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

[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.  :)