Tysabri and liver damage

[brooks1teacher]

Some of you may have read my previous threads asking about Tysabri and the rebound effect and what I'm dealing with.

Today I have had yet another monkey wrench thrown at me. Last year on December 17, a biopsy of my liver was done when I underwent a RNY gastric bypass.

My surgeon told me that the biopsy showed fatty liver which would resolve as I lost weight. I had no reason to question his answer because doctors don't lie, right?

Fast forward to this October when I found out that the biopsy showed that I had nonalcoholic steatohepatitis with cirrhosis. I had been on Tysabri since October 2008 and had had my last Tysabri treatment on September 6 of this year because I tested JCV+.

The liver transplant evaluation person just called me about my referral. She told me that because I was JCV+ I couldn't have the transplant.

I'm a little flabbergasted at the moment. I haven't seen anything about this in any of my research on liver transplantation and I'll be asking about this when I travel to Mayo Clinic in Jan.

Has anyone else heard about this? I know liver damage is a side effect of Tysabri and my LFTs have been all over the place for a while now but not too seriously elevated. If I had known about the cirrhosis in December I would have immediately stopped Tysabri then.

It just seems odd to me that if a medication can cause liver damage and if you become JCV+ while on that medication that you no longer have the option of receiving a liver transplant.

Thoughts anyone?

It seems like if this was an issue patients should be monitored more closely and we'd be made aware of this potentially life altering issue.

Flummoxed as usual,
J

[DebbieB]

Good grief!

Brooks, I'm so sorry! I cannot believe how much you are going through.

I'm at a loss with this one- how can this be, when the JCV virus affects up to 3/4 of the entire population? And is generally not an issue for most people? Is it because you converted to + during your tysabri treatments?

It's not fair! I'm so sorry.

[brooks1teacher]

I called the transplant center team back and asked for more information.

I'll share it when I get it.

I'm hoping that there is some sort of mix-up. I asked if it was because I went + after taking Tysabri but she didn't know and was going to consult with the surgeon about it.

Thanks for the reply,
J

[DebbieB]

Good!

Good...I'll be interested in hearing the results.

Fingers crossed.

[LL60]

brooks1teacher,

I am just so very sorry that another thing has been thrown at you. This just is not fair.

On the one hand it does make sense; PML is a risk for those on the antirejection meds you have to take after a transplant. They may feel that you already knowing you are jcv + puts you at somewhat at a higher risk? But the tests for the virus are fairly new and it is my understanding, as with Tysabri, the risk of PML with these meds is low, but a possibility just as with Tysabri. Do you know your titer number? Maybe that will make a difference.

Getting PML from anti-rejection drugs is pretty serious. Getting PML when you have AIDS means pumping you full of anti virual drugs and hoping for the best. Getting PML from Tysabri or other meds means you have to stop the drug and hope for the best. Getting PML from anti rejection drugs doesn't give you a whole lot of things to try, you can't stop taking the anti rejection meds.

Before you go to your app at the Mayo clinic find out as much about this as you can. Write down the names of the people who are telling you this. Write down just what they say. Look up information on the compound IKT-001. This is a drug they are working on that is a pill you take once or twice a day and it gets the jc virus out of your system. In phase II trials it was 50% effective. It is a long way from consumers, but the Mayo clinic should know about it and maybe you could get on a trial for it or something. I already looked into that, they didn't take anyone over 55 for the Phrase II trials, so I doubt they would take me for the Phrase I trials.

There has to be a solution for you. How are you dealing with all this? I wish I could help. I think that even if it is some sort of vague protocol for them that people who know their jc status don't get on the list, I think there are other areas they must look at also. Your overall health, your support system, your outlook on things.

And take a break from all this for short periods too. Not sure how you can do this. But its important. Sit outside for a bit and watch it snow? Watch a funny movie. Do some deep breathing. Take a bubble bath. Go get a pedicure. You'll know your feet look great even if no one else does!
Connect with a friend. I don't know. I'm just typing off the top of head. There has to be something you can do. But....you also have to have joy too. Sometimes at the end of the day when I list what I got done that day, I have to list every little small thing: made a good breakfast, filled the bird feeders, stuff like that. It might not be cleaned the bathroom or did the wash, but hey at least I did something. And everything counts in life.

Keep posting. I don't always answer because I don't feel like I have much to offer and have been "yelled" at when I couldn't offer much or said something wrong, so it makes me a little gun shy.

But you guys here have given me so much, I wish I return the favor.

[brooks1teacher]

Thanks and update, new neuro appt

Thanks for the replies. I am continuing to do research on this connection between the JCV and organ transplantation.

You can get PML as a result of organ transplantation if you become JCV+ while on the immunosuppressant medication.

I'll certainly be talking to Mayo about this and their trials.

I do have a neuro appt at the U of R in NY on Thursday morning. They are turning me over to a new neurologist so I have a 2 hour appointment with her. I am hoping that this will somehow be helpful because then she can actually see how diminished my muscle strength and how incredibly fatigueable my muscles are.

When I was at U of R on October 24 I could do the walking test unaided with no problems.

Now I can't do anything without a cane or walker and that is haltingly slow at best.

Thank goodness for OT, PT, and Speech in my home, though. That makes a difference for me every day.

They are also going to hook me up with a home health aide who will start coming next week.

