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

[flcyclist]

Thanks Eureka, you have a wonderful way of tactfully putting things in the proper perspective.  Hope all is well with you my friend.

[eureka254]

"I have cirrhosis, now, after doing interefron (had autoimmune hepatitis as side effect) .  I don't feel it, I think.  I do feel my psoriasis, psoriatic arthritis, humiliation form grotesque fingernails, losso fenjoyment of all my physical life activities, depression, brain fog and crushing lability"
----------------
I am sorry to hear that you have cirrhosis as well as other health problems that you attribute to Interferon.  Certainly the objective of treatment is to make the patient better not worse, and I am sorry that you feel that was not the case for you. Perhaps you were not well-informed of possibilities prior to treatment, hence your perspective; if that was the case, I am sorry you feel that you were not appropriately informed as to the risks.

It is a good thing, though, that you don't feel your cirrhosis.  I hope you never have to... I'll tell you, though... my husband would gladly suffer with psoriasis, grotesque nails, loss of enjoyment of physical activities, depression, brain fog... all of which he suffers now, but from where he sits, it would all be worth it... if he just didn't have to suffer with the symptoms of and treatments for end stage cirrhosis and hcc as well.  Choice is so individual, isn't it?  Pick your poison, as they say...

"don't forget that some will be long lasting and permanent as is evidenced by folks on these forums"
--------------
Don't forget that some will die from not treating with Interferon in time, as is evidenced by folks who arrive on these forums and disappear shortly thereafter.

[rambleon40]

please excuse spelling errors

[rambleon40]

"Can I just ask... what purpose would it serve to do all these post Tx Sx studies...? "

1)  Allow a consumer to be more informed and to better weigh the risks and benefits.

2) To have tha creaking imperfect governmental safety net make a more rationale cost-benefit analysis of whether the drug should be used at all to treat Hep C, I guess.

[nygirl7]

If you are stupid enough to trust the system to take the best care of you then you're probably better off dead anyway. "

I have never read anything that stupid on here in years. Wait around and ask a few folks who have had a loved one die of this disease if that is how they are their loved one felt when the time came.  Absurd this is all absurd.

[DoubleDose]

I have to really take exception to your comments.  They study almost every drug out there, and the long term effects.  That's why some are taken off the market, ....because they KILL people.  Its not just a case of close your eyes, roll the dice and jump in!  That is horrible advice, and gee, I guess you could tell people to drink paint thinner, or expose themselves to radiation, and hey maybe it will help them out or maybe not...just roll the dice and jump in!  That's all bad advice.  The purpose of long term studies (which I am sure all Pharmaceutical companies are reluctant to do on any drug) is to determine if the medication is more dangerous than the illness, or not.  Why wouldn't ANY halfway intelligent, functioning human being want to know that information.  And your comment  "If you are stupid enough to trust the system to take the best care of you then you're probably better off dead anyway" really is pretty cynical and degrading both to the person you are addressing, and to the future of our medical oversight system.  We just need BETTER federal oversight, and more rigorous studies and testing.  I do not think the choice is between jumping into a "meat grinder" or going off and killing yourself.  That may be YOUR choices of course....that's up to you.

DoubleDose

[willbb]

If you are stupid enough to trust the system to take the best care of you then you're probably better off dead anyway.
--------------------------------------------------------------------------------------------------
Have disagreed with the OP vehemently ,however I agree with desrt,there really is no place on a support forum for that kind of attitude.
Will

[desrt]

The problem is that the patient that deals with their fear by becoming better educated is the exception rather than the rule. Frightened people *want* someone to tell them what to do or at least throw odds and %s at them.
And I take exception to any sentence that contains the phrase "better off dead".

[Troll265]

Can I just ask... what purpose would it serve to do all these post Tx Sx studies...?

They won't happen cos they're not justifiable..

At the end of the day you make yourself aware of the potential risks... NOT expect or trust someone else to do that for you... and weigh that up against the benefit of possibly clearing the virus... and then make your choice... it's really simple..

If you are stupid enough to trust the system to take the best care of you then you're probably better off dead anyway.

Yes... it would seem possible that a percentage of people do in fact suffer long term consequences of consuming synthetic Interferon Alpha.

Roll of the dice champ.... you either take your chance or you don't.

[rambleon40]

correction - "loss of  all my physical life activities" is false.  

