I was treatment naive. I finished treatment of 24 weeks was UND at 4,8, 16, and 25. Finished incivek in Aug, finished shots on 12/01/11, and riba on 12/07/2011. Don't get me wrong, I am thrilled with the results and know it hasn't been that long. I have some difficult symptoms and I wondered if anyone else had them after treatment. I am not calling them side effects because I am not taking the meds anymore. I have body aches most of the time (pretty severe ones). They are only relieved occasionally but usually I have to take motrin (I'm actually using ibuprophen but motrin is a shorter word). I am now trying not to take motrin because I don't think you should take it everyday, but it's really hard. I also still have sinus problems, ear problems, and severe joint pain (one shoulder, hip and elbow). At first I thought the meds had just exacerbated conditions I already had such as sinus and allergies, but I did not have a shoulder problem at all, my elbow is painful when moving it, it is weak, and is painful to the touch but there is no redness or swelling or anything. I just developed a bunch of inflamation in my mouth that is inside my lips. You can't see anything from the outside but I look like I have a fat lip. The inside of my lips almost looks like the ridge of a burn but it wasn't burned. When my upper lip swelled this morning I thought I was having an allergic reaction to something so I took some benedryl but now I can see the bright red skin inside my lip (almost like a burn) and it is still swelled. I have it inside the bottom lip too but it isn't as swollen as the top. It just came up suddenly about 8 hrs ago. I am not as sharp mentally as I was before treatment but have improved alot since stopping the meds. I am not exhausted and not as crabby. I had some sever joint pain in my hips during treatment and nearly couldn't walk at one point but it improved. The joint issues seem to be getting worse. My joint pain does keep me from doing some things (I can't lift anything heavy like a turkey breast or put weight on my arms or do any pushing or pulling) and the body aches are far worse than anything I had during treatment. I just wondered if this sounds familiar to folks who have treated; if it does did you have any similar symptoms after treatment or know of someone who did? And if you did get any of this, did it go away at some point?
If you are new to this and getting scared please realize that I very likely no longer have hep c thanks to these meds and this does not happen with everyone. We are all different and some people do not have any negative effects from the medications. Take care and thanks, everyone.
you really just got off tx.....i too have stuff going on but i think most folks do for a while...i'm more spaced out then on tx...have more aches although aches not too bad...if you stop drinking after you drank too much you can have sx for a while...months or years...i think maybe if we were weaned off the drugs things might be easier but we're shocked .....stoping at full dose...i wonder are you still drinking lots of water? i know i'm not..still drinking water but not that much....sometimes i think thats a problem...have you checked out your vitamin levels??? lots of stuff is most likely way off...i think ..get some blood work..also it may be too early to feel lots better anyway...at first i thought i might feel good in two weeks..no way...the itching is going away but still feel that bitting no see ums feeling for awhile every night..eyes hurt...head aches...and very tired..i think i'll be fine in 6 months...good luck....keep posting.....billy
That's terrible that you're dealing with so many issues. I believe most of your issues as far as aches and pains are fairly normal for a few weeks after tx. The mouth thing is not. You should see an ear, nose and throat specialists, I'm not saying it's serious or anything but you need a professional opinion. good luck!!
I just finished my treatment on the 22nd after 24 wks and UND at 4,8,12,18 weeks. Although it is nice to be off the drugs I still have most of the sx going on plus the aches and joint pain you are feeling with headaches, earaches and eyes too. I know it's only the first few days but I think my immune system was attacking everything under the sun including the virus so it's still in overdrive. Its wonderful to be UND but we have a ways to go. Before tx it was my right hip and now its hips, knees and back. I guess our bodies detox as well so the drugs have to exit somehow so it is a good idea to keep drinking water too.
The drugs 'exit' quickly enough..its the immune and nervous system that often does not return to its normal state...hence the 'after-effects'...not side effects. Some can last a long time, and for some, there can be permanent sx. And yes, the 'mouth and lip thing' is something that often does happen after tx. I know several people personally, and myself, that have had ongoing severe mouth lip, cheek and gum sores and erosion since ending tx. My doctor treated it with local anesthetic in liquid form, but it did no real good, and just numbed my mouth for minutes. Plus, you can't use that kind of drug for long. For those that have not read past threads on after-effects of tx....you might want to see how your experience compares to others on the forum.
