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Old 05-04-2003, 07:10 AM   #1
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Post Post Interferon - Lasting Side Effects?

I feel that after two 6 month trials of interferon, I had side effects that lasted several years. These include severe depression and horrible joint pain. I can't prove it but I feel there is a direct link. I tried to look this up on the web but didn't really find anything.

Interesting to note: I was in two of the first clinical trials. They never tracked us after the day we ended our use. I think they tracked our alt levels, but they never tracked our symptoms. As a matter of fact, they didn't seem to freakin interested in our symptoms DURING the trial.

This is why I am highly sceptical of statistics at this point.

So, does anyone know anything I don't know?

Thank you!!!! Stacey

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Old 05-04-2003, 07:43 AM   #2
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Dear Stacey:

With respect to persistent side-effects of the interferon, I agree with you -- particularly the depression.

I have gone through a year-long regimen of the regular interferon, another six-month bout with interferon & ribavirin, & another, third 13-month course of peg-intron & ribavirin. After the second treatment, I tried to go off the antidepressant medication I'd been taking, but within a month I was so depressed I had to get back on the stuff. Since then I have taken the antidepressants continuously, and now that I've finished the third course of treatment, I'm still on the antidepressant meds. I'm quite frankly apprehensive about what'll happen when I get off them.

The other side effect that has continued to bother me -- more obviously when I was on the interferon than now, but still very bad - is sinus problems. After the depression, this has been VERY difficult for me to deal with. It HAS lessened a bit since I stopped the interferon, but I still have to take meds for sinus/allergy problems everyday.

Personally, if the interferon/ribavirin "cures" the hepatitis, I'll consider the depression & sinus a trade-off that I can live with -- at least as long as the medications help. The doctor told me not to stop the antidepressants til I'd been clear of the virus for at least a year.

Is the depression what is bothering you the most? Have you tried any antidepressants? If so, did they help? Are you still taking interferon treatment now? Are you clear of the virus?

I wish you the best of luck. Surely things will improve for you. I did not continue to experience the joint pains after I stopped the meds, but maybe if you give it a little more time, your pains will lessen & go away. Please let me know how it goes for you, if you get to feeling better or not.

Best to you,
Neeku

 
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Old 05-04-2003, 11:04 AM   #3
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I hear, and have heard from, hundreds of people over the last twelve years.

There are many, many reports of after-effects, temporary and permanent, from interferon therapy.

Your situaiton may or may not resolve. It is hard to find a doctor that will acknowledge this, but there have been studies that have, indeed, documented quality of life issues, joint complications, thyroid problems, kidney and other organ problems, and the well known depressions.

Unfortunately, "cure" is defined soley on the viral load at this point and not on the absence of disease or of symptoms after therapy. A very narrow view at present, given the need for more information on disease and on treatments.

Neurological research is only beginning (pain, depression, cognitive abnormalities) So, we will have to wait and see what that research tells us.

Your experience is valid and hardly unusual. I'll bet it is refreshing to have someone tell you that instead of the pat on the head you might be getting now.

best thoughts,

thanbey



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Old 05-04-2003, 12:41 PM   #4
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Thanks. To make a long story longer :], I will explain why it is so important for me to get this information.

I am on Worker's Comp. I ruptured a couple discs on my job. Worker's Comp does not want to pay for surgery because they said I am "emotionally fragile".

This is based on my medical records for a time period of about three years post interferon.

My lawyer is deposing the doctor who wrote this idiotic report. I told my lawyer that I believe it was the interferon that caused my depressed tendencies, since my medical records were pretty normal before the interferon and at the present time.

But when I go to look for studies to support my opinion, I am not finding anything to support this. What makes me feel more irked, is that I don't really think they have really tracked people's post treatment side effects (at least I know they didn't when I was in the first major medical studies).

And you know what else? Even if I WAS depressed, what the hell does that have to do with getting surgery for my neck? If a depressed person got shot, they don't deserve to get the bullet taken out?

