triple therapy suspended due to low hemoglobin.

[tripthermark]

Hi everyone,
not a question but I do wish to report some recent events concerning my triple therapy treatment.

I'm at week 14/48. I made it through the 12 weeks of incivek, feeling elated about that. No more 20+ gms. of fat or drinking large amounts of water to prevent "fire in the hole".  

Unfortunately, my hemoglobin went down to 9.6 and I was told to stop the ribapak, reduce weekly peg-interferon shot from 180 to 135. That was almost 3 weeks ago.

Now I'm injecting procrit once a week(the day after interferon) and waiting for my hemo to get back up to acceptable levels.  At which time I presume I will go back on riba.

One point I wish to share is that while on the triple therapy and taking all three drugs, I suffered from debilitating insomnia. Little to no sleep for weeks and weeks. And all these serious issues that come with lack of proper sleep/rest.

After about 7-10 days after stopping riba, I began to get more and more sleep and started feeling like my old self again. Of course, this was at the same time my interferon was reduced and just before I finished the incivek. So, I can't be sure but at least for me, I feel the riba caused my insomnia.  No doubt there are countless who agree.

Obviously, I would have rather stayed on course with treatment and not have low hemo and have to stop riba.
I have been 100% committed since day one so these recent events are a bit of a downer and I'm not sure what my long term prospects are now.  When last checked, I was still undetected, but that was before stopping riba.

I've had ascites and edema during the same time period, my feet swelled up like balls, upper and lower legs swelled too and my abdomen was hard and swollen. I haven't had issues with ascites since 2004 so I was worried.  The last time I had ballooned up with ascites/edema, the next thing that happened was burst esophageal varices, instant life threatening situation.

But adding lasix to my doubled daily dose of spironolactone has expelled most of it now, my belly still has some and my feet still swell a small amount by night time. Yes, I carefully watch my sodium intake and try to prop up my feet when possible.

My latest blood work reveals I need to bump up my protein a bit, I'm at the lowest acceptable number (6). I'm also deficient in albumin (2.7) and calcium. I had an appt. with a dietician yesterday and went over ways and foods to address these issues. As well as getting proper levels of calories and carbs, which I have struggled with.  Overall, I was told I was doing well and much better than most liver patients they see, in terms of diet and healthy eating.

Not sure what the future has in store for my treatment, it all mostly seems in a holding pattern at the moment.  I remain positive and upbeat and hope to get back on riba soon.

Just wanted to share a few things, such good people in this forum. Good luck to us all.........

mark.

[HectorSF]

Hi Mark.

I am sorry to hear about the issues you are having and am hoping you can continue full treatment as soon as possible.

Has the procrit been helping you? Any talk of transfusions. I have a friend who is post transplant and it doing treatment. He is taking procrit every 5 days and transfusions when he goes down into the 8's.

I did want to mention a few things about your cirrhosis and the need to be monitored closely during treatment.

As you have stated you had signs of decompensation in the past. Ascites, variceal bleeding. Both complications of cirrhosis can be life-threatening. Luckily you have been good to your liver and it was able to recover its ability to fully function over the last number of years. I hope and trust you have a knowledgeable and experienced hepatologist who assessed your current health status before treating you (checking varices, liver function, etc.) and is keeping a close eye on how treatment is impacting your liver.

As you know the first line of treatment for ascites and edema are reducing sodium intake to under 2,000 mg per day. Next is the proper use and dosage of diuretics. I hope your doctor is checking your electrolytes to make sure your diuretics are in the proper balance. Potassium is especially important to monitor closely.

As you pointed out your albumin is low. This is an indicator of your liver function. Low Albumin levels causes the fluid to leak out of your blood vessels thus producing ascites and edema as you have experienced.

By the way how is your platelet count and INR/PT? Any nose bleeds or gum bleeding? Hopefully not.
How is your total bilirubin?

I just wanted to mention these subject as we don't want treatment to do more harm than good. As you may know treatment can cause decompensation or liver failure in cirrhotics. Please be careful. If you have any indication of bleeding or infection please contact your doctor immediately or go to the ER. Always better safe than sorry.

Best of luck with your treatment!
Stay healthy, stay safe.

Hector

[can-do-man]

Yes Riba will cause insomnia, didn't they just consider reducing the riba instead of stopping it altogether as 9.6 is far from danger zone? Hoping stopping for 3 weeks doesn't cause a breakthrough... Wishing you the best.

[pooh55811]

Hi Mark,

Thanks for letting us know how you are doing. I am hoping things will work  out so that you can continue treatment and that you will stay Undetectable.

I am wishing you the best.