4 year post peg interferon treatment problems,please help.

[katrina12]

I found your forum today while trying to find out side effects of peg-intron. I started on the Peg-intron-Reb treatment in January of 2002. I did 48 weeks of hell.I was so sick the whole time. High fevers every week for 5 days after the shot. Bedridden 5 of 7 days out of the week. I had severe headaches, loss of appetite, depression, sore muscles, hair lost, night sweats, memory loss. The doctors said i should get used to it but it got worse and worse. I was one of their first patients that they treated so I think I was their guinea pig. I was put on antidepressants pro-critand a host of other drugs. I lost 20 lbs (I was 130 to start with)  My thyroid is destroyed forever.  I would tell my husband all the time I felt like my brains were frying and now i believe they were.On my 44th week of treatment my 24 year old son passed away. The nightnare only got worse. Most of the time the doctors did not know what to so with me so they simply dismissed me. It's been 14 months since I finished treatment and they say my viral load is undectable. They say I should feel better now and they can't understand why I don't and there is nothing else they can do for me.I had sarcoidois in 1995 and the peg brought it back. The doctors did not know that this could happen, I broght them the information I found on the internet.I take thyroid medicine and paxil every day. I have terrible headaches, Hearing loss and I can't remember anything. My hair still falls out by the hand fulls. I have terrible sharp pains in the muscles of my legs.I can't go back to work and I am fighting to get social security. I am not the same person and I don't look like the same person. Can you help me?I would like to find a lawyer in my area (60 miles outside Chicago)My husband says i am not the person he married 28 years ago. He has had to feed me, bathe me and carry me.  It's a good thing we have a strong marriage.Please help me.K. S

[meki]

I really don't know what sarcoisis (sp?) is.

Could you please explain this?

4 years past tx sounds like you're one of the few who obtained HCV SVR but developed Interferon Auto Immune disease.

I would say that Interferon may have caused some issues for you - but what you are describing is way beyond the effects I've experienced.

Have you had a full blood panel?

Have you been taking synthroid? Have you been taking any needed supplements or vitamins?

I would try and find another doctor if the one you have isn't figuring out what is going on with you.

Interferon is without a doubt nasty --- and there are possible side effects from it that CAN last forever. But that is the risk we all take to keep HCV at bay in order to save our own lives.

I really think you need to consult more doctors regarding your condition.

I don't have enough information to make a full opinion of what could help you.

Good luck - and I hope you feel much better. But I'm glad you defeated the dragon.

Meki

[MrsOckert]

She means sarcoidosis.  It's a very rare side effect of interferon.  You can google and get more info about it.  I developed it during TX, but luckily it cleared up about 6 months after I quit taking interferon.  However, once you develop it you can't go back on the TX again.

[goldenrule]

I posted last week about a lump in my breast.
went to dr yesterday he said statistically, i could not have breast cancer. going to get mammogram next week
wonder if this could be a symptom of Sarcoidosis?????????????

i did 36 of 48 weeks peg/ riba

[interferon_is_silentkiller]

Dr. Russell Blaylock, a board-certified neurosurgeon and author of the books Health and Nutrition Secrets That Can Save your Life and Natural Strategies for Cancer Patients, contributed this outstanding article about interferons, which are used widely for the treatment of multiple sclerosis (MS), hepatitis, cancer and more. If you, or someone you know, are taking these drugs, this article will help you decide if the benefits outweigh the many risks.

By Russell L. Blaylock, M.D.
http://www.russellblaylockmd.com/

Interferons are used in clinical medicine for a number of medical conditions including:

A wide range of cancers
Chronic hepatitis
Multiple sclerosis
Chronic granulomatous disease
AIDS-related disorders
Rarely considered are the effects of large doses of this immune cytokine on brain function. For example, the conventional treatment of chronic hepatitis is interferon-alpha-2b. Despite poor results in controlling the disease and the existence of safer, more effective natural treatments, physicians continue to use this toxic treatment. Of major concern are the neurologic effects of the treatment.

Acute Problems

It is known that interferons have two patterns of injury to the brain. One is acute and occurs within hours of treatment, often lasting for the first one to three weeks of the treatment. This usually includes fever, chills, headache and fatigue.