Hi Doubledose: All those reasons why I won't treat. I think I will end up dying from HCV. I have read your post as so many other here. There are many very inspiring (but why o why are these drugs so damm toxic? I know that's another blog.
Gerbils - I pray you get better and yes - you are scaring the newbees (me) to death who haven't treated yet. lol.
While I am not done yet, I have had a problem with mouth lips since the 4th week, I believe that Hondapatches wrote to me that she had same. It felt like something was in my lip. I have fever blisters, cold sore on lips and in mouth/
I had thrush the last time I treated so thought this was same not sure. I am eating yogurt every day, using nystatin, drinking water, trying take a few walks every day.
I do understand that we think we will feel better however I have b een warned that I may get sick, with body's immune system on overdrive; once you stop there isn't much immune system
Hang in there you have been through the worst and are UND and will get to SVR. Last time I felt like you and thought I had exacerbated things. I went to rheumatologist who wanted me on daily meds. I decided to use motrin only on days it was really bad, within 6 months the pains were down to a dull roar, the mental took a bit longer
Thank you for writing
It is to soon to expect to feel better. The treatment drugs are very powerful and harsh drugs and take time to leave the body. Ribavirin takes months to clear the body. And like some of the others said interferon can have long lasting and even permanent damage.
My feelings are it is still worth it to be clear of HCV.
Hope all or most of your problems subside soon.
best of luck
About 2 hours after I take the ribavirin, my lips swell up. It's annoying and I feel like I should be in a David Lee Roth MTV video. It does go away a few hours, and because of then deflating, they end up being really chapped....day after day. In in my 16th week post Inc. My month is also miserably dry with sores, to the point that I barely eat, and keep losing more and more weight. Between my mouth and lips, I'm a bit self conscious taking to people and being around them. I know part of my problem is I have constantly had a scopalomine patch for nausea on, which dries up all the mucus membranes. I can't wait to be done with all this....
Good to log on n "see" you. I'm week 25 of 48. Ditto all ur symptoms. I hurt so bad n it's getting worse daily. Headache is almost constant. Allergies, nosebleeds.
I'm really believing that it will pass post tx. For the first time I'm afraid I might not make it through this semester. I'm determined.
My granddaughter saw a commercial n asked why anyone would take something that caused so many side effects. I told her I want to live and see her graduate from college. I want to see her become a mother. I want to get married again and go teach English in an impoverished country.
In other words, I took the risk like we all did. Hang onto the hope that our immune systems will recover. Be patient w yourself..
Xoxo Karen :)
so sorry to read about your after effects. i hope you go to a doctor to have your mouth checked out. they dry santa ana conditions here in san diego have certainly given me dry lips and cracked sores in the corners. i use aquaphor. it really helps my lips. i also have a bump on my tongue. i thought i bit it but after 2 weeks i still have it. it's gone down but it's still there. i'm having it checked out. good luck with everything. i'm sure it'll all work out. keep me posted. have a safe new year's. belle
I didn't mean to downplay ur symptoms. I know you're hurting and I'm sorry. Truly. I got weepy reading ur post. I guess I just identify w you and feel somewhat comforted that we're not alone. I'll send prayers n good vibes ur way. We'll live this day to our best. xo Karen :)
Thanks, wd. I have the other stuff you have too. Headaches ( I have one now), eye stuff. I guess I have a lot of stuff left still and after a while you only notice what is bothering you the most at the time. I probably do not drink enough water. I need to work on it. The vitamin thing is a good idea. I have had low neutophils, and been anemic for a long time (due to the tx) so that stuff probably has long term effects too. Coming straight off the meds probably is a shock to the body. I definately believe that they build up in your system over the first few weeks and at least the incivek
Sorry- I have a sticky cursor this AM and it sent my message before I was ready. Anyway, the incivek I think reaches a peak at some point and when you stop taking it suddenly I am sure the body has an interesting time adjusting to the remaining meds. If this stuff can kill a very tough virus it has a lot of power and possibly has other effects as well. Btw wd-I hope all is going well for you- I was watching your posts and know you had a tough time. Also appreciated the way you stood up for what you believe on here. Take care, hope you will SVR
These sfx sound just awful. I'm wondering if you've ever tried acupuncture. My husband is in tx now, and is going to an acupuncturist 2x week. He goes the morning after the shot, and it has helped immensely. Not sure if it would help you, but I think anything is worth a try at this point. Best of luck to you!
