finishing incivek

[johno222]

Hi,after  finishing 12 weeks on incivek I thought the worst was over .I have geno type 1 and on tripple therapy .I finsihed incovek and now
it  has been 5 days where every evening around 5pm i start to itch something out of this planet .Im not talking about the itch but rather better described as  a prickling effect in my deep tissue ,leg muscles mainly .it comes on strong and without mercy and i have read and read but i have not read about anyone else experiencing  my symptoms .Why every afternoon around 5pm almost on the dot  doesnt make sense.I have been able to work right thru my therapy .Yesterday while experiencing a attack i lost the plot and had to go out and smash a spade in half over the fence rail .i completely lost it and still bewildered about why this is happening .I called my support therepy nurse in a remote chance that she may offer some advice on how to treat these symptoms .All she could offer was to take some panadol .I had just finished telling her that I had taken tramodol, codiene .. .i have these pain  killers for my bad back so I only take them when I really need to .I can suggest that the level of disscomfort i was experiencing was 8 /10 disscomfort ..i was actually quite scared as i at the time of these attacks I dont know how bad its going to get and why why why .....After taking my pain killers the prickling sensations subside .I can only explain the prickling like someone is stabbing you with a compass .Its that bad .After half an hour on pain killers and im ok until the next afternoon comes around .i dont have any skin issues right thru my therapy so far ,only slight rash near my genitals but nothing to concern myself with if thats the worst it gets .My concern is that the people who go on this therapy have little support from health professionals .Today i will go and see my doctor bu tI dont hold out much hope .He said he wouldnt go on this therepy but should wait for better meds which are coming to tackle HEP C .Interesting i thought .Has anyone gone thru what im descibing after coming off Incivek .

[Diana66]

Thank you for the feedback, good to know. I am starting only now to have some prickles. Nothing dramatic yet but I still have 4.5 weeks to go.
Lately my arms burn every day, just hope it is not a pre rash thing

Keep the goal in mind, that it will get better once Incivek is finished.
32 days to go , Not that I am counting :))

[johno222]

Hi Ya
just to let you know after coming off Taleprivir a week passed and the stabbing has now stopped .i was contemplating coming off the program but now with the encouraging folk here on this forum i will continue .The only thing that helped me was codeine based drugs that also made me sleep .No need to suffer regarding pain if you can get them from your doctor .
all the best
John

[ceanothus]

I agree with the great advice you've already gotten, and I wanted to give you a lot of additional support too so I sent you a private message. Please be sure to check your inbox!

[crossroadsec]

Ditto what the others have said. We all went through it together. You just get a little crazy. It's an insane time, but it does pass. I likened it to the fleas of a thousand camels infestation. Even my brain was twitchy. My best to you. It is not easy. These drugs are harsh. Keep the lines of communication open here. You're not alone. Karen:)

[Dee1956]

Hi John, I remember having what I called convulsive itching.  It was awful.  There did not seem to be any rhyme or reason other than I was treating with the 3 drugs.  When I would itch it would jump all over until I was hopping around trying to do anything that would make me feel better.  I tried benedryl. atarax, lotions, potions, etc.  The only thing that seemed to help was pretty much knocking myself out, when I woke it was normally gone.

If I had to do it over again I would.  I feel better than I have in many many years and I am grateful I had the chance to do it.  It was awful and I would not wish it on my worst enemy (if I had any) however it saved my life.  I was in early cirrhosis before the HCV was discovered so I was looking at a transplant if I did not get rid of the HCV.  I know it is hard, try to hang in there.
Not sure why your regular doctor thought you would have to reduce your doseage.  Maybe he has read the latest warnings however only your Hep doc can advise you as he/she had the most pertinent information and knowledge about your particular situation.

I wish you the best, hang in there.
Dee

[working dog]

yes i would go through it again...i was able to svr and i love that!....my tx was very rough....i was so sensitive to the drugs...about 2 weeks post incivek the squirming...laying down on fiberglass feeling did get a little better but stayed throughout tx...i also had low hgb ...to get out of bed was a few steps...i would sit up slowly...then get my feet on the floor....sometimes on the edge of the bed for 5 to 10 minutes before i could stand up.....funny thing was going into tx i was so sure that my symptoms would be light....thought i would be able to exercise doing cardio workouts as well as work construction...that didn't work out....i would say stay on the program as best as you can....you'll get there.....post tx just keep drinking more water then you did before tx...and try not to get too anxious....these drugs are strong and it takes time to get them out of our systems....good luck...billy

[johno222]

I assume youve been thru and completed treatment .What was it you did to combat or get thru.................oh im squirming alright  .... would you go thru it again ?

