TMC 435/Simeprevir - Long term post side effects

[Wildorchid1121]

When I posted the thread "Is this arthritis, or post side effects of TMC 435 treatment?" I had a few responses, one of them recommended that I post it as TMC 435 side effects. Well here it is: Since I last posted the thread, I have been feeling worse and worse, it just seems like everyday there is something new going on with my body. I went to see a Rheumatologist who prescribed Gabapentin, it did not help at all. So he started me on Lyrica,it's been 2 weeks and I feel no difference. I am taking 50 mg 3 times a day. It is just horrible when you go see a doctor, whom you think will be able to figure out what is wrong, and prescribe the best med for it. Not... he looks at me and asks 4 times during my visit: "so, the Gabapentin didn't do anything?" I felt like asking him what part of  "it didn't help me" did you not understand???? So here I am with terrible pain on my joints, specially my wrists, pain on my lower back that feels as if someone is cutting me with a knife when I bend over, (I was told by another doctor that it is the sciatic nerve...)
When I get up, my ankles are so stiff I can barely walk, my hips hurt so bad specially when I am in bed. The pain is so severe it wakes me up at night. I have to get up, walk and let the pain ease up a bit, so my sleep is also interrupted. I don't remember when was the last time I slept the entire night and woke up feeling rested. I have had therapy, injections, and pain meds, nothing works. Right now I am at the point where I don't want anything else done and just live with the pain. I barely go out, my bonsai are dying or growing like crazy, and I don't have the energy to work on them. Everything and anything is a struggle, I thought I had rheumatism, but after having a test done, it came back negative, which is awesome...so what is it???

I am also very depressed, it is tough living in constant pain, and nowhere to go and find an answer. I was treated in Atlanta, and I moved to Florida 2 months after finishing the study. The study required that I was continue getting lab work until October of 2012. The study coordinator and the doctor wanted me to go back to Atlanta to finish all lab work, but it was just impossible for me to drive or fly there just for that. So I have no doctor to ask questions to, and the ones I have know nothing about the Hep C treatment and/or post side effects.

Is there anyone, who went through the TMC435/Simeprevir study/treatment been going through the same thing? I am sure it has to do with the Interferon, and not the Simeprevir, so I should ask if all of you who have gone through Hep C treatment with interferon have the same symptoms? Anyone find any help? If so please let me know, I need help bad!!!!

I had a lot of help and support when I was going through the study, and I know there is someone among all my knowledgeable MedHelp friends that might have some info that can be useful, and help me get through this.

Thanks to all in advance, and God Bless.

[Dee1956]

Hi I was wondering how you are doing.  There is a new forum you can go to.  to ask questions.

http://www.medhelp.org/forums/Hepatitis-C-Post-Treatment-Issues/show/1670

[Wildorchid1121]

That's great, I hope you continue seeing improvement. Anything that helps is better than doing nothing. I got in contact with another lady who I met through this forum, and I asked her for her doctor's phone number in Ft Lauderdale, which is 2 hours from me, (better than 10 hours to Atlanta LOL.) They had the same tx there as I had, so I am hopeful that he can give me some info about it and what they are doing for patients with long term side effects of interferon.  Hope I can find some help.

I can't walk for too long, or sit for too long or the pain will kick in, so the mall and the movie theater are no longer in my to do list!!!!

Best of luck to you, take care.

Take care.

[Wildorchid1121]

It definitely has to be the interferon, after all it is the only common thing we all had during tx.. I finished tx Oct. 2011, so after almost 2 years the pain is getting worse and I have felt no relief. I have heard some people saying the long term side effects can last up to 7 years, so I can't believe having to wait 5 more!!!! I hope no permanent damage is done.

Good luck to your hubby, and best wishes to both. Thanks for the reply.
Carmen

[BoceprevirGal]

  My joint pain started to improve about 8 months post Tx.  I have been making  fruit smoothies in the blender. and I include whole flax-seeds, sun flower seeds, sesame seeds, chia seeds...I look for stuff that turns intoOmega oil, and grind it up myself. I also do gentle exercise, like walking and riding a bike, but I wouldn't over-do it, when you have joint pain~

[cheflady]

hi my hubby finished triple tx end of April he was teleprevir though, i agree i think it interferon related hubby got bone and joint pain legs arms shoulders hips back etc none before tx he also wakes several times a night with the pain,he is on various painkillers none work the hep doc is very flippent just saying that we all get joint pain as we get older! Great help!! We just hoping and praying that once drugs are totally out of his system things will improve. I wish you all the best and hope that things start to improve love Jules

[Wildorchid1121]

Hi Dee,

Yes I was tested, it came back UND. The joint pain started about 4 months post tx. It is definitely getting worse. The Rheumatologist did tell me that Gabapentin and Lyrica are basically the same thing, so I don't know how he expects me to feel any difference. Prior to tx I felt fine, no joint pain, no symptoms at all.

I checked the site you sent me, I had seen it as I was searching the forums to see if anyone posted something similar. I was not surprised to see how many people are experiencing the same things, as I was positive sure it was a result of the tx.

Many doctors give you these weird responses, or looks that make you feel as if they think you are a nut case in progress. It's just horrible to be feeling so mush pain and not having a doctor be able to pinpoint what is wrong and what to do about it. I was prescribed Vicoden, it just makes me sleepy, but does nothing for the pain. I have also been prescribed Flexeril, with no result. I don't know if to try another Rheumatologist, maybe a GP will guide me in the right direction, or just try to find a Hepatologist who is familiar with the Simeprevir study and post-tx long term side effects.

Thank you Dee for your response, I appreciate it very much.

[Dee1956]

Here is one of them, hope it helps,
http://www.medhelp.org/posts/Hepatitis-C/Post-Triple-Therapy-Side-Effects-Joint-Pain-Stiffness/show/1945792

[Dee1956]

Many people have found post tx that they are having problems with their thyroid.
If you click on the magnifying glass icon at the top of this page; you can search for joint pain post tx.  there are many many people with the same problem.  I wish one of them could find out what is causing it and come back to share.
Good luck
Dee

[Dee1956]

Have you been able to be tested to make sure you are UND as far as viral load? Many people have pain after finishing tx.  It takes time to get back to normal.
Also from what I know gabapentin and Lyrica are just about the same thing.  They are for nerve pain.  I used the gabapentin/Neurontin during my first tx and it did help me quite a bit.  Of course that was all I had so no choice. Finally my liver doctor told me I could take Advil, that helped quite a bit.
Also I think you are right, because Simeprevir is in trials, has not been approved for use yet; you might receive better answers from question regarding Peg, Riba, Simeprevir.
I hope that someone can provide help. I am sorry my answer is not much help for you,
I will try to search for a better answer :)