Is this arthritis, or side effect of post Hep C treatment?

[Wildorchid1121]

A year ago I finished a study for Hep C with TMC435, slowly but gradually I have been developing joint pain, with wrists, hands, and fingers hurting the most.  My knees are now beginning to hurt too, like a stabbing pain, and sometimes the hip pain can get unbearable. I have been thinking there might be a connection between the medication used in the study and the joint pain, since I met another person through MedHelp who was also participating in the study the same time I was, and she too is experiencing the exact same symptoms as I am. So far, every doctor I've seen can't seem to help, one doctor says one thing, the other says no it's something else. I have an appointment to see a rheumatologist, but I just want to know if someone out there might know something about this. The pain is affecting my sleep since it wakes me up many times during the night, and I can't even stay in bed because of the pain. Is this arthritis, or is this the side effects of post treatment?

[Proactive]

Arthritis is a pretty easy diagnosis. Have you had blood work for rheumatoid factor? Xrays for osteoarthritis?
pro

[Idyllic]

I was just wondering if your study included the TMC435 plus pegylated interferon and ribavirin and whether you cleared the virus.

Hope  you feel better :)

[flcyclist]

Hey there, remember you from some time ago.  Sorry to hear about the joint pain.  Hope they can help ease it some for you.  Don't have anything to offer for advice, but want to say a quick hello.

[belle19]

you need to tell us a little more of your history...genotype?  were you on ribavirin and/or interferon?  did you achieve SVR?  sorry to hear about your pain.  best wishes.  belle

[mykids247]

funny that this came up but I have been having joint pain, knee's one wrist and legs not feeling just right. Some days worse than others. I was putting off to old age. LOL, but serious. I am g2 and treated with soc......was so excited when I got the SVR news at dr.s that I didnt mention it. I see him in six months if it gets worse I will call.

[beeblessed]

Hello my friend!  Sorry to hear this.  For now, see if you get relief from soaking with Epsom Salts, and putting Bengay on at night.  Advil or Aleve, if that's alowed for you.  At my post check up, my doc mentioned that my bone marrow was recovering nicely, soooo I wondered what it would mean in terms of pain, if it wasn't.  There are several other things that could cause this type of pain, so keep at it.  Not sure that arthritis would present all at once.......but the meds I was on, seem to have sped up the issues I had pre-tx.

Here's an article, but I'm guessing your studydidn't include this drug:
http://www.ehealthme.com/ds/pegasys/rheumatoid+arthritis

Also, you should contact the FDA and the drug company to let them know your experience.  If no one lets them know of the possibility that arthritis could be a side effect, nothing will be done.

Be well and go to the hospital or urgent care if you need to.
Best,
Bee :0)

[Wildorchid1121]

Hi,

I have an appointment for October 12, I am sure they will do all sorts of tests. I just hope I can get something for this pain, it is just taking the best of me! No x-rays either. I just want to know if anyone else is experiencing the same after finishing treatment, maybe then the doctor can look into that too as a possibility. Thanks for your comment.

[rambleon40]

Arthritis symptoms very commonly emerge in the months FOLLOWING completion of INF combo therapy, sometimes accompanied by slight nervous system disorder (numbness, loss of balance / precision/ tremors).

Actually, many of the worst lasting side effects emerge after completion of treatment. One's immune system gets jacked.

I had symptoms (joint and bone pain, loss of balance / falling, difficulty with getting out of bed, stairs, etc) that went from severe / terrifying as they spread and grew over the 3 months to 1 1/2 year post-treatment.  They have since (now almost 4 years post-tretament) stabilized and subsided somewhat.  

If you enjoy an active lifestyle (sports, outdoor activity, etc), INF combo therapy has much more risks to your quality of life than if you are more sedate.

An anti-inflammatory diet is very helpful to many post-interferon syndrome symptoms.  I cannot stress this enough.  

Welcome to the party!  Didn't get an invite, did you?  :-)  

Good luck!

[Wildorchid1121]

To Idyllic

Yes, pegylated interferon and ribavirin plus 12 weeks of TMC435. Study lasted 24 weeks from April to October of 2011.

I wanted to add that:

I moved from Atlanta to Florida in December, that month's test was still undetectable. On December 22 I went to Puerto Rico, unfortunately my Mom became ill, and eventually passed away in February, so I ended up staying there 2 months, and missed my February lab work. I missed my February lab work and when I came back I called and asked if I could have them done in Florida and they said I had to have them done in Atlanta. It was just impossible for me to drive 10 hours, stay at a hotel and then drive back next day just to get the tests done. So to make a long story short, I didn't go back for blood work. I did go to a family doctor, and as of February I was still undetectable. My last lab work would have been this month, and it was very frustrating for me to not be able to continue all the tests until the end of the study, but it was just impossible for me to drive so  far and so frequently to Atlanta.  I could not find a hepatologist where I live, so I made an appointment with a gastroenterologist who treats Hep C patients, so I will be getting blood work then. My fingers are crossed, and I pray for the best, but deep inside my heart, I have faith that I am cured.

[Wildorchid1121]

Hi flcyclist!!!

