You might look up Dr Burt Berkson Las Cruses New Mexico. I took alpha lipoic acid, selenium, B12, D3 regularly, sometimes milk thistle, for about 5 years before doing trial. I've had very little pain from my Hep C over the years. Who knows if they really helped, but since I had made a decision not to do interferon, I felt I had to try something. I probably will go back on them after my trial. That regimen is SUPPOSED to help heal the liver. It did not stop the progression into cirrhosis, but I have been largely pain free during the time I was taking it.
SuziQ
Zlikster said
Dec 22, 2013
hope u nail clinical trial with Sovaldi mate! :)
i have post tx joint pain too...haven't done RA markers yet (got other priorities). Also pain below (and this time left) rib is back, guess from enlarged liver. Strange on last ultrasound doc said it's enlarged on the left part and before tx it was on the right (where the pain was)...weird.
i do not take anything from meds, except nowork sylmarin pills just to fool my psyche with some placebo effect :) joints in my hips, legs, ankles are painful, but it's bearable.
press your doc to get you into clinical trial with Sovaldi! :)
cheers
mallani said
Dec 22, 2013
Hi Steve,
Welcome back! I assume you've looked at the Sovaldi Trials. Hopefully something will come up for you.
I went to a Rheumatologist about my post Rx aches and pains. I had all the blood tests, XRays etc. He was of the opinion that I had an Interferon-induced reactive arthritis. As Mobic and the other NSAIDS shoudn't be used for long periods in cirrhosis, I'm on Plaquenil (Hydroxychloroquine). This is very good. I'd check with your Hepatologist. Best of luck, and have a happy Christmas. Cheers.
Cinnamon Girl said
Dec 22, 2013
Hi Steve, good to hear from you again! Sorry about all your aches and pains though, and other assorted ailments.
It`s not that uncommon to experience arthritis and similar joint and muscle pains following treatment with interferon, although it might not all be related to your tx. It has been discussed quite a lot here in recent times, and you might find this thread started by mallani (Malcolm) useful to read...
By the way, there are clinical trials currently recruiting in the UK for genotypes 2 and 3, for Gilead`s Sovaldi (sofosbuvir) plus riba, with or without interferon. These are for tx naive or tx experienced, including cirrhotics. It could be worth speaking to your doctor about them at your appointment tomorrow. Here`s the link..
Merry Christmas to you too, and I wish you a happy and healthier New Year.
Thanks for dropping by, do keep in touch.
Steve-o said
Dec 22, 2013
Hi Everybody..... It has been a while since my last confession...................
Anyway,
Been left fallow now for over 12 months after TX failure (12 months Inter/Riba Type 3c)
No further TX allowed in this area.
I seem to have developed rapid Arthritis Symptoms, pain, restricted movement in elbows and thumbs. And muscular pain especially in the forearms. This is in addition to the expected Right shoulder pain due to the Enlarged Liver pressing on some vital nerve paths.
Legs and back also painful but to a lesser degree, add to that the fatigue due to Active HCV & Cirrhosis and all the other wonders I have been left with, Varices etc, I am having a whale of a time.
Has anyone else had this?
What, if anything, brings relief? The Prescribed Gels and pills are very ineffective.
Hope everyone is as well as can be expected, I have a "Seasonal" consultation tomorrow with my consultant, wish me luck.
Hi Mallani,
You might look up Dr Burt Berkson Las Cruses New Mexico. I took alpha lipoic acid, selenium, B12, D3 regularly, sometimes milk thistle, for about 5 years before doing trial. I've had very little pain from my Hep C over the years. Who knows if they really helped, but since I had made a decision not to do interferon, I felt I had to try something. I probably will go back on them after my trial. That regimen is SUPPOSED to help heal the liver. It did not stop the progression into cirrhosis, but I have been largely pain free during the time I was taking it.
SuziQ
hope u nail clinical trial with Sovaldi mate! :)
i have post tx joint pain too...haven't done RA markers yet (got other priorities). Also pain below (and this time left) rib is back, guess from enlarged liver. Strange on last ultrasound doc said it's enlarged on the left part and before tx it was on the right (where the pain was)...weird.
i do not take anything from meds, except nowork sylmarin pills just to fool my psyche with some placebo effect :) joints in my hips, legs, ankles are painful, but it's bearable.
press your doc to get you into clinical trial with Sovaldi! :)
cheers
Hi Steve,
Welcome back! I assume you've looked at the Sovaldi Trials. Hopefully something will come up for you.
I went to a Rheumatologist about my post Rx aches and pains. I had all the blood tests, XRays etc. He was of the opinion that I had an Interferon-induced reactive arthritis. As Mobic and the other NSAIDS shoudn't be used for long periods in cirrhosis, I'm on Plaquenil (Hydroxychloroquine). This is very good. I'd check with your Hepatologist. Best of luck, and have a happy Christmas. Cheers.
Hi Steve, good to hear from you again! Sorry about all your aches and pains though, and other assorted ailments.
It`s not that uncommon to experience arthritis and similar joint and muscle pains following treatment with interferon, although it might not all be related to your tx. It has been discussed quite a lot here in recent times, and you might find this thread started by mallani (Malcolm) useful to read...
http://hepcfriends.activeboard.com/t54889875/post-tx-aches-and-pains/
By the way, there are clinical trials currently recruiting in the UK for genotypes 2 and 3, for Gilead`s Sovaldi (sofosbuvir) plus riba, with or without interferon. These are for tx naive or tx experienced, including cirrhotics. It could be worth speaking to your doctor about them at your appointment tomorrow. Here`s the link..
http://www.clinicaltrials.gov/ct2/show/study/NCT01962441?term=sofosbuvir&rank=2&show_locs=Y#locn
Merry Christmas to you too, and I wish you a happy and healthier New Year.
Thanks for dropping by, do keep in touch.
Hi Everybody..... It has been a while since my last confession...................
Anyway,
Been left fallow now for over 12 months after TX failure (12 months Inter/Riba Type 3c)
No further TX allowed in this area.
I seem to have developed rapid Arthritis Symptoms, pain, restricted movement in elbows and thumbs. And muscular pain especially in the forearms. This is in addition to the expected Right shoulder pain due to the Enlarged Liver pressing on some vital nerve paths.
Legs and back also painful but to a lesser degree, add to that the fatigue due to Active HCV & Cirrhosis and all the other wonders I have been left with, Varices etc, I am having a whale of a time.
Has anyone else had this?
What, if anything, brings relief? The Prescribed Gels and pills are very ineffective.
Hope everyone is as well as can be expected, I have a "Seasonal" consultation tomorrow with my consultant, wish me luck.
Merry Christmas and a Happy New Year to all.