Need your seasoned Help!!

[DragonTamer]

Hi All,

I just found out that my Liver enymes have risen again.... from the begining of treatment went from 41 to 38 to 72 to 140 today!     My doc thinks it might be the Interferon. He wants me to skip my next shot Tuesday. Will repeat the labs Wednesday, to see if the enzymes stay the same or go down, to prove in deed if it is the interferon.  He said if they don't go down he will have to lower my Interferon dose from 180 to 135m.   And see if that does it. I don't want to lower my meds as much as I hate them, I want to kill this thing completely as fast as possible!

I would love some ideas on this from you experienced wizards of wonder!!  Right now I am UND!  I don't want to take the chance of losing that with a lower dosage.... what are the chances that could happen?

And 140 isn't incredibly high but  things are going up since Tx.  I thought it was the mushrooms and new vitamins but I guess not. It is the bloody Tx itself!    How dangerous can this get if I don't lower the dosage..I am due to stop treatment in December?  I am 2b and all else looks good... wbc low but nothing else terrible. But still waiting on the thyroid labs!

Shouldn't I just hang in there, deal with the higher enzymes...till then (my liver is in good shape) Can numbers like that really do such a bad job on it in 4  months???? When It is in good shape now? Iam not taking anything now but my atenenol for BP and valium to help sleep. Staying clear of iron...but someone said Protein itself can rise levels...I don't eat red meat or meat period really...but started eating more soy and turkey protein to get some protein in me. Could this cause it??

Desperatly looking for answers!  I was so excited all was going well til this call.

Thanks guys!
Don't know what I would do without your info and caring!
Dragon Tamer

[HARRYBEADS]

I don't think it's that big a deal, but tell the Doc your concerns. He may figure you have completed enough of the therapy to keep the SVR. How far along are you?
  Half way through my round my ALT spiked to 130 after that it went down each test to 36 on the last test. Exercise may have caused mine to jump , I was tired of feelin tired so I exercised quite a bit but just got more tired. If I was you id stop all the non perscribe meds and vitamins and such and if that does not lower it and the Doc tells you to lower it or what ever, seek anothers opinion. Let him know what your up to he'll understand and respect your concern and if not friggem, it's your time to be concerned about your self.

Hope your ALT lowers
Harry

[CoWriter]

How strange....the numbers on that table are not showing.  The table tells you whether the ALT elevation is mild, moderate or marked.  

You can see it on page 91

http://www.projectsinknowledge.com/Init/G/1628/1628-Handbook.pdf

[CoWriter]

One of the tables didn't show up so I'm going to try writing it a different way.  Let's see if it works.


DEFINITION OF MILD/MARKED AMINOTRANSFERASES IN LIVER DISEASE.

*Numbers in table refer to multiples of the upper limits of normal for the individual enzyme.

ALT or AST
Mild  20

Alkaline Phosphatase
Mild  5

[CoWriter]

This info comes from a side effect management handbook written by some of the top hepatologists.  Even though the ALT elevation is considered "moderate", I think your doctor is doing the right thing by being this careful.  There's always the possibility that it could be caused by an autoimmune proccess....especially because you're having THYROID problems.....thyroid problems are autoimmune.


http://www.projectsinknowledge.com/Init/G/1628/1628-Handbook.pdf

(page 91)

ELEVATED ALT/AST

WARNING:
Hepatotoxicity, including fatality, has been observed in interferon-treated patients. Any
patient developing liver function abnormalities during treatment should be monitored
closely, and if appropriate, treatment should be discontinued. When hepatotoxicity
occurs, it is usually seen in the first 5 to 6 weeks of treatment.

Interferon-based therapy is contraindicated in patients with decompensated liver disease.  There are reports of worsening liver disease, including jaundice, hepatic encephalopathy, hepatic failure, and death following interferon therapy in such patients. Therapy should be discontinued for any patient developing signs and symptoms of liver failure. Patients with a documented rise in aminotransferase levels during interferon therapy should be further evaluated for AIH (AutoImmune Hepatitis) and drug toxicities.

ALT/AST ELEVATIONS AND LIVER DISEASE
Liver diseases themselves may be associated with mild, moderate, or marked elevation of ALT and/or AST levels.   Although moderate aminotransferase elevations are nonspecific, certain liver diseases tend to be associated with either mild or marked ALT elevation.


