Hep C Discussion Forum

Dzdayscomin · Senior Member

RE: Did you experience these side effects post treatment?

Cinnamon Girl · Guru

Liamc wrote:
I must admit I also felt the same as Tess after ready the comments, I am starting solvaldi/riba this Friday. is there a thread where people comment on how great they feel post treatment?

Hi Liam, that`s a perfectly reasonable question and I can understand you and Tess, and maybe others, feeling a little scared after reading the comments in this thread. As I said before though, many people do feel a lot better post tx even though it can take quite a while to get to that stage.

This thread is about post tx side effects so that`s why people are posting about their post tx health issues, but as Tig said, if you read through a lot of the other threads in this section you`ll see a variety of comments and experiences, and as more and more people are coming to the end of their interferon-free treatments we hope to see more and more positive outcomes.

Do feel free to start a new thread asking for positive post tx experiences though..it would be very nice for everyone to read!

Best of luck with your treatment too...keep us posted! smile

Isiscat2011 · Guru

Liamc wrote:
I must admit I also felt the same as Tess after ready the comments, I am starting solvaldi/riba this Friday. is there a thread where people comment on how great they feel post treatment?

Hi Liamc:

If you don't want to see a variety of honest answers but only positive affirmations you should say so in your post. I'm being serious here and don't mean to offend you. You will get fewer responses but you will be able to see primarily what you want rather than whole picture. It is difficult to maintain an illusion, however. And if it turns out differently you will end up feeling that you have been lied to.

People don't do HCV tx because they want to; they do it because they don't want to risk the alternative which could be decompensated cirrhosis, liver cancer, etc. Nobody knows whether the tx will work, how they will feel post-tx, or what would happen if they didn't get tx. We are all just playing the odds and the odds of having HCV for the rest of your life without experiencing any significant health problems as a result are slim (depending of course on how long we live).

We are here to support each other through the good and the bad but we have to be honest to offer anything genuine that will be of value. This is the reality of having HCV. IMO, not many people breeze through it without experiencing some hardships one way or another. On the upside, we rarely learn much from having purely positive experiences, so consider this an opportunity for personal growth.

Having said that, tx is much easier than it has ever been before, and hopefully the tx drugs are much safer in both the long and the short term. I don't have any doubt that HCV tx has and will continue to improve over time or that treating HCV is a necessary risk.

Best regards.

Tess1971 · Member

Okay, It's too late for me to be scared off anyway as I am at end of week 10 now. Must say though I am feeling rougher now that I did a few weeks ago. Maybe it is anxiety as end is getting closer but, I feel as though I am in a drug induced fog more often now than I have throughout . Ugh! Coming into the homestretch is how I am looking at it, itching all the way - haha

robertsamx · Guru

5 months post sofosbuvir/Riba 1200mg 16 weeks Joints hurt all the time, I need to sit sometimes to give the knees-ankles-hips a break. Muscles sore, head buzzing, still cant sleep!! And brain fog, I Hope it all goes away at some point in the future. But it all could be because I Relapes and still have Hep c-3 and the virus is causing all this stuff. But before treatment I felt pretty good all of the time and had none of the problems I mention above.When I do clear the virus i"m hopeing to feel good. We are all different, and S/X will vary. The next guy could skate through treatment and be fine after treatment. I:m not posting this to scare anyone away from treatment, we shouls all seek treatment and kill this hep c thing, but this has been my experiance. RC

Tig · Admin

The best place to find the good posts are right next to the rest of them! Take a look through the Post Treatment thread from the index via the Homepage. The new Sovaldi protocols are so new there aren't an abundance of reports from members achieving SVR yet, but there will be! Remember many of the ugly stories you've read are from those of us on the older treatments and they did take a bit more time to recover from. The new protocols will hopefully clear your system faster and like the treatment itself, should be accomplished with fewer side effects. Once the virus and the treatment drugs have cleared your system, you should begin to notice the improvements begin, but it will take time. We've discussed the many extra hepatic manifestations of HCV here and those are the things we begin to notice improvements in following SVR. It doesn't happen overnight, but it does happen!! The greatest feeling I've had so far is knowing the virus is dead and gone! SVR is just the beginning, and I'm confident that all the good things will follow!! Good luck...

