5 years after Pegasys interferon-ribavirin treatment

[charri11]

All of the symptoms that are happening right now came into effect during and after the medication of 6 months on the Interferon and Ribavirin of about 4 or 5 years ago. These affects have never gotten better after I stopped taking this medication.  I am going to write up a memo on the affects or symptoms I am now and have been going through as a summary of things to be reviewed for making a more correct diagnosis, if there is one, of what this on going illness, if it is, that I have been experiencing for the last 4 o5 years and seems to be getting worse. After stopping the medication of Pegasys Interferon (Peginterferon alfa – 2a), in combination with Copegus (Ribavirin),  the immediate symptoms I still had while taking the medication are as follows: Total elimination of any sex drive at all ( was previously very sexually active), a total change of all thinking, mentally, which caused complete personality change that has so far been unchanged, autoimmune system (anemia) has not functioned right with periodic infectious disorders occurring more often than usual-winter time having several bouts with flu type infections including frequent bouts with severe pnenomia- this last year two severe bouts within a three month period.  This next side effect is rather strange and has been misdiagnosed by Doctors as depression. I say that because I have sincerely tried 6 different types of anti-depressants some of them for over a year but still having these bouts I call semi-coma, which I can physically function in a limited capacity but have trouble functioning mentally therefore affecting my work severely. These bouts may last from 3 to 4 days to two weeks and then are sometimes followed but not always by, what I call the full coma which disables me totally both mentally and physically. This affect is so severe that if I try to get up from horizontal position that I stumble around as if I have been drinking alcohol( I have not touched a drop of alcohol or any unauthorized drugs of any kind for 24 years) or something that causes the same effects.  If I try driving I can tell that it is really unsafe so I don’t even attempt it any more. I have been stopped with my driving before so I know it is impaired. So what I do when I am in this so called full coma is sleep and stay horizontal. Sometimes I lose track of complete days, sometime two. When I finally start coming out of it I cannot recall the previous one or two days or just parts of them as I do get up for the bathroom and drink and eat lightly sometime. All the time that I am up during this time is a physical staggering and dysfunction of all physical control. These episodes last between 36 or 48 hour usually and sometimes longer. It usually takes another 24 hours of limited physical activity to get back to a normal routine and back to work. As you can see this has put a real strain on my job at Dell that I have had for 5 years.  
Over the time I have had this going on I have tried a few things myself to try and get better. Since I have gotten into recovery of Alcoholism and drug dependency, 24 years ago, I have been doing a very active exercise program that has really enhanced my life and increased the quality of my life. When I started with the Interferon medication I was forced to quit that exercise program as it brought on the bouts of full coma affects. I tried after the medications over and over to get back to that exercising routine that I so much loved, but it would over and over make me sick with the full coma thing and after try exercise again for about 3 years I finally gave it up completely as of the last 6 to 8 months and this is where I am now. So it is not like I have not tried to get better over this. Another reason I do not think this is depression I am having is that I did have bouts with depression when I was using the medication itself and I would have emotional upheavals that caused be to have weird thoughts and crying spells that I have not experienced since I have taken the medication. So I don’t think what I am having now is depression.  I stopped taking the interferon and Ribavirin medication in November of 2003.
If anyone has any answers for me I would appreciate it.
Thanks, Craig

[otterwatcher]

well yes after successful treatment with Pegasys/riba I too have developed problems similar to yours and was diagnosed with Post Interferon Syndrome which appears to be like Chronic Fatigue Syndrome-I received my diagnosis from my liver consultant 5 years post treatment. My treatment was 10 years ago and while it has got easier that is only due to me managing my energy output which really means doing very little in order to keep on an even keel.I spent the 1st 8 years searching for a cure and on good days would overdo it which could put me into that jetlag/narcolepsy state for days/weeks. It's like balancing in the middle of a seesaw and is not always effective. I do hope you are feeling better now,its a long time since your post!

[flyinlynn]

Hi otterwatcher

You have added a comment to a thread which was last commented on  in April 2012 almost 5 years ago.

I suggest you could start a new thread possibly in the hepatitis c post treatment issues community

http://www.medhelp.org/forums/Hepatitis-C-Post-Treatment-Issues/show/1670

[flyinlynn]

This was the last post by jackmarangi it is doubtful he will see your comment

[jackmarangi]

I had hepatitis C and on interferon and Ribasphere for 2 1/2 months. The only thing that I hated most was Rashes all over my body but after 2 months it got better. I eat like a pig, but have a hard time sleeping at night. I lift weights 4 to 5 times a week. I think my body tolerate the medication and luckily I have 3 1/2 months to get it over with.

[beetfeat]

above comment to charri

[beetfeat]

the symptoms you describe sound like hcv to me  and since you are still infected it doesnt take a dr to figure it out

[sueb777]

A year ago I was treated with peg-ribavirin for 12 months, since that time I have a lot of excess belly fat, previous to treatment I had none.  When I saw a physician at Bastyr (natural health) he mentioned that he had other patients who complained of the same thing.  

Has anyone else had this problem?

[merryBe]

LOL, weight is weight. Maybe you should look things up before you start mocking things you haven't learned about. The substance is irrelavent, weights and measures are standardized amounts.

One ounce is = 28.349 523 grams. In 1958 the US and countries of the Commonwealth (Canada, Australia and New Zealand) defined the mass of the international avoirdupois ounce is defined to be equal to 28.349 523 grams. There are 16 avoirdupois ounces in an avoirdupois pound. One ounce is equal to 437.5 grains. The ounce is commonly used as a unit of mass in the United States, Canada and sometimes in Australia and New Zealand. Online Calculator-Converter converts Ounces to grams (oz to gr) and backwards grams to ounces .

[merryBe]

the other reason liver people are told to keep their protein low has to due with iron overload which is common both during treatment and due to HCV itself.
Excess iron, from too much meat or eggs especially (as they have the most absorbable iron) can become very toxic and do their own damage to the liver.

With the list of symptoms above, I would have expected any good GP to do blood pressure and heart checks first, then thyroid, then move through other glandular and autoimmune conditions.
One thing often overlooked is vestibular diseases. Inner ear anomalies could also explain the majority of symptoms as the dizziness and disorientation can themselves produces lethagy and weakness. The stumbling and feeling like on alcohol, or sometimes feeling as if one is going to fall forward, or off to one side, can all be from ear disease.  I had this condition myself, following a treatment with an antibiotic now know to cause hearing damage.

charri, you might want to get that checked as a possible cause.
another cause can be too much medication. What medications you are on can also wreck havoc. If you don't mind sharing what those are, someone here might know about them.
mb

[CoWriter]

"actually more protein is better for someone with liver disease. protein helps the liver *providing they are not cirrhotic"

Did you know that many cirrhotics suffer from protein malnutrition?  You know why?  Because cirrhotics burn calories faster.  Even when they're resting they burn calories faster.

So many of them end up with skinny arms and legs from muscle wasting.

But I want to clarify something.....

People usually think of protein as a large two inch thick steak and that's not what I mean.  I am also not saying that people on treatment should eat massive amounts of food so they can get a large amount of protein.  Because if they're obese and overeat and gain weight, they may become insulin resistant.....and insulin resistance lowers SVR.  

Vegetable protein is a great option...and for people who can't eat during treatment, using powder protein WITHOUT IRON can make a big difference.

Obviously, always check with your doctor to make sure it's okay.


hmmm....I may write that last sentence on all my posts....LOL
  

[bandman54]

howsit going?

I still don't have my most recent vl... the np said she would call me in a couple of days,
so I am thinking thursday or friday, and then I remember...
she doesnt work on friday.

oh well, at least it wont ruin my weekend.

did my blood labs look ok?

tanks
bandman

[CoWriter]

I am always surprised when someone posts about a problem they're having and end their post with something like .....

"If anyone has any answers for me I would appreciate it."

(as Craig did), and when suggestions are given, others accuse us of "giving medical advice".

In this case, I suggested showing his doctor the list of his symptoms (so he can see they all match the symptoms of low thyroid) and asking him to check his thyroid.  And I provided a link that backs up what I said....so I stand by my "advice".

Interestingly, redrodeo has followed my "advice" on several occassions and I haven't let him down yet.  He knows I never suggest doing anything without first checking with their doctor.  

You two are right....it isn't about giving medical advice or about being right.  It's about all of us putting what we know together and people taking whatever info they can use and verifying it with their doc.

In other words, it's about trying to help.  

[CoWriter]

LOL....I love your sense of humor.  Thank you for reminding me not to take myself so seriously.

