Anyone else have joint problems 10 year post Hep C treament?

[bs1111]

I was on "experimental" Interferron and riboviron treatment for 2 years in 1999-2001 and now have no cartilage in my shoulders and have chronic joint pain.  I need bilateral shoulder and hip replacements and have acute lower spine pain which causes bilateral sciatica. It seems strange all my joints are breaking down at once.  At 55 years old, my Dr's comment I am young to need joint replacements.  My Doctors don't seem to know what has caused this condition and one said it was probably congenital???  I think it is related to my Hep C treament because that made all my cartilage and skin hurt at the time.  Has anyone else had these symptoms?  FYI no evidence of virus for 10 years now even tho my chemo treatment was called a "failure"

[milliehepc]

To Double Dose:
I know this was an old post but since Dee just posted - I had wanted to say that for a moment I had felt really bad that I asked the question "what would you have done different" and then there were some strong opinions.  So happy how it ended.  Sometimes I feel I don't have a "right" to post because I have not yet started tx though I check the forum on a daily basis.  I know Hector may disapprove that I've not yet started tx but I know I would not be able to work and tx.  Hoepfully, I know its a gamble to wait  a year and half when I can retire.  Then I will  have medicare and still have a monthly income from social security and if things look up and I get SVR I will continue working on a part-time basis.  That is my goal to make tx my full time job.   I hope I make it - I told my hepatalogist that this week and he said I could wait but no more than that projected time I indicated.  (stage 2/3 - 63 years old - tpye 1 - over 35 years).  

Anyway, I just wanted to thank all of you again and again for the invaluable wealth of selfless information you continue to put out - I am always humbled by it.  So guys - I hope you all don't get too tire of me - before I start tx and I earn the warrior stripe. :-)

millie

[Dee1956]

This was a very good, very informative post and it was nice to see everyone agree to disagree in a positive.
None of us know the others full history of treating, treatment week, long term side effects, prognosis so perhaps we should think of that when posting,
Giving everyone the benefit of the doubt could go a long way to more discussion and understanding
Dee

[bs1111]

Not sure what SVR stands for...but I am guessing it's interferron Riboviron treatment.  After I finished 6 months of very intense treatment, I was off it for 6 months and then began a full year of therapy.  After that I still had measureable virus so was called a failure.  It was a tough especially since my husband died during that time.  One year later when I started with a new Doctor, the virus was no longer detectable and remains so now. I feel like I had a miracle happen and my Dr agrees.  I got Hep C from a needle stick when I worked at a hospital-never bothered getting workmans comp since I had good insurance and at the time it was not well understood-called non a non b hepatits!  Never know what the future will bring.  Will keep you and all who are here helping others in my prayers.

[Frank J. Perrotta]

I think that we all do best when we have the others back.

If I would have come on this site and found this info on PIS from the Mayo and all the other research everyone is bringing to the site recently I would have felt EUREKA!!!

Yes, there was a wealth of information when I first found this site but now WoW!

So if it is at all possible lets see if we can keep it all positive and aid one another.

I dont really need to come to a forum, where I come for info and insight, to be told that "youre crazy" or "youre imagining that" as I have been thru all that already.

DD, Hector, bs1111, and just about everyone here (including myself) need lots of healing energy and NOT the opposite.

hugs all,
f

[belle19]

good luck with your treatment on wednesday.  i will be praying for you.  take care.  belle

[DoubleDose]

First off, Hector, I sure wish you the very best, and I feel deeply for the situation you are dealing with.  Just keep focused, and keep doing what you have to do, and hopefully you will come through all of this with a positive outcome!  I am certainly in your corner on everything you are handling.  I definitely am not looking to debate the long term sx issues any further, since there is not much more to say, and I do not even want to harp on a controversial subject.  I understand why you react and get upset...and my issues in no way compare to what you are going through.  Let's just encourage those that need to treat to be very proactive in pursuing that direction...and allow for the fact that those who sustain damage should also push for some good answers, and expect openness from the medical community.  I think Frank's articles that he linked serve as a stark reminder to all of us that the drug companies are not always exactly 'angels', and have been at fault for misrepresentation in the past, and I am sure will do similar things in the future.  They must be forced, in these cases, to be completely factual, and honest, and must be prepared to deal with whatever fallout comes their way when they do , on some occasions, make false or misleading statements.  Same for doctors.  
We all want to know the facts, and understand all of the risks before we undertake any drug program.

To Frank, I do appreciate your commentary as well, and the linked warnings from the FDA regarding the makers of Infergen.  It shines a light on the way that drug companies can really avoid telling 'enough' of a story to really lay out the full risk picture.  Funny thing about your shoulder issue, but that has become one of my bigger problems after tx, increasing every year after ending, and now to the point I can hardly sleep for more than a few hours straight because of deep shoulder pain.  The tendon issues are also showing up all over the place now, in my hands, arms, legs, and neck.  Now I remember all of jmjm's problems with tendonitis after tx, that I did not really internalize at the time.  Its something to really watch, and to be aware of the connection to tx.  I doubt that surgery would make sense for me, since I fear they would eventually be operating on half of my body....Well let's see where all of this stuff leads...and then try to figure out what the options and alternatives are.  You are FULLY correct that the HCV Gurus are stonewalling, and all seem to spout the same company line...'can't be from tx'...while down the street the other docs are diagnosing PIS.   Something's gotta give at some point!  Best of luck to you Frank and let's keep the lines open on this issue.  

Hector....may you have the very best luck possible going forward.  We are ALL on your side, me included.  Sorry for any bad feelings that we may have generated in our earlier exchanges.  

DoubleDose