Tig

Liamc · Veteran Member

I must admit I also felt the same as Tess after ready the comments, I am starting solvaldi/riba this Friday. is there a thread where people comment on how great they feel post treatment?

hepcat60 · Senior Member

It was as least six months until I felt relatively normal post treatment. I seem to remain more forgetful and spacey. I may be wrong, but chalk that up to the 2+ years since I began treatment. I believe you will continue to feel better as time goes on.

OldenSlow · Senior Member

Tess1971 wrote:
Wow, you guys are scarring me with all this post treatment stuff. I am on week 9 of sovaldi and ribavirin and was hoping that I would feel better after treatment. Yowsers.

Hi Tess and Welcome,

A few things to bear in mind before running screaming into the night from the horror of it all ... wink

This being a post-treatment side effect thread, that's about all you'll see while reading through. It's by no means inclusive of all who have done treatment. There are many for whom the troubles seem to be quite minimal, both during and after treatment. Forum members have also completed a wide variety of treatment protocols, in various combinations and for differing lengths of time. Some have had this viral sabotage ongoing for decades, others not. We vary widely in age and individual response is all over the map. One size doesn't fit all here by any means. Your post-tx experience could well be absent any and all of the complaints you've been reading about.

I would imagine the riba has worked you over a bit at this point in treatment, and I can tell you that part of it will certainly improve once the meds are stopped. Maybe not right away, but certainly within a few weeks. And you'll have the HCV monkey off your back as well. That in itself is priceless and worth any short term grief, IMHO. I bet you'll be just fine.

wayne

Cinnamon Girl · Guru

Tess1971 wrote:
Wow, you guys are scarring me with all this post treatment stuff. I am on week 9 of sovaldi and ribavirin and was hoping that I would feel better after treatment. Yowsers.

Hi Tess, welcome!

Please don`t let these posts scare you! I assure you that many people feel much, much better after they`ve completed treatment and cleared the virus, and that was certainly my experience, and I did 24 weeks of Interferon + Ribavirin treatment.

While it is true that some people do experience ongoing or new health issues post treatment that is not the whole picture by any means.

Best of luck with your treatment, hope it`s going well for you! smile

Ps - If you`d like to tell us more about yourself and your progress so far do feel free to introduce yourself in the New Members` Area.

Tess1971 · Member

Wow, you guys are scarring me with all this post treatment stuff. I am on week 9 of sovaldi and ribavirin and was hoping that I would feel better after treatment. Yowsers.

Tig · Admin

suziq wrote:
Hi Tig,
Looking into a dental insurance called Spirit Dental. Checking to see if my dentist takes it. You can try calling Lisa at 800 581 5373 X 050 and see what you think. As I understand (or mis-understand) it, it pays up to 50% with a $3500 per year limit for $28 a month with no waiting period. Sounds too good to be true so I will be checking with the local dentist before buying it. There is also a $100 one time deductible on first visit. Lisa had called to give me info on what is available in Medicare insurance in my area and looked it up for me. There were several dentists within 100 mile radius that supposedly take it in Texas--don't know about Fla. So this is not a recommendation--just a 'look-see" suggestion. Even 50% can be expensive.
SuziQ

Hi Susan,

Thank you for the information! I will definitely do some additional investigating. It's amazing how many junk dental care policies are being offered nowadays. Even the two new plans offered (recommended) by the Veterans Administration are horribly inadequate. It's a serious problem in the USA and should be part of any medical plan, not additional.

Tig

Barnacle · Senior Member

Interesting stuff here. Talked to nurse today and my post TX VL will be 24wks not 12wks like I first thought. So with the joint pain and Bills happy thoughts I may not be getting much sleep for a while :(

suziq · Senior Member

Hi Tig,

Looking into a dental insurance called Spirit Dental. Checking to see if my dentist takes it. You can try calling Lisa at 800 581 5373 X 050 and see what you think. As I understand (or mis-understand) it, it pays up to 50% with a $3500 per year limit for $28 a month with no waiting period. Sounds too good to be true so I will be checking with the local dentist before buying it. There is also a $100 one time deductible on first visit. Lisa had called to give me info on what is available in Medicare insurance in my area and looked it up for me. There were several dentists within 100 mile radius that supposedly take it in Texas--don't know about Fla. So this is not a recommendation--just a 'look-see" suggestion. Even 50% can be expensive.

