Post side effects of Telaprevir

[Wildorchid1121]

In reference to the question I had posted before about possible arthritis symptoms associated with post Hep C treatment, this is what has happened:

I went to the gastroenterologist yesterday and he said that, of course he is not specialized in arthritis, but he doesn't think arthritis is just going to show up so suddenly in almost every joint. This to me means that he left it open to a possible post side effect of the treatment. At this point in time all I can do is wait for the appointment with the rheumatologist and maybe find out for sure.  

The gastroenterologist was able to tell me that the 3rd medication I was taking (TMC435) was Telaprevir, so 18 months after I started treatment I finally know what I was on. I will have blood work done today and in a week or so I will finally find out the results of the study. The last blood work was in February, 4 months after finishing the study, I have Faith and I am positive sure I am cured.

So my question is, those of you who were on Telaprevir, are you having any post treatment side effects? If so, what are they?

Thanks!

[Wildorchid1121]

Finally, one year after finishing my study/treatment with Simeprevir (TMC435) I just got the latest results....... UND!!!! I am so happy I could go celebrate right now!!!!!

For all of you on treatment right now: Have Faith! Be Positive and hang in there!! Hep C is will soon a be a thing of the past. It is not an easy journey but it is a positive one with great results. Mine is just one of the many success stories out there, something I would have never dreamed about when I had my first treatment back in 2004.

[Wildorchid1121]

Well that explains then why it is not working for me, I definitely have to try something else, I know for a fact that I don't have osteoarthritis.

Now after receiving Will's message, I am almost sure I was on Simeprevir.....  Simeprevir was being developed by Tibotec at the time I was on the study, Tibotec was eventually acquired by Sweden's MedivirAB and Janssen Pharmaceuticals, who are now conducting the studies.

Unfortunately, as I said before, I moved 2 months after end of study so I was not able to continue my blood work and other tests due to the driving distance (10 hours one way) and they did not accept results from any other lab from the area where I now live. They practically "demanded" that I go to Atlanta to have blood work done, and since I said I wasn't able to do it, they were very upset, so they basically "erased" me from the study. As a result of this I never got any info from them as to what I was on, which I believe I had the right to know.

I know for sure that the HCV drugs can and might be the cause for all kinds of post tx symptoms, but being arthritis-like symptoms, it would be nice to know if it is just drug related symptoms, or an early and sudden onset of arthritis. Again, not being able to see or speak to the hepatologist that was conducting the study group I was on, and getting his opinion as to my symptoms, I have to now see a rheumatlogist and go through more tests. As far as I can see, there are others who are experiencing the same thing post tx.

I was treated twice, first time was in 2004, I was on Interferon and Riba for  48 weeks. Blood work 6 months post tx showed virus was back. Chose not to treat after that, until 2011 when I began study.

How are you doing? I will definitely hang in there!!!! Thanks

[Idyllic]

Osteo Bi Flex is more for Osteoarthritis. Rheumatoid Arthritis is essentially a blood pathogen that is a disease of the blood and would necessarily respond to the same things, I hate to be Debbie Downer but absence RA or connective tissue diseases I would not put all my eggs in one basket. I have so many people finish treatment and spend so much time trying to study the effect the Hepatitis C meds could have contributed to a certain illness - only to hit many stone walls. The answer may be out there but it could be independent to Hepatitis C.

If the HCV meds were a trigger of some sort you still could possible have to start at square one. I am sorry this is happening as I know it is frustrating. I am not sure how many times you have treated but it would make sense all this might take its toll. I mean who knows.

Did you ever find out which trial drug you took? The Simepivar (sp?). Is there any data on that? Is it another PI?

I wish you the best of luck and good health.
Hang in there!!

[Wildorchid1121]

Sounds like a great theory to me!!! I did not have arthritis prior to study, and now every joint hurts, but I refuse to think it's a coincidence.

My theory is that we were being slowly poisoned with powerful drugs capable of killing this virus, and in order to do that, the good cells are also being affected and so is our entire system. Of course it is expected for something  to happen to a system that is being invaded by medication strong enough to kill cancer cells. I am not surprised about it, but I wish they would start accepting these symptoms as possible side effects and not consider it a coincidence, that is an insult to all of us experiencing different post treatment symptoms..