I also am grateful that I had my RNY gastric bypass last December because if I was still weighing in at 278 pounds and not exercising at all like I was then, I wouldn't be able to do as much as I am now. I think the mere fact that I have been exercising right up through a weeks ago has given me a better place to rebuild from then I would have been if this had happened to me a year ago.

Things may not be great but they could always be worse. I'll keep looking for the small victories in every day.

J

[DebbieB]

Liver Damage and TY

LL60 - thanks for educating us!

Brooks - Good luck at your U of R appt. Your positive outlook continues to be an inspiration to me - thank you!

Positive energy coming your way!!!

[brooks1teacher]

Thank you some more!

Thanks, Debbie.

MS is a craptastic disease in the best of times and I tell myself often that things could always be worse.

Remember that most people are about as happy as they make up their minds to be.

I have MS and it does have me but I am going to fight like a son of a gun to get as much of my functioning back, and as much of the rest of my health back as possible.

Yes, it sucks that I have almost no use of my arms and legs at this time and that by the end of the day my muscles are screaming in my torso from just sitting up but there are worse things. There are thousands of people who didn't wake up today and I wasn't one of them.

For now, my mind is clear and I'm intelligent and well-educated enough to be fighting for my health and being my own advocate because quite frankly there is no one else who is willing to do it. For that alone I am thankful.

I'll let everyone know about the appointment with the neuro on Thursday and what she has to say, if anything. I am trying to be cautiously optimistic!

Hugs to all because we do need them,
Julie

[LL60]

Julie,

You just have the greatest attitude!
That has to count for something when you are evaluated for your transplant.

It is exhausting fighting for our medical care. But, it's worth it most of the time.

I hope your app. goes well. Boy, two hours with a neurologist! This is certainly the time to get all your questions answered.

Hugs to you right back.

[lindaincolorado]

Good morning Julie, I am so sorry for what you are experiencing but, love your attitude

I hope you don't mind, I just said a prayer for you..
Bless you
Linda

[brooks1teacher]

I'll take any prayers I can get so feel free to pray away. I do appreciate them and I'll include you both in my prayers also.

Julie

[Scaredintn]

Julie, I hope your appointment this morning is going well and you are getting some answers. Thinking positive thoughts

[DebbieB]

Checking in...

Julie,

You've been in my thoughts and prayers. When you have time, please let us know how today went.

If you are like me, my guess is you are probably crashing after today's visit.

[brooks1teacher]

New neuro update

It was a long day but I liked the new neurologist and I'll be following up with her in April. Hopefully by then I'll be able to drive myself to my appointment.

She is all for me continuing PT and OT and Speech for as long as it's beneficial so that's a plus.

She started me on Neurontin aka Gabapentin for my pain so we'll give that a try for a few weeks to see if that makes any difference. She has written the script for 300 mg 3 times a day but I'm just starting with one dose a day in the evening when my pain is the worst.

The good thing about Neurontin is that it's primarily processed by the kidneys rather than the liver so that is more helpful for me. It still goes through the liver because everything we touch, breathe, eat, and drink gets processed by the liver but anything I can do to minimize the amount of medication processed by the liver is a plus in my eyes.

We also discussed the issues I'm having with Tecfidera. I just started Dec. 1st but I have every side effect in the book and I have to take Phenergan twice a day to help with the intense nausea. I'm still taking Omeprazole and chewable Pepto Bismol on top of the Phenergan and I'm feeling lousy with the diarrhea, flushing, itching, and stomach pain (not to mention the hair loss).

She asked me if I would consider going back on Copaxone which was my first MS medication. I did have 5 IPIRs (immediate post-injection reactions) while I was on it along with some mild disease progression and I had big, red, hot to the touch welts for weeks after each shot but it's the devil I know vs. the devil I'm dealing with now which doesn't have much long term side effect info available.

Not knowing about the long term potential side effects of Tecfidera worries me after the Tysabri debacle I'm currently dealing with.

So, I'm headed back to Copaxone soon and I am okay with that. That way I still have Tecfidera as another option again if I need it. I would really like to gather my remaining energy and focus on the level of health I do have as I try to gain more ground and prepare for my trip to Mayo.

I'm seeing some small improvement in my legs from the PT but my upper body is still a mess which has never been an issue for me before. Regardless of what I do I can't sustain any real movement with any of my limbs for more than just a few minutes. My muscles fatigue so easily and it takes so long to regain strength for me to use them again.

Just riding the 2 hours to the appointment, then the appointment itself, and then the ride home again was completely exhausting for me. Last night's sleep was restless so I'm hoping for deep sleep and good dreams tonight. I'm fighting a huge bout of nausea at the moment and waiting for that to pass...

The neuro is also ordering new MRIs of my spine but I have no idea if that will show anything at all. I've had the same lesion at C3-4 since my diagnosis in 2005.

She says that she's not sure if this is Tysabri rebound or not. If it is, she says that I'm atypical but I've heard that before. LOL

She also ordered some more bloodwork so we'll see what that shows, if anything.

I'm still plugging along so thanks for your responses and your prayers,
Julie

[pennstater]

Julie,

I am really glad you liked the new neuro. I also wanted to let you know how much I admire your strength and fantastic attitude. I hope the switch back to Copaxone is uneventful. Please keep us updated.