Chronic Problems

This is followed by a chronic phase in which more serious injuries to the nervous system result. Chronic symptoms can include malaise, lethargy, somnolence, headaches, low-grade fevers, anorexia (loss of appetite) and more serious symptoms such as psychomotor symptoms, cognitive problems, psychiatric behaviors and even delirium and coma.

Brain Toxicity

The severity of symptoms depends on the dose of the interferon and manner of administering the medication. Continuous infusion of high-dose interferons is associated with more severe neurologic problems. It is known that chronic brain toxicities occur at all doses but more so after doses higher than 18 million to 20 million units a day. Most common is severe fatigue.

Even lower doses have been associated with a lack of drive and disinterest in participating in normal activities, a process called psychomotor retardation. This occurs in anywhere from 47 percent to 80 percent of patients. Changes in the ability to think clearly (cognitive changes) are frequently seen in patients treated with as little as 9 million units of interferon per week. The difficulty with thinking reaches a peak at one to three months. This can include a decreased attention span, difficulty concentrating, defective short-term memory and mental clouding.

Studies have described frequent periods of silence and vacant staring, occurring even in mid-sentence. Objective testing for recall and cognitive function have shown an incidence of 17 percent to 50 percent in patients receiving standard doses of interferons. Most of these cognitive difficulties do improve, yet there are reports of persistent impairments lasting up to two years following cessation of treatment.

In some patients the effect is so severe on the brain that patients sleep up to 20 hours a day and during waking periods experience disorientation and confusion. Speech difficulties (expressive dysphasia) and problems with balance have also been reported. On rare instances, these neurological effects have progressed to a demented state. Hallucinations have also been reported.

It is important to appreciate that the patients in the first two categories to be described had no previous psychiatric history. Renault and co-workers, who examined many of these patients, divided the neurobehavioral effects into three syndromes: organic personality syndrome, organic affective syndrome and delirium effects. Patients with organic personality syndrome frequently experience uncontrollable overreaction to minor frustrations, are very irritable and have a short temper.

Depression Common

Those with the organic affective syndrome often describe feelings of depression and hopelessness. They cry easily and have difficulty interacting socially with others. Patients experiencing delirium have a clouding of their thinking, have short-term memory problems and have frequent mood changes. Many become severely agitated, abusive, withdrawn and may exhibit suicidal thoughts, delusions of being persecuted and phobias. Patients having delirium symptoms often had co-existing liver disease, history of psychiatric disorder or previous brain injury.

Severe Reactions in Cancer Treatment

The most severe effects have been seen in patients treated for cancers. In these patients death due to encephalopathy (widespread brain injury) and associated seizures have been described. This may be a result of combined toxicities of radiation, chemotherapy and interferon.

Interferon-gamma is less toxic than the alpha or beta-interferons. With higher doses one can see chronic neurotoxicities, which can include dizziness, slowed thinking, confusion, crying spells, and even symptoms resembling Parkinson's disease.

How Interferon Ruins Your Brain

The mechanism of this injury to the brain appears to involve the brain's special immune cell called the microglia. Normally, these cells remain dormant in the brain. That is, they are sleeping. Microglia cells can be activated by numerous factors, including mercury, aluminum, iron, overvaccination, and brain trauma, strokes, infections (viruses, bacteria, rickettsia) and cytokines such as interferons.

Once activated, microglia can move about the brain secreting very toxic compounds, which include two excitotoxins (glutamate and quinolinic acid). These excitotoxins dramatically increase free radical generation in the brain as well as oxidation of lipids (called lipid peroxidation). These radicals damage synaptic connections, interfere with neurotransmitters and can even kill neurons. In addition, these activated microglia generate other toxic compounds such as prostaglandins (PGE2), which increase brain inflammation.

If the microglia activation is short lived, the damage to the brain is minimal and recovery takes place. Yet, should the activation continue, which would occur with high-dose and long-term use of interferons, the damage could be substantial and irreversible. Protecting the brain with high-dose and varied antioxidants as well as certain metabolic stimulants can substantially reduce this damage. Certain nutrients, such as malate, pyruvate, DHA, ascorbate, magnesium and methylcobalamin inhibit excitotoxicity.