Just a heads up on Peripheral Neuropathy, this email addresses Tyzeka which is mainly used for HepB, but it also talks about interferon alone. just a heads up.
Date: Dec, Fri 23 2011 13:29 -0500 (EST)
Subject: FDA Hepatitis Update - Tyzeka (telbivudine) labeling updates re: use with pegylated interferon alfa-2a
On December 23, 2011, the Food and Drug Administration approved revisions to the product labeling for Tyzeka (telbivudine) to include a contraindication regarding the use of Tyzeka with Pegasys (pegylated interferon alfa-2a) due to increase risk and severity of peripheral neuropathy. The Medication Guide was also revised accordingly. The following sections were revised:
Combination of Tyzeka with pegylated interferon alfa-2a is contraindicated because of increased risk of peripheral neuropathy
Warnings and Precautions
Peripheral neuropathy has been reported with Tyzeka alone or in combination with pegylated interferon alfa-2a and other interferons. In one clinical trial, an increased risk and severity of peripheral neuropathy was observed with the combination use of Tyzeka 600mg daily and pegylated interferon alfa-2a 180 micrograms once weekly compared to Tyzeka or pegylated interferon alfa-2a alone [see Contraindications (4) and Drug Interactions (7)]. Such risk cannot be excluded for other dose regimens of pegylated interferon alfa-2a, or other alfa interferons (pegylated or standard). The safety and efficacy of Tyzeka in combination with pegylated interferons or other interferons for the treatment of chronic hepatitis B has not been demonstrated. Patients should be advised to report any numbness, tingling, and/or burning sensations in the arms and/or legs, with or without gait disturbance. Tyzeka therapy should be interrupted if peripheral neuropathy is suspected, and discontinued if peripheral neuropathy is confirmed
A clinical trial investigating the combination of Tyzeka, 600 mg daily, with pegylated interferon alfa-2a, 180 micrograms once weekly by subcutaneous administration, indicates that this combination is associated with an increased risk of peripheral neuropathy occurrence and severity, in comparison to Tyzeka or pegylated interferon alfa-2a alone
Office of Special Health Issues
Food and Drug Administration
Division of Antiviral Drug Products
Food and Drug Administration
Thank you to all that responded to my post. But as long as it appears to be something that is normal (for people off tx) even though its abnormal, then that's good, right? I will say that the symptoms come and go but mostly they are here with me. I do still have the swollen lip too. Unfortunately I don't look like a rock star with the lip, but hey!
Crossroadsec-don't feel bad about anything you've said. By the way I've been reading your journal and just wanted to say you write beautifully. If you do not have an outlet for your writing talent (other than this forum) the world is missing out on very talented individual. You still have dreams and I will be praying that all of them come true. You deserve it..
Dee1956, Dear friend if I said you exacerbated something it was a typo! I had thought incivek (and or the other meds) exacerbated things we already had like asthma and allegies and an achy joint but like wtbleep the only thing I had before was a cranky left elbow- the same elbow now is really painful but now I also have the right shoulder that hurts so bad I have trouble raising arm straight out, and both hips, and back are painful too. I will continue to stay as positive as possible. There is comfort in knowing you are not alone and I appreciate you all!
