Hep C Treatment Blog
December 30, 2012
Well, I have been very bad about keep up this post but really once you are on this therapy and it has cleared the virus and you are past most of the bad symptoms, there is not much to post. The day of or after my shots got better and sometimes were kind of bad but sometimes just very sleepy about the afternoon of the shot.
Well, now I do have some news. About 6 weeks ago my doctor called me in and told me that I was his first failure to the triple therapy. What is weird is I am his healthiest, and the only with all three H’s: Hemophilia, Hep c and HIV. Not sure what to think but he is going to do a endoscopy to makes sure I do not have esophageal Varices (which is basically blood vessels coming to the top of your esophagus), which would indicate my liver is getter worse. He really does not think I will but wants to check it for sure. After that, he wants to try something that is not normally done and retreat. Nobody has really done it to my knowledge, so go trying to ask someone and they will tell you that they just do not know. My opinion is and I think his too, the longer he can keep my liver virus free, the better. I would soon be on the therapy for ever if it would starve off the hep-c but know that is not an option.
All my labs are really fine other than my hep c is back up to about 500,000 copies but no other symptoms. I do have some ongoing numbness going on in my left hand but it is really in both hands and think it is related to carpal tunnel but have not even thought about that lately. My left foot goes to sleep some times when I am biking but not bad. We will see but not sure if is just getting old or what.
I will update you more once I get the procedure and see if it is even a possibility. If I do retreat, I can handle it and now I know what to expect. Trying to keep up beat and really stay in shape and really do a lot more biking with my son on our trail a bike and things that do not put as much stress on my joints. Keep reading and I promise I will update because this will be pretty un heard of info since not many co infected are ever treated in the first place. If you are on therapy, don’t sweat it and things will get better and it most likely will get work on you and does for most people. Think God is just testing me and boy is he. Take care and I hope this can be helpful to you!!!
March 3rd, 2012
Well guys, my PA said I need to be more positive and try not to scare anyone and that is really my objective. So, my big positive is I have cleared the virus as of now, which is just awesome, but they do want to keep me the treatment for the full 48 weeks just to make sure it stays clear. Now that most of my rash is gone, I think I will be able to ride it out with no problem. I am really glad most of my rash is gone and thank goodness my scratching is almost gone, too. Now, I just have the occasional minor itching every now and then. My wife and I are glad most of the skin shedding is about gone, too. We are very clean people, and although we know we all shed skin every day, we don’t like seeing it all over the place. And lately we have been seeing it everywhere. My doctor who is an ID doctor is really happy with my success because there are not a lot of co-infected/hemophiliacs that are on the therapy. I did scare him a lot with the rash and to make you feel better about going on the therapy, he said neither he nor any of his colleges had ever seen anything this bad. Lucky ME. Lastly, I wanted to add that after my Interferon shots on Saturday night, Sunday is getting better also. Maybe because it’s not as cool any more or maybe I’m just adjusting to the treatment better, but I do not get the chills anymore and I do not really feel as bad. Just a little sleepy on the first day and less on the second, but that is about it.
So, if your doctor has been suggesting this therapy, my advice would be– just do it!!! What are you waiting for?? If you start now, before you know it three or six months will have gone by and you will be rid of this virus. I have also gotten back to a normal schedule of working out and trying to get back in the best shape of my life. I am 46 and my goal is to keep up with my 5 year old son, Keeton, and to continue to keep up with him as he grows, and believe me, it is not easy because he is one active boy. Some of the best times are when Keeton and I get out on my bike with his trail-a-bike attached and we go for a 10 mile ride with Keeton in the back just a peddling a way. I really think guys or gals, if you want to have a great success with the Hep C therapy; you need to push through this with as much exercise as possible. I really think you will find it will help a ton. As you know I have hemophilia and there are things I cannot do like running due to a bad ankle from bleeding, but I can walk a lot and I am an animal on my bike. So, I want to encourage all of you adult guys with hemophilia, to get in shape!! Don’t let having bad joints or other problem from hemophilia hold you back from exercising and getting in shape because too many are carrying around a lot of extra weight that is unneeded. There are so many different options out there if you have some bad joints, like the big exercise balls. There are so many way to exercise and especially work on your core/abdominal, don’t think many people have ever gotten a bleed from working your abs.
