Post TX liver discomfort

[GoofyDad]

I did 26 weeks of tx, stopping 2-3 weeks ago. I'm stage 3-to-4. Over the past few days I've developed discomfort in the liver area. It's about 1.5 inches lower than my right ribcage. It's not pain, but a definite feeling - almost like theres a small stone or something in there that doesn't belong.

I had this symptom leading up to treatment, and it was worsening when I started. I remember not wanting to delay tx by even a week longer because I felt like my liver was disintegrating on the spot. I also had general abdominal soreness when my kid would whack my belly. Like a compression shock wave.

Both these symptoms quickly dissappeared as soon as I started TX - although there was one brief period where the stone-like feeling crept back a tiny bit. As of 2 days ago the stone-like feeling is back for sure, although not yet as bad as it was pre-tx. Thankfully, the whack-a-belly compression shock remains at bay.

I spoke to my RN, and she 100% assured me that this is not an indicator of renewed viral activity. She wrote it off as something that comes with the teritory of liver disease.

I'm wondering what could trigger this renewed inflamation after stopping therapy? Possibly the absense of the anti-inflamatory properties of the INF? Liver remodeling is an attractive explaination, but that seems overly optimistic. Or maybe she's wrong and it's baaaaaack?

FWIW, a recent ultrasound suggests I may have experienced  structural improvement to the liver while on tx.

[can-do-man]

The dairy man is ok, you know still his sweet loveable self that never picks on anybody. :)

Foot fetish hey, I've heard about that before.

[fishdoc]

Hey lay off the feets, man, here lately, there the only thing left thats ***@**** is it gnarly,,, no , thats not it either...;)

you know I get the ribarash worse on my feet, can't wait until its flipflops only......I was warned before I went to portland that I had to wear shoes....


hows the dairy man??

dyceman, how was the shot 5 or is it 6?

[can-do-man]

Your hubby said..... told me I had eyes like a milk cow..... Summin tells me it wasn't your eyes he was looking at. As for the shakes? Only when you talk about that 9mm and that durn pitchfork of yours. Hope you keep doing well and keep them shoes on.

[fishdoc]

Hey don't forget dairy cows/ and milkmenss.... my hubby-man of few words, when we were dating told me I had eyes like a milk cow.... I think it was a compliment  LOL...

Went to see a long time friend for the first time since starting treatment... said she would have thought I looked like Sh!t if she hadn't just seen another aquaintance thats 4 months into treatment (i'm two months in).  said she shakes all the time.  I told her thats one sx  I haven't seen a lot of on my chat room..anyone else shake like the dt's?

[can-do-man]

Thanks for the comments. Always nice to hear from the board vets


So you saying there a bunch of animals here? Well come to think of it there is a bunch of dogs, goats, pigs, heck we'll even count the fishies

[GoofyDad]

Thanks for the comments. Always nice to hear from the board vets!

The interesting thing about my case is I had not discomfort while on tx, but it returned almost immediately upon stopping.

I'm not going to worry too much, but I'm still curious about what the explaination could be for this reaction.

[suzieq2]

I am about 3 months post treatment,and had the pain in the same erea. If you all remember I had started treatment with the Chinese M.D. Acupuncture and prescribed Herbal therapy. I feel great! nonresponder. All labs are normal eccept VL of course. Enzymes have stabalized in the low 60s. This treatment for me is working great. Best caring DR and treatment I have expeirienced in the past year.I so reccomend this treatment for eveyone on treatment with help of side effects and for sure nonresponders.I was invited for a clinical trial with Protease inhibiters. Not for me,I am doing so great with the eastern medicine. I am going to wait for the better future drugs.

[jmjm530]

A few facts about the high dose riba study:

Mean dose was 2,540 mg/day of riba with a range between 1,600-3,600 a day -- again dependent on serum riba levels as measured by a special blood test. The wide range of riba dosing strongly suggests a wide variation of riba absorption (independent of weight) probably more related to other factors including kidney function.

Mean hgb levels at week 0 was 14.4
At week 12: 11.2
At week 24. 9.7

Everyone in the study ended up on EPO (Procrit) along with some iron supplementation. Two out of the ten participants required two blood tranfusions each but remained in study. One patient dropped out for reasons not having to do with the riba. I believe the other nine went to completion and SVRd. That's 100% SVR in this very small pilot study, omitting the one drop out. (Think the reason was interferon related, not sure.)

I had planned on emulating this study to the best of my ability but my sides prevented me in the end from taking more than 1200 mg/day of riba. Any more and I felt the additional sides  might not allow me to complete the course. I also have a cardiac history which made the approach a little risky as well.

-- Jim

[can-do-man]

says.... Yeah, right. No one is touching my riba until I'm non-detectible for one year. LOL

Jim summin tells me no one will ever take them ribas away from you.

BTW, Since my doctor left it up to me. Im taking your advice and only going up 1 a day for a couple weeks. after yesterday and then today. Never would have thought 2 more would make that big a difference. But then im not one to think to often.

[sunspot]

I had LAP (Liver Area Pain) pre-tx like you had. About 2-3 weeks after EOT the pain came back but not near as bad. If you follow me, the LAP will go away in another 2-3 weeks.
How is your energy level? I hope you are feeling better post-tx.

