Hepatitis C Support Group
Hepatitis C is a blood-borne viral disease which can cause liver inflammation, fibrosis, cirrhosis and liver cancer. The hepatitis C virus (HCV) is spread by blood-to-blood contact with an infected person's blood. Many people with HCV infection have no symptoms and are unaware of the need to seek treatment. Hepatitis C infects an estimated 150-200 million people worldwide.
I am on week five of Sovaldi/Olysio (Galexos in Canada). It is going well. Geno 1b, null responder, cirrhotic.
I just had my week four vl blood draw and a chat with the nurse, She shared some very good news with me. This combo is very much ground breaking and there is no treatment protocol carved in stone.
I was last told that if my vl was not close to 15 by week 4, treatment would be terminated. Today I was told that they no longer end treatment based on vl response as they are now seeing "late bloomers to vl response" do very well and achieve SVR 4.
The only new concern they are seeing is bilirubin levels start to climb around week 8 but then return to normal once treatment ends. That indicates it's drug induced and not conferred liver damage from these drugs.
She also reported all of her 40 patients that started out on this drug combo are doing very well.
She did report two cases of very bad drug induced sun rash that covers the whole body. This is not a traditional sunburn and can be difficult to resolve. Again she stressed to cover up and use a good UVA/UVB sunscreen while on treatment.
Okay that's it! Happy guy here :)
I just had my week four vl blood draw and a chat with the nurse, She shared some very good news with me. This combo is very much ground breaking and there is no treatment protocol carved in stone.
I was last told that if my vl was not close to 15 by week 4, treatment would be terminated. Today I was told that they no longer end treatment based on vl response as they are now seeing "late bloomers to vl response" do very well and achieve SVR 4.
The only new concern they are seeing is bilirubin levels start to climb around week 8 but then return to normal once treatment ends. That indicates it's drug induced and not conferred liver damage from these drugs.
She also reported all of her 40 patients that started out on this drug combo are doing very well.
She did report two cases of very bad drug induced sun rash that covers the whole body. This is not a traditional sunburn and can be difficult to resolve. Again she stressed to cover up and use a good UVA/UVB sunscreen while on treatment.
Okay that's it! Happy guy here :)
I had my EOT VL done on Tuesday - won't get results until around the 27th. Fully expect to be "less than 2" like last time - they did the same test (QUANTasure). Nurse said that my insurance required the quantasure VL test - I'd have to pay for a qualitative that would show either "detected" or "undetected." Well, dang!
No more sweating about the 4 week result!
I was told they'd pull me 2 4weeks if not responding as expected, but not worrying about that at all because even what we've seen here on DS reveals giving it more time is worthwhile
Glad they updated their policies cause terminating S&O for slow responders make no sense. it was done on INF treatment to spare patients severe side effects which are not the case with S&O.
Also surprised she mentions sun sensitivity and rash which I have never heard of for S&O, but she did not mention headaches???
WG yes Olysio has serious sun rash issues. They mention in combination with Peg/Riba but it's the Olysio that is the major culprit.
Nurse tle me today a patient on S&O just took his kid to school, was in the sun unprotected for about 15 minutes and broke out in a nasty head to toe rash, not sunburn, rash.
See:
http://www.janssenaccessone.com/pages/olysio/index.jsp?utm-term=OLYSIO
Photosensitivity: Photosensitivity reactions have been observed with OLYSIO in combination with P/R, including serious reactions which resulted in hospitalization. Photosensitivity reactions occurred most frequently in the first 4 weeks of treatment with OLYSIO in combination with P/R, but can occur at any time during treatment. Photosensitivity may present as an exaggerated sunburn reaction, usually affecting areas exposed to light (typically the face, "V" area of the neck, extensor surfaces of the forearms, and dorsa of the hands). Manifestations may include burning, erythema, exudation, blistering, and edema.
Use sun protective measures and limit sun exposure during treatment with OLYSIO in combination with P/R. Avoid use of tanning devices during treatment with OLYSIO in combination with P/R. Discontinuation of OLYSIO should be considered if a photosensitivity reaction occurs and patients should be monitored until the reaction has resolved. If a decision is made to continue OLYSIO in the setting of a photosensitivity reaction, expert consultation is advised.
you have done here is very COOL GOOD 'n'shit!!! You so
much deserve SVR-FOREVER!!!
SVR 4-Ever, IMK!
About sun exposure, I sat on the ground Sunday at a picnic, wearing capri pants. My lower legs were in the sun, and in 10 minutes, they were red and hurting. And my eyes are very sensitive, even though I wear sunglasses outside. Had my end-of-week 4 blood drawn 3 days ago, and they did do a VL test, so I'll know about that soon.
Congrats to those that are SVR!
Good luck to those on treatment!
Root rooting for those still fighting for access ..keep hammering on every door you can. It will happen!!
Have a great weekend all :)
The Olysio thing is a whole new kind of problem though
UNDETECT IU/mL
Date May 14, 2014 12:10 p.m. EDT Less Info
Ordered ByRyland ARNP, Kristen L
Note May 15, 2014 12:53 p.m. EDT
------------------------------ FOOTNOTE ------------------------------ HCV RNA is not detected. Result in log IU/mL= Undetected ------------------------- INTERPRETIVE DATA ------------------------- Quantification range of this assay is 43 IU/mL to 69,000,000 IU/mL (1.63 to 7.84 log IU/mL). Testing was performed by the COBAS AmpliPrep/ COBAS TaqMan HCV Test(Roche Molecular Systems, Inc.). "