[copyman]

actually more protein is better for someone with liver disease. protein helps the liver *providing they are not cirrhotic

[jmjm530]

"CO" is a well qualified, smart and perceptive lady,  but that doesnt make her always right:) Certainly take what's relevant and sticks from her -- or any of us -- to your doc... but seems like a fresh on-the-ground team is needed.

[jmjm530]

Charri,

First, very sorry what happened.

Truth is they really can't predict what interferon will do to us long term and not too many efforts and dollars being put toward finding out.

If in ypur place, I'd try a fresh/ new team -- perhaps the John Hopkins Program -- and maybe they will come up with things to try. Just never give up, keep trying and if one medical team doesnt work out just move on to the next. Docs get bored easily if their initial diagnosis and treatment fails. And thanks for bringing this to our attention. These drugs potentially can have serious consequences

[CockSparrow]

Its not about giving medical advice. Its about providing information that you can then go and verify. Nothing should be taken as gospel off a forum without having it verified.

All i see is good advice
CS

[meki]

Co - I wanna see... *grin*

I love knowledge.

[CoWriter]

I sent you my qualifications.  I hope they will meet with your approval.    

[redrodeo]

Alot of you guys are practicing medicine. And unless you have some qualifications that are not listed on your profiles, I'd be reluctant to offer so much advice. This is not a forum for how much you think you know or what you've read. Please be careful.
Red

[geterdone]

If it was buds in the old days it use to be 4 loose fingers.

geterdone

[CoWriter]

Here you go.  I think you better go over protein content in food.....

http://www.weightlossforall.com/protein_content_from_good_source.htm

[CoWriter]

"There are 28 grams to an ounce"

LOL....to on ounce of WHAT?

[merryBe]

Low protein, not a NO protein diet, you may have misunderstood me there but let me explain..

(OK, to be completely clear and get this out of the way first, thyroid comes to mind yes, except that thyroid is usually checked regularly in followups, whereas ammonia rarely is.) (of course she may have the "oh duh" doctor that didn't keep up on this so good that you thought of it).(it should be an annual check even for non-chemo patients, but who knows these days).

Also, she has been years since tx. Meaning she doesn't or may not KNOW, if she is hasn't been biopsied recently, if she is or isn't decompensated.

To be clear, a low protein diet to an American or European is going to mean giving up their 10 oz. steaks for a 2-3 oz.servings.  Several small serving of protein per day being preferable to one large one with any liver.  However, I stand corrected, certainly, as concerning say someone in India, a low protein diet might mean an entirely different thing there, and I should have thought of that. (I was veggetarian for 5 years, please forgive my lapse here.)

However, and so as to be Entirely clear and
accurate we do need good quality protein to repair tissue obviously.
In fact, even if you had low pituitary, and got on HGH, as I am, to correct the deficiency, without protein no repair would occur. Yet do remember the body is wonderfully made and the liver can combine incomplete protein chains in complex carbs into complete protein chains; so with a little education on our parts plants can substitute for high grade animal sources.
If one is vegetarian one should read "Diet for a Small Planet" to learn how to combine grain sources to obtain complete and digestible protein chains to achieve this.

To furth address your issue is to ask the right question first:
what is a low protein diet?

Well, what you stated above, 60 to 120 grams is still considered LOW protein by most dieticians I know. There are 28 grams to an ounce, so 60-120 gms. is only 2-4 oz. a day!
that is extremely low, lower than I would recommend.
I was told 2 oz per meal would be sufficient for all cell repair, but that's still 6 oz. at minimum or 30% above your recommendation, and still called Low in my clinic....but I suppose it will vary from clinic to clinic. My doctor is Stanford educated however, and not entirely out of touch with current SOC's.

Still, I'm unsure as to why you would think of 60-120 gms as a HIGH protein diet.
It isn't frankly, unless perhaps in some vegetarian cultures, or starved areas of the world.

On the other hand, anything that slows down the bowels, such as white flour products etc. can also increase ammonia levels by virtue of allowing more time in transit for things to putrify.
This is where our lady might want to work on the prebotics etc. I use active yogurt cultures, some patients need to add lactulose or inulin if it is an ammonia issue.
That depends on the levels, the state of bowel health and/or their willingness or ability to devote themselves to a high fiber regime.

To conclude, I don't mind anything you wrote, although I think since the propensity for further fibrosis and/or NASH to develop as we age, and certainly where HCV has played it's part, and given genetics does play a part as well, it still behoves us to be "liver lovers" and not overtax the organ with too much of anything, be it proteins, fats or sugars/carbs.