DEFINITION OF MILD/MARKED AMINOTRANSFERASES IN LIVER DISEASE.

Test                         Mild*                      Moderate                      Marked

ALT or AST              20

Alk Phosphatase      5

*Numbers in table refer to multiples of the upper limits of normal for the individual enzyme.



LIVER CONDITIONS ASSOCIATED WITH MILD, ASYMPTOMATIC ELEVATION OF
ALT/AST

Common:
Fatty liver and NASH (40%–60% of cases)
Chronic HCV (20%–40% of cases)
Chronic HBV
Alcoholic liver disease
Hemochromatosis

Uncommon:
Drug-induced liver disease
Autoimmune hepatitis
Alpha1-antitrypsin deficiency
Wilson’s disease
Miscellaneous conditions


LIVER CONDITIONS ASSOCIATED WITH MARKED INCREASE OF ALT/AST

Acute viral hepatitis.
Drug-induced hepatitis, especially acetaminophen (Tylenol)/alcohol and antiretroviral therapy.
Hepatic ischemia due to shock or severe right heart failure.
Acute biliary obstruction.
Budd-Chiari syndrome.


MANAGEMENT STRATEGIES
1. Monitor liver enzyme levels in accordance with package inserts.
2. If aminotransferase levels flare, reassess for other causes and consider dose reduction or discontinuation of therapy.


REFERENCE
1. American Digestive Health Foundation/American Liver Foundation. Viral Hepatitis Facts:  Approach to Elevated Liver Enzymes. HBV087R0.

[Trish77]

I actually haven't been waiting that long.  Took me a week to get in to see the endocrinologist after my family doctor saying it would take two months and it looking like I'd have to go to Toronto instead (an hour away).  Then two days later I was off to the local hospital for the thyroid test. The results take a week to process and I should have them by Friday.  This is like lightning here in Canada. :)

If you don't have confidence in your doc, you have a ways to go on treatment yet and an UND to maintain .. and if you can get a second opinion, I'd strongly consider it.

Good luck!

[DragonTamer]

Thanks everyone as usual I can trust the info here more than my doc, whom I believe does jump to conclustions, as many of you suggested.  As I will not see them until Wednesday and my shot is due tomorrow night...what I will do is skip ONLY tomorrow But  take the shot Wednesday....after he does the new labs.... just to keep him off my case... he sometimes calls me at 7:00Am and can go on and on...he really made my head spin this time. He is a tad high strung I think he genuinly cares but he better know what the heck he is doing!! Because I am UND and in no way want to jepordize that!

I have looked into missing a shot... and taking it the next day, in my billion minute (only an owl could read) words of instructions, with the interferone...it said that being late on one shot, should not mess things up.   As I read each and everyone of your posts you all made perfect sense. I know in my heart and everything I read the interferon is raising the liver enzymes.... Does this sound reasonable... to just be late for the shot but definately take it after the lab work is done the next day?

The thyroid is still an issue,,, I too am waiting to hear about you Trish!   My free 4 and tsh are fine but still no results on the free 3???? It has been almost 2 weeks and they are usually really quick about these things. I do not have the shakes or sx you had Trish...so I am wondering if he is jumping to conclustions again????  It seems you have been waiting foever! Hoping we both get answers soon!

What I am feeling, especially after all your support and info is I have to start getting a little tougher with my doc!  My NP, whom I love and is my rock, is going out on medical leave and I am going to miss her more than I even know yet! She has been nothing but positive....had she called with those numbers she probably would not have made such a big deal about it as he did. And would have encouraged me in a calm mannor....he always has to end sentences like your doing really welll....BUT...that doesn't mean it will continue...     I am sure many of you have been there! I certainly have learned even before this nightmare, to be pro active with my doctors. This guy needs a little more active methinks!! ;)  :)

Well thank you for giving me the support and courage and ammunition to simply say NO...to an entire missed shot... I will give him the day.... and that is it! And will not reduce unless the thyroid is really an issue.   Trish I'm very curious  to see what happens with you...keep me informed sweetie! I hope you and everyone are hanging in there and hanging on to Hope and What ever beliefs keep you going!

I start school on Wednesday so actually I was happy not to start my first day as a zombie, after the Tuesday night shot...that was the only plus I was thinking of...but I am not taking any chances of losing SVR for anything!  