SuziQ

Dzdayscomin · Senior Member

I broke 5 teeth (filling failure) during tx and right after tx, but since then not a problem I just gotta get all the fixes turned into crowns,but im kinda waiting til after my 12/5 three month labs and MRI before sticking a few grand into new teeth...if ya now what i mean.

Groupergetter · Guru

Tig56 wrote:
Dzdayscomin wrote:
Yes the morning old man pain, ankles so stiff you feel like your walking on stumps, and sleeping with arms bent at the elbow is excruciatingly painful when you try and straighten them, as well as sleeping on your side and feel as though you've destroyed your shoulder joint on the side you were sleeping on (doesn't matter which one )......I have all these problems every single day and night, they do loosen up with movement, but are still what I consider weak and fragile...if I were to throw a football even after loosening up, I'm quite sure it would feel like my arm went with the ball and would be damaged for weeks.
The other thing is any activity like using a cordless drill driver, or hammer where gripping is required will cause night time numbness and tingling and loss of feeling to my hands and wrists and additional pain in the elbows.
There definitely is a connection between either the HCV or TX but I did not have an interferon tx.......in fact neither Tig or I used any of the same drugs so that only leaves the HCV as the connection or maybe it's how these meds work regardless of type.
I see a Rheumatologist on the 30th and we will see what they say.
But this does really debilitate a person and plays against the motivation to get up and go, because it's quite the process to do the get up..... to go !
Duane
Hey D,
As I read your comments, I kept saying to myself, "How could he know exactly what is happening to me at night?" Dude, that's my shoulder you're talking about! Spooky accurate on all accounts...
Tig

Tig as I read your and Duane's posts I think this exactly is happening to me as well. Hip and shoulder pain. All my joints popping, knees, ankles, neck, tendonitis in elbows, also having what seems like pressure in my eyes??? As I said in an earlier post bought a gel filled mattress topper which does help a bit with hip and shoulder pain. Also increase in arthritic problems in hands. This didn' t manifest itself until after tx. Yes brain fog, hard to do my job. Might as well biggrin about it biggrin cause otherwise just stay depressed. With all this going on, still trying to stay focused on all we have to be Thankful for. Yes I'm thankful for everyone here. smile

Tig · Admin

Yep, as mentioned earlier, the joint pain is brutal and seems progressive. I'm also continuing to have sore teeth, the same dulling effect you mentioned and lost one tooth, broke in half during Tx, and have had to replace some fillings that failed soon after. My problems appear to be IFN related. No insurance.... $$$

Tig

suziq · Senior Member

Hi Bill,

No interferon BUT 3 teeth broke off during treatment and now another last week. Of course, my teeth were pretty old. I'm checking out dental insurance,

I did riba, but had no rash. Now I have sores that won't heal on one arm. Have an appointment with dermatologist to see about that. My legs hurt more, but I have started NAC and that seems to help some. My fatigue has virtually disappeared YEAH! So I hobble around but don't get tired. Need to get a GOOD physical, but there are only 2 doctors in my town and the new way they (the doctors) examine one body part at a time can be a lot of travel and even with Medicare, a little expensive. Specialists cost a higher co-pay and I get a different one for every ache and pain. Oh well, I don't have Hep C anymore so one less worry.

SuziQ

Isiscat2011 · Guru

Bills wrote:

Another one still bothers me as we did discuss it was MY TEETH ENAMEL teeth ( the real ones LOL ) are dull and darkened 2 have since broke off filling failure
Anybody else still have these type symptoms of asked Dr's whats up ?

Not my teeth enamel but my gums (my teeth are all capped). During tx some of my caps became very loose. Dentist said drugs can cause gums to recede, and pockets can form where food gets in, and then you can end up with periodontal disease. I have cleanings every 3 months and a deep cleaning once a year. Also got some prescription toothpaste and mouth rinse. If you don't stay on top of it you can loose all your teeth and become a gummy bear.

Bills · Guru

Hey

Since we are on the Post TX side affect issue.

I got all the joint pain issues They did seem to retreat during treatment when I was undetected but they are back with vengeance now again since relapse Feb. 2013

I would like to compare notes on these other ones 2 years later

The BRAIN FOG:

My longest lasting symptoms and something I am concerned about as permanent side affect. Many on treatment said they had it forgot to take meds and almost everything else daily

I was on the Inciveck triple at the time. others complaining were on Victrilis during Aug 2012 I relapsed in Feb 2013

Another one still bothers me as we did discuss it was MY TEETH ENAMEL teeth ( the real ones LOL ) are dull and darkened 2 have since broke off filling failure

Anybody else still have these type symptoms of asked Dr's whats up ?