So, until next time, keep your liver clean and healthy and you too can have success!!!! And hopefully live just as long as anyone else!!
Feb 1st 2012
Well, it has been a while since I posted last mainly because, besides the never ending rash, nothing really new has happened. Let me give you a summary of the last monthor so. I finished the three month ordeal, Incivek, and luckily they even took me off a week early because I had developed such a bad rash. I would have to say that my worst side effect from this therapy has been this awful rash. I still feel a little bad and get the chills a lot the first day after my shot but after that I am basically back to normal. Now, I’m just taking my shot once a week and my Ribavirin dose was reduced to about 600mg to possibly help completely clear up this rash. My skin has started shedding like a snake so hopefully the rash is drying up. I still have a problem with intense itching…I find myself scratching all the time and nothing they tell me to do or take seems to help or stop the itching. I mean my legs and back are covered with this rash and I find myself almost scratching to the bone. And that causes the rash to sort of feel like it’s weeping externally and causes little sores that bleed because of all my crazy scratching. My wife says she has a hard time going to sleep at night because the bed shakes from all the scratching. I feel like a dog with fleas!!! It was the worst about three weeks ago, I was even developing a little edema in my legs and that kind of freaked me out. It almost felt like a bleed into my joint that I have felt due to my hemophilia. Found out that it was a side effect of the severe reaction I was having. When they took me off Incivek, it started to dry up but unfortunately withthe severe rash that I got, it’s taking about a month for it to heal.
As it stands now, my rash seems better off the Incivek….but I think there is still some lingering rash from either the Ribavirin or Interferon. I am not convinced that I will stay on this for a year or not, especially if this crazy itching doesn’t clear up more. I have cleared the virus but these other two drugs are still pretty tough on you. My most recent “new” side effect (and it has taking several weeks to start noticing) is my hair is slowly started to fall out. At first my wife said it looks like I got a bad haircut but as it turns out its just thinning a lot so it looks very different. In fact I haven’t gotten it cut in weeks and usually I have to get it cut all the time. I have really thick hair and have never worried about hair loss….they say it will grow back when I get off, but how much will I lose????
Jan 10th 2012
Well, it’s almost been three months and the test results show I have cleared the virus….now, if it will only stay cleared!! I would recommend this treatment to anyone to clear hep-c. Honestly, I really don’t feel bad except for the first two days after the shot and then it’s mostly just that first day after. I’m still able to mountain bike, workout a decent amount and do my normal fast paced lifestyle.
However, they did take me off Incivek a week early due to this rash problem I have. I don’t want to scare anyone because I do not think my rash is a normal rash. But it’s BAD and it’s just about all over my body and that does make me feel bad. It’s almost like my skin is peeling off me, probably because I scratch so much….but trust me, you will want to scratch to the bones. They are hoping it’s viral and if it is, they say it can be treated easily…we’ll see. My doctor saw me yesterday and he said he hadn’tseen this bad of a rash on any of his hep-c patients. Again, don’t let my experience scare you into thinking this could be you. Not sure if you remember, but I had said in an earlier post that the last time I was on therapy with just the two drugs, I had to quit due to the rash and this rash is way worse than the first…probably because I’ve stayed on longer this time.
The plan now will be to hope and pray it is treatable and viral. If not, they will try to manage it with some type of cream and possibly try to play around with Interferon or Ribiviran. They have already had me miss the nighttime dose of Ribavirin to only 600mg. Not sure, but that doesn’t seem to be helping. So, I’m thinking maybe it’s the Interferon. Whatever the case, I really don’t think I will be able to stay on this for another 8 months if we cannot get the rash under control. We will see….but I’m still very pro getting on therapy if you need it and as soon as possible so you can prevent future damage to your liver. But, if you can wait, sounds like there are more great drugs coming out in the next couple of years. The best news for me at the moment is that I don’t have to do the 20grams of fat three times a day anymore!!!! That is a big relief…but I would take that over this rash, any day. So now I just try to soothe the itching. I guess I just traded one issue for another…..everything is a trade off. Still, my best advice on this treatment is to stay in as good of shape as you can because you will do much better when your body is strong!
