Hi I started my treatment today incivek peg and Ribo 24 wks. I am genotype 1a and a CC which I understand is good.
I was on a trial treatment back in 2006 with Albufiron and Ribo 48 wks I did pretty good not to many sides, stayed clear for 3 months after treatment and then it was back. Has anyone else here tried the incivek treatment and kind of let me know what to expect as far as sides go. THANKS
I'm on my last week of Incivek. I am going to treat for the whole 48 weeks though.
Firstly, the most important thing is to work out a sensible routine that you can adhere to. Pick your 3x8 hours for the Incevik, as it is imperative that you take it every 7-9 hours (preferably every 8 hours). You also need to take the Riba every 12 hours. As you need to eat 20 grams of fat (at least 20 gms) 20-30 minutes BEFORE taking Incivek, one might need to set alarms.
I set alarm for 6.30am and eat yoghurt and fruit,take my other meds like Riba, then take Incivek at 7am.
Eat lunch at about 2.30, Incivek 3pm etc.
There are a few lists around on the MedHelp site of how to get 20gms fat. Use the Search this Community box top right of page.
I can give you ideas if you want to PM me. Suffice to say, tastebuds are stuffed, and appetite is up the creek and foods you used to eat taste like crap, that's if you feel like eating at all. But you must get that 20gms in for the Incivek, and also eat a bit for the Ribavirin.
BUT you have to eat the 20 grams, if you want to avoid the first side effect (SX) I got from the Incivek. I'll make a list of what I got and how I dealt with it. Others will chime in with their wisdom.
Firstly, diarrhoea, burning anus and itchy surrounds. some bleeding and haemorrhoid action. This started within 5 hours of taking my first dose. I mustn't have eaten 20gms of fat, or else that's how powerful this Incidious is. Remedies: I took Loperamide for the diarrhoea. I had Proctosedyl ointment for the itch and burning, and used good quality babywipes to clean and soothe area. Get onto it immediately. There's nothing like crapping (as Pooh says) shards of glass and razorblades. Mine settled down after 4 or 5 weeks.
Secondly, and probably one of the most important is staying on top of any rashes you will get. It is one of the main reasons people stop treatment. And it makes you a bit crazy. Itchy rashes are from both the Incivek and the Ribavirin, but they are slightly different. Treat the same, Aggressively.
Stop using any soaps or perfumed creams, shampoo etc. Get a soothing body wash, and moisturizer (Aveena is v.good), and keep skin clean and moisturized. THESE RASHES AREN"T A JOKE. When I first noticed rashes, I used an over the counter Dermaid, but it wasn't strong enough. Go straight to your doctor and get prescription cortisone creams. Also, oral meds such as Zergic, Telfast (different brands here to US). I used cold faceclothes to bathe itchy rashes, as they generate a lot of heat. Don't ignore it when you find yourself scratching in places. head, ankles, shins, elbows etc.Look for rash, put cream on ASAP.
Thirdly, exhaustion, dizziness, apathy, tiredness, lethargy may all seem to be the same, but believe me they are different. But all can be on together. It is part of the meds, but can also be a sign of a lowering of your Hemaglobin and platelets. This is also another main reason for people discontinuing TX. So, keep in check with your doctors, and let them know if you are really feeling faint. Procrit, blood transfusions, lowering of Riba dosing can all be employed to deal with this. Thyroids are also affected by TX in some cases, and as hypothyroidism has similar SX to TX (hair falling out, weight gain or loss, dryness of skin etc), best to ask your doctor to also give regular tests for that.
Your brain may be affected (effected?). Mine? I have lost 3/4 of it somewhere. I am forgetful, but more placid than usual. Some on TX will start to display negative thoughts etc. Keep an eye on yourself. If you are around people, ask them to watch for any changes in your mood and behaviour. Frustration can be common, as you can be so tired with being tired, annoyed at the world. Keep tabs on yourself, and tell your doctor if you think you may need to try antidepressants for the duration of TX.
WATER. Imperative. Drink 4 litres a day or thereabouts. Filtered preferably. Your body is being dehydrated by the meds, and you also need to help flush them through your body.