Bill S

Dzdayscomin · Senior Member

How about the elbows? where you know if you were to quickly straighten out the arm it would surely snap.

This is really a bummer for a guy that has APNEA can't tolerate CPAP so I can't sleep on my back ....I have to sleep on my sides or stomach which feels real good with my liver and spleen and varicie around the naval.....I'm pretty much screwed in many ways.

But I can still go to work.......... lol nothing else to do but laugh or cry and i'm no good at crying!

Tig · Admin

Dzdayscomin wrote:
Yes the morning old man pain, ankles so stiff you feel like your walking on stumps, and sleeping with arms bent at the elbow is excruciatingly painful when you try and straighten them, as well as sleeping on your side and feel as though you've destroyed your shoulder joint on the side you were sleeping on (doesn't matter which one )......I have all these problems every single day and night, they do loosen up with movement, but are still what I consider weak and fragile...if I were to throw a football even after loosening up, I'm quite sure it would feel like my arm went with the ball and would be damaged for weeks.
The other thing is any activity like using a cordless drill driver, or hammer where gripping is required will cause night time numbness and tingling and loss of feeling to my hands and wrists and additional pain in the elbows.
There definitely is a connection between either the HCV or TX but I did not have an interferon tx.......in fact neither Tig or I used any of the same drugs so that only leaves the HCV as the connection or maybe it's how these meds work regardless of type.
I see a Rheumatologist on the 30th and we will see what they say.
But this does really debilitate a person and plays against the motivation to get up and go, because it's quite the process to do the get up..... to go !
Duane

Hey D,

As I read your comments, I kept saying to myself, "How could he know exactly what is happening to me at night?" Dude, that's my shoulder you're talking about! Spooky accurate on all accounts...

Tig

Dzdayscomin · Senior Member

Yes the morning old man pain, ankles so stiff you feel like your walking on stumps, and sleeping with arms bent at the elbow is excruciatingly painful when you try and straighten them, as well as sleeping on your side and feel as though you've destroyed your shoulder joint on the side you were sleeping on (doesn't matter which one )......I have all these problems every single day and night, they do loosen up with movement, but are still what I consider weak and fragile...if I were to throw a football even after loosening up, I'm quite sure it would feel like my arm went with the ball and would be damaged for weeks.

The other thing is any activity like using a cordless drill driver, or hammer where gripping is required will cause night time numbness and tingling and loss of feeling to my hands and wrists and additional pain in the elbows.

There definitely is a connection between either the HCV or TX but I did not have an interferon tx.......in fact neither Tig or I used any of the same drugs so that only leaves the HCV as the connection or maybe it's how these meds work regardless of type.

I see a Rheumatologist on the 30th and we will see what they say.

But this does really debilitate a person and plays against the motivation to get up and go, because it's quite the process to do the get up..... to go !

Duane

Tig · Admin

Hi David,

Im glad you dropped by to let us know how you're coming along. I'm continuing to have the same issues with joint pain and as time goes on, the discomfort mounts. I recommend you bring it to your doctor's attention. I think there needs to be more attention paid to this potentially long term side effect of Interferon administration. I'm reaching my one year EOT date and was hoping these problems would be letting up, but instead are significantly worse. Like you, I find that movement helps keep me loose. I don't like the need or negative health effects of pain meds and anti inflammatory drugs, but they have been a requirement most days. I'm hoping that in time we'll see an improvement.

I know the anxiety your EOT+12 viral load date can bring! You fought hard for the day and your chances of SVR are excellent. Keep positive and look forward to a long Hep C free life!! Good luck buddy...