These worker's comp people are the biggest *&*&^^%%% in the world, but I guess that is another forum!!

Thanks all for your input. Sorry to have to drag you through the whole story, but I wanted you to know how actually important finding out this info is.

Stacey
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Old 05-04-2003, 02:53 PM   #5
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hi. did the doctors say you are too emotionally fragile to have surgery, or was there a doctor willing to operate and the insurance made a judgement that did not other than what the doctors recommend?

if CA is like IL, WC lawyers are like SSDI lawyers. they can charge a percentage up to a certain amount and get nothing unless you prevail.

it sounds like you may need one.

 
Old 05-04-2003, 04:06 PM   #6
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Hi. I have a lawyer. I have a doctor who says I need the surgery. WC has their doctor (who is not a surgeon by the way) who says that people who have a history of depression won't feel better after surgery.

I really don't understand that concept because:

a. My current psychological profile says I am fine
b. This is not imaginary pain or an imaginary ailment. I mean a ruptured disc is a ruptured disc.

Does that answer what you meant? My lawyer is going to depose their doctor next week. I just thought it would be nice to have some info that would show him what I feel to be true. I was debilitated from the treatment. I can't prove it though and it is fustrating.

I think (hope) we will eventually prevail. I don't think they can deny a person with a ruptured disc (and I have 2 AND a bone spur on a third) treatment forever. Its very fustrating and demeaning.

Thanks...Stacey
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Old 05-04-2003, 04:35 PM   #7
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I think I may have a California doctor who could talk to your lawyer and, PERHAPS (cause I can't commit others to anything) act as an expert witness for you.

Contact me through the website for more info. Use the domain (hcop.org) and my name to get the email address put together.

I hope this helps,

thanbey

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[This message has been edited by thanbey (edited 05-04-2003).]

 
Old 05-04-2003, 08:45 PM   #8
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hi Stacey, i apologize about responding to your post mentioning that you may need a lawyer .. after just reading it! I recently did 8 months of pegintron/rebetol and have had a few other issues occur along the way.

I wish you the very best and hope that you have good results in search of info concerning post treatment ailments.

if you find some, i hope that you post it here. right now, i barely have the energy to make responses to all the Great peoples posts here.

i wish you the best!

[This message has been edited by Wes1212 (edited 05-04-2003).]

 
Old 05-04-2003, 08:55 PM   #9
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stacey, are you seeing a neurologist, or only a general practicioner and gastro/hepatologist?