I do respectfully disagree that one must be decompensated to think this way.

In fact, this would be akin, in my mind at least, to saying to someone without heart disease that they shouldn't watch their cholesterol or saturated animal fat intake. Indeed they should as this prevents the disease!
I also disagree with your assessment of what defines a low protein diet.
While doing physical therapy for a living I also read dozens of books by dieticians and tried to encourage my clients towards more healthy choices, it was one of my hobbies, so I'm not unfamiliar with the territory. As I said, having been a vegetarian and meat eater both, and an organic gardener for 40 years, one learns a few factoids.

mb

[CoWriter]

"2 things come to mind, besides the obvious anemia, one is your ammonia level. Get it checked."

High ammonia is associated with encephalopathy and liver failure.  He said he had all the same symptoms during treatment and obviously, during treatment he wasn't decompensated. Otherwise, he wouldn't have been on treatment since decompensation is a contraindication for treatment.  


"You need 3 BM's a day and low protein diet whenever you have liver disease."

That is NOT TRUE!  Protein is ONLY restricted on people who are decompensated.

Let me show you something......

This article includes a conversation between several hepatologists who are making fun of how dieticians restrict the protein on people who are NOT decompensated.....

http://www.hcvadvocate.org/hepatitis/About_Hepatitis_pdf/1.1.1_Living_With_HepatitisC/SIDE_EFFECTS.pdf

(Page 25-26)

"Alcohol restriction is common with Hep C patients but little attention has been paid to diet. Some patients may notice a marked improvement in their condition if they could assume better control of their diet. Dietary improvements would not only improve health but might also retard the progression of fibrosis in many patients ."

"One piece of practical advice to give to patients is to STAY AWAY from ZANY NUTRITIONISTS. That IS A PARTICULAR PROBLEM because many dieticians advice a very low salt and LOW PROTEIN DIET".

And another Hepatologist says.....

"The typical nutritionist will take a patient with liver disease and limit salt and proteins as a rule in the abscence of weight gain or decompensation. That happens to be the training for dieticians."


(Abscence of weight gain would of course mean that the patient doesn't have ascites.....so they are talking about how dieticians always assume that a liver patient is decompensated and limit the protein intake and that is WRONG!)


"Two: more patients with HCV have low functioning pituitary. the disease seems to effect this gland, although old age, whiplash, and other things can as well.
Get your doc to do a simple blood test called an IGF-1. (insulin growth factor one).
this will tell if you are making enough hormone to repair your body each night."

IGF-1 is used by doctors as a screening test for growth hormone deficiency and excess.
It is useful for the management of several types of pituitary disease, undernutrition, and growth problems.  IGF-1 is NOT a test done to see if you have a "low functioning pituitary".


"If you aren't you will feel 90 years old, and spend way more time prone because you aren't repairing tissue. "

You do realize that PROTEIN is essential for TISSUE REPAIR, right?  And that you recommended a "low protein diet whenever you have liver disease"

Dr Melissa Palmer, a hepatologist, recommends a high protein diet for patients with Hep C.....

"PROTEIN AND HEPATITIS C

Adequate protein intake is important to build and maintain muscle mass and to assist in healing and repair. Protein intake must be adjusted to one's body weight. Approximately 0.8 grams of protein per kilogram of body weight is recommended in the diet each day. Therefore, protein intake should be between about 60 - 120 grams a day in patients with hepatitis C, unless a complication of cirrhosis known as encephalopathy occurs."

http://www.liverdisease.com/diet.html


Forgive me if I seem to be coming on too strong with this topic.  During treatment, increasing the protein intake can prevent fatigue, nausea and severe weight loss.  I consider that very important.  But it is very difficult to get people to listen because of misconceptions and bad information that is passed around.  

[Odin999]

If after first looking into the above useful advice Ammonia and Thyroid, you still don't have an answer consider this:

From Book: Drug-Induced Liver Disease By Neil Kaplowitz, Laurie D. DeLeve
Page 63
Interferon-alpha inhibits the transcription of mitochondrial DNA into mitochondrial transcripts, thus decreasing mtDNA-encoded respiratory chain polypeptides and mitochondrial respiration. Some of the adverse effects of Interferon-alpha, such as minor blood dyscrasias, myalgias, paresthesias, convulsions, and depression, resemble those observed in mild forms of inborn mitochondrial cytopathies.