Hep C Discussion Forum

Gracie · Guru

RE: Post Treatment

Tig · Admin

Hey Steven,

What I want you to do, is use the search function at the top center of the page. Enter "Brain Fog" without the quotes. It will open up several threads here on the forum that will help to explain it and how many of us dealt with it. I can tell you that some people experience it worse than others. Once SVR is achieved, it will begin to improve. Faster for some than others, but we've had people wake up one day and tell us, "Wow, I woke up today and I feel so much better than I did just one week ago". Just hang in there and know that it will get better, again on it's schedule, not yours. If you have to carry around a notepad to remind yourself of things during the day, do it. I had to. Shoot, I would constantly go from room to room and forget why. I forgot names of people I knew for years. I would find myself fighting for words that should've been there. It happens Steven, but it will get better. Don't be too hard on yourself, okay? Hang in there buddy...

S1jiujitsu · Member

Could anyone elaborate on the "brain Fog" or altered mental state, so I can get a little clarification. Because what I've experience is a mental fog that is so think at time focusing on certain tasks are nearly impossible. The mental alertness and clarity I use to have seems to be gone. May 2-3 days out of the week I'll feel clear headed. It's so frustrating because I don't feel myself. It's like I literally lost my ability to zero in and focus. Tried going in a sensory deprivation chamber and I could get a still mind for longer than a minute. I'm done with treatment but I've been feeling worn ragged from this. If this is normal and goes away please speak up so I know it's normal and I don't have a breakdown waiting for this to subside thank

S1jiujitsu · Member

Thanks Tig. That is encouraging. Good to know. Obviously I'm grateful to be undetectable and I'm praying for SVR. I'm sure after time the testosterone and energy levels will go back to normal. The brain fog is the most difficult to deal with. One day or should I say on a good day I'm on point, mentally alert and focused. On a bad day I feel a super lack of focus. It's a bit disturbing . Had me at one point questioning my sanity. I always try to act like I'm okay and not complain to anyone in my life a be positive. It's reassuring to know other people have experienced something similar and it eventually gets better. Thanks for the support and encouragement

Tig · Admin

Hey Steven,

Nope, you're neither crazy nor imagining it. You're experiencing what so many of us have along the way and through our recovery phase. The fact that you have noticed some physical improvements is a positive sign and the brain fog will diminish in time. It will happen, on your body's schedule, not yours. You can assist it by taking care of yourself and letting it happen. Some exercise is good, but you may want to limit the intensity to an easier level. Once you've gotten your "stuff" back, you'll know it.

I was curious about that Testosterone level I quoted you. I went online to my VA portal to look up the history. I was off on my numbers. At the end of treatment, mine was 97! Now that was low, no wonder nothing worked right, nor did I care that it didn't! It was 6 months EOT that it was 280. I don't know what it is now, but it must be better biggrin ...

S1jiujitsu · Member

oh and by the way. The joint and muscle pain have pretty much subsided. I felt it particularly in my shoulders but thought it was from JiuJitsu. But I read someone else experienced that. The fatigue will be on or off. A really good day, then an ok day, then a not so good day and the brain fog is more troubling than the actual physical fatigue, but both aren't really that cool. I tend to over exert myself on my good days, but it does seem to SLOWLY be getting better. Patience has never been an attribute of mine but I'm learning. If any of this sounds familiar please let me know so I know I'm not going crazy or imaging it. I've had people with no clue say it's all in my head, but on my good days I feel invisible, and the bad the fatigue is so bad, and the mental fatigue is so bad it's hard to focus. So please let me know if any of this is normal. Thanks to you all

S1jiujitsu · Member

Thanks you guys for the encouragement. And Tig I agree with you 100% about the testosterone levels. 400-600 is exactly where I was pre treatment. It was 540. Now after 8 weeks of treatment and five weeks post treatment it plummeted to 300. Although its within range, I'm still concerned because that's a significant drop in levels. I'm just trying to keep it in perspective though and take the good with the bad. The actual number itself doesn't bother me as the fatigue I experience some days. All I can really do is leave it in Gods hands and pray over time everything gets back to normal and levels out. Glad to know I'm not alone and talk with people who have experienced the same thing. It is my hope everyone here recovers. And hopefully treatment will one day be available to anyone who is DX'd with this. Thanks guys and if anyone get blood drawn and request testosterone levels checked please let me know if you experience the same. Gilead says they have no data on it but I believe its directly correlated.

