Please read this important study on post-tx experiences***

[DoubleDose]

Sandalwood posted this study in the thread below on long term side effects after tx.  I found this to be a real eye opener, in that it really validates the randon percentages of treaters that are reporting the exact same problems we have been discussing here on the forum.  Thanks for posting this study, because it is very personal, comprehensive, and jarring!  Look at the percentages of the 27 test subjects who report all sorts of issues.  Consider how this random group could be extrapolated out into the entire treating community.  I find the comments and conclusions in this piece to be the FIRST and ONLY that have honestly and thoroughly looked at this issue.  The actual experiences of people after finishing therapy.  For those that scoff at the idea of therapy after effects, or think its only a small, insignificant group....READ THIS STUDY.  

Thanks for finding this study Sandalwood.!!!  Its unique.  Here is the link.  Note especially pages 16-20...and conclusions...


http://www.sprc.unsw.edu.au/media/File/Recovery_from_hepatitis_C_treatments.pdf

I think we have only scratched the surface of the iceberg here on the forum.  Who knows what the real long term issues might really involve, and how many are really affected.  Like people say in the study...Where ARE the studies?  Who did warn any of us of these long term problems?  What are the doctors and drug companies doing to find out what is really the status?   Read and enjoy....or cry...whatever the case.

DoubleDose

[rambleon40]

Nowhere on the warning label of interferon does it say that interferon is a neurotoxin that causes damage to nerve cells in the brain.  Nowhere does it say "we don't know how it works."  Nowhere does it say that interferon amps up your immune system in uncontrolled, unforeseeable ways.  These are relevant and material facts that should be on the warnings.  

The warnings are utterly inadequate.  I read them, closely.  I had no idea that what happened could happen.

According to CDC, Hep C kills 1% to 5% of those who contract it.  Given that some people continue to smoke, drink, use drugs, etc. one has to suspect you have even better odds if you lose weight, abstain form alcohol or use in extreme moderation, exercise regularly, eat lots of fresh fruits and vegetables, and take recognized supplements (yes, even the med research institutions have validated the old wives' remedy found that milk thistle and licorice help).  

Your odds of getting life altering side effects from interferon are worse.  

Interferon combination therapy is a dangerous scam.

I VERY MUCH thank Sandalwood for posting the study and advise anybody contemplating interferon therapy to think long and hard and question your doctor closely.  

If your doctor discounts side effects or can't list them or doesn't realize them, run, and fast.  He or she will not have your back.  And believe me, while you are on treatment, you will need somebody to get your back.  You will likely not be able to fend for yourself.  

[DoubleDose]

Here are a couple of posts that I copied from a forum related to Melanoma and treatment...they were on the topic of Interferon.  Does any of this sound familiar????

Here are the copied comments:

"djblank1 over year ago

this reply is mainly a question for gfmartin. I was diagnosed in 2007 for a stage IV melanoma that metastisized to my lymph nodes. I had the melanoma and the lymph nodes removed and did a year of the interferon. I still have a few of the side effect symptoms such as the bone and joint pains, the brain fuzzy feeling ( forget stuff easily ) headaches and dizzy spells. I have been off of the interferon for almost three years now and the doc's say that all of these symptoms are not from the interferon at this time frame, but cant tell me why I still have them. I was wondering if anyone else out there has side effects long after treatment?
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Guest Posts: 262246Joined: Aug 3, 2010
Guest 6 months ago

I was diagnosed with melanoma and had full lymph nodes removed.  Went thru 5 weeks of iv interferon followed by about 6 months self injection. Did not complete the full 12 months due to both personal and financial reasons.  Yes, I have had the same side effects (plus very bad fatigue) and got the same response from the doctors (although the first year they would tell me that it would take awhile for the interferon side effects to diminish). So i just dealt with it for 4 years after the end of treatment thinking that it was just something wrong with me... thought i needed to take vitamins, exercise, be more positive.. or maybe it was all in my head?  Two years ago I was diagnosed with chronic fatigue syndrome and fibromyalgia which doctor said was likely brought on by the interferon. It's been a very difficult road for the last six years. I get very frustrated when I read that doctors tell patients that symptoms aren't from the interferon.  There are many people that do have problems for a very long time and don't understand what is happening to them or how to deal with it. They really need acknowledgement and support from their doctor... not denial.  Hope you will get better soon. But if you don't or if it takes a long time, be kind yo yourself.. it isn't YOU.. it is the interferon. "



Interesting comments..........  DD

[DoubleDose]

I have done tons of tests as well.  Lots with the Rheumatologist, Neurologist, and Endocrinologist.  I pushed hard for an HGH study, which they did, over a 5 hour period of time, with lots of blood draws and lab analysis.  It was surprisingly in the reference range, and my testosterone was in the low normal reference range for my age.  Thyroid has been corrected since right after tx, to a perfect TSH value.  Nothing seems to help, and nothing seems to really point to the problem.  I have given up on testing for the time being, as I have seen many, many top specialists over the past nine years, with little to show for it but a synthroid prescription.  I think our brains and wiring were essentially 'fried' in a metaphorical way.  Something does not work porperly anymore in my central nervous system, and the immune system is probably over-revved, and haywire most of the time.  Whatever tx has done, it sure does not feel good!!!

[getridofitnow]

I am almost 2 years post tx and feel way worse than I ever did with Hep.  I was UND at 2 weeks and did treatment 26 weeks. At week 15 I had to cut my dose to 50% due to retinal hemorrhaging. After treatment I started feeling better each day until about week 5. I have been feeling bad since. Besides destroying my thyroid I have other issues and I have gone to see just about every kind of doctors there is for help. The last few months I have been going to the Holtorf clinic, they specialize in fatigue and hormone issues. They believe in my issues and are doing all sorts of test. 2 weeks ago they diagnosed me with Q fever. They are now looking for other co-infections.
My testosterone is low, my HGH is low, I have hypothyroid and they did a test called CA4 which came back 4 times higher than normal. Their educated guess is I got it when my immune system was suppressed. I'm not sure if this is the cause of the problem or just another part of it.
Are there others out there that have post treatment issues that have done  test such as hormone, CA4 , lyme, Q fever?

[hrsepwrguy]

Xanax has been my savior since stopping the incivek, I was on a low dose during the incivek due to increased absorbtion, once I stopped the incivek the anxiety went nuts and doc had to increase my dose. Hope you get to feeling better soon.

[nygirl7]

Why dont you get some xanax and some Ambien (or some other meds) to help you out during the end of this treatment?  :)