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.

[Dee1956]

Really good thread. Thanks to all of you who contributed. Dee

[myr1959]

Alopathic medicine has been able to offer so for in the treatment of Hepatitis.

[georgietashi]

Hi I cant believe I have just been reading about the long term effects of interferon, I finished my treatment 5 years ago I have since been told I have fibromyalga feet ache tendon problems, muscle aches arthritis, and odd pains in hands and legs. it seems I am Not alone, this is unbelievable. I had no follow up appointments at the hospital, just your cured off you go. I have liver ache too lovely to read your post I no its a very old thread but you might get it. I wish you all the best my heart goes out to you, and by the way people allso say to me oh you look well.  they just dont understand.

[gator12681]

I think it's wrong to not help with your pain. I heard no to many times. I went to a pain clinic and they had no problem putting me on medication considering all my symptoms.
Check out a pain clinic, that's what they do, treat chronic pain.
good luck
gail

[Willy50]

PS..... I am sorry I spelled your membername wrong.  That was me not paying attention.  : )  Nothing meant by it.  : )

By the way...... it seems to be a cr@pshoot.  I have seen people have differing sides; first 2 times no post tx issues; 3rd time issues.  There are people on this board who have treated many times with no serious issues. I understand why it would seem perplexing to the doctor.  All I can say is that it is not common but withing the range of normal, if that makes sense.  : )

willy

[Willy50]

Keep in mind that this is an old thread, what nygirl wrote was 3 and a half years ago, but yes, I have seen that argument made since then.  It may be partially true, in that for some people even partial doses of TX may be harmful, and so double doses may be increasingly so.  

My view is that for many people current therapy is as safe as they can make it and for it to still be effective (to the degree that it is).  If they watered it down to make it safer if would cure many fewer people.  But yes, for some percentage of people the "normal/safe" dosage it harmful in the longer term.

The issue is that there was no other means of treating people; to save larger numbers of people a percentage was going to have to be exposed to this risk.  I'm not even really sure they understood the risk or the damage.  My hope is that since interferon is moving towards being phased out of HCV treatments, that these people can soon get some help.

If bone loss were as simple to prevent as orphanedhawk mentions, it would seem a shame that the medical community isn't helping people prepare for this.  Only fairly recently has there been a "push" for people to check their Vitamin D levels prior to TX.  I see this on bulletin boards but seldom hear it from doctors.  Hmmmmmmmm.

willy

[rambleon40]

Your comment is flat out wrong - normal doses can lead to bad effects.  It's not just double doses etc, and frankly I am surprised you would write that.  

Before OH gets on here telling me to be positive, I write for those who are young or old and value quality over quantity and are trying to decide whether to treat: "Think long and hard."  

A small number of people on these boards seem to be ardent and continuing advocates of jumping in on interefron, and they seem to minimize the potential side effects, temporary and permanent.

[rambleon40]

Wow on the BMD.  Just wow.  

I will vouch that it does bizarre and painful  things to your joints:  pains that come and go; extreme sensitivities in the bones that come and go; foci of pain and damage that moves from joint to joint month to month.  

I try and stay away from all dairy / milk products, factory red meat, processed wheat, potatos, nightshade veggies, coffee, sugar, etc.  Not only do they inflame my joints and arthritis, they negatively affect my psyche.  Very sensitive to these things post-treatment.    Sounds crazy but that's the way it is.

No spaghetti. No pizza.  

The more green leafy vegetables and fresh (like just made in a juicer) juices I drink, the better I feel.  Try it for two or three days.  

A guy named Pagano wrote a book about psoriasis and psoriatic arthritis outlining a diet that just works.   He admits to not knowing (and not really caring) why - he just knows that it works.   It sems to work.

Medical science is catching up to anectodal remedies on this issue, too.

[Willy50]

It would be mere speculation on my part.  If most doctors are unaware or unable to treat many of these post TX issues what weight would you give to an uncredentialed layman?

I take no joy in posting such things.  My hope is that after a ponderous amount of posts on the subject that someone with the credentials, some ability, and perhaps some information or insight that such threads provide will bother themselves to look into the phenomena of post TX sides.

While these threads may not provide answers they serve as that impetus for the medical fraternity to take some action for this group of people who have been affected.  Until one understand the cause of the damage it is hard to say if prophylactic preventative measures could help or whether some therapies or vitamin/mineral/dietary deficiencies could provide relief, or whether it is damage that cannot be reversed or repaired.

I do not know the answer, but I wish that this would get more attention from health providers or specifically, from those who provide the drug approval.  I wonder if it would be worth writing the FDA and ask for an inquiry.  The drug companies have had ample time to provide an answer and my guess is that they know the answer, or a pretty good idea.  If it were to be 1% or 5% of those who treat, it adds up to a sizable amount, especially considering the resurgence in treating due to triple therapy.