How have you been, so nice to hear from you! It's been a hectic year with all the things that have happened, but the worst was losing Mom, I thought I wasn't going to be able to get out of the depression, but thank God I did. She prayed so much for me while I was going through the study. If it wasn't for the joint pain, I would say I feel great. I have more energy than ever, and I can practically turn the house upside down when I am cleaning, but the pain doesn't let me do much. It seems to get worse and it is very frustrating, finally I feel great again, and now this hits me. I just hope the rheumatologist I am going to see will help me somehow.

Take care OK? And keep in touch, it's always nice to hear from the people we shared our experiences with during the study!!

[Wildorchid1121]

Hi Belle,

Here is a little about my history. I had a blood transfusion in 1978, after the birth of my youngest son. In 1992, after donating blood I found out I had Hep C, nothing was done because the doctor said not to worry, "it's dormant." So I didn't worry. In 2003 at a doctor's visit, blood work was ordered after she asked me if I had had a blood transfusion on or before 1992. I told her I always had the same question asked and no one had really done anything about it. Less than a week later the results came in, of course positive. Genotype 1. She recommended a gastroenterologist who was working with Hep C patients, he ordered blood work and a biopsy. The biopsy revealed I was at stage 1. I started treatment with pegylated interferon and ribavirin for 48 weeks. Pure hell!  Six months after treatment the viral load had sky rocketed. I decided then to go see a hepatologist, he said that I should wait until something better came out. Of course I did not want to go through the same thing all over again just to have the virus come back.

In 2006 I had gall bladder surgery, the hepatologist requested a biopsy which revealed the virus was now at stage 2 almost 3.  I moved from Ohio to Georgia in April of 2010, and my doctor in Ohio recommended a hepatologist in Atlanta. The new hepatologist told me a study with TMC435 was programmed to start phase 2 in January of 2011, I got on the waiting list. After all the tests were done, plus another biopsy, I started the study in April of 2011. The biopsy revealed I was back to stage 1, never understood why, but I was too thrilled to even ask!

I was on TMC435 for 12 weeks, and pegylated interferon and ribavirin for 24 weeks. What I went through during the study was as bad as the first treatment, maybe even worse since at one point the doctor talked about a transfusion, to which I gave a definite no, after all, that is what started all of this in the first place.

The rest I wrote to Idyllic and you can read there what has happened since then.

I feel so much better now, except for the joint pain, but my energy level is way better than what it ever was, I am positive I beat the virus. I have an appointment in October and I will be getting more lab work, I will definitely post the result.

Thanks for your response.

[Idyllic]

You ought to start a thread about this particular trial. That way other people can find it and add to it. When someone is searching for "TMC435 " trial info the title "Is this arthritis, or side effect of post Hep C treatment?"  might not turn up in the search query,

[Wildorchid1121]

Hi, thanks for your comment,

Are you still in treatment or did you finish? It sounds to me you already finished, how long ago? I too blamed my aches and pains on my age.... but still, it shouldn't be so bad and so sudden, it just hit me real quick.

Last night my knees felt like if I had been hiking all day, I could barely sleep, this is definitely getting worse by the day.

We definitely need to look into this, can't wait for my appointment!

Take care!

[Wildorchid1121]

Hi beeblessed,

I am sure I had received comments form you when I was going through treatment, right? How are you doing?

Bone marrow recovering nicely??? Is there something else I don't know about the treatment??? Does it affect the bone marrow??? Wow, I'm speechless. I take Advil and Aleve and it doesn't help, nothing seems to take the pain away, I haven't tried Epsom salt yet, but it's a good idea. Using creams help just a little and then the pain comes back, but it never goes away completely. My pain is 24/7 which is what really bothers me, last night the knee pain (both knees) did not let me sleep, and when I got up I could barely walk straight. It's affecting my life in so many ways because I have come to the point that I basically don't want to go anywhere.

Another thing is that I was not able to finish my post treatment blood work because I moved, being out of the study I cannot call to let the doctor know how I feel now. I know they are frustrated about me not finishing, maybe even upset. I appreciate all they did, and letting me participate in the study, but they can't be as frustrated as I am wanting to know how I did in the study, and being able to take care of things as they happened, like what I am going through right now.

Take care.
Thanks for your comment.

[Wildorchid1121]

Hi rambleon,

No I did not get an invite....LOL ....It's an invite no one wants right? I knew that using these meds which are poison to our system had to eventually have other side effects, this is not a very welcome one! Are you feeling better to the point that it doesn't affect your lifestyle as much anymore?

I went to Puerto Rico 2 months after finishing treatment, and was feeling fine, ready to enjoy Christmas with Mom. Unfortunately and unexpectedly Mom got ill and passed away after 33 days in the hospital. Of course depression kicked in. It wasn't until around June when all this pain started and does not seem to get any better, on the contrary, it persists and gets worse, never gets better. Just taking a day at a time, hoping for the best.

I have been looking into the anti inflammatory diet, it's great you mentioned it, as I was not sure how it would work.

Thank you for your wonderful comments. Take care, I am very happy you are feeling so much better.