Liver biopsy soon

[skay1957]

How painful is a liver biopsy? I was told they’ll start an iV for mild sedation but are you out of it or are you aware of it all?

[katqueen68]

I just got out of hospital for biopsy, ablation and resection. I am extremely sore from laproscopic surgery.

[skay1957 in reply to katqueen68]

Thank you for responding. Feel better soon.

[spoonie29]

Hi. I had my liver biopsy a few weeks ago with just a local. It was honestly not as bad as I thought it was going to be and i had complications. It really hurt when they actually took the sample but that only lasted seconds at most. I was uncomfortable and later on I did have severe pain in my shoulder which is common, but they gave me pain relief and I was extremely uncomfortable around my ribs that was due to the complications though. Honestly I did so much research into what it would be like, I'm a super anxious person but I can saying now having had it, I could do it again, I wouldn't particularly want too but I could. Everyone's experience is going to be different just make sure you speak up to the team caring for you. And if you feel sedation is best for you absolutely take it. Hope everything goes well for you.

[skay1957 in reply to spoonie29]

Thank you for your reply. I am having sedation. Just hope I don’t have complications. Thank you for sharing your experience. Wish you well.

[nash2 Partner]

Hello Skay

There are 2 different approaches to biopsy. In one they use a large needle between the ribs and in the other they put a catheter through your jugular vein. They will sedate you for the catheter version, typically don't for the more common needle version but practices can differ. Ask your doc lots of questions till you are satisfied. Some people have discomfort others don't. There is a wide variety of response but generally it isn't overly difficult. For most it is more scary than painful but like any medical procedure response varies. I've had three and they weren't painful. Good luck with yours.

Wayne

[skay1957 in reply to nash2]

Thank you Wayne.

[Cats2018 in reply to skay1957]

Mine was through the ribs and I was sedated prior to receiving the local anesthetic. My doctor uses this particular place for biopsies because they always use sedation. So my experience wasn’t bad. Just some aching along the ribs for about 3 days. But I have heard that some places do not sedate. I’m having my second one at the same facility on June 20th as part of the end of a year long clinical trial and I’m not worried about this one because of how the May 2018 liver biopsy turned out.

[Millie2014]

Hi Skay I had a liver biopsy last Monday it was done with a kind of gun under local anaesthetic. The worst part of the procedure was having the anaesthetic as it was quite painful but afterwards you are numb and the biopsies were quick and painless. I had the shoulder pain referred to by many others but it was manageable with paracetamol. Lying still for the first 2 hours is difficult towards the end of the last hour but necessary to prevent bleeding. I was then allowed to sit up for the next 4 hours and eat and drink. I then was allowed to go home. There were no complications. I am awaiting my results now. Good luck I hope it all goes well for you.

[skay1957 in reply to Millie2014]

Thank you,

[Hidden in reply to skay1957]

Hi

I had a biopsy in 2016 and it hurt a little with local anaesthetic but the procedure was fine. I got referred shoulder pain. I found the worst bit was I had to lie there for 4 hours!!, Good luck with yours. Take care Lynne

[skay1957]

Thank you Lynne.

[Rnnrfrlf]

Yes its true you will get a milld sedation, just remember, try your hardest not to move, they’ll remind while you are being sedated, and if you do you’ll pay for it quite dearly. This goes in terms with the soreness you’ll have after the surgery. I’m not trying to scare you, you’ll be able to walk but you won’t be able to drive because of the sedation......you’ll do just fine, don’t let it worry you.

[Hidden]

When I had a biopsy, they numbed the area first and I didn't feel anything. I don't remember if I had sedation, I know I was awake. Afterwards I was a little sore, but most people say they aren't. They will keep you for about 4 hours afterwards, if you feel any discomfort, tell the nurse you need something for pain.

[Jkf1]

Where I'm at I was told that I would have little to no sedation and I would have to lay there for up to eight hours and that it could be quite painful. It is a very invasive procedure with potential harm, all this to just to get information. I have and will refuse to go through with a biopsy unless someone can knock me out cold. I'm not going to suffer for them. They can treat me as a worst case scenario.. and stage me one level above where they think I am. My poor mother went through it before she died of liver cancer, and to me her suffering was not necessary. My honest opinion.

[Holeymoley1]

Why are liver biopsies given. Isn't it possible to get enough information from non invasive methods like fibroscans.

[skay1957]

Liver biopsies are like the gold standard in diagnosing cirrhosis. Fibroscans measure the stiffness of the liver. In my case, I am having the liver biopsy because I am trying to be accepted into a clinical trial and I have to have all these different tests and procedures and if the results qualify for this particular clinical trial then I can start the clinical trial. I am praying I qualify. I have to be Stage 1 cirrhosis to qualify. They think I am but it has to be proven first. Platelets have to be At least 100 or greater.