The question to ask the FDA or drug companies is what is an acceptable number or an acceptable percentage of damaged patients?

willy

[orphanedhawk]

One  thought about bone loss during tx: due to this possibility I feel it's important we keep up our intake of calcium and vitamin D during tx, as well as keep walking, or doing other weight baring exercise.

Counter the possible side effects by preparing for them.

[dingdinground2]

I have been reading all these comments about bone and joint pain post treatment-here is my story-I have herniated and bulging discs in my neck, along with mild stenosis and arthritis, I also suffer with lumbar issues, I have been in chronic pain for nearly 14 years with it..  I am unable to turn my head fully to the left, or up and have a constant headache.  My arms, hands, knees, left foot and toes and hips would go numb.  ok, here is the weird part, I am on round 2 of treatment, 1st time peg and ribo only-48 weeks, this time triple therapy with incivek added, 24 weeks.  Both times absolutely NO neck pain, and full range of motion while on treatment.  My doc is baffled by this, she said my pain should be worse.  Any thoughts?

[Willy50]

This link pertains to bone loss as attributed to IFN treatment;

"Decreased bone mineral density after therapy with alpha interferon in combination with ribavirin for chronic hepatitis C "

http://www.natap.org/2008/HCV/022008_02.htm

(title and first paragraph)
"Decreased bone mineral density after therapy with alpha interferon in combination with ribavirin for chronic hepatitis C


   Journal of Hepatology Nov 2000

Jose A Solis-Herruzo1, Gregorio Castellano1, Inmaculada Fernandez1, Raquel Munoz1, Federico Hawkins2

Received 13 August 1999; received in revised form 24 February 2000; accepted 10 May 2000.

"We conclude that treatment of chronic hepatitis C with combined therapy for 12 months may cause a reduced BMD in almost all patients Although this study does not definitely prove that this treatment was the cause of the reduced bone mass found in this group of patients, we believe that physicians should be aware of the risk of this potential secondary effect of the antiviral therapy..... A survey among male patients, aged between 31 and 48 years, who had been treated with either IFN alone or IFN plus ribavirin for 12 months, showed that only patients on combination therapy displayed low bone densitometry T-and Z-scores..... The T-score values were in the normal range in group 1 (0.19±0.6) None of them had T-scores under -1.0. Four of the 19 patients treated with this combination had T-score values below -2.5, that is, in the range of osteoporosis. None of them presented symptoms of bone fractures. The remaining 15 patients showed T-score values between -1.0 and -2.5, that is, in the range of osteopenia."
===============================
(my comment-willy)
One would expect given these results there would be more followup studies.  If someone can find these it would be a good thread to place them in; perhaps they will refute these findings.

Given that there is bone loss it could also explain that some people have dental issues post TX, but perhaps if that is true it could be due to a different/separate mechanism.

willy

[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.
------------------------------------------------------
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

[Mel0706]

After a year of treatment, I wanted to die.  It was awful.  It took me 2 years to feel normal.  I aged so much.  I also looked 70 and felt 100.  I was only 54.  I'm 58 now and not on any meds.  Only leftover from the interferon is memory loss.  But, I feel great.

[R Glass]

<<< Agree with Anne but wanted you to know, I Feel You Brother!

[Anne1717]

Hi - You latched on to an old thread.  To start your own so members will answer you, Click on "Post A Question" - green button at the top.

Welcome to the site and good luck,

Anne

[hogrotten]

I had this treatment 6 years ago...I worked the entire time as a driver for a company that interlined freight. Very physical work. It almost killed me, But the side effects I have now are the worst ! Bone joint pain to the point of surgery, Fibromyalgia, Or the Host of symptoms they have. Insomnia...y'all know. Its this arthritis that's driving me insane. I was 43 at the time I'm 49 now and I feel 110 ! The worst is that people look at me as to say { You LOOK OK ! } I pulled a whammy though, I got the hep c from the mass inoculations that the Gov. Gave recruits so I went to work for them and luckily just made the time frame to be a permanent employee before falling all the way apart..Yes there definitely is long term effects ! I was the guy who always hunted the top of the mountain, Now I cant even ride my motorcycle on short trips...Glad I found this site !

[paen53]

I was dx'd as hypothyroid 6 months post tx and have been on Synthroid since the end of Dec. I could feel a marked improvement and the swelling in my knees has disappeared. I go in for a re-test in a couple weeks to see if the meds need any adjusting. Much as I hated to take any more meds after tx, it's a small price to pay, IMHO, for the benefits I've seen so far.

[2doggiemom]

Have any of you had problems with your thyroid? I had thyroiditis on Dec. 2009, and am still having problems. My Dr. said that the thyroiditis usually happens during the tx but mine started 8 months after I had finished.