[johno222]

Hi
thanks for your  reply .I will certainly question my hepotoigist when I see her this week .I found your last statement most encouraging as I ceased my meds this morning after another attack of the stabs last nite .I just cannot go thru more of this .After reading your reply I have found myself questioning my actions and now think i will try and continue onwards again .I feel mentally  exausted but one day at a time is what i tell myself .....it least I will try and find a solution ,if not I think i will hold out till better drugs or non interferon drugs come along .....thanks for all the replies and my respect goes out for all those people who have gone thru treatment ..........good luck .

[pooh55811]

I don't mean to sound like I am negating or underestimating your experience with the stabbing sensations. It sounds like yours is considerably more intense than mine was. Plus, it is possible that your sensations have a different etiology than mine. However, I mentioned the Interferon side effects first because I know from experience that Interferon can cause some exceptionally bizarre side effects. When I first told my original treating team about the bug biting sensation, I know the nurse thought I was hallucinating and and that she thought it was a psychological, not a neuro-transmission, problem, LOL. I remember thinking, "Wow, she thinks I went off the deep end." I had a lot of weird side effects over 48 weeks, more than I care to remember. Some came and went daily or weekly. Others moved in for an extended stay even though they were never invited or welcomed. I basically chalked everything up to side effects and it seems that I was correct in doing so, since almost everything is now gone. However, that does not mean some side effects are very intense and troublesome.

I would be very nervous about reducing drug dosages for any reason so I definitely would not be reducing them for stabbing sensations. I wonder if something like Neurontin (Gabapentin) might help. I know at least one person on the forum was on this drug for Restless Leg Syndrome while on Hep C Tx.
It may be worth it to ask your doctor about using Gabapentin and it may work better than the pain medications you are taking.

"Gabapentin is used with other medications to prevent and control seizures. It is also used to relieve nerve pain following shingles (a painful rash due to herpes zoster infection) in adults. Gabapentin is known as an anticonvulsant or antiepileptic drug.

OTHER USES: This section contains uses of this drug that are not listed in the approved professional labeling for the drug but that may be prescribed by your health care professional. Use this drug for a condition that is listed in this section only if it has been so prescribed by your health care professional.

Gabapentin may also be used to treat other nerve pain conditions (such as diabetic neuropathy, peripheral neuropathy, trigeminal neuralgia) and restless legs syndrome."

http://www.drugs.com/gabapentin.html

http://www.webmd.com/drugs/mono-8217-GABAPENTIN+-+ORAL.aspx?drugid=14208&drugname=Gabapentin+Oral&source=0

You can complete treatment. The more UND blood draws you get, the more doable it becomes. Time will go fast and you will soon be finished with treatment.

[working dog]

squirm man.....thats all you cab do!....nothing worked for me...its an awful feeling for sure.......hang in there......billy

[Idyllic]

Like Pooh I can't help but wonder if there is a trigger for your 'attacks' since they seem to happen like clockwork. I do know that if you get in the routine at taking the pain meds every day (around five) after that happens that eventually your body may want the pain meds every day at five. . . . . Still, it takes a lot of figuring out and experimenting to see what works with aches and pains like that. Unless you have other stuff going on I don't see how reducing your meds is the answer. I mean I get how your doc might reduce your meds due to your anemia but even still I would ask for Procrit in that case. In other words, not knowing more about your medical condition or anything else about you all I am saying is that I am not sure I would go for a dose reduction to manage the kind of pain you describe.
Best of luck :)

[johno222]

interesting that when  you rubbed the area being affected that it went away .I would be so lucky as the prickling manifests elswhere .Well i take my hat off to you and good on you for completing the therapy .Also great to hear your well and feeling better than ever .I will persist with this and tell somebody my same experience oneday .........cheers !
that being a  juice :).........................  

[pooh55811]

I think that biting sensation is common, or, as you say, being stuck or stabbed with something. I do remember, before I got it, reading some posts by people that had it, and I was wondering what they were talking about. Mine did not start until after the Incivek ended. If I recall correctly, it started in January, which would have been about 14-16 weeks after starting treatment. However, I do know some people had it when still on Incivek. I think it is Interferon related. Interferon interferes with neuro-transmission and I suspect that the weird sensations, including the bug biting or the stabbing sensation, are the result of the Interferon affecting the neuro-transmission.

You could be right about work taking your mind off of the sensations. Another thing is that maybe they increase when you get more tired or your muscles get more tired, towards the end of the day. I noticed the "spider crawling on my skin sensation" mostly when I sat at the computer, which was a lot of the time because I was too tired and felt too crappy to do anything else. Plus, I really had brain fog so I could not concentrate on anything but MedHelp forum, computer jigsaw puzzles, computer solitaire, LOL. Also, I had such a rad rash and itching that I wore nothing but a very lightweight short cotton nightgown for 4 months. In addition, the rash and itching were pretty severe so I was probably distracted from the bug biting by the rash and itching. Everything is relative. But I wonder if being fatigued may be making the neuro-transmission worse and causing it to be more noticeable or more active at 5 pm. Just a thought.

