Aa
Start treatment and have surgery
My husband is seeing doc next week to hopefully start treatment with the newly approved Sofo with RBV and INF. he has issues with his shoulder and thinks he can get surgery for that while starting this treatment. I do not know yet if his doc will prescribe this regimen and even if his insurance will cover it. (Express scripts). From all I have read, for his Hep C genotype 1a, he is going to have to get the INF regardless. Sooooo.....what do you all think. I am so worried about him, when he had is liver biopsy it said he was at a 3/4 ?? Not sure what that means.he has a lot of sensitivity in the area of his liver, and to me, has also appears to have fluid buildup. He looks 8 months pregnant to me, and the way his stomach bulges, i can't believe it is just fat. If it were you would you attempt shoulder surgery while on treatment. When he had his other shoulder done a few years ago, it was a living hell....please please ....tell me what you think. I can't stand to see him in all this pain. He also has much fatigue and sleepless nights and joint pain in general, I try to watch how much Advil he takes, because I know that is not good for the liver.
Best Answer
We went to the apt and it went really well. Almost every question I was going to ask, the doctor answered as he spoke to us. I did ask him what Stage we are at and he said 3-4 and we don't have time to wait for the next set of drugs. He really was excited about Sovaldi and said he is going to a big conference on Jan 9 so he may learn more info from peers. He was concerned about the price and said at $1000 a pill for 12 weeks, we have to be sure we can afford it and check insurance coverage. He wrote out the scripts for three drugs and told us to check the insurance. I asked him about getting him on an antidepressant now, and he said that Zoloft is a good one but to clear it with his primary when we go to see him to get his BP meds refilled. So my hubby asked him, how sick will I get, I can go into work right? The doc said, oh you will get sick, so it will not be easy and once you start, you have to stick to it as prescribed. I told the doc that I told him he would feel sick, but I was too much of a chicken to give him details. The doctor said, that other people have gone through the older treatments for up to a year (or more) and that 12 weeks is so much better, but still you will feel sick. Then my hubby asked about the surgery and the doc gave him a one word answer..."No". Again the doc mentioned the price of the drug and was hoping the insurance would work out, he was worried we might end up with a Hugh out of pocket say, $20,000. So we got home and looked up his insurance, and I couldn't believe it, they will cover Solvaldi and his copayment for 90 day is $50! We have to get on phone tomorrow and let him know we are covered and so next he can go in for the baseline bloodwork, get on that antidepressant, and when all the meds come in, start treatment. I will keep posting and let's hope that nothing changes with the cost in 2014, or you will hear me screaming...I swear I hope that wasn't a typo...but it said, your copayment is $50 and what we will pay is $999,980!
Best of luck with the appt.
Keep us posted.
Advocate1955
Keep us posted.
Advocate1955
Thank you everyone! I am armed with my questions and the apt is at 1:45 tomorrow . Will post to let you know what happens. I mentioned to my husband about going to a hepatologist, but he wants to stay with this doctor, so I won't rock the boat. I researched each of the three drugs and listed what I hope to hear from this doctor, if not, the questions shall come in. I will definitely start off with asking him how much time he has to answer my questions, so I know which ones to make priority. Stay tuned!!!!
I'm a little late to this party, but wanted to add my two cents anyway. You've gotten a lot of great advise and I just wanted to add a little emphasis to some of it. Your husband's gastroenterologist may be adequate, but that level of training is not optimal. My own excellent gastroenterologist immediately referred me on to a really good hepatologist just as soon as he was sure I had Hepatitis C (back around 1990). I liked my gastroenterologist and was sorry to move on, but ever since I have been very grateful that he did move me on up the line. If your husband has cirrhosis or if any complications arise during tx it can be dangerous to proceed without the extra level of education and experience that a hepatologist has. Please consider again whether you really want to start tx under the care of a gastro instead of a hepatologist. The more damaged the liver is when going into tx, the greater the risk of complications arising during tx, and if that happens you will surely be safer if you are in the hands of one who has a higher level training and more specific experience.