Tig

Barnacle · Senior Member

Hi all,
I haven't posted here for a bit but frequently drop in to see how everyone is doing. I am days away from my 12wk post tx labs and waiting nervously for that result.
Anyway this thread caught my eye because I have had aches and pains in just about every joint in my body for the last few weeks. I did not think is was anything more than getting old.
When I am inactive like sitting for too long, or waking up, or after driving for a while I find myself moving like an old man until my joints get loosened up. I have a post tx appt due with my hepa and will see what he has to say. The symptoms described in this thread are most familiar to me.

lizabear · Member

I am 15 years post pegasys, (did not get a cure, type 1a) I struggle with joint and generalized pain that has gotten a lot worse in the last five years, also with out the inflamation etc like tig and others here have shared, But even with pain I have found that if I just get up anyway and go out for a walk, it does not get rid of the pain but it does ease up a bit and this is without taking any pain meds otc or rx before hand, some days I have to take the pain meds anyway but often enough if I go for a walk first I don't need to take as much pain medications.

rx and otc pain meds affect the liver so I do my best to cope without taking any if I can. But somedays I have to just to cope.

Stay strong, think positive, tell your self you are awesome every single day!

Peace, Lizabear

Tig · Admin

Hi Jim! Good to see you smile I thought "spacey" was normal? LOL!

Tig

JIme · Guru

Joint pain subsided and disappeared after a few months. Still a little spacey after 2 years though.

Tig · Admin

An interesting article listing most of the extra hepatic manifestations I've been aware of and then some. It's interesting to note that it's mentioned that a common symptom is joint pain without the visible inflammation seen in common arthritis. That's what my ortho doc mentioned, all the signs and symptoms of arthritis are there, but they aren't visible on XRay.

"Arthralgia is a common symptom of hepatitis C that is characterized as joint pain, but without inflammation of the joints that is associated with arthritis.

Arthritis is a condition characterized as inflammation of the joints. Hepatitis C-related arthritis (HCVrA) is estimated to affect about 4% of the HCV population, but since most patients will not see an arthritis specialist the true number is likely higher. Hepatitis C-related arthritis is classified into two groups polyarthritis and mono-oligoarthritis. Polyarthritis is similar to rheumatoid arthritis but is less serious. Mono-oligoarthritis affects the medium and large- sized joints typically the ankles"

http://hcvadvocate.org/hepatitis/factsheets_pdf/extrahepatic.pdf

Tig

Dzdayscomin · Senior Member

Well I think there is something more going on, as the tx's have been different in many of us, but this sx keeps coming up, that said... it leads a person to believe it is the disease itself causing the sx, or the way all these tx's work that result in a common sx of joint, muscle pain and stiffness to an arthritic quality.

Tig · Admin

Yep, me too! My arthritis and joint pain has increased greatly. My Hepa and the orthopod I've been seeing have concluded its the result of the Interferon exposure x2. I noticed the increase in pain and motion limitation beginning about half way through my last round of Tx. Now I can barely move. I'm taking anti inflammatory meds, pain meds, exercise as much as it allows me and yet it's getting worse. Right now it's a wait and see situation. I'm hopeful that time will help resolve some of it. So far it's running its own course and I'm along for the ride.

Tig

OldenSlow · Senior Member

Ditto on all of it, Greg. Impossible to pinpoint the cause, but I'm 5 months post-tx and still having similar problems. No complaints otherwise, I feel pretty good. All I'm certain of is that none of it was present to any great degree prior to treatment, so there's a tendency to start connecting the dots.

Groupergetter · Guru

I've definitely noticed an increase in joint and arthritic symptoms since ending tx. Can't say if it's directly related to the tx or other issues. Though I've had neuropathy, the arthritic symptoms have become much more pronounced in just a few months.

pizzacake · Veteran Member

ha! No I'm not eating that 'thing' in the pic. I eat pretty well. Although I am a big fan of salt.

Most of the symptoms I listed below are fading except the forgetfulness.

Huey · Guru

Any ache's or pains I had until around eight weeks after treatment I could easly blame on the drugs. Waite a wile

As for the slightly sick feeling after eating, If your eating that thing in yur Pic, No wonder!

We are all in this together, Keep your stick on the ice.'Red Green Show"

pizzacake · Veteran Member

Last blood tests show Hep C virus as undetectable!!

I am NOT complaining I just want to know if these are normal:

-- It's been a week and a half and I'm more exhausted than when I was on treatment.

-- The itching has reduced.

-- I've noticed increased confusion and spaciness.

-- I am not hungry (unusual for me) and when I eat the food makes me slightly sick. I didn't experience this during treatment.

-- My joints are achy.

Anybody experience these symptoms post treatment with Interferon/Riba/Solvaldi? Is this common?

I'm looking forward to celebrating with pizza and cake.

-- Edited by pizzacake on Thursday 25th of September 2014 01:29:26 AM

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