Most of these drugs are presently being studied, others were just recently released, not much is known about how they can affect us in the future, and it might take years to find out. So I believe that they should take seriously every symptom we all have and look at it as a possible side effect. I would hate to think that in 5 or 10 years I might read an article that says something like : "After it's release in 2012 it is now known that the drug known as XYZ, commonly used to treat Hepatitis C, is the cause for the growing incidences of cancer in the nation....."

We signed to be in a study, we know the risks, we accepted it with a clear understanding that we could experience possible side effects, including post treatment symptoms. The least we should expect from the study people is for them to treat each and every one of these seriously and not blame them on "coincidences."

Just a thought that I needed to write down.....

[Wildorchid1121]

Thanks for your comment and your suggestions.

I too feel most of the pain in my legs, specially knees and behind the knees, no swelling though. I have hip pain, but it's due to bursitis. Of course, I too think the better decision was to treat, no doubt about that.

I have been taking Osteo Bi Flex, but I haven't noticed any difference, it takes time I know, but I've been taking it for about 2 months now. I guess I have to try something stronger. I see the rheumatologist this Friday, let's see what the suggests.

I feel stiff in the mornings when I wake up, and when I am sitting for long periods of time I get up and I can barely walk, I feel like a penguin walking!!!!

Don't even dare to think that the Hep C is popping it's head back up, get that out of your head!!!!

Good luck to you on your next doctor's visit, stay positive, have Faith and be well!!!

[JDB1964]

Chiming in as I too have been concerned about the degree of joint pain I am recently experieincing. I finished a VERY benign treatment  with GS7977 and Riba 12 weeks 4 months ago. I have (starting about 30 days post treament)been very achy ,sore ,swolen fingers, hip pain etc. The study people think it is incidental or coincidental. My theory though,is that my immune system was so revved and fought so hard against this now dead virus that I that in the abscence of a virus my joints are affected. I may be crazy but I am so grateful to be free of Hep C !
Any body have ideas about this theory?

[Wildorchid1121]

Thanks Diana, I'm going to check into it!

About the Probiotics while on tx. I really don't know but I don't think there should be any interactions. You can always ask the doctor, they like to know about anything different you might take, specially if you are on a study.

After doing a Google search, I am going to definitely start taking it Probiotics, it sounds like it helps with rheumatoid arthritis, not that I think this is what I have but it does seem to help witt a lot of health issues. Thanks so much for letting me know about this, I really appreciate it.   Do you know if there is one better than another?

Thanks,
Carmen

[diesel1959]

Hello, I am happy to hear that you have cleared the virus, but are having joint problems now. I also have some post treatment problems that I am looking for answers for. I had Rheumatoid arthritis in back and knees with occasional gout systems.before I started treatment, I was on double treatment Pegesys and Ribrofiran for 84 weeks and Incevek was added for triple treatment for the last 12 weeks. The last few weeks of my treatment my knees were swollen w gout and was treated w meds for that and most of it has gone away, but I still have more stiffness joint pain than I had before most noticeable in my legs. I read about the possible side effects before and still think it was the better choice to take the triple treatment (tx). 5 months after finishing treatment I am still having problems with greasy yellow stool, I had blood work too check for viral load and for gout (acid) and I am hoping that the virus doesn,t pop its head back up. Do i need to be concerned about Pancreas?  I will find out next week about virus when I go back to Dr.  My suggestions to you would to keep stretching ,exercising and ask your Dr about possibly taking one of the glucose min  ( Move Free is one) supplement tablets, that is what I will be asking my Dr when I see him next week. Good luck and best wishes!

[Wildorchid1121]

Sorry, should say the three of you!!!

[Wildorchid1121]

You were both absolutely right!!!! Thanks for clearing the confusion. Did a Google search and Wikipedia has the following article, I only copied a portion of it.

I am so grateful to know there are so many knowledgeable people out there!!!  Keep up the good work!!!