[jmjm530]

cdm:Jim summin tells me no one will ever take them ribas away from you.
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To be honest, my life does seem a little empty without them.
Good luck with the rib. BTW are you on Procrit or going macho?

Also, read somewhere you planning on dosing 6-8 hours apart? I often dosed as close as 4 hours, so I wouldn't worry. Trick is to take them with food and a decent amount of fat. Also, depending on your eating habits, there's nothing wrong with breaking the doses up to three times a day. That's how many in the High Dose Riba study did it.

-- Jim

[can-do-man]

No procrit as my hgb has held study at 12.5 But that might soon change though.

[jmjm530]

You understand my degree is in mothology, not medicine.

That said, you've probably read my recent discourse on the relationship between anemia and riba absorption. Think it was today or yesterday, things get foggy.

Anyway, the short of it is that our Swedish friends found a positive correlation between riba absorption and anemia. Makes sense if you think about it.  In other words -- everything else being the same -- the more anemic, the more riba in your system.
The more riba in your system -- some suggest the better chance of SVR.

So, unlike in Sweden where they have a blood test to determine serum riba levels, the degree of anemia could theoretically be used as a crude barometer as to how effective the drugs are getting into your system.

Therefore, one agressive approach is to push your hgb down to whatever trough hgb level you and your doctors feel comfortable with -- with me it was around 11 (others I'm sure do fine at 10 or even lower) -- AND -- do 40,000 units of Procrit a week at the same time, which will allow you to take more riba for the same trough level. Now you've got the biggest bang out of your riba money.

Keep in mind, Procrit, like every drug has side effects and risks although many of us seem to tolerate it quite well.

The preceding is nothing more than my unprofessional musings, and I certainly wouldn't want anyone to follow this approach without discussing it with their doctor in detail. Now if you want to get rid of moths, I'll give you some direct advice.

-- Jim

[GoofyDad]

Thanks for the encouraging words on the pickled liver, folks. I feel better.

HGB 11, Jim? Holey Mackerel - weren't they worried about nose bleeds way up there?  Or maybe having the red sludgey glop forming a blockage in a ventricle or something? :)

[GoofyDad]

LOL - Between the pre tx jitters, the picking a stopping point jitters, the post tx relapse jitters -- the only time I was cool and in a comfort zone was when I was deep in the womb of Mother tx.

[can-do-man]

pickled livers? Just what do you bay coast people eat anyway. Btw have lil goof whack you over the head. Should solve the liver pain for a while.

[jmjm530]

G said: HGB 11, Jim? Holey Mackerel - weren't they worried about nose bleeds way up there?
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If you think I'm gonna take that from a geno 3, you had better get that twichin' middle finger under control. But seriously, I would have liked to take some more riba and drive the hgb lower but at the time I was having a very difficult time staying the course with the present dose. Your low tx hgb combined with the fact you took  Procrit IMO steads you well for SVR.

-- Jim

[GoofyDad]

Just pokin' some fun, of course. It still surprises me that I felt as OK as I did with the rotten numbers I had. It's so unpredictable how people will react to the meds, and the numbers don't tell much of the story, I don't think.

[jmjm530]

g said Just pokin' some fun, of course.
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I'd be disappointed at anything less.
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It is interesting how different bodies adapt to different hemoglobin levels. Iceboy was walking around with like 3.2 if I remember correctly. If I didn't have more sides, I probably could have done better than 11 but didn't want to push it.

But how you feel aside, the number can suggest how much riba you're absorbing as I ranted on in my post to CDM. In your case, I think it reasonable to say you absorbed a lot of riba which can only be a good thing in terms of SVR.

-- Jim

[goldyn]

i get that feeling to when im hit in the stomach im thinking it has to do with my spleen on my last ultrasound it showed my spleen was a little enlarged do you remember if they said that about yours?

[GoofyDad]

Yeah. I think it's been slightly enlarged all along. Some U-sounds report it as normal, but the theory is it was on the small side to begin with, so when they say normal, that's enlarged, if that makes any sense.

The latest u-sound noted it as slightly enlarged, maybe due to 6 months of Neupogen?

[lackalustre]

a veteran here.  completed tx. in 03. still clear.  i found that the discomfort and pain in my liver area has diminished the longer i have been off tx.   i had it before tx. too.  but i rarely get it now.  i believe my liver is improving all the time   although other problems seem to be ongoing... like acid reflux brought on by swallowing ribaviran pills for months on end.  irritable bowel syndronm and other maladys.      one thing i would suggest is  a low saturated fat diet. many of us with or who had liver disease have gall stones.     dandelion tea is also good for the digestion and liver.

[jmjm530]

G said: Lesson 3 Post-tx: Whatever they're complaining about, tell them it doesn't matter - it's not a relapse - relax. Cancel riba order.
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In my case they told me to return any unused drugs -- even went so far to say it was bad luck to hold onto them. Yeah, right. No one is touching my riba until I'm non-detectible for one year. LOL.

BTW if you're changing from animal to veg fats, you don't want to use the kind that is semi-solid like margarine which has trans fats. Worse than butter. Olive oil and other mono-fats are preferable.

-- Jim

[Moniker]

I too get PTPS (post treatment paranoia syndrome), and I won't even be finished with my treatment until the middle of June; I'm on week 38 now.

It's easy to worry about every little thing, and I do project the worst possibilities sometimes. The best cure I've found for PTPS is a nice bowl of ice cream.

Bob