Bone Damage with Interferon and memory loss

[Hurting1063]

I was reading and noticed a question that a Marsha had regarding bone damage... I finished  my treatment 5 months ago and found that I have a hard time remembering things, my bones also  hurt, I have a hard time sleeping I'm in so much pain, I 'm up to 4 tylenoel a night  and some times that doesn't even help. Iwas recently diagnosed with pantar facitisis (sp?) and have a hard time walking. Is all of this damage to my bones and body coming from long term use of Interferon and rabavin (sp?) If  people are starting to complain about their bones and bodies hurting, don't you think there should be some kind of study going on somewhere.

[orphanedhawk]

http://hcvets.com/

The VA Testimony before the Subcommittee on Benefits Committee on Veterans’ Affairs, U.S. House of Representatives, April 13, 2000, Gary A. Roselle, M. D., Program Director for Infectious Diseases, Veterans Health Administration, Department of Veterans Affairs, state, "One in 10 US Veterans are infected with HCV", a rate 5 times greater than the 1.8% infection rate of the general population."

One in 5 of these Veterans are from the Vietnam era.

A study conducted in 1999, by the Veterans Health Administration (VHA), and involving 26,000 veterans shows that up to 10% of all veterans in the VHA system tested positive for hepatitis C.

Of the total number of persons who were hepatitis C antibody positive, and reported an era of service, 62.7% were noted to be from the Vietnam. The second most frequent group is listed as post-Vietnam at 18.2%, followed by 4.8% Korean conflict, 4.3% post-Korean conflict, 4.2% from WWII, and 2.7% Persian Gulf era veterans.

[nicoloas]

My husband Jeff wanted me to reply back and thank you for the information. We don't know how he got the Hep C, but he was in the service for 21 years and lots of shots and surgry.

[nicoloas]

My husband finished his meds Feb 13, 2012. The fist Doctor we went to and started the treatment did not tell us the affects after the treatment! We so wish we had known.  Jeff is only 52 at time of treatment starting 8-29-11; Jeff was Geno type 1. Worst one to get. Our blessing was stage 2 on liver but load count was over 6 Million. I feel if we would have known the affects after the treatment, we may not have gone through treatment or at least talk about what if no treatment what happens to doing treatment. We are in the prime of our lives and Jeff can't drive his bones ache, he feels like he is 80 and yes he walks as if he is in his 80's. I call him my old man, and we just laugh about it but he is going through many tests to find out why his bones ache, hip gives out, loss of memory, and vertigo. This all started about a month after treatment. Jeff was on three types of meds. This dropped his blood levels extremely low! I would think really hard about quality of life what will happen if no meds, a 2nd option is always a good idea. As it is life is too short and we had lots of plans for traval and as of now Jeff has a hard time in the car (vertigo). I wish you the best of luck and you will be in our payers, Cindy

[diaga]

I am stage 2 and Dr. wants to treat- I am older so am getting a bad feeling about the permanent side affects I know would be certain.. so quality of life issues come forward... do I want to live sick and miserable..probably not, do I want  to  chance 1 1/2 years of waiting for the new treatment that does not have the side affects..  I'm a gambling women, but now the stakes are out of this world... any input?? thanx--- diaga

[willbb]

But, I feel great.
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Nice to hear and congratulations on your SVR....

Will

[DoubleDose]

Though this is primarily an older thread, it should be basic reading for all of us...since it presents both sides of the issue pretty clearly, and demonstrates the grave dangers in some cases of NOT treating HCV, and for others the hazards of having treated.  The post-tx problems all sound pretty similar in those who are affected, and I think we all can see and hear in this thread the agony that both groups have endured.....those with severe liver damage and life threatening consequences from their HCV...their decision to treat was a 'no brainer'....then the other extreme..those that felt fairly good, and had only mild damage and ended up feeling like their life was effectively over...or at least badly damaged.  These are the two ends of the spectrum regarding both sets of risks.  Then somewhere in the middle are those with intermediate level damage who must weigh the risks and make some serious decisions...and need all the straight information they can get to base a good decision upon.  Its a race against time for them....wait for easier less damaging therapies?....treat right now before they accelerate into cirrhosis?  look at the studies on post-interferon outcomes to see what the risks and odds look like???.....OH WAIT...WHAT STUDIES?????   That's just what has been missing.  How can ANYONE make a reasonable risk analysis and subsequent decision when there is literally just about zero hard, concrete data out there from large scale follow up studies...regarding the percentage that end up with long term damage.  This is exactly why I continue to elaborate on this subject.  It is just a simple conclusion that there SHOULD have been many studies done by now...if only to allow prospective treaters to clearly, and accurately assess the 'odds' of damage.  I mean, if large scale, long term follow up studies showed a 2% or a 5% risk of serious consequences from tx...treaters could factor that into their decision very easily.  If the studies , on the other hand, demonstrated a 28%, or 49%, or 82% with serious after tx problems...they could likewise factor that into the decision.  As it is....we have NO clear percentage data to inform decisions, nor to inform those in the affected group of how many others might be out there!  

So, I think the issue is important, and is a very separate issue from treating because one is in an advanced stage with HCV.  Its all the in-between cases that need to know more.  And, sorry to say, there is only anecdotal information out there.  Avoiding the initiation of large scale studies does us ALL a grave disservice.  Its part of the science and ethics of modern medicine.  Anyway, I think this thread is a good, balanced thread on how to approach the issue of long term side effects risk.  Good basic reading for all concerned with HCV and treatment.

DoubleDose