"Great impairment of and loss of some" is more accurate.

[rambleon40]

rambleon40:
"Your odds of getting life altering side effects from interferon are worse.   "
----------------------------
eureka254

"Data does not seem to bear that out.  We know from the natural history of hep c that 20% progress to cirrhosis and 5-10% of cirrhotics per year progress to HCC. I have yet to see any data, surveys, or other supporting information that would indicate 'long-term' side effects to be as high as 20% or more of the post-treatment population."
-------------------------------------------------------------

Technically, eureka you may be right and I may be wrong.   However, is there data to show that long term side effects are less?

Compare "1% to 5% of people with Hep C will die of it" to be found at:

http://www.cdc.gov/hepatitis/HCV/HCVfaq.htm#section1

(and don't forget to factor in lifestyle, which I believe may be relevant)



with the percentage of side effects to be found at:

http://www.drugs.com/sfx/interferon-alfa-2b-side-effects.html

(and don't forget that some will be long lasting and permanent as is evidenced by folks on these forums)

I have cirrhosis, now, after doing interefron (had autoimmune hepatitis as side effect) .  I don't feel it, I think.  I do feel my psoriasis, psoriatic arthritis, humiliation form grotesque fingernails, losso fenjoyment of all my physical life activities, depression, brain fog and crushing lability (up and down of my moods) - I don't live depressed, but I am sometiems so bad that i just sit and think of ways to kill myself, or waves of sadness just crash over me and I start crying in public.  

I do wonder if my immune system now eating away at my skin and joints and tendons is doing the same to my liver.  

I was fine before doing interferon - I never thought about killing myself for God's sakes - and only did the treatment after being pushed and pushed by family member "better living through chemistry" doctor.    

[bbj2856]

This medecine is very scarry. I decided the way I could get through it is trust in God . I pray for strength  and his will to make me strong. He is doing that. This is my way I deal with it. I got mine through blood transfusing at  a hospital in late 1970's .  God Bless you all. Make God help us and make us stronger and better. Thanks to all of you for your inf and support.

[eureka254]

I fully support informed consent -- there certainly is less than 100% effort on the part of both patients and doctors, but just like everything else with hcv treatment, physicians who are truly knowledgeable about all aspects are the exception rather than the rule.  It's really not unexpected though, with the frequent lack of expertise we see with treatment, to see that both doctors and patients are less than informed about the potential for long-term issues.

However, I approach the consideration of possibilities from a different perspective.  My husband did 137 weeks of interferon, and he has never been the same.  Granted, he has other health issues that may be contributing to him not feeling good, but I could easily blame all his persistent problems on Inf:  persistent anemia, hearing loss, vision loss, fatigue, joint pain, fibromyalgia... the list goes on... but if his doctors were to all suddenly decide, why, yes, it's all because of Inf... it wouldn't change anything for him... continuing to treat the symptoms after the fact is all we can do... whether or not it's Inf-related is irrelevant now.  Knowing what we know now, would he have not done Interferon? No, doesn't change a doggone thing, he would have done it any way.

rambleon40:
"Your odds of getting life altering side effects from interferon are worse.   "
----------------------------
Data does not seem to bear that out.  We know from the natural history of hep c that 20% progress to cirrhosis and 5-10% of cirrhotics per year progress to HCC. I have yet to see any data, surveys, or other supporting information that would indicate 'long-term' side effects to be as high as 20% or more of the post-treatment population.

[hippygem]

Thanks DD, yes been a long time since been here, been struggling too much to do any research at all and keep up with other forums, struggling to manage the AHCS.

Ive been to rhuematologist, he did bloods, came back week positive RA, so put me on 'plaquenil', was reluctant, so tried acupuncture first, it relieved the intense pain, but thought I had best go on the plaquenil just in case, lasted a couple months, then stomach problems came, lower abdomen, couldnt walk for 24 hours, lasted 6 weeks, so stopped the plaquenil as it isnt to be used if stomach issues.  Didnt like the side effects from it anyway.
Taking fish oil, vitamin D, C, B, magnesium.
Adrenal stress herbs/supplements, for the anxiety/agitation, has taken the edge off, but still need 60mg serepax at night to settle me down.
Also had a low bone density test, dont know results yet.

How long has it been since you stopped treatment? and had your body pains?