Here’s some pictures of my rash and again don’t let this scare you…this is not typical but it is what it is!!!! It started on my right leg so I would say it’s the worst on my leg but then it moved to my back and shoulders and now it’s everywhere…hands, feet, neck…luckily not on my face…yet.
Well, I thought I would update you but I really don’t have too much new to add. I will say the rash is getting a little worse with the cold, dry weather but it’s really not near as bad as when I was on just the dual therapy four years ago. I have found that if I put baby oil on the rash area after I get out of the shower before I dry off and then just pat dry, it really does help. Never thought I would be doing what my wife does every morning….so, men, don’t laugh at some of the silly things your wife does to help with dry skin….you might be doing it someday. And like I said before, the hardest thing still is keeping up the 3 times a day 20 grams of fat snack with taking the Incivek. The only good part is I only have one month left of the Incivek and then I will just be on the two drugs, which will be awesome. My viral load is still undetectable and I sure hope it stays like that.
I also work in the hemophilia business and speak a lot about insurance issues and how everyone should always have a plan B in case you ever lost your insurance. Well, we lost our insurance due to being denied (because the company stopped selling insurance in the state of Texas) and found myself in the place that a lot of people are in everyday. And, I had to order my next shipment of drugs in 10 days which cost over $25,000. Luckily, I am on top of insurance in Texas with my work and was able to get on the Texas Hi Risk Pool in just three days and they have paid all my drugs, what a blessing! I will keep going and the good part is I am not as pansy with my shots and am getting over my fear of the tiny little needle. Good luck with your therapy if you choose it…and I might add, my PA told me today she’s finding that many people are doing fairly well on this 3 drug therapy.
Well, I hope you like the video we made of my wife giving me the Interferon shot. I don’t mean to scare anyone about the shot but some people (like me) don’t like shots and this is a real life issue for some. It really should be one of the easiest parts of the therapy but for some reason I just have a big hang up about it. The real problems come the day or two after the shot…that’s when I feel the worst!! I spent most of the day yesterday on the couch, again, with the chills and just really wiped out. By Monday morning, I usually feel a lot better. Unfortunately, the rashes have started getting worst…mostly on the back of my legs and the inside of my arms. I am trying to take Allegra (because it doesn’t make me sleepy like Benadryl) to help withthe rash and itching. I figured I would get some type of rash because I did last time. I just itch like crazy (mostly in the morning) but it usually subsides later in the day. The good news at this point is that after one month, my viral load is undetectable!!!!! So, this therapy is working and I pray I can put up with all the little side effects.
All in all, this therapy is tough in a lot of ways, but you can do it if it means ridding your body of this virus. A lot of people do the shots on Friday nights and rest Saturday and Sunday but I usually work out at my ranch and do other weekend projects on Saturday and need to feel my best on Saturdays….so, Saturday night shots work best for me. It’s just basically what works best for your lifestyle. I hope you enjoy this blog and get a kick out of our little video and hope you can handle the shots better than I do!!!!
Here’s the video and special thanks to Ryan for recording this and adding the intro…
Still, doing well….but, my platelets have dropped to about 50,000 (normal is around 140k). Mine always run a little low, so hopefully I will not have to take any additional drugs to fix that….but if I do, I think they can control that fairly easily. As for the treatment, I’m still doing well…although, it seems like the Sunday night after my shot (Saturday night), I’m totally wiped out. Not sure if it is because I try to do too much or not, but either way, be prepared for the day after the shot to be worn out! I usually just want to lay around under a blanket or something (it is Nov)…..but then come Monday, I am about back to normal. I’m telling you, the eating thing is just a bear for me. I am about sick of Whataburger taquitosfor breakfast, getting sick of peanuts and I hate eating plain peanut butter. So, it’s getting harder and harder to find stuff you can eat that has 20grams of fat in it. I asked my nurse if I could just take them withmymeals and the problem with that is you would have to go too long between your night time pill and am pill the next day.