[Cats2018 in reply to skay1957]

I replied already but then I read your message about having the biopsy to qualify for a clinical trial. I also needed my May 2018 liver biopsy to qualify for the clinical trial I have been in for a year. But the doctor also wanted it anyway as she was certain I had NASH either stage 2 or 3 fibrosis and she wanted to know which. Mine is stage 3 fibrosis. My next liver biopsy on June 20th is the 2nd one and is required as part of the completion of the clinical trial

[Cats2018]

I had my 1st liver biopsy in May 2018 & I was also nervous. I had the sedation & local and it was not as bad as I’d heard. The surgeon told me I’d ache along the right ribs afterward for 2 or 3 days & possibly into the shoulder. I did ache along the ribs for about 3 days but not the shoulder. I have to have another liver biopsy in June 2019 as part of the year long clinical trial I’ve been participating in, and I’m definitely not as apprehensive as I was the 1st time. Good luck!

[skay1957 in reply to Cats2018]

You are on a clinical trial? That is why I am having the biopsy, in the testing stage of a clinical trial to see if I qualify. What clinical trial are you on? Are you in the states?

[Cats2018 in reply to skay1957]

Yes, I live in Arizona. I was accepted into a year long clinical trial 1 month after my diagnosis in May 2018. The sponsor of the trial needed blood tests, MRI series, and liver biopsy prior to determining if I would be accepted. The trial I’m in is by CymaBay Therapeutics. I believe it’s phase 2 of testing on a drug called MBX-8025. They are testing 3 different dosage amounts of the same drug, so I might be on any of the 3 doses or I could be on placebo. I’m having the 2nd biopsy June 20th so they can compare it to the original biopsy from May 2018.

[skay1957 in reply to Cats2018]

I am in the testing phase with the liver biopsy tomorrow morning. I have to have blood work, a fibroscan, EGD, ultrasound, and the liver biopsy. I have already had the EGD, fibroscan and blood work. This clinical trial is a different drug than yours. It is in the third clinical trial and may go to the FDA for approval after this last clinical trial as per the doctor. It is the same set up as yours. I have 1/3rd chance I will be taking the drug. It’s a 2 year trial. The second year I will be on the drug. I am hoping and praying I qualify. I have to be Stage 3-4 fibrosis or Stage 1 cirrhosis. It’s a NASH study so you have nonalcoholic fibrosis or cirrhosis. I am in South Carolina. I am a little scared of the liver biopsy but I have to get this to be considered.

Kay

[Cats2018 in reply to skay1957]

Kay,

Good luck tomorrow. I’m hoping all goes well & that you do qualify for the trial. I had all those same tests. FibroScan was the initial way I was diagnosed & the doctor knew from experience that it was NASH and was either stage 2 or 3 fibrosis. She said I needed a liver biopsy ASAP even if I didn’t apply for a clinical trial because she wanted to confirm what stage. It’s stage 3 fibrosis NASH. I had an EGD also - my gastroenterologist is the one who referred me to get the FibroScan because of elevated liver enzymes. I had abdominal ultrasounds as well. During my year long trial for the 1st 6 months I had monthly blood tests & EKGs, as well as weigh in and exam by the doctor at the Liver Institute. During the whole year I had a series of MRIs every 3 months. During the final 6 months of the trial I had blood tests every 3 months instead of monthly, and because I then didn’t have the monthly exam with the doctor I had a phone consultation with my Coordinator for the trial.

Let me know how you do and if you qualify for the clinical trial. 😊

Char

[Cats2018 in reply to skay1957]

PS - I meant to ask which clinical trial are you applying for? My liver institute has many clinical trials going and they already told me that after this one ends they’ll give me a couple months break and possibly choose a 2nd trial for me to apply for if I’m willing. I didn’t expect that!

I was scared before the 1st liver biopsy too, so I know how you feel. But at least in my case, it wasn’t nearly as bad as I feared because of things I’d been told about liver biopsies. It was just a slight ache along my rib cage for 2 or 3 days. I think they sent me home with 5 pain pills and I only took 1 the first night at bed time and skipped them after that as I try not to take NSAIDs anymore or pain meds if I can avoid them now that I know I have NASH. I’m not feeling the apprehension about the 2nd biopsy on June 20th since the 1st one went well. Hopefully that’s how your experience with it will be

Char

[skay1957 in reply to Cats2018]

Hey Char,

The clinical trial I am trying to get in is for the drug Obeticholic acid (OCA) Intercept is the company. I will let you know how I do with the biopsy. I hope I can advance on. I found out I had cirrhosis 2 years ago. I have had elevated liver enzymes for many years and had an ultrasound 10 years ago that showed fatty liver but I was told by my doctor not to worry about it, that I was fine. He never recommended another ultrasound, he never did CBCs. Then, I saw a colleague of his because my regular doctor was not available for a routine visit. That doctor did a routine CBC, my first in many years and I was anemic with low platelets. I still was not explored for more serious diagnosis, just put on iron for 6 months and was told it was probably idiopathic thrombocytopenia. 6 months later still low platelets and anemic so then sent to oncologist who immediately sent me for CT and diagnosis made for cirrhosis. I wanted to sue that doctor for his negligence in not taking care of me better but no attorney will take it. I had no idea I was developing cirrhosis. That doctor had told me years ago not to worry about it. I feel if he had been keeping a check of the fatty liver maybe it could have reversed itself if I was aware my liver was changing. I am venting, sorry. Kay