EASL: Simeprevir (TMC435) Improves Response Rates for Difficult-to-Treat Hepatitis C Patients

  
    Category: HCV Treatment
    Published on Monday, 23 April 2012 00:00
    Written by Liz Highleyman


A combination of simeprevir -- better known as TMC435 -- plus pegylated interferon and ribavirin raised cure rates for genotype 1 hepatitis C patients who did not respond to previous treatment, according to a study presented at the 47th International Liver Congress (EASL 2012) last week in Barcelona.

[Wildorchid1121]

Absolutely sure that is what he said, I even wrote it down when he mentioned it. If you read what I wrote Will I told him what the GI told me.... and to think that I was so happy to finally put a name on the drug I was taking!!!  Wow now I have doubts if I want to continue going to his office.... and to think he ordered an endoscopy.... now I am having second thoughts!!!!


(The other reason I was wondering is because in an earlier post (1 Jul 2011) you say, "Just got shot 11 of TMC 435 this last Tuesday. . . ")

Yes I was getting my weekly interferon shots on Tuesday evenings, and I was referring of course to TMC435 study, shouldn't have posted it that way, it does seem confusing, sorry about that.

About your wild guess, I am sorry, I really don't know. I was never told what my viral load was, or my hemoglobin, not even at the end of the study, and here I saw people posting their results, I had nothing. Everything was hush hush, and even after treatment I haven't even received a letter to let me know what I was on. It was a very frustrating experience in that sense. I always knew it was a double blinded study, but there were things they could have told me.

I will definitely look into this, now I really want to know. Thanks again Idyllic.

[Wildorchid1121]

Talk about confusion! Now I am the one confused!!!!

OK.... All I knew throughout the treatment was that I was on TMC435, when I mentioned this to the new GI I went to see Tuesday, he asked me:

"TMC435 now has a name, at what point did they give you the trial med, at the beginning of treatment, or halfway towards treatment?"

I told him at the very beginning. Then he said that: "TMC435 study included two trial drugs: Telaprevir and Boceprevir.  Telaprevir was used at the beginning of treatment while those starting trial drug midway were on Boceprevir.

So if you are confused imagine me, I did not know for 18 months what I was on, I need to contact the doctor in Atlanta to see if they will tell me. They were upset that I moved 2 months after treatment and did not stay to finish post treatment blood work. Maybe the study coordinator will not want to tell me, who knows....with all I had to put up from her I wouldn't be surprised.

[Idyllic]

Hi WildOrchid:

Are you certain your GI said your trial trial drug (TMC435) was Telepreivr?

Will raises a good point, Most of what I have read indicates that TMC435 is a once daily protease inhibitor oral (150 or 350 mg) called Simeprevir.

Is it possible your study compared TMC435 vs Telaprevir in Combination With PegINFα-2a and Ribavirin? And you received the Teleprevir? (Just a wild guess).

__________________
The other reason I was wondering is because in an earlier post (1 Jul 2011) you say, "Just got shot 11 of TMC 435 this last Tuesday. . . ")

http://www.medhelp.org/posts/Hepatitis-C/Week-11/show/1548951#post_7033566

[Wildorchid1121]

Hi, I guess remember you from when I was on treatment, you raise or have German Shepard dogs right?

I was achy during treatment but it was more like a flu-type over all body ache. This is different now.

You are right, and it's a good advice to give it a few years to see how it goes.
I barely drink water myself, very bad habit! We need to flush toxins out, and that is the way to do it. I keep telling myself to drink lots of water but end up drinking soda...not good.... tea or lemonade. Maybe that might be a possible reason for joint pain, who knows, can't dismiss anything.

About moving, I don't know, you are right though, but I have moved so many times since the age of 8, (my Dad was in the Army) last time was this past December and I am moving again this month, same place but new house, towards the West coast.... I'm an islander so I love the beach...  Florida has been "under water" for a while now with all the rain we are getting, and I know for a fact that humidity does not help joint pain. I guess I can visit a western state but not to move, I have my daughter, and granddaughters here, and my husband has his children and grandchildren too, so we will retire here. Finally after so many years of moving "I will grow roots here!!!"

Thanks for your comments and advice....be well.

[Wildorchid1121]

Thank you so much, I will definitely contact the FDA,

[Wildorchid1121]

Thank you so much, I will definitely contact the FDA,

[Wildorchid1121]

Thank you so much for your info. It's really not very assuring but I thank you for being so sincere about it and make me realize that probably there might not be a med out there that will take away the pain. I am sorry to hear all you've been through, and I congratulate you on finishing treatment.