Aside from that, therapy is not as bad as I had expected. I have my wife give my shot each week and I still freak out, so it takes almost 5 min to give my shot. I don’t know what my deal is….I have given myself my own factor 8 shots (which have to be given IV) but when it comes to a needle in the stomach I really freak out. I think it’s a control issue but I can’t make myself stick that little needle in my stomach myself, either. If you want to get some laughs, check back next Sunday. We are going to try to make a short video of the whole procedure and I mean it is a procedure. The problem this Saturday night was my wife started getting real irritated with me carrying on and on, but I told her that she just can’t give me the shot if she’s mad because then I have visions of her she slamming it in and it hurting even worse. I am telling you, I have to bite my t-shirt and hold my breath BUT when it is over, I hardly feel it. But every time, I think it is just going to hurt like heck…maybe I need therapy for my therapy. Until we meet again…..have a great Thanksgiving. And, I am thankful this Thanksgiving that all I have to go through is this Hep C treatment and not a liver transplant. Things can always be worse!!
Here’s a pic of my son, Keeton, feeding me cantaloupe Sunday night because I’m too tired to feed myself. He loves helping daddy!!!!
Nov 19th, 2011
Well, it has been a good couple of weeks for the most part. I have been doing very well and I am so excited that I have been able to keep up my busy schedule with work and exercise! I have had some rash symptoms basically all over but more like a light tingly itchy feeling. Occasionally, I will take a Benadryl at night and it usually goes away. Luckily, it hasn’t gotten bad like it did the last time I was on Interfuron and Ribavirin. I’m wondering if the reason I’m not having any real bad side effects is because I am on the RibaPak which brings the Riavirin down to just two pills a day and maybe the added combination of Incivekishelping, too. Even then, one of the most common side effects with Incivek is rashes, so why I am not getting them…..that’s anybody’s guess.
My opinion is….if your doctor really feels like you should go on therapy, you should try it and just see what the side effects are and deal with them the best you can. Maybe the most important thing to realize is to get treated while you are healthy so your body will hopefully handle the side effects better. There are new drugs coming out in a couple of years, but for me, I want to try to get treated while my liver was still pretty healthy. As side effects go I have noticed that some things just don’t taste as good as they use to. The last time I tried treatment (about 4 years ago), I got to where I hated a hamburger and fries. The other day I got one and threw it away after biting into it…I just couldn’t eat it…and the fries tasted just like eating cardboard. I guess that’s really not a bad thing because most French fries are really bad for you. Have you ever found an old fry in your car and wondered how long it’s been there? A fry can go up to 6 weeks before mold will even grow on it and I got to believe that can’t be good in your stomach. Like I said, getting a good diet while on therapy and finding ways you can eat your 20grams of fat three times a day (for your Incivek med) is one of the hardest things for me. You have to always be thinking of how you will do it because 3 months is a long time for a diet change. One of my favorite snacks in the afternoon is fresh guacamole and chips…talk about a lot of fat…at least it’s the good kind of fat, mostly. That is about it for week four…I’m hanging in there.
Oh, one more thing, last Sunday which was the day after the shot, I went for a hard ride pulling a trail-a-bike with my little boy. We went for about a 10 mile ride and after I got home, it did me in!!!! I laid on the couch the rest of the day and into the night. Not too bad though….I am kind of crazy and want to push through as much as possible because I think it is just crucial that you keep your body in as good as shape as possible. Maybe that’s one of the reasons I am doing better than some possibly. Love to hear any comments from others that are on treatment and once again, don’t be scared of this therapy!!
Nov 8th 2011
Just got a call from my doctors office and they were very excited about my test results. My viral load was about 700,000 copies before starting treatment and two weeks later it was63!!! That means the treatment is working and that’s a big praise! To stay on Incivekafter the first month of treatment, your viral load has to be under 100 copies which is basically undetectable. So, to be under 100 after the first two weeks is wonderful.
Nov 6th 2011
Well, here we are in my 3rdweek and I think the honeymoon is over. Last week was really fine but eating 20 grams of fat 3 times a day is just about to kill me. If you are thinking about starting therapy (on your doctor’s advice of course) I recommend you first figure out how you are going to manage the timing of taking your meds with your eating habits…because that has become one of my biggest hurdles. I’m not hungry when I’m supposed to take my Incivekandon top of that, some foods are becoming tasteless. This seems like a small worry but when you mess with someone’s whole eating schedule, it becomes a problem…eating healthy is important to staying healthy. Lately, I’ve been drinking a lot of chocolate whole milk in the morning but like last time I tried treatment, things are starting to lose their taste and that makes eating anything more difficult.