Physicians Frequently Miss Side Effects

Physicians often ignore patient complaints of neurological difficulties during interferon treatments, assuming they are benign and reversible. As stated in the beginning, natural alternatives have been

[mikesimon]

I think I've read this before and it still doesn't interest me. You guys just won't quit, will you? You're pathetic idiots. Mike

[orphanedhawk]

  Please stop repeating this propoganda. People here are ill and under treatment. They don't need you b.s. ing them for your own pleasure, profits, etc.
    I have no choice but to take interferon having a decompensated liver and HCV. You have a choice to not antagonse ill people. STOP NOW!

[mikesimon]

You'd think they could at least come up with a new copy and paste but these guys are obviously too stupid to even manage that. When you see something like this it's like seeing Kennedy and Bush joined supporting a bill - you just know it's got to be bad for us. These posters are dullards at the very best and maybe they're severely cognitively impaired from interferon or blow or reading too much Blaylock or breeding - it's likely bad breeding now that I think about it. Mike

[MrsOckert]

It's not characterized by lumps in the breast - sarcoidosis is usually considered a lung disease tho it can metastasize to other areas of the body - that's even rarer.

During tx I had lumps pop up under my arms, chin and other places.  Not the riba bumps, but actual lumps under the skin.  After awhile they would go away.

It's easy to freak out on tx - until you have all the info don't think the worst.

[l-horn]

Sounds like you have munchausen syndrome.

[desrt]

In regards finding a lawyer: if there was a reason your doctor shouldn't have put you on treatment, you could try going after him, but as I recall (having started tx in 2002 myself) Schering-Plough was doing a pretty good job of warning people what the risks could be from the beginning. If I remember correctly, they even sent me a separate mailing with a large print version of the package insert.
I am sorry you have such problems and will pray for you.

[meki]

Methinks she is looking for an atty for SSI.

It's very difficult to get medically retired from HEPC and interferon tx.

[l-horn]

Interferon made my teeth whiter and my stools more firm. That's just me.

[FlGuy]

Why does everyone pick on poor little Inteferon anyway.  I'm sensing some classic discrimination here, and I don't like it - not even one little dalton.  How come no one ever looks at ribabvirin.  Ribavirin, that nasty insidious stuff has logged on with many names.  Whether it comes by as riba or ribavirin or copegus or the very innocent sounding 'nucleoside analogue with antiviral activity' - everyone gives it a free pass.  But when the finger pointing starts it's always at my little buddy, Alpha - it's always to interferon.  It's just not fair, I tell ya. No one ever says boo about the anemia (but it really bothers you, don''t it, got to be rescued for goodness sake) or the rash or the dry mouth or the uneasy stomach.  No, all anyone ever cares about is some stupid penis that fall off or gets lost somewhere and then blames it on Interferon.  I just want to say that riba has made me stupid as hell and I'm not going to take it anymore.  (OK, a few more tonight and then that's it - maybe).

[Tater_ToT]

LoL....

I always felt like the riba was MORE responsible for the sx than the interferon.. in fact being a previous relapser & having been on 2 different dosages of the riba (but always the same on the interferon)... I clearly experienced the difference...

Good POINT!
:)

[orphanedhawk]

Could the reason why this junk is repeated, is it is being spit out by some hacker's programming? I don't know much about computers but I see messages in my bulk mail,( spam box), that have wording in them from this site. Are these guys using our reactions to sneak into our computers or am I just crazy? Maybe both?

[orphanedhawk]

You always say the right thing; funny and/or kind. Thanks :)

[Catll]

The site is useless:
http://www.russellblaylockmd.com/

I cannot find any information on his site. I would recommend hiring some good developers.

…This doctor has some serious issues. Maybe he has some physiological trauma in connection with his brother’s death.
http://www.wnho.net/medicine_killed_brother.htm

He was/is trying to treat every problem in human body more like a family doctor.
Why he could not treat his brother? He did not treat him and now he will blame all doctors who took responsibility.

After reading this I am really afraid to follow DR. Russell L. Blaylock advices.

But I might discuss some topics with him if he able to communicate without a copy and paste. I have some difficult questions and I need some simple answers….

[CrazyTrain]

I know, lets forget about addressing the original question posted to this thread and once again go back to smacking this Abbas / Russel Blaylock /silentkiller shmuck around again BRILLIANT !

Don't get me wrong I agree the (Abbas/RussBlay/silent etc.) posts are shameful - however put yourself in Katrina's shoes. Look at the direction her thread has taken when she just asked for some help/advice.

Wish I could be of help to you Kat - there are undoubtably some side effect issues related to Peg/Riba Tx. Seems to affect everyone differently.

