more years..

Good luck

[donna01 in reply to Sachin1234]

The thing is, you only have to have 2 of the 3 precursors for this illness and I have 2. The high ALT, AST AND ALK PHOS and the Antimitochondrial marker in my blood. As I said, I was on urso for over 6 months but could no longer function on it due to being so sickly. I don't need the biopsy for a diagnosis in my opinion.

[Sachin1234 in reply to donna01]

You don't need biopsy to confirm pbc, I agree..as I said before, biopsies are done for cell studies to figure out cirrhosis, fibrosis or abnormal cells..

you should not be off from pbc medicine for long time and why are you seeing internal medicine instead of hepatologist or gi specialist? how far do you live from university of Louisville hospital? My liver specialist is from uofl which i see him every 6months! His name is Louis marsano he is full of knowledge!

Let me know if I can help u!!

[donna01 in reply to Sachin1234]

Because every GI that I have been to is demanding a biopsy. When I refuse, they don't want to help me. They don't like someone standing up to them telling them "no" apparently. I personally am not willing to take the risk of aggravating my liver any further with their needles and the risk of bleeding. There is no way I can lay on my back after that for an extended period due to back issue from a car crash some years ago.

[JaneIng in reply to donna01]

There is a blood test called 'FibroSure' which maybe more accurate than biopsy. I am going to ask my hepatologist next time.

There is another test developed by Mayo Clinic called MRE. Here's the excerpt from a website:

Magnetic Resonance Elastography or MRE:

Researchers at The Mayo Clinic have invented a diagnostic imaging test which is able to detect very early stages of liver disease. It is called Magnetic Resonance Elastography or MRE and it is now being used at Mayo Clinic for patients who are at risk for liver diseases. MRE measures the elasticity of the liver and can detect abnormal hardening or stiffness of liver tissue – in a way you could say that MRE allows doctors to “feel” the liver by imaging it. Scar tissue is very fibrous and makes the liver hard whilst healthy liver tissue is elastic and makes the liver soft and MRE can easily detect the difference.

MRE is extremely accurate – its sensitivity for diagnosing liver fibrosis is 98 percent and its specificity level (absence of false positives) is 99 percent.

Hope this helps.

--Jane

[donna01 in reply to JaneIng]

Thanks for the info Jane. I will check it out. Is Mayo the only place that has this machine?

[JaneIng in reply to donna01]

I think so. You must have a referral before booking the appointment. The insurance code is the same as MRI.

[Michiganpbc]

Here at U Of Michigan where I am a patient they diagnose by a liver biopsy and AMA. The biopsy is done to also rule out other liver diseases so they can prescribe the best treatment. It is a very quick procedure with little risk/side effects and can tell the story behind what's wrong with your liver. Some have other diseases along with PBC that need additional medications so most doctors aren't going to blindly treat a patient unless they know what the biopsy result is. It is the standard of care and procedure at most if not all liver clinics now here in the US. Let us know how you are doing along this journey.

[donna01 in reply to Michiganpbc]

Well unfortunately, they want you to "think" you need a biopsy when in fact, you don't. Your blood work will show any other ailments you have. You only need 2 of the 3 as I mentioned above. I have the elevated liver enzymes as well as the AMA. Again, emphasis on if your AMA is NEGATIVE...... Here is an article as to who "needs" a biopsy:

webmd.com/digestive-disorde...

Liver Biopsy

Your doctor may remove a small sample of your liver tissue with a needle and send it to a lab. This test is usually done at a hospital or medical center, so they can give you medicine to make you sleepy and control pain. The sample will be sent to a lab, where a doctor will look at it under a microscope. Not everyone needs this test. You might get one if your AMA blood test is negative but you have other signs of PBC."

[Michiganpbc]

The protocol is different in different countries medical centers and clinics, where I am a patient this is their protocol . They are a major transplant center, in order to receive a liver or get on a transplant waiting list you have to have a biopsy there, not sure about other countries I am at University Of Michigan transplant/liver clinic.

[littysgirl]

Donna, hopefully you will find a doctor who is both knowledgeable and willing to work with you but in the event that you need to have a biopsy, I wanted you to know that it has changed and improved and is not so bad. Years ago, my closest friend needed a liver biopsy. I read about it for her and accompanied her to the procedure. At that time, they sedated her, used a long needle and put it between her ribs, deep into her liver. Then she had to lay still on her side for hours to make sure that she didn't bleed. When I had a biopsy done a year and a half ago, at my local hospital, not a specialty center, I had to be fasting over night. I had a light-weight sedation and was a little loopy but completely awake and alert. The doctor used ultra sound to see where he was doing the biopsy but there was no long needle. I couldn't see what he used but I heard it - it sounds like a paper hole puncher and I felt a quick, slight hit. He did another one for good measure and that was it. The tool was placed just below the base of the breast bone - none of this between-the-ribs thing. I did have to stay in the recovery room for another hour or so while they checked my blood pressure regularly and checked my abdomen for any hardness which would indicate internal bleeding. I was not completely immobile, I was in a hospital bed so I could control it, bend the knees - that kind of thing. I also have issues with my lower back. Eventually I was allowed to use the bathroom. I think I went home after two hours. I was supposed to avoid any heavy lifting for about a week but I don't remember issues at all. I did realize the next morning that the spot of the incision was a little tender, as if it was bruised (had a tiny bandaid on it) but that was it. Bottom line - don't be too worried about the biopsy if you end up having one. Oh, you do have to avoid any medications that would thin your blood for a while. I assume that bleeding is the biggest issue that you need to watch out for.

[donna01 in reply to littysgirl]

Thanks for responding. Glad to hear all went well for you. That is interesting. I will have to ask my doc again about what you said. My back is a huge issue having to lay that long. I was told 8 hours minimum or possibly overnight. I cannot do it. Not a chance. Also, the bleeding thing.. You have to sign paperwork in case of the bleeding as they cannot be held responsible and to me, the risk is absolutely not worth it. Not worth aggravating my liver either. I am adamant on not doing it so I guess I will just hang in there and pray that I stay symptom free for now and progress slowly.

[littysgirl in reply to donna01]

I remember signing papers about the bleeding. I was anxious about the test - partly because that's my nature and partly because of my friend's experience. My doctor told me it was not that big a deal and I was relieved that he was correct. One thing, I don't know where you live but if it's a rural area, I would ask how often they do liver biopsies. I would want to go somewhere that they do one every day, not once a month. I already wrote all this once and stupid AOL disconnected and reconnected and all my typing seems to have disappeared. Hopefully this won't be posted twice. At any rate, I'm typing faster now to finish before I get cut off again! Short version, I went to three doctors and had blood work done repeatedly over about 6 months. I just kept getting conflicting results and the biopsy was supposed to be the definitive answer as to what was irritating my liver. In the end, it was not definitive. The slides were sent to three liver specialty pathologists as well and their best guess was PBC. I don't know whether they would have seen different results with a biopsy from a different part of the liver or whether I really have two diseases, PBC and auto immune hepatitis. I am only being treated for PBC which is fine with me. Good luck. If you find a doctor who listens to you - then you should also listen to him/her!

[gwillistexas]

donna01, wanted to check with you since your last post. Did you find a new dr? I will find out next week is approved for Oclavia My GI goes through a program who is directly connected to Intercept Pharmaceutical, to try & help those whose ins won't cover & those without insurance

[donna01 in reply to gwillistexas]

No, I haven't found a new Dr yet. Where are you located again?

[gwillistexas in reply to donna01]

Tyler, TX