Last night when we gave the shot, again we had some difficultly. Although we have giving plenty of shots before and have used all different mixing devices (from having hemophilia and the many infertility drugs we’ve used), we ended up wasting a shot of Interferon last night because we did not completely know how to operate the device. We’vefoundoutit’s important to make sure the needle is completely screwed on tight because that sets up the dialing mechanism. But when we check the directions about having difficulty with dialing it just says make sure you pull it all the way out. Well that wasn’t the problem it was that the needle wasn’t screwed on tightly. And when we were fixing that we lost the all medicine and that doesn’thappen withotherdrugswe have used. It is kind of frustrating because I feel like in the factor world; there are a lot more people to draw on. There are people that have given factor all their lives and you can get help at the drop of a hat to learn the mixing device. Hep-C is a little different because there are no patient reps to call on and no manufacture reps to call on. They just leave it to the doctor’s office and they offered to help with the first couple of shots; but that dictates when you give your shot. I wanted to give it Saturday night so if I felt bad the next day, Sunday could be my “day of rest”. My pharmacy was helpful and sent me the www.beincharge.comweb site and which is the manufacture of the PegIntron. My suggestion would be to give your first shot in the doctor’s office, even if you think you could do it yourself. I wish we had of done that.
Today, I am feeling achy, sleepy and actually took my first nap but think that was because I took some Benadrylearlier. I thought I was feeling a rash coming and wanted to get a head of it. But, I would not recommend that again. I did not want to feel bad but I ended up just traded one problem for another. I think the best thing for me the first two days after the shot is to try, as best as I can, to push through it…and usually I get over it and feel better. My wife thinks some of my tiredness and feeling like a rash is coming on has to do withmeworkingreally hard at my ranch yesterday. So, I am not sure if I am tired because of the hard work or the shot or a little of both. Also, we were working in an area where poison ivy was so, again the almost rash feeling could be from the poison ivy or the shot or a little of both??? I also want to add that I think it’s very important to keep working out as much as you can….if you do a regular exercise program. And if you don’t, you might look into starting one because you will find that you eat so much fat it might start to show. My wife was teasing me that my belly was looking a little plump…I’m feeling like it’s starting to swell like a toad. I have a high metabolism because I’m so active but that only goes so far. And, if you are going through this therapy, you need to be in as great as shape as possible.
I hope these blogs are helpful to you. I wanted to give you an overall real life perspective of what therapy is really like, although I’m sure everyone responses a little different. In the end, I would just encourage you have to try everything you can to make it work. Be committed or it will never happen. Email me with any questions you might have.
October 30, 2011
Well, it has been a full week and I cannot believe it. Surprisingly, I am not really having any bad side effects like I did the last time I was on therapy. After the achy went away last Monday or so, I haven’t really been achy again. My wife gave me my second shot last night and again, surprisingly I wasn’t achy today either. We had a hard time working the devise and wonder if it all went it, butwe think it did….the vial was empty so I guess it worked. Overall, this three drug therapy has been great for me. I have added a picture of what the three drugs look like. The big difference now with the Ribavirin is you can get it in the RibaPak which brings your pill consumption down to only two a day, which helps a lot.