[Catll]

If Kat got some good responses and she did not ask additional questions it means she satisfied with info …

[Memac]

Did any of ya'll try natural (hollistic) treatments before or after treatments? or Consider them? I have been reading all the Horror stories about these treatments and all the side efeects that last etc. I have just been diagnosed with Hep C, and I don't mind tellin' ya I am scared to death. I have 2 sons still at home to care for and my hubby is a soldier in Iraq not due back for almost a year, and I have no other family other than my children to help me at home. I know I can't ignore it and it will go away. If given the choice knowing what you know know Would you take the treatments ? God Bless you all.


Memac

[Catll]

Tomorrow is my 8th shot and I do not have that many sides yet. I have 1b strain.
The weeks 3-6 were most difficult weeks… had some pains in my legs and low back. …now I do not have pains anymore it seams that interferon concentration does not fluctuate that much and I am pain free now, have a very good mood, do not have any depressions….

The virus is horrible and what is usually good for people without virus might not be that great for people with HCV.(iron supplements, immune system booster, etc ) My viral load went from 200,000 to 1,000,000 (just in 3 -4 years and I have it for 30+ years) … I was trying almost everything… before I went for treatment.

[niceguy2007]

yeah i used homeopathic medicines before starting interferon.  

i had genotype 3 infection for less than 4 years... it started giving me low grade fevers and really bad fatigue.
low viral load and little or no liver damage.

i read symptoms of hcv off the internet and got myself tested for hcv antibody.  then PCR, then went on homeopathic treatment for 3 months.

it increased energy levels and got rid of the fever.  

then i started interferon...the first 3 shots were hell, then it sort of levelled off, causing occasionally bad days but generally okay.

treated for 24 weeks. 3 months post ALT was 25, AST 18.  no PCR yet.

i've made a forum for ppl interested in homeopathy at homeoforum.com

you guys are welcome to join.  guys just be careful about the submission code, its case sensitive so keep your Capslock off.

[niceguy2007]

yeah like i often say here, i'm not anti interferon at all.

in fact, i used to take homeopathic medicines daily just to feel fine.  now i just feel fine without them, thanks to my interferon treatment.

is interferon a cure? you bet.  but it comes at a price.  thankfully, for me that price was just feeling bad sometimes.   but for others, it may be more serious.

[ped51]

will be starting treatment in a week.i work as a courier at fedex.how does tx effect work

[Emilio44]

Hi all

I'm 3 weeks in and no sides travelling 8 hours round trip to clinic every week for first month.  I work fulltime so using a heap of rostered days off and sickies.  Since being diagnosed in Oct 07 I have read literally thousands of tx journies.  Anecdotelly (spell) I would have to say that minimal to no sides is the rule.  That's not to say that some don't have a rough time, but it's not the rule, everyone different i guess.  I'm on the R1626 trial and it could be that I have a reduced Peg dose of 90mg wk  but I don't know.  At my regular support site we have about 8 people just starting or in early tx (SOC) and everyone is going okay, some minimal sides but hey.  So ped don't sweat it mate, you'll be fine. Regards Emi

[Trish77]

An interesting comment.  My first doctor told me what I could expect and it certainly wasn't minimal to no sides.  My next doctor at a respected liver clinic told me straight out to prepare for a year of "hell".  His words, not mine.  Not sure why he'd put his reputation on the line by scaring his patients like that if that's not the case.  Not like I'm trying to scare anyone either... just that it being the norm that there are minimal to no sides all the way through?  I'm not sure that's the case. The people I've talked to who are all the way through tell me different and I have also met those who say they experienced very little side effects, but those are in the minority. I'd rather someone be prepared for how bad it COULD get and make a good decision about treatment than get blindsided when it hits.  

I'm doing about the same as you, Emi.  I started two weeks ago, today is the start of my third week and we started on the same day, different sides of the world.  I've had no side effects and I'm going like a bat out of hell.  However, I'm told it takes awhile for the ribavirin to absorb into your body and I'll see how it goes.

I'm not looking for side effects or wondering if this thing or that thing I feel is a side effect and over-reacting.  I'm simply pushing through and living my usual life .. and at an accelerated pace these days even.  

Glad to know things are going well for you too, Emi.