Oh Im just 'willing' all this to go away, had enough of it, very distressing.

Ive been thinking that I'd rather live with hep C than do this dam treatment and be where I am now, but thats just my thoughts at the moment.  Im SVR, should be grateful eh.

Nice chatting to you again.

[hrsepwrguy]

It is contraindicated only because of a increased rate of absorbtion caused by the incivek and the increased rate is only like 30%, I discussed this at lenght with my study coor who is a teaching PharmD at UC Denver before starting the use of xanax, that is why I was on a low dose until finished with the incivek, from my expirience the anxiety is not caused by the incivek but from the Inf/riba.

[Dee1956]

Thank you all for your posts, I am worse now than I was when I finished 12 week Incivek I pray it will get better
I was on Xanax too I was not told it was contraindicated, perhaps that is my problem now, withdrawal.  I am grabbing at straws, would love to sleep, have an appetite (forcing fruit veggies now) get rid of this anxiety
Take care and thank you for sharing
Dee

[DoubleDose]

The pain and discomfort is the worst part of the post-tx issue for me.  Your list made me remember last night trying to sleep...your exact list detailed how I felt for the past few days, and was unable to sleep last night because of the pains.  It is deep connective tissue, tendons, bone, you name it...and it seems to be almost everywhere at times.  My spinal column was just completely inflamed the past few days, and whether lower back, mid back, or neck and shoulders, just plain hurt badly.  This has been the on and off pattern since I finished tx, and it seems to get more intense and more chronic, from my perspective.  I am glad that you saw some common tie to what you are dealing with.  The costochondritis makes it difficult to even breath without pain.

Best wishes to you.  Its been a long time since we have heard from you>

DoubleDose

[suezeeque]

Then you know, of course, that many type 2 diabetics simply don't produce *enough* insulin.  Which is not insulin resistance.  :)

[hippygem]

Hi Cowriter :)

I also had insulin resistance with first round of treatment, and thanks to 'you', I reversed it before 2nd round of tx.

xox

[hippygem]

Hi there,
Been a long time since I posted in Medhelp, but was on a google search and got led here, saw your post above with the post treatment side effects, and you solved my problem for me.
I am sure I have the Costochondritis, had ultra sounds/scans, internals, you name it, and the doctors cant find anything wrong with me.
Ive been in pain with my left side, shoulder/neck/arm, lower back, abdomen, rib cage, stomach.
I did a search on costochondritis and it all fits.

Just want to thank you for that, been a mystery.

Im 14 months post treatment, did 48 weeks, interferon/ribavirin, 2nd round of treatment, first round 24 weeks 2004, relapser.  Geno 3.

Now SVR, and now suffering mentally and physically.  Your list I can tick them all.

[CoWriter]

I wanted to mention something else.....

1.  Hep C causes depletion of B vitamins.                                                                                                                                                             2.  Peg/Riba treatment decreases B vitamins.
3.  Metformin can decrease Folate and Vitamin B12.

http://www.ncbi.nlm.nih.gov/pubmed/19042060

Co

[CoWriter]

"I think there's some confusion over terminology...  A person is either diabetic or not.  Insulin resistance is one of those things that a person with diabetes may or may not be."

-----------------------

Insulin resistance is a condition where the natural hormone insulin becomes less effective at lowering blood sugar.  So the pancreas has to produce larger amounts of insulin.  Eventually, the pancreas may not be able to produce as much as it's needed, the blood sugar goes up above 126 and you have now become a diabetic.  In other words, you cannot be a diabetic Type 2 without first becoming insulin resistant.

That means that ALL Type 2 diabetics are insulin resistant.  

Yes, I'm sure.  I taught diabetes classes for three years.

Co

[rambleon40]

Nor do the warning labels say that autoimmune hepatitis is "very common" while using the drug, which are the exact words my local Hep C university hospital specialist used.  

I for instance had elevated enzymes notwithstanding that my viral count was undetectable.  

The drug in and of itself can damage the liver.

It is in the warnings, Hector.  Roche covers its a##, maybe.  The hazard, however, is likely nonetheless understated.  

[rambleon40]

You are right.  When will some institution do monitoring of, say, 200 patients post-treatment and get some percentage for long-term side effects?

I would not even want or trust the pharmaceutical companies to do it.

Given the nature of Hep c,  I would not treat until somebody has done it.