I am sorry if I scared you. Fear seems to be a natural reaction to being diagnosed with hep c and preparing for treatment. In my case it took a little time to believe the tests that said I could had hep c and it seems that more fear set in as I began looking in to the treatment and took additional tests. I was diagnosed last year before the three drug combos were released and the results of my liver biopsy were such that my doctors told me if it was them they would wait for those drugs. I did wait but thanks to the folks on this forum sharing their experiences, I was able to go in with my eyes open. I started the 3 drug combo shortly after they were released and now am done. The decision about when to treat is personal and should be made based on your individual circumstances and health status along with advice of medical staff you trust. I have faith and hope that all of the "after effects" will disappear within the next year and I will then be rid of a virus that has the potential to do great harm. I believe I am better off without the virus and that the potential consequences of it being in my body were too great to ignore. Milliehepc I hope you continue reading on the subject and staying informed. Get the counsel of great doctors and get the tests you need so that you know where you truly stand with your health and the status of your liver. We all should have a realistic idea of what to expect in treatment, we also need a realistic picture of what can happen if we don't treat. I wish you all the best mil, take care! If I could go back and redo the part of my life where I did the treatment and undo it- I wouldn't. FYI,
I was a 1a and treated with INF and Riba for 48 weeks ending in fall 2010 with SVR in April 2011.
I feel very good now at 59 and over one year out of treatment. I had joint pain through treatment and beyond and often took up to eight extra strength rapid release tylenol a day for pain. I felt incredible relief just finishing treatment but had lots of things come and go that felt scary and I was always wondering if this or that would take hold and worsen. My memory of all of this is fading now, but I remember the fear.
I have this tremendous positive attitude which I always had, but I felt unsure and emotional often and wondered always if I would gain strength or remain in a weakened state. Believe me, my husband was even carrying my pocketbook etc when we were anywhere because it would tire me out faster if I had it and he just wanted for us to be out together. So there I was dragging myself along, short of breath or whatever. It was always something, even if it was just a little thing that day.
All that has changed .
I am up from 7 to 8 am now through 10 or 11 pm most days without feeling tired unless i've done too much. Shopping no longer bothers me. My arms don't ache from lifting the bags anymore. I can lift quite a bit without consequences while gardening. I am back to exercising. I have occasional need for tylenol like several times a week but no more regular dosing to control a new bout of joint pain. I went to a wedding recently and danced quite a bit. I would not have done that even six months ago.
Frankly, I wish I had kept a journal of some kind because I had so many issues that came and went that I now cannot remember when something came and how long it lasted anymore. I just feel that you drag yourself through treatment if you must treat right away or if you cannot stand the thought of walking around with hepatitis c. That was my thing. I had no damage, I just wanted to get on with it and get it gone before something else happened.
I believe there is a very good chance you will steadily improve as time goes on. I think a lot of people have very little trouble and others have more, but issues can resolve over time. I am extremely sympathetic to anyone who has lasting lousy side effects. The drugs are so strong. It is to be expected. Reading the listing of side effects is very sobering. But still, for a life saving treatment, many are willing to take the risk. I was and so were you.
Congratulations on FINISHING ! Hang in there! I believe better days are coming.
Please don't get discouraged; it does take time to recuperate from tx - often longer than we'd like, that's for sure. Do watch your water intake and up if neccesary - it's just as important post tx and during tx. IMO, our body is doing some heavy duty detoxing and needs those fluids to keep flushing the system, so to speak.
Get your tyroid tested, if you haven't already. Mine didn't go haywire until 3-6 months post tx and getting on some thyroid meds helped enormously with fatigue and especially the pains in my knees.
I had excrutiating pains from about 6-12 months post ( mind you, I did 72 weeks of the old stuff, so don't be too alarmed). There was talk of putting me on meds for fibromyalgia, even got the darn things, but never started. Almost 12 months to the date of finishing tx, most of the sx lifted, and I can honnestly say, I can't remember when I''ve ever felt this good 1 1/2 years later.
The only other thing I'd like to add is to keep moving; even if you're not up to running a marathon, keep active. I added on pounds from inactivity due to the joint pain, which increased the pain, but diminished remarkably after I started losing those pounds again.
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