As to the shoulder surgery, I also want to urge your husband to consider it very carefully. I've been through a horrible time with both of my hands, with osteoarthritis in the basal thumb joints causing really significant pain and loss of functioning in both hands. I basically de-evolved into a mammal without one of our greatest advancements: opposable thumbs. This problem reached a crisis point three years ago but I was also about to begin my third attempt at tx to eradicate the virus. Having done tx twice before, I knew better than to try joint replacement surgery while on tx. Believe me, there is only so much a mere mortal can bear at once. I treated for 48 weeks, finishing tx in Sept. 2012, and achieved SVR as of March 2013. It took a full year to get most of the way recovered from tx. I still suffer excessive fatigue and some digestive issues, but I think those are from the cirrhosis, which can't be cured. In the summer of 2013 I finally felt well enough to tackle some of the other big issues. In mid-August 2013 I had joint replacement surgery on my right thumb and by November it was functioning far better than before surgery. On Dec 2 I had the same done on my left hand. I'm quite sure I could not have handled this surgery while on tx or even immediately after. I hope your husband can be persuaded to spread these things out, or I'm afraid he may be setting himself up for failure in one or both counts. These things are so hard, and take so much out of you, that its a horrible waste to not give them the best odds you possibly can.
For the pain meds issue, it really depends on exactly what kind of pain and it does require a good doctor's advice. The ground rules however, are no NSAIDs (no aspirin, ibuprofen, naproxen, none of those meds, whether Rx or OTC. Most patients can take Tylenol, but within limits. At doses less than 2000 mg/day, Tylenol is the safest pain med for patients with liver disease, however, at higher doses it can be one of the most dangerous. It can cause even a healthy liver to fail completely and irretrievably when an overdose is taken, so you must read labels carefully. Do not take the full 2000 mg in Tylenol tablets and then add on some other mixed medicine that contains Tylenol in its list of multiple ingredients! If the pain is severe enough to warrant, most liver patient can take narcotics if care is taken about the Tylenol frequently added to these drugs. It also has to be carefully tallied into the daily total.
For arthritis-type pain there are a few other non-NSAID meds that can slowly help to relieve inflammation. I get some relief from both Plaquenil and Limbrel, and a good rheumatologist would be able to advise on this subject. Good luck! Breaking the sugar habit is also a really hard thing to do. I confess to being a sugar addict myself, in a fairly classic sense, with occasional periods of being clean of sugar, sometimes as long as a year, but with frequent relapses back into addiction and resultant weight gain. I'm on one of those binges right now and hoping to get clean again soon. Its hard!!!
As to the shoulder surgery, I also want to urge your husband to consider it very carefully. I've been through a horrible time with both of my hands, with osteoarthritis in the basal thumb joints causing really significant pain and loss of functioning in both hands. I basically de-evolved into a mammal without one of our greatest advancements: opposable thumbs. This problem reached a crisis point three years ago but I was also about to begin my third attempt at tx to eradicate the virus. Having done tx twice before, I knew better than to try joint replacement surgery while on tx. Believe me, there is only so much a mere mortal can bear at once. I treated for 48 weeks, finishing tx in Sept. 2012, and achieved SVR as of March 2013. It took a full year to get most of the way recovered from tx. I still suffer excessive fatigue and some digestive issues, but I think those are from the cirrhosis, which can't be cured. In the summer of 2013 I finally felt well enough to tackle some of the other big issues. In mid-August 2013 I had joint replacement surgery on my right thumb and by November it was functioning far better than before surgery. On Dec 2 I had the same done on my left hand. I'm quite sure I could not have handled this surgery while on tx or even immediately after. I hope your husband can be persuaded to spread these things out, or I'm afraid he may be setting himself up for failure in one or both counts. These things are so hard, and take so much out of you, that its a horrible waste to not give them the best odds you possibly can.
