hello ev1, have been getting myself mentally prepared, can confirm i am Genotype 1, have crygloubin(sp?), RA pains in joints. NJ Fem 59yrs old
My Gastro Doc asked how soon I wanted to start treatmnt, had ultrasound already, i've been taking 500mg Naproxen & 200mg Hydroxychloroquine for what i thought was RA (maybe it isnt?).
My job is too stressful already, 10hr shift 4days a wk - don't know if i will be able to handle it, my skin looks like terrible; is it the meds or the disease? Cut my hair earlier this month, oh well. Sometimes fatigue knocks me out (but then it goes away). So glad u all r here i can feel the support, i ws lurking; getting info - would like to know: what seems the best combination of drugs w/PegInterferon? Have read here about possible new drug coming, but not sure if i wanna wait. appreciate any response - thanks
I am not certain what you when you ask what seems the best combination of drugs with Peg? The SOC for current treatment is a Protease Inhibitor (PI) with Peginterferon alfa 2b (or 2a) and Ribavirin.
There are two PIs: Incivek (telaprevir) and Victrelis (boceprevir) with very different side effect profiles and medication regimens. Deciding which one depends on a lot of things.
Do you know if you are Genotype 1a or 1b? How about the stage of fibrosis you are? Have you had a biopsy? Knowing what stage of fibrosis you are is a huge determinant for treating for a lot of people.
When you say you have RA pains do you mean you are actually diagnosed RA and currently taking RA meds or immunosuppressants. If so I would treat with a Hepatologist or be sure your GI collaborates with your Rheumatologist. I would get an accurate diagnosis for your other condition if it is not RA. I just think ideally you want your other conditions well managed prior to walking into treatment and taking anti-virals.
Just thought I would toss all that out there. The main thing that jumps out at me is your job situation. If it is too stressful already then having flexibility such as time off as well being able to afford doing so is a huge plus during treatment. Especially since there is no real way to know how long you will have to treat is based on your response to the meds. With one PI the is 24 weeks & the max is 48 weeks. Many people work the entire time they treat so don't get me wrong. It is just something to consider.
Obviously this is a lot to consider that hopefully your doctor will discuss with you when you meet and talk about the how to proceed. Plus others will have insight and experience to offer as well.
"Genotype 1, have crygloubin(sp?), RA pains in joints. NJ Fem 59yrs old
My Gastro Doc asked how soon I wanted to start treatmnt, had ultrasound already, i've been taking 500mg Naproxen & 200mg Hydroxychloroquine for what i thought was RA (maybe it isnt?)."
The current recommended treatment for people with Hepatitis C Genotype 1 is a triple med. treatment consisting of Interferon, Ribavirin, and a Protease Inhibitor (Telaprevir or Boceprevir).
You said you had an ultrasound. Did you have a liver biopsy to determine how much liver damage/liver fibrosis you have? Knowing the amount of liver fibrosis you have is important, especially if you are considering waiting. But it is important anyway because those with cirrhosis treat for 48 weeks whereas some with lesser liver fibrosis can treat for 24 weeks (depending on various factors). If your liver is at Stage 3 or 4, treatment becomes urgent. The worse fibrosis you have, the more difficult it is to treat in terms of complications and side effects, and the SVR rate is also lower in people with more advanced liver fibrosis. Another thing to keep in mind is that liver fibrosis tends to pick up speed as we age, so a person could advance more quickly from stage to stage as they age.
Hepatitis C cause a myriad of extrahepatic manifestations, one of which is cryoglobinunemia. Hepatitis C also causes arthritic type joint pain and aching. I am not saying that Hep C caused yours, but I am saying that Hep C is known to cause those two conditions. When people with cryoglobinunemia are treated for their Hep C, the cryoglobinemia is generally resolved. Skin issues and fatigue can also be extraheptic manifestations of Hep C. If it was me, having noticeable and problematic extrahepatic manifestions would be a reason that I would want to treat sooner rather than later. I will include a link to extrahepatic manifestations at the bottom of this post.
If you already have extrahepatic manifestations such as cryoblobinemia and arthritic type pains, and are on the medications you mentioned, I would think it would be advisable to have a Hepatologist manage your care, (not just a Gastroenterologist). If it was me, I would want a liver specialist (Hepatologist) to manage my care. They are more knowledgeable and experienced in managing Hepatitis C and its complications.
"My job is too stressful already, 10hr shift 4days a wk - don't know if i will be able to handle it, ....."
As Idyllic noted, the medications can cause a lot of side effects. Some people are able to work throughout treatment but many cannot work. If I was you, I woukld try to have some plans in place in case you cannot work. Can you work part time, shorter hours, fewer days, flex time, work from home, etc. Can you get a desk job while treating. Can you use sick time, vacation time, accumulated time off, comp. time, etc. Can you get short term disability leave or long term disability leave. You can apply for Family Medical Leave but that is unpaid leave, I think. If you take any type of unpaid leave, be sure you keep up with your health insurance payments. You need the insurance.
"would like to know: what seems the best combination of drugs w/PegInterferon? Have read here about possible new drug coming, but not sure if i wanna wait."
As noted above, the current recommended treatment for people with Hepatitis C Genotype 1 is a triple med. treatment consisting of Interferon, Ribavirin, and a Protease Inhibitor (Telaprevir or Boceprevir). The treatment time is either 24 weeks or 48 weeks depending on response to treatment and other factors. The cure rate is good with the triple med treatment, around 75%, higher for some individuals depending on various factors.
Personally, I am not a fan of waiting, especially when one already has what are most likely extrahepatic manifestations of Hep C. You are 59 years old. Liver fibrosis tends to accelerate as we age. People have gone from Stage 2 to Stage 4 in as little as 2-3 years. Hep C affects the entire body, not just the liver. At 59 years of age, one can develop other medical problems/conditions which may make treatment difficult or preclude one from treating. Preferably, a person would want to treat before developing some other disease (autoimmune, cardiovascular, cancer, etc.) that may make if difficult to treat or may preclude someone from treating. In addition, no one knows when the new drugs will be available to people. It could be 2 years or it could be 5 years. No one knows. Also, no one knows for sure how effective those new drugs will be on certain Hep C populations.
When to treat is a personal decision. It should be based on solid information so try to learn as much as possible about Hep C, the extrahepatic manifestations of Hep C, Hep C treatment, and the side effects of the drugs. Then hopefully you can make an informed decisions weighing the pros and cons of treating now or treating later, taking into account all of the possible consequences of waiting.
Just for the record, I was diagnosed with Hep C Genotype 1 in July 2011. I had a multitude of extrahepatic manifestations. I started treatment on Sept. 26, 2011. I ended treatment on Aug. 25th, 2012. The extrahepatic manifestations that I had are now gone. I am cured, having achieved a sustained virilogic response (Undetectable for virus at 24 weeks post end of treatment). I feel great, much better than I have for 20 years. (I had retired early due to the extrahepatic problems I was having ..... Now that I have completed treatment and no longer have those problems, I could go back to work full time, no problem.)
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