Post treatment- lingering issues peg+riba+incivek

[Gerbils]

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.

[Gerbils]

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!
G

[orphanedhawk]

Holy Moley,
You just stopped treatment. It takes time for your body to readjust itself.

Have you ever had a baby? How long did it take your body to return?
How about your emotions?

You just went through the equivalent of chemotherapy.
Give yourself time to heal.
Eat well, exercise, and yes, drink lots of water.

It took my over a year after my first treatment for my dreams to return.
(Luckily, this time I'm still dreaming.)

Does that mean you won't have long lasting effects?
It's way too soon to tell.

Good luck
OH

[fretboard]

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:

Contraindications
Combination of Tyzeka with pegylated interferon alfa-2a is contraindicated because of increased risk of peripheral neuropathy
Warnings and Precautions
Peripheral Neuropathy
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

Drug Interactions:
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

Richard Klein
Office of Special Health Issues
Food and Drug Administration
Kimberly Struble
Division of Antiviral Drug Products
Food and Drug Administration

[stormy456]

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!

[Gerbils]

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
G

[Gerbils]

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