For the pain meds issue, it really depends on exactly what kind of pain and it does require a good doctor's advice. The ground rules however, are no NSAIDs (no aspirin, ibuprofen, naproxen, none of those meds, whether Rx or OTC. Most patients can take Tylenol, but within limits. At doses less than 2000 mg/day, Tylenol is the safest pain med for patients with liver disease, however, at higher doses it can be one of the most dangerous. It can cause even a healthy liver to fail completely and irretrievably when an overdose is taken, so you must read labels carefully. Do not take the full 2000 mg in Tylenol tablets and then add on some other mixed medicine that contains Tylenol in its list of multiple ingredients! If the pain is severe enough to warrant, most liver patient can take narcotics if care is taken about the Tylenol frequently added to these drugs. It also has to be carefully tallied into the daily total.
For arthritis-type pain there are a few other non-NSAID meds that can slowly help to relieve inflammation. I get some relief from both Plaquenil and Limbrel, and a good rheumatologist would be able to advise on this subject. Good luck! Breaking the sugar habit is also a really hard thing to do. I confess to being a sugar addict myself, in a fairly classic sense, with occasional periods of being clean of sugar, sometimes as long as a year, but with frequent relapses back into addiction and resultant weight gain. I'm on one of those binges right now and hoping to get clean again soon. Its hard!!!
Hi Faithdove,
Here are some questions that I have posted in my journal. I combined some questions that HectorSF and Orphanedhawk, two other forum members had posted in past threads, and you are welcome to use them, modify them to suit your purpose when you and your husband see his doctor next:
http://www.medhelp.org/user_journals/show/615811/Preparing-for-first-appointment-with-hepatologist
It may vary from state to state, but here in Washington, I believe one's BMI needs to be under 40 in order to be considered for a transplant. There are many other qualifying criteria as well. My guess is that your hubby can only handle one thing at a time, so it may be good to start with one or two changes at a time. For example, start incorporating a healthy, liver friendly diet first. Reduce or eliminate sugar next. Restrict red meat and iron supplements next. Lower sodium next. And so on....
Be aware that Interferon and Ribavirin both have significant mental health side effect possibilities. Both can cause depression and anxiety, and it sounds like your hubby may be having some struggles with one or both already. Some doctors will start a patient on a low dose of an anti depressant or an anti anxiety before starting treatment for this reason, to help with the negative psychological side effects.
Really, it will take a good hepatologist to guide the process of which health issues to address first.
Keep us posted.
Advocate1955
Here are some questions that I have posted in my journal. I combined some questions that HectorSF and Orphanedhawk, two other forum members had posted in past threads, and you are welcome to use them, modify them to suit your purpose when you and your husband see his doctor next:
http://www.medhelp.org/user_journals/show/615811/Preparing-for-first-appointment-with-hepatologist
It may vary from state to state, but here in Washington, I believe one's BMI needs to be under 40 in order to be considered for a transplant. There are many other qualifying criteria as well. My guess is that your hubby can only handle one thing at a time, so it may be good to start with one or two changes at a time. For example, start incorporating a healthy, liver friendly diet first. Reduce or eliminate sugar next. Restrict red meat and iron supplements next. Lower sodium next. And so on....
Be aware that Interferon and Ribavirin both have significant mental health side effect possibilities. Both can cause depression and anxiety, and it sounds like your hubby may be having some struggles with one or both already. Some doctors will start a patient on a low dose of an anti depressant or an anti anxiety before starting treatment for this reason, to help with the negative psychological side effects.
Really, it will take a good hepatologist to guide the process of which health issues to address first.
Keep us posted.
Advocate1955
i did clear the hep c virus, and it has been a god send for my ms. i couldnt agree with you more, movement and ressistance exercise, along with a good diet has done more for me than drugs. i am ppms thus my forum name, and DMDs do nothing for me. Enjoy the holidays!!
barry
barry
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However....I've decided to ask my hep dr to let me treat regardless. Results show a 15/20% less effectiveness with Solvadi/Olysio if positive with Q80K but as far as I can see from other (AbbVie) trials that makes them pretty much comparable. I'm dead set on not treating with RIBA much less inf.
I have appt tomorrow so will see what he says...