There are more side effects to mention, but I think they are the main ones that affect people. Spend time reading posts. I did. I often found the answer already been asked, but don't hesitate to post questions. We are all in this together, and I have found that my treating doctors either don;'t know, won't know, or don't have time to help. It's all new to some of them too.
Good luck in this slaying of the dragon once and for all.
that's a great list...I only had some rashes the first few weeks...be sure to wear loose clothes...over the counter creams were enough for me thankfully...
I didn't have any pooping problems either, thankfully, just a lot of it, lol
I was super nauseous though. You can ask your doctor for Zofran. I bought a lot of ginger slices from the health food store too.
Drink tons of water as mentioned...I was much more thirsty
I was really out of it and forgetful yet placid (I like how he said that).
I was a couch potato a lot and kind of got used to it.
I was able to continue working full time though. I came home early a few times, but was able to keep working, thankfully
My hemoglobin did drop at the end of Incivek and I started Procrit for the last 3 months.
I became sensitive to bright light and loud noises. Sun and heat affected me too.
Some foods made me nauseous so I switched stuff around. Every day seemed to bring new things, but completely survivable. This treatment is so worth all this
Keep us posted, we are here for you
hi and welcome above all good advice but remember that everybody reacts differently. My hubby just finished his 24wk he to was 1a and he as been UND since wk4 i wish you all the very best good luck and keep us posted.
Asle gave you good advice. I used whole milk to fill some of the 20 grams of fat meals when I couldn't eat and never had the stomach problems. I always ate some real food for each meal. Bring your food and meds with you if you have to go out on appointments. Keep learning as much as you can so you can be your own advocate. I had to suggest rash medications I heard about on this forum to my NP because Incivek was new to the hospital. I was pushing for Procrit when my hemoglobin got in the nines. Watch your labs closely, esp. hemoglobin, platelets, and white blood cells, and know what the protocol is for dealing with them when they get too low.
Thanks for all the good advice,it's only day to and I can already feel the meds.
I plan on working the whole time I'm on treatment , but I have a pretty physical job (construction) . Lets see how this works out once again thanks to you all and and good luck to all of you
Hi. I am geno 1a sub cc like you. I stopped triple therapy Jan 28th due to side effects. Asle gave great advice. I had the rash and you can see pics on my profile page. I also experienced many different side effects and almost all you can get. I was negative at last draw 3/21/13 and will have my next draw at end of June.
I wish you much luck with your treatment and I pray you will not have side effects, you are able to continue working and you achieve your SVR.
Thanks Floriidian7 sorry to hear you got the sides real bad. I've only been on 4 days now feel really run down I hope I don't get to many sides, I worked today and found I got tired real fast, I work in construction so my job is very physical . I'm glad to hear your your ok and hope your next draw is what we all want to hear. GOOD LUCK! And thank for your comments
You may need to think about a plan to work a little less, or take on lighter work during your Incevik stage if your SX get too invasive. Certainly try to factor in breaks where you can nap.
No one can foresee how the drugs are going to affect them, not anything the doctors say especially will prepare you for what may happen. (That's why this forum really is a godsend.)
Have a think about what you can do IF the sides get too much. Certainly many people's lives improve somewhat after they stop taking the Incidious.
I would also caution you about how much you tell your employer (if it's not you!), or fellow workers. HCV is a much maligned and misunderstood disease. I invented an 'experimental treatment' for liver disease that is being trialled, with nasty SX. A bit like cancer treatment I say. As soon as people hear the word 'cancer', it's OK. No more questions. Cancer is good to get. HCV is bad.
You have received some very good advice above. I would just add to be sure and post any and all side effects you have that you need help dealing with. Also post any problems that arise. Most of us have had plenty of problems and side effects and most likely someone on the forum is gong to have a remedy or an answer. There are many knowledgeable people on the forum and people are more than will ing to help out with information and with support.
One thing, be sure to get hard copies of all of your tests. That way you will be able to keep track of your progress and your abnormal labs. Also, you will be able to type in the exact numbers and readings if you have questions and want to post them on the forum.