 
Old 05-11-2003, 03:49 AM   #10
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Dear fellow txs,
I can't say a whole lot on this because I have posted 4 times this week and have yet to see it go thru. But there are some very good natural remedies that may work for your problems, for instance 5htp for the depression, olive leaf extract in case the sinus problem is fungal, can't say enouigh about garlic. I'll add more info if I ever break this code of getting on the post! Good luck, thansbe is fabulous, by the way. Life is short. Dance naked.
Vicky
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Old 05-11-2003, 11:39 PM   #11
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I'm back!
I am so excided that I finally figured out that I scribbled and had my password wrong!I have so much to say, that I woke up at 1:am and wanted to tell you how good I'm feeling. And to say It's kind of nice being called a newbie, although technically, I'm not , It's just all the rest of my posts went to outerspace because I only know enough about e mail to be dangerous!
First of all, I am basically an herbalist and organic gardner,the only time I go to Drs. Is when I do something painful like fall and hurt myself. The only reason I found out about Hep C is because I was losing my insurance and thought I might as well go in for my 5 to 10 year annual pap test.
By the way I know Dr. Cecil, and he is very good in his field. He tries to make treatment more tolerable by graduating the dose and rarely does biopsys because they are not specific enough to the extent of the condition. I have never had one, passed on it, too risky and painful for my tastes, only two ultrasounds. I would highly recommend him. I guess the only downside is that like most Drs. he has a tendency to down play, or flat out ignore, the sides. He was pretty good though about taking the news that I wasn't taking the rebatol any more. After only 5 days it was making me squirley! I nearly got in an accident on the 7th day so decided only to take 400 mg at bedtime after that and woke to a panic attack, (first one) when my mose was so stuffed up, I couldn't breath, felt like I was suffocating... when the thought occured to me I might feel like this for 6 mos! That was the last straw. I even showed Dr. Cecil a copy of Lost one's post 605 when I first started on tx, showing the histoligical benifits of pegasys mono tx. Of course he did'nt want to take chances with this virus, and I understand it is a tough customer, but I question the concept of treatment at any cost. When the patient is not desperatly ill. After all I told him about how it wouldn't help to treat me for Hep if I was dead from a car crash, or killed someone else on the road, and the panic attack, he still tried to insist I take it. I told him, "Can't do it." Only reason I tried Pegasys was because I just got tired of knowing, and worrying, and as far as I know, this is the only cure to date.Glad to be living in an age of information and so far pegasys. But the more I learn, the less I know. I am waiting on elderberry season, a wonderful antiviral that I have had great success with blocking colds and flus with. Who knows, that,combined with some raw thymus extract and some colstrum? Haven't tried those yet... The world needs more mad scientists. like me who don't believe that toxic effects are alway necessary or benificial. You know who you are!
The main thing is guys is that, Knowledge is power. Now I didn't have much luck blocking the sides with the combo tx, but since then I shot the rebatol tx down, I am feelin fabulous, especially today when I tried noni juice for the first time. It is 50 times stronger than bromalain for it's anti inflamitory properties. My back musclels were in knots by my shoulders. That, and lots of ginger are keeping me away from ibup. The problem with prescrips. is that for every action, there is an equal and opposite reaction, not usually very pleasant, called toxic side effects.
There are a lot of great books out there, if you are trying to keep your head above water on this stuff like I am. I'd like to come through this with my health intact. The thing is you have got to take charge of your own health, like Doug Kaufman teaches on TBN's Sky Angel Network. A Christian station that my Aunt began taping for me. Oodles of info on his show. It is wise to go slow, and shop around to the discount vitamin places, because it can get pricey.
I take a couple of adaptogen herbs which protect the body from physical emotional and environmental stress, as well as schizandra to protect against toxic exposures and is antimutenigenic. I also eat lots of fruits and vegetables, especially watermelon in the a.m. as it is one of the best liver detoxifying fruits. You have go to find what is right for you. Not every thing works for every body. Vitamin World just put out a good flyer that contains a lot of pertinant (sp!) info, it also mentions a substance in it's flier, which is similar to 5htp, which I just started to take, to help with keeping seratonin in the system. So far I am feeling better on it. I was terrified of my genitic tendency toward suicidal bipolar. (Forgot the panic attact on Mom's side. Strange though, how none of the Drs. were a bit concerned.)
There was so much I wanted to let you know about, but I'm getting really sleepy. This stuff does seem to interfere with sleep cycles, so I am experimenting. (The best part of this, is I get to be my own guine (sp!) pig.) Valarian works pretty well and occasionally, melatonin.
It would be so great if we could find a balance between drugs and non toxic alternatives, but most Drs. don't have a clue, and they don't want one.
Sorry I spelled your name wrong THansby, can't see it to check when I'm replying. Thanks lost1 for the research that helped me stick to my instincts. I want to make my own decisions about my health and not just have some Dr. or the drug companys say oops, after the fact.
Life is short. Dance naked. Vicky
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Old 05-16-2003, 08:55 AM   #12
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hi StaceyRoseEllis
i know a person who is still remained deppressed ,and continued having to take antidep.he did say that everything cleared up within a year. hope this helps
keep the faith, bless you............mj

 
Old 05-16-2003, 08:59 AM   #13
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hi StaceyRoseEllis
i know a person who is still remained deppressed ,and continued having to take antidep.he did say that everything cleared up within a year. hope this helps
keep the faith, bless you............mj

 
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