Now the negative side…the biggest pain withthetherapyis eating 20 grams of fat with your two INCIVEK pills you take three times a day. Usually, I eat some cereal at about six when I wake up and after I drink my coffee about 8:00 I am ready to go for the day. The problem now is I have to eat again, plus it must have 20grams of fat, which sounds fun but is really kind of hard. Seems like all I do is eat!!!! I am trying to change my eating habits to eating about 5 small meals a day. The second pill time is about 3:00 pm and that’s hardest. If you are like me and on the move a lot or traveling, it’s hard to stop and find something to eat that again has 20grams of fat. One thing my wife bought me (which is a treat) is just a small serving of guacamole and chips. It’s a nice treat but I’m not always able to do that so I usually resort to eating a lot of peanuts. Another difficultly last week was I did go to the bathroom a lot….if you know what I mean… and I mean a lot. Hopefully, that will get better this week. My doctor told me she could give me some medication for that but after all the meds I’m already on, I hate to take even more unless I have to. Sleeping was hard last week, too. I took some Tylenol pm several times but it seems like I’m sleeping a lot better now. I will have to admit that many times at the end of the day, I did feel a little more tired and wiped out. But, I try to push through it because I have to stay awake to take my last two pills at 10:00 pm and eat another 20 grams. Luckily, I’ve had a habit of eating ice cream almost every night before starting this treatment, so I’vejustcontinued with the ice-cream for my 20g of fat. Last time, I remember taking a lot of naps (which I never do), but this time, knock on wood, I have not taken one nap. That’s unbelievable because most people find themselves sleeping a lot. One last negative, you might notice that your stomach will feel a little wrenched any times, mostly in the morning….I guess because of all the meds it has been digesting.
After talking to the manufacture, if you can get past the first 3 weeks or so, you should probably do fine. We will see but after being on this therapy for a week, I would say don’t be afraid of it. You could have more side effects than I am having but it is worth trying!! And, most of these problems are a lot better than liver failure. I’ve had people say…couldn’t you get a liver transplant and wouldn’t that cure your Hep-C and hemophilia.** Yes, BUT that is no trade off you want to take unless you have to. You’re just trading one set of problems for another. I would sure like to fix the factory installed equipment God gave me! I will keep blogging and I hope you find this informative and practical. (**correction added Nov 6th…a transplant would cure hemophilia but NOT Hep-C, sorry if I miss lead anyone.)
October 25, 2011
Well, Sunday was a little tough and achy in the small of my back and my buttocks but after I worked it off at the ranch Sunday afternoon, it wore off for the most part. My wife also made me take two Advil. My suggestion is to be as active as you can, especially, if you do a lot normally. Try your best to keep it up because the last thing you want to do is get so out of shape you body is not as strong is it could be. The second side effect was sleeping. The first two days seemed to be the toughest but my nurse said the first two days are the roughest. I did try taking Tylenol PM last night and had a good nights sleep. I am on my 3rdday now and if stays like this, I will be able to handle it easy. As I said, the last time I was on therapy, it was horrible for me so I hope it remains this good. The great part is you only have take the Incivek for up to 12 weeks and after that (if you use the RibaPak) you only have to take two pills a day plus one shot a week, that is easy. I will blog later in the week….after I have been on therapy for about a week or so and tell you what it’s been like. Lastly, the hardest thing about the therapy is finding something with20grams of fat that you can eat 3 times a day to take with your two Incivek. Here’s a little head spinning info, these little blue pills that you take 6 of a day, are $100.00 a peace so…you’re right, $600.00 a day and that is just for Incivek not the RibaPak. Crazy expensive……
October 22, 2011
Well, I am going to start blogging about my Hep C treatment. I hope this is beneficial to anyone thinking about starting therapy. My doctor wants me to try therapy for one year….. I just had my third biopsy and it shows some liver damage and as he says, I am the type of patient you want to treat while you are healthy. I tried it about 4 years ago but did not do so well. I only stayed on it for two months because of so many rashes that I couldn’t stand it any more. The only difference, now, is that I will be adding the new drug INCIVEK as a third drug. There are two new drugs you can take but my doctor chose Incivek/(telaprevir). I don’t think either one of these new drugs are indicated for co-infected people but my doctor is an Infectious Disease Specialist , and he is more aggressive than some. We will see…but if you don’t know me personally, I really don’t have much time for feeling bad. I work like a steamship and like to exercise a lot, too, and I sure hope this does not slow me down too much.
Stay tuned and we will see what happens to Mr. Energy. This is a picture of my my first shot…you would think a hemophiliac that gives IV’s all the time could do his own shot, but oh no!!! My wife actually gave me the shot after about 5 mins of convincing me it wouldn’t hurt….the shots scared me to death! I will try to add some humor into my blog, that will probably be the only thing that will keep me sane. Just say a prayer for me please…and my wife and son.
by Andy Matthews