I pray this time you are cured, I went through this twice, 48 weeks the first time, and 24 this last time. The first was in 2004 but just riba and interferon. Virus came back with a vengeance! I waited because I really didn't want to go through the same thing again, until something new came out. I was even told by a doctor (in 2004) that I could have 10 more years to live before I needed a transplant.... or die.... It didn't make me nervous or afraid, I just thought to myself...."who made this guy a God?"

Eight years later I am free and I am happy, I always had Faith something would come up that would slowly but gradually wipe out Hep C, and this is the time. We just have to be positive, and I guess with joint pain we need to be positive too, though it's harder to get rid of it, we just need to thank God for the great things He gives us, and this new era of Hep C treatment is one of them.

Thank you for letting me know your experience, I will now go to my appointment with a little more input as to what to expect. I will definitely not take anything that can harm my liver, even if it means getting rid of the joint pain.

Take care, and be well, again thank you and congratulations.

[Wildorchid1121]

Hi copyman,

Agree, no way to prove it I guess.

And I completely agree with you. As debilitating as joint pain is, I too welcome it if it means my liver is completely healthy and free of the Hep C virus. After 34 years with Hep C, it is a relief to know I am free of it. Though I had blood work done this past Thursday to know for sure, I know I beat it!

I am very active at home, not that I exercise, (embarrassing to admit) which I know I should, but I am always busy doing something, my last project was painting the porch, yes the pain got worse, but the porch looks beautiful!!!!

Thanks for your comment, hope you get better!

[nygirl7]

TMC is not Inc.  Tell you doctor to do some fact checking - my doctor used to tell me I was geno2 and I'd so no I have geno 1a and 1b so technically thats two subtypes.

[willbb]

The gastroenterologist was able to tell me that the 3rd medication I was taking (TMC435) was Telaprevir
------------------------------------------------------------------
Possibly I'm confused by your post .I have been following the new protease (TMC435) very closely and they now call this drug Simeprivir.

Is this the drug you were on or were you on Teleprivir(Incivek) ?

Thanks......

Will

[Wildorchid1121]

Hi Idyllic,

I'm sorry, I finished study/treatment October 2011, but joint pain started about 3 months ago, I should have said it here. On my previous posting I had mentioned it. Before that, I had hip pain and still have, which I've been told is bursitis, and lower back pain due to an accident, but no joint pain.

It is indeed very debilitating, specially my hands, sometimes I am going to pick up something and if I move my hands a certain way, I feel a stabbing pain, mostly my wrists right below below the thumb. I try to not let the pain keep me from doing things, but it comes a time that I just have to stop whatever I am doing. I have been taking chondroitin and glucosamine for 2 months now, and I don't feel or notice any difference so far, I know it takes time, but definitely I will find out next week. Maybe it is, like you said, a trigger or a catalyst.

Are you on a study or just regular treatment? I ask because I was on treatment only for 24 weeks.

Best wishes on your treatment.

Thanks for your response. Be well!

[Diana66]

Just a thought here with the joint pain. I have been recomended recently a site on arrtitis and there were a few materials showing that artritis might have as a cause a gut issue.

Hence a low starch diet combined with Probiotics will make a difference. Worth investigating: kickas.org Check on the left hand side on AS and RA papers

i wonder if Probiotics can be taken while on tx

[working dog]

i'm 10 months post tx now....triple/incivek.....i'm feeling great in most ways better then before tx....there are still some issues...my aches post tx were way worse then during tx..in fact during tx i had loads of sx but not very achy... slowly getting better and better....i know i'm not drinking enough water...also it could be we develop allergies....if things are really bad i would get tested for lime...but i think we can expect some stuff to go on post tx after putting all those drugs through our bodies...seems achy is very common post tx with incivek...i would give it a couple years before taking stuff to help the aches if you can...otherwise its drugs over more drugs...if things get really bad theres always moving to a dry western state...good luck...billy  

[rambleon40]

Please write the FDA about your symptoms and the timing of them.  

http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm