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Post Treatment Side Effects
New to this forum, I found it in search of finding out about post treatment issues. I just completed triple therapy with Interferon (Pegasys), Ribavarin, and Victrelis (Boceprevir) as of May 31st and am having severe joint stiffness in shoulder joints and some nerve twitches (?) in various other places. I wake up every morning and can hardly lift myself out of bed...takes a few hours to be able to raise my arms to do normal activities. Also, for many weeks I was on Procrit and Neupogen for low red and white blood counts. I am aware that it takes some time to feel normal but was wondering if anybody else has experienced these types of problems or know about specific side effects after taking any of these drugs. Overall, I feel wonderful just knowing I don't have to ingest those nasty drugs now. I know it could be worse but...just wanted to know what others have experienced after treatment. Thanks for your input.
Those who are currently on treatment...keep up the good work and you WILL be happy to complete this program. Don't give up!
Those who are currently on treatment...keep up the good work and you WILL be happy to complete this program. Don't give up!
Yoga is an excellent idea, either that or Tai Chi. It does take a long time to get the drugs out (3 months for interferon to be completely eliminated, and 6 months for the ribavirin), but it also takes time to rebuild the muscle tissues that tend to be lost during tx, and I think that loss of muscle strength really contributes to joint pain. To my thinking, if your muscles are weakened they can't support the joints properly and movements or even static postures can put more stress on joints than they are really meant to handle, especially since most of us are old enough to have some level of age-related joint deterioration anyway, even if it wasn't enough to show signs before tx. Ha, now I just need to take my own advise and get into a regular yoga or tai chi class! I have at least been on a steadily increasing walking schedule and am showing slow but steady improvement from that, but yoga or tai chi would certainly accelerate it.
I am 6 months post tx (relapsed) and still have very noticeable joint pain, peripheral neuropathy, and stiffness, none of which I had before 48 weeks on Inf/RIBA. There are times when it is very difficult to walk and friends have remarked on the change in my gait and on my groaning when I get in and out of cars, sit down, stand up, and so forth. All quite new. I exercise, but it doesn't always result in less pain and stiffness. I am going to start yoga, I think.
It does get better over time. The first 6 months the ribavirin is still in the body. I think the inf causes the pain but just not sure.
I wish I had forced myself to do a little walking as Orphan Hawk suggested. It really does help, even if you feel bad you can walk around the block. That gets your blood going and helps flush out the bad stuff.
As does the water
I am very happy to say I just had my blood work done and I am still SVR 16 months post tx.
Woo hoo!!
Feeling good.
I wish I had forced myself to do a little walking as Orphan Hawk suggested. It really does help, even if you feel bad you can walk around the block. That gets your blood going and helps flush out the bad stuff.
As does the water
I am very happy to say I just had my blood work done and I am still SVR 16 months post tx.
Woo hoo!!
Feeling good.
Hi , I did 24 weeks rib and peg and from 2nd month on it got very difficult I was so tired, no sleep , severe weight loss did not feel like eating at all, lots days I had to drag my self out of a chair. I finished June 26 2012 go for blood work on Monday next week . Praying still SVR . I don't have any bad side affects right now . I had arthritis and was not any fun before but no worse now . So sorry you feeling so bad in mornings I truly think it will get better. I was type 3 . Keep trying
God Bless
bbj
God Bless
bbj
Yes SVR is the goal and I sure hope your hubby can get better soon.
I wish I knew which medication caused the pain. I had to take Neupogen to build up my white BC as well as Procrit for anemia. These were additional shots I had to endure. Seems like these meds may have left me with joint pain...the pharmacy told me bone pain was one of the side effects of Neupogen.
Thanks for your input and good luck to your hubby too.
I wish I knew which medication caused the pain. I had to take Neupogen to build up my white BC as well as Procrit for anemia. These were additional shots I had to endure. Seems like these meds may have left me with joint pain...the pharmacy told me bone pain was one of the side effects of Neupogen.
Thanks for your input and good luck to your hubby too.
I appreciate your comments and I did have the exact same treatment as you. So after 9 months, you must be SVR...that is a good sign. The worst thing during treatment was the nausea and that horrible taste I always had. Don't miss that and food tastes so much better now.
Your pain sounds familier to what is going on in my shoulders. Fortunately, I don't seem depressed but do notice that I am having problems focusing on any one activity. I enjoy sewing and have been trying to continue doing that but little motivation. Anyway, I think doing yoga will help with this stiffness...sure makes me feel old (smile). My shoulders are just so sore and stiff that it takes me a while to lift myself up out of bed...that's what I meant by having a hard time getting up. Throughout my tx, I was late going to bed (1:00 am) and late rising. So I am getting out of bed really late (10:00 am). I plan to change this sleep pattern ASAP!