Trish

[jmjm530]

Emi: have read literally thousands of tx journies.  Anecdotelly (spell) I would have to say that minimal to no sides is the rule
---------------------------------------------
In all due respect, where have you read this? Certainly not here. In fact, those here who used to suggest that side effects on treatment weren't all that bad often used the argument that those posting here are the ones with the most side effects, therefore so many posts on bad side effects. i.e. they were acknowledging the amount of side effects on treatment. I haven't posted this in some time, but at the end of this I'll post an incomplete compilation of threads on side effects both during and post treatment. I don't think anyone could read these threads and say "minimal to no sides is the rule".

Lastly, as far as anecdotals, it should be pointed out that both of you are in trials and therefore do not know what dose Peg you are on, if my understanding is correct. Therefore the comparision is really not exact.

Here are some threads re side effects both during and post treatment. I don't think anyone reading these threads will conclude that the consensus, at least here, is minimal to no sides.

http://www.medhelp.org/posts/show/286686
http://www.medhelp.org/posts/show/286686
http://www.medhelp.org/forums/Hepatitis-Community/messages/965.html
http://www.medhelp.org/forums/Hepatitis/messages/41434.html
http://www.medhelp.org/forums/Hepatitis/messages/41439.html
http://www.medhelp.org/forums/Hepatitis/messages/41446.html
http://www.medhelp.org/forums/Hepatitis/messages/41492.html
http://www.medhelp.org/forums/Hepatitis/messages/41498.html
http://www.medhelp.org/forums/Hepatitis/messages/41506.html
http://www.medhelp.org/forums/Hepatitis/messages/41513.html
http://www.medhelp.org/forums/Hepatitis/messages/41515.html
http://www.medhelp.org/forums/Hepatitis/messages/45385.html
http://www.medhelp.org/forums/Hepatitis/messages/45437.html
http://www.medhelp.org/forums/Hepatitis/messages/45337.html
http://www.medhelp.org/forums/Hepatitis/messages/46376.html http://www.medhelp.org/forums/Hepatitis/messages/46380.html
http://www.medhelp.org/posts/show/303629

[jmjm530]

Fourth line should have read:

"...they were acknowledging the amount of side effects on treatment *reported here*.

[jmjm530]

I am very sorry about all this and my heart goes out to you and your husband.

I'm assuming you've pulled all the stops and been evaluated by top internists utilizing all modern testing. If not, I'd make the rounds starting with at least a couple of internists and let them have a fresh look at things.

If it turns out nothing Western Medicine can do, consider contacting someone like Dr. Zhang in New York City or Dr.? Misha Cohen in CA. Both use herbal remedies. Some here have said good things about Zhang and I know he sometimes lectures doctors on Eastern practices. Dr. Andrew Weil endorses him on his web site. Misha Cohen has written a book with Dr. Gish, a well-respected liver specialist in CA.

Hope the future becomes a little bit brighter.

-- Jim

[moahunter]

I also think Riba is the nasty of the two drugs. Interferon on the surface comes accross as worse, because the side effect is more immediately noticed after the shot. But, personally, I found I had minimal side effects on monotherapy (just Pegasys), whereas when I was on Pegetron and Ribarvirin, it really was a massive difference in intensity.

Interferon is produced by our bodies naturally. All we are really doing is increasing the natural dose. It is Riba that is totally synthetic and nasty IMO (although absolutley necessary for most people).

PS. my brain is not damaged - 2 months post tx and UND, feel great. I feel sorry for those who may have aggrevated another condition during treatment, but then, any drug can probably do this if you are unlucky (didn't bruce lee die from a simple allergic reaction to a inocuous drug?).

[gfre]

Check out  http://www.amarbio.com   which is the website for Amarillo BioSciences to find out about low dose oral interferon alpha.  It has no side effects, and my daughter has been taking it for 8 years for a rare auto immune disease.  She takes 2 lozenges 3 times a day for a total of 900 IU a day.  This low oral dose simulates nearly what the body usually produces in a person who is not fighting a serious disease and it regulates the immune system rather than suppress it. It is so much better than the "high gun" interferon that is given is extremely high doses and goes throughout the entire body, thus having  many side effects. The low dose oral interferon is just supplementing interferon alpha for people who are not producing enough interferon alpha themselves, or are not producing it at all for some reason.   My daughter is doing very well on this and does not have to take other medications for the immune system like prednisone, etc.