Groupergetter · Guru

Hi Steven, I don't think the testosterone levels are the problem. I am 12 weeks post eot and still experience the brajn fog, fatigue, muscle, and joint problems. Hoping these will improve in time. When you consider we've had this fire breathing dragon burning us for years, it may take a while for things to improve. My doc says that some don't show major improvements even over time. Hopefully we'll start to see signs of improvement. I too am awaiting my 12 week eot lab results. Praying for SVR. Good luck

Tig · Admin

Hi Steven,

Thats great news on your EOT+5 viral load! The chance of you not continuing to stay undetected are remote at best. The differences in the rate of success between week 4 and 12 is very close. With an ALT/AST like that, I'd be planning my celebration!

Dont worry about the Testosterone level. Mine dropped to around 280 during treatment, different drugs though. Even though you're lower than you were, you're still within normal limits. I was also feeling pretty worn out, treatment does that to all of us, regardless of protocol. As I recovered from treatment, "things" started feeling and working better. I haven't had the test repeated, but I can tell it has improved. The fatigue will improve fairly soon, and on Harvoni, you should expect 2-3 months to start feeling like yourself. It takes everyone a while and patience is the key. Hang in there...

Normal or average testosterone levels

In general, the normal range in males is about 270 to 1070 ng/dL with an average level of 679 ng/dL. A normal male testosterone level peaks at about age 20, and then it slowly declines. Testosterone levels above or below the normal range are considered by many to be out of balance. Moreover, some researchers suggest that the healthiest men have testosterone levels between 400 - 600 ng/dL.

S1jiujitsu · Member

Ok guys.. Here's my latest post treatment results. At five weeks post treatment I'm still undetectable. My ALT is 24 AST 26. My Iron is 126 TSH 2.604. All these numbers are great but because the fatigue hasn't subsided yet I had them test my testosterone. Before treatment it was 540, post treatment it is 300. Decreased testosterone will make you feel fatigue. I've never read any literature suggesting Harvoni effects the testosterone. But it does cause fatigue. And since fatigue is a side effect of low testosterone I'm wondering if it's all related?? It has to be! And if so as time goes on will my levels go back to normal? How long until you feel 100% again? I'm really concerned about this. I'm so grateful to be clear of this virus. I'm praying for SVR. But it hasn't been a walk in the park. It's definitely a battle. My hands are better and the good days are more than the bad but I'm just curious if anyone else has experienced this or what do you think? Any help and knowledge would be appreciated. Thank you guys!!

Brian1412 · Guru

Skewed. I would bet the farm that Gilead. Isnt sitting around spying on forums to see what the effects are...theu already know what they are. They know what they have and know what they have coming right behind 1.0. No surprises on the horizon. They know whst this med does

Brian1412 · Guru

My experience. Was decent. I had thr headache. The first day and none others: i would get a warning message from some organ when i didn't. Eat when i did it resolved. I think tsking the pill at 4pm was a good move(which was only bc that's. Whem i got them) i slept well and it didn't. Iterup my personal. Day I woke up one day 2and a half ago with extreme. Weakness. Severe. Pain in joints especially hands. I still have some of it in the hands so that would exclude. Side effect of hsrvoni.too much time between. I also woke that. Day to not being able to remember. Where my car keys were or peoples name. Even close friends..it was scarey. Istill have some of that now. I cannot say it is the med or a side effect for sure. Bc i have had it for some time. I can say this for surely.it was WAY easier. Than cancer my hat is off. To Gilead and the scientists that puy this together and the people who went before. Me ,and went thru the brutal treatments of the past. Most importantly to those who shared their experience. So that we could have knowledge. And comfort.

Tig · Admin

Hi Debbie,

Hooray!! I'm so glad that you're feeling better. Once you can get all of that out of your system and have time to get your motor revving again, you'll feel like a new person! It takes time but you already see what a few weeks brings about. In three months you'll notice a marked improvement. I have a feeling you're going to get the news you've been waiting for after next week's tests. Good luck, we'll be waiting!