Keep up the good work BoceprevirGal and let me know how you're doing. Thanks so much for responding to my comments.
Your pain sounds familier to what is going on in my shoulders. Fortunately, I don't seem depressed but do notice that I am having problems focusing on any one activity. I enjoy sewing and have been trying to continue doing that but little motivation. Anyway, I think doing yoga will help with this stiffness...sure makes me feel old (smile). My shoulders are just so sore and stiff that it takes me a while to lift myself up out of bed...that's what I meant by having a hard time getting up. Throughout my tx, I was late going to bed (1:00 am) and late rising. So I am getting out of bed really late (10:00 am). I plan to change this sleep pattern ASAP!
Keep up the good work BoceprevirGal and let me know how you're doing. Thanks so much for responding to my comments.
Thanks Dee for mentioning the link. I will certainly check it out! Also, am so glad you mentioned drinking plenty of water as I had gotten so tired of doing it, I simply stopped. I will do it because I did notice some fluid retention lately.
So I assume you are SVR...after a year. That is wonderful and I am thinking positive and assuming I will be too. Take care and I am looking forward to to reading the other info.
So I assume you are SVR...after a year. That is wonderful and I am thinking positive and assuming I will be too. Take care and I am looking forward to to reading the other info.
Thanks for your comments. I did see that post about 5 months post tx and was surprised that it takes this long but glad to see improvement. So there is hope for us...right?! I too worked out regularly and am thinking I will feel better if I can get back in the gym but am hesitant for a few weeks. Just happy not to have to take the meds right now (smile). Take care.
hi and welcome to the forum. My hubby 8wk post tx and he too is suffering with joint pain, and it wakes him up several times a night i to posted asking same question as you and i gather that it is a very problem, hopefully it will disappear soon. Good luck and hopefully to SVR
I am 9 months post-treatment, with a 28 wk Victrelis regimen...were you 28 wks also?
I also had to do Procrit, for 10 weeks, so it was hard to determine if it was the Interferon or the Procrit that started my main problem, which was stiffness in my hip and knee joints. This pain and weakness started half-way thru treatment, and continued on, but has gotten slowly better, due to diligent and gentle exercise.
Perhaps the trouble you have getting up in the morning may also be due to depression? I feel like I have more depression, since I did the Interferon, and it hits me in the morning.
I try to go out and get a cup of coffee right away, kind of a distraction method, but as the day goes on, I do feel better. I hope you start feeling better soon. It took 6 months for my labs to go back to normal, and I am still looking "out of shape", but I keep pluggin on~
I also had to do Procrit, for 10 weeks, so it was hard to determine if it was the Interferon or the Procrit that started my main problem, which was stiffness in my hip and knee joints. This pain and weakness started half-way thru treatment, and continued on, but has gotten slowly better, due to diligent and gentle exercise.
Perhaps the trouble you have getting up in the morning may also be due to depression? I feel like I have more depression, since I did the Interferon, and it hits me in the morning.
I try to go out and get a cup of coffee right away, kind of a distraction method, but as the day goes on, I do feel better. I hope you start feeling better soon. It took 6 months for my labs to go back to normal, and I am still looking "out of shape", but I keep pluggin on~
Hey C, I was on peg/rib for 24 weeks and 12 weeks post now. Remaining symptoms are minimally bothersome but not anything as bad as treatment. I started working out slowly at week 4 (post tx) and am up to pre treatment level now. I did develop a couple of bad but transient episodes of what must have been fibromyalgia (or something similar... intense pain with movement) at about recovery weeks 3 & 4, the intense itching and rash of treatment decreased then cleared about weeks 8 or 9...with the exception of what seems to be patches of psoriasis which surfaced and remain on previous scar tissue (back).. strange. I know exactly what you mean with dragging yourself out of bed, I used to be a very light sleeper and hit the ground running all my life before treatment, but now I sleep very soundly and my head feels hung over in the mornings requiring major motivation to get up. It clears with strong coffee and a couple of hours. Someone posted here a few days ago who at 12 weeks was still having unresolved issues but now at 5 months feels very good...but I don't recall if mentioned triple therapy or not. Good Luck
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Perhaps you could do some gentle stretching or even walking to help with the stiffness. It took me a good year to recover from the tx I was on. I found that moving helped me more than anything. It took me a while to figure that out.
Many people have joint pain after tx as well as joint pain. You are not alone, I am sure others will be along very soon.
All my best to you
Dee
p.s. if you go to the top of the page and click on magnifying glass you can search for post tx sx and find a wealth of information while you are waiting for people to respond.