Love and thanks to all!!!
Dragon Tamer

[jmjm530]

Read a few of the other posts and I am skeptical that you will be able to work with your current doctor given what appears to be an inexperienced reaction to elevated enzymes which often do occur on treatment. If possible, better to find a doc you don't have to educate but who can educate you. If he reacts this way re your elevated enzymes, how do you think he will react when other blood values change down the road in a pattern consistent with treatment but a pattern that may seem alarming to someone who isn't a liver specialist and doesn't treat large volumes of patients.

[jmjm530]

It most probably is the interferon, but your elevated ALT is not unusual, nor is it that much of an elevation as ALT does not follow a linear progression. In other words, ALT 100 is not twice as bad as ALT 50.

Bottom line is that others in a similar situation have been able to continue on full meds.

My suggestion is that you fine yourself an experienced hepatologist ASAP for a second opinion. This "skip a shot" and see what happens strategy will probably result in not only a skipped injection but in an unecessary reduction in interferon which will reduce your chances of SVR.



-- Jim

[Trish77]

I surely don't know much about this .. I've been reading up  and did find some inferences that suggest interferon can start causing the liver to deteriorate in some cases.  Cocksparrow's comment on autoimmune hepatitis took me to another page:

http://digestive.niddk.nih.gov/ddiseases/pubs/autoimmunehep/

It mentions how to test to see if this is becoming a problem.  Maybe you can ask your doc about some of these things.  Post to Dr. Dietrich, he's gotta be back from vacation soon.  (Assuming that's where he is.)

One of the comments on here is that those with Type 1 also tend to have other autoimmune conditions such as thyroiditis, which is where you and I are at right now.  I only bring that up to say .. keep looking into this.  When my hands first started shaking, I figured another weirdo side effect.  Then they just kept getting worse until my equilibrium got wonky and then I figured.. hm, maybe I need to look into this a little more.  Glad I asked here and glad I talked to my doc about it.

I surely don't want to scare you.  I want to say I think Cocksparrow's words are wise to ask more questions and find out what's going on.   Skipping a whole dose would scare me too ... however the adage is kill the virus but not the patient.  Take it a step at a time.  Wondering if a dosage reduction would do more than skipping a dose but I don't have a clue because I don't understand the bigger picture here.

I'm waiting on my thyroid test too, sugar.  So we're waiting together.  After reading your words, I'm going to ask about my liver enzymes too.  Just to be sure.  I just got off four weeks of interferon dosage reduction, btw...back to full dose this week.  I'm at Week 26 now so not nearly as scary but still hate any dosage reduction.

Hang in there.

Trish

[lolitriqui]

hey; you have gt2; very  likely you get rid of your bug; i recommend not to skip a shot;  the better hepatologists are very much against missed doses; compliance is a must. wouldn't worry too much about the enzymes right now; ciao
C.

[Rockerforlife]

LFT`s are known to fluctuate while on these tx drugs...no biggie...just keep on shooting.

[Rockerforlife]

See another Doctor if he insists on you lowering your dose...simple.

[CockSparrow]

Hi DragonTamer
Firstly I am not a Doctor, I can only say what I would do in your situation.
Run everything past your Dr first.
In my view your Doctor is panicking way too early. An ALT of 140 is nothing. Mine have been way higher 220 and that is without IFN. Anything between 50 and 200 is normal for HCV and should not be of much concern.
That said they are going in the wrong direction I would want to keep an eye on them but skipping a dose is not something I would readily do. Its SVR sabotage.
And I certainly wouldn’t do it if my ALTs were only 140. Hell that’s normal for me.

Reducing your dose after you have become UND is less of a concern than if you had to do it while still being detectable. A dose reduction is way more preferable than missing a shot altogether.

Now all this is based on only your ALTs rising if some of your other enzymes are also rising such as GGT or Alk Phos then your Doc may be seeing some sort of Auto Immune issue happening.
It would be better if you posted all your LFTs as this would give a clearer indication.
It would also be good if you posted your WBC and Neuts.
Its hard to base anything on a single Blood test marker.

I think you need to discuss this with your Dr in greater detail.
Missing a dose is SVR sabotage, but the last thing you want is to replace HCV with AutoImmune Hepatitis. You wont have achieved much.

It might be an idea to see another Doctor and get a second opinion, but that could depend on how long that takes to organise.

Hows that for I wouldn’t want to do it, but still would.

All the Best
CS