I took nothing for this sensation. I just rubbed it, hard, for a few seconds and that seemed to work. Mine was not confined to my legs, though. I had it on legs, arms, trunk, as noted above. I was using fluocinonide ointment for my rash. Not sure if that helped the bug sensation. Then I was also on Hydroxyzine oral starting in late January. Not sure if that helped with the bug sensation. But I took no pain pills for the sensation.

I did not reduce my drug dosages at all. I am not sure why your doctor thinks you should reduce doses for this particular stabbing sensation/side effect. These drugs have a lot of side effects. Normally people don't reduce dosages because of most of these side effects. Usually people just figure out some way to deal with the side effects. If it was severe, and if it was me, I would rather take something for the pain than reduce Hep C med doses. Of course, if your blood counts go super low, then that is a different situation.

Yes, I would still recommend this treatment and I would do it again myself if necessary. I had some pretty uncomfortable side effects but they were made worse because my treating team had no clue how to recognize and treat the side effects. Once I took control of my own care and demanded treatment for the side effects, it got a lot easier. However, even if I had to go through what I went through, I would do it again. I was at Grade 2, Stage 2 liver fibrosis. I was 65 when I started treatment. I am not getting any younger. I wanted to treat and get rid of this disease before it did any more liver damage and before it did anymore damage to the rest of my body (I had several extrahepatic manifestations). I also wanted to treat before I developed a disease that might prevent me from treating. So, yes, I would do it again without any hesitation. And, yes, I would encourage others to treat.

I did 48 weeks because I was still detectable at 4 weeks (on Incivek). I never reduced any doses and I never missed any doses. I finished treatment on August 25, 2012. My 12 week post end of treatment VL was UND. I will have my 24 weeks post EOT VL in February. I have 99.7% chance of attaining SVR (because my 12 week post EOT VL was UND). I consider it worth it; everything I went through on this treatment was very worth it in order to rid myself of this disease.

BTW, I feel better now than I have felt for 19 years and way better than I felt before treatment. I have my health back and I have my life back.

[Reidmusic]

I had the same problem from week eight to week 12 on Incivek and really intense itching for three days after I was done with the Incivek. It felt like someone was poking me with pine needles from inside my flesh and it kept jumping around from place to place. Atarax helped some but it did not stop it completely. Finally, four days after I finished the Incivek it started to go away and the rash has cleared up.

It really drove me insane so I feel for you but hopefully it will begin to get better for you soon as the Incivek gets out of your system.

[johno222]

Hi,thanks for your feedback .I feel now that im not going thru something on my own now .What you have stated is probably the same as what im now experiencing .It only started tho after finishing Incivek and seems to be getting more intense now every day .I did visit my doctor today .He suggests hanging out till i visit my hepatologist on the 16th Jan .He thinks I will need to cut my dosage .He also got my latest bloods and im now 105 so anemic. .and low in every thing else. Like you said Im trying to think what maybe setting these attacks off but even as i type this letter I can feel the prickling sensations now starting lightly but gradually increasing.I think when Im at work my mind is taken off these sensations .Oh well it looks like more pain relief .It helps it least .Did you try pain killers to assist you ?Thanks again for your reply .can I ask you also ,would you reccomend to anyone else this treatment know what you went thru .

[pooh55811]

I do not know if you are having the same problems I had but I can tell you what mine was like and you can see if you think it is similar.

I did fine for about the first 3 months (at least concerning this particular type of side effect). Then I started developing sensations like bugs (a spider) was crawling on my leg or arm. Then I developed sudden sharp sensations like a very large mosquito biting or, actually, more severe than that, like a deer fly biting, or a bee. These varied in intensity, although they were like getting bit, so rather intense. These sensations were present every day, some days worse than others. These "bite sensations" occurred on my legs, arms, trunk any time of the day. I was on treatment for 48 weeks so I had these bite sensations for a long time. When I got them, I rubbed the site, and that seemed to get rid of them, for awhile, anyway. After treatment ended on Aug. 25, 2012, the bug biting gradually decreased in frequency until I no longer got them. I do still occasionally have the spider crawling on my leg sensation, but that is infrequent now and hopefully will be gone soon.

If you get these sensations every day at the same time, it seems something may be triggering them. I don't know what, but maybe you can figure out what you do every day and when you do it and see if anything seems to set you up for these pains. How is it related to pill time. How is it related to your activity. and so forth. Maybe you can determine a cause and effect. If you can, then maybe you can change something in your routine that may lessen the frequency and/or severity of the sensations.

[Star971]

I am still on incveik and I experience the same thing. It feels like ants are under my skin and crawling. It can be really bad at night. But what has seemed to work a little bit is phernergan( spelled wrong sorry) its for nausea but its also antihistamine. I take it every night. I hope this helps a little bit. I wish there was something that I could just put on my skin to make it go away. But no such luck yet. Oh and ice pack seems to help a bit.
Best of luck if you find something let me know.
Star