[Cats2018 in reply to skay1957]

Kay - It’s ok to vent to me. I understand why you’d be angry & frustrated. I think this is the case with many primary care doctors. They don’t take fatty liver seriously and do not tell us that it can progress in some of us to Nash & Cirrhosis. I wish I’d been told earlier as well. In fact when I was told I have Nash right after the FibroScan, I had never heard of Nash.

I told my brother to ask his doctor to refer him for the FibroScan and tell the doctor that his sister has been diagnosed with NASH and he told my brother not to worry about it - that a lot of people have it. He is confusing fatty liver and Nash as though they are the same thing.

It’s frustrating that most of us have advanced to late stage Nash or cirrhosis before we are diagnosed. With a diagnosis at an earlier stage we could’ve reversed some damage and slowed progression before it became as advanced.

Please do keep me updated on everything. I have heard of the Obeticholic acid and that it sounds promising and is closer to FDA approval than the drug in the trial I’m in. MBX-8025 in the trial I’m in is also called Seladelpar. I hope you are approved for the clinical trial! Will be thinking about you and praying for the best in the morning!

Char

[skay1957 in reply to Cats2018]

Thank you Char. I will let you know. Kay

[skay1957 in reply to Cats2018]

Hi Char,

I had the biopsy today. It wasn’t bad. The lead up to it was the worst part. Plus my anxiety of waiting for it. I didn’t sleep but less than 2 hours last night due to anxiety over having this done. I am about to drop now because I have been up so long now. It’s over and I survived. Going to bed early as I am so tired and sleepy now.

Kay

[Cats2018 in reply to skay1957]

Kay, Thanks for letting me know how it went. I’m glad it’s over and you can rest now. I didn’t sleep well the night before mine either - nut I sure napped when I got home! Now you will just wait until the results determine if you are accepted into the clinical trial. Keep me updated!

Char

[TwirlerGirl in reply to skay1957]

Hello, skay, hope today is a good day! Just wanted to note that I’ve been following Intercept and its clinical trials, especially for NASH, closely for years. I’m also an investor. I think they’re terrific and have a good shot at getting the first NASH treatment licensed. Thank you so much for your courage to participate in the clinical trial. 😊

[skay1957 in reply to TwirlerGirl]

Hi, I did try to get on the clinical trial. They accepted me and They performed a biopsy and I had other testing but after testing they told me I wasn't sick enough to participate to continue on. I was disappointed but the research doctor said on the other hand that was good that I wasn't sick enough. Kay

[TwirlerGirl in reply to skay1957]

Yes, that’s a good problem to have!

[Riggsy1]

I had the biopsy with sedation never felt a thing

[Cats2018 in reply to Riggsy1]

Me too!

[Suzie1955]

Mine was not as bad as I thought it would be. I did have pain the next day. Called the nurse line and they suggested I go to the ED just to be safe. They did a CT and it looked fine. I did not know what to expect either. A friend of mine who also has cirrhosis said when she had her’s done she immediately asked for an ice pack. She kept ice on it the rest of the day and she said that she had no pain at all after the biopsy. I am definitely going to try this for my next one. Good luck!

[skay1957 in reply to Suzie1955]

After having it done yesterday I did have pain every time I took a deep breath yesterday for for 6-8 hours but today it’s been better and now tonight I am pretty much pain free. It was definitely not as bad as I imagined it would be. I am glad it’s over. Kay

[Suzie1955 in reply to skay1957]

Hi Skay1957

I am glad it’s over for you too and that the pain was not to bad. Now comes the waiting time. If you haven’t already changed your eating habits now would be the best time to do it.

I am on a lot of medications and I had my doctor and pharmacist go through my meds to see what ones were not good for my liver. Then worked with my various doctors to change to different medications. I was on 17 medications and it sounded like a lot but am down to 13. At least they are more liver friendly. I do find that with my liver condition that some medications don’t process the same.

I think that my liver problem is do to the fact that I have been on a lot of medications for a long time and this plus my diabetes may have caused my liver problems.

Keep us informed of your test results. We are here for you.

Suzie1955

[Imagistics300]

It wasn't bad at all. I did get very mild sedation. But my primary had to order it ahead of time. It was over in less 10 minutes. There were a few people in the room. I remember thinking it was going to be awful.. but laughed about how scared I was. It was done in Radiology, I

believe.

[Imagistics300]

Sorry, lasted about 20-30 min.