I also work at a very physical job to me at least. A non stop busy moving restaurant. I tried to work 4 day after I started and it just wasn't happening for me at least. I used my FMLA for the first 12 weeks. I was weak, nausea, fatigued all the time. I either sat on the couch or laid in the bed. But as many have said everyone is different. We go with the punches day by day. Just take care of yourself and don't give up.
Oh and and as (Reid) said whole milk saved my life. Lets know how your feeling and if you have any questions ASK
Thanks for your comments Stars, I can see how a busy morning in a restaurant would be very exhausting. This is day 5 for me and I'm currently renovating a house right now,and I'm up and down stairs all day. I hope I can keep it up , but nothing can make me give up on this treatment! I also use Boost Plus in the morning it has 14 grams of fat and then a big cheese bun with butter, as I don't really like to eat in the morning. I take 3 incivek in the A.M and 3 in the P.M, so for dinner I can pretty much have something normal with desert. I try not to sit to much , if I do the meds seam to really set in.
Thanks for everything I'll keep you posted
Just another thought. The sun brought on the rashes for me, and aggravated the rashes I already had. Heat was a killer. When I developed rashes, cool water, loose clothes and hiding from the sun were things I could control. But then I live in tropical North Australia, so relentless heat. But, the sun is most peoples' enemy who are treating with Incevik, If you are working, try to keep yourself as cool as possible.
I am taking Incivek twice a day,we have a large hep research centre here in the city I live in,the Dr said that in recent trials it showed that taking 3 Incivek in A.M and 3 in the P.M at 12 hr intervals ,did not make any difference . I still do the 20 grams of fat but this makes eating a lot easier to deal with especially at work. But it still makes me feel bla , am genotype 1a CC.
This is still only my first week but still feel rough ,and still work ,got the bad Baboon butt but understand this is normal. I have double checked dose with Dr and he says 3 pills has been passed
I live in western Canada close to mountains the weather never gets really hot here in summer. Our daytime hi 20-24 C day and 14 to 18C night. The air here is really dry so I use lots of moisturizer and drink lots of water I realize this is very important. Work safety rules say we must wear long sleeve shirts and long pants and I also wear a cap, but I will be keeping an eye on it
I finished my triple treatment April 11. I was in a trial with the two doses of incivek a day. I had just about every sx that has been mentioned and maybe a couple more. I was undetected at two weeks. I just got my four week post treatment results and I'm still undetected. You've been given some great advise and I have to say this forum was so important to me during treatment. People on this forum know their stuff. Don't hesitate to ask any question or to just vent. We are all in this together working towards the same goal....SVR. Good luck and keep in touch.
Thanks for you your input, I agree 100% there are very many knowledgeable people on here and I take all their advise very seriously . Today is only day 6 for me , do my second shot tommorow , however I did notice today a small area on my leg that is itchy and small red blotches ( The Dreded Rash) ?
I understand its best to get this under control from the start. I will be talking to DR in the morning to see if I can get some kind of cream for this. Today I just put some Hydrocortisone cream on it , not as itchy now if anyone has any suggestions please feel free to comment.
That's good you're on to it. If you weren't aware, one could just idly scratch away until it got out of control. Shins was the first place for me, too. I found any over the counter meds just didn't do enough to stave off the spread. I would get straight onto prescription ointments. And get an oral antihistamine to calm down the itch. Over the counter ones were enough for me, but Pooh had to get big guns for her rashes.I had what I called spot fires, where I got a savage itch on all strange parts of my body but there was no rash. Drove me nuts.
Other places that are common for itch is chest, back, elbows, arms and for some, scalp. Hard to say whether it is an Incivek or Riba rash, but treat the same.
Keep in touch.
Thanks asle I'm learning a lot already on this forum, and your right I got to keep up on this rash , before it keeps up on me. I had RIBA rash the first time I was on treatment but I can't tell the two apart , all looks red a itchy to me. I have this on the inner part of my leg about 4" diameter ,the cream I got takes the itch out a bit but got to get the good stuff , head and chest ok for now.
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