Cinnamon Girl · Guru

Hi Debbie, that`s great news, I`m pleased you`re feeling so much better all round!

Now you can relax and look forward to celebrating your 4 week EOT result!

Best of luck! smile

Member

3+ weeks post Harvoni treatment now and I'm feeling much better! Muscle and joint pain are gone. So are the mood swings and the fatigue is lifting. I will be doing the fist set of blood work this coming week at the 4 week post treatment point. Fingers crossed!!!

Member

Thank you everyone! Seems like there are more and more posts regarding Harvoni side effects after treatment. Good to know I'm not alone, and that in all likelihood, it will pass. Just need to give it time as with all things in life. These are powerful drugs, and due to the ease of treatment, I tended to be fooled into thinking there was no real "war" going on inside my body! So I will rest, eat well, enjoy my summer and wait until I get the all clear at the 12 week post treatment point in August! biggrin

dragonfly · Senior Member

Hi Debbie,

I cleared after 12 weeks and expected to spring back but of course that was unrealistic. These are new drugs so their long-term residual effects yet remain to be seen and catalogue. I, like others, have joint and muscular pain and neuropathy which come and go,are they caused by these drugs? I don't know. The main thing is this; they work! Good luck.

Nx

Member

Thank you so much Matt...there is a wealth of information to be had here. So glad I posted!

Matt Chris · Guru

Hello Debbie

Sorry to read about your EOT after effects, as I reflect and remember our members that participated in Gilead s' Clinical trials for "Harvoni' name Ion series, the women in the study group seems to experience more issues during treatment and EOT sides effects. Though not really disclosed on the label, the history and disclosure will likely be years down the road.

Click the link below to read about the Ion HCV trial that our members contributed to.

http://hepcfriends.activeboard.com/t53618592/ion-3-trial/

matt

bubble · Senior Member

Hi Cinnamon Girl, thats it, Iam turning in my badge! Lol.

Cinnamon Girl · Guru

HI Skewed,

Interesting hypothesis there! But I`d be more than extremely surprised if any of our members had been planted here on behalf of the pharmaceutical companies to give a good spin on their products! I can assure everyone that we (the Admin team) keep a very close eye on what goes on here and we would soon notice if someone`s story didn`t ring true, with our combined years of experience on this forum.

The fact is that with all treatment regimes the degree of side effects and post treatment issues varies hugely from person to person. Even when the only options that were available were the older SOC treatments based on Peg/Riba, I`ve seen many cases over the years that I`ve been involved here where people sailed through with minimal side effects whereas others had a very rough time of it.

There`s a certain degree of risk with any medications and our main aim is to get rid of Hep C for good, that`s what we all want. And realistically speaking, after decades of being infected with this virus none of us can expect to turn back time and feel the same post tx as we did 30 years ago, although that certainly would be very nice!

Thank goodness at least we`re seeing such a high rate of successful outcomes since these new drugs have been approved.

(Hi Bubble, yes we had you down as a spy!! Lol)

Cinnamon Girl · Guru

Congrats Debbie on finishing your 12 weeks of Harvoni!

Sorry you`re getting these pains and other symptoms, you`re not alone in having a few post treatment issues after finishing this drug combo. I like Tig`s description of `systemic confusion`, that`s a good way to understand it and certainly seems to explain what`s going on in a lot of cases.

I think you just have to be patient and allow more time for your body (and mind) to recover and get back on track, and remember that it`s still early days yet after 12 weeks of taking such powerful drugs.

In the meantime, listen to your body and go easy on yourself, don`t expect too much too soon. You responded very quickly to the treatment being UND at 4 weeks which is great!

All the best of luck with your next lab results, keep us updated! smile

bubble · Senior Member

HI!! Agent 006 and7/8th's here, I have said this before but I should state again. I am totally opposite. For 10 yrs. + I have had pain in my legs and hip sockets to were I could not even walk. Generalized Itchching, Seboria/Dermatitis in my scalp...bla bla blaaa. I was a walking bio-disaster. Now all gone. I am just opposite so everyone is different agreed. Kill your Dragon. Kill my Dragon. Time will tell in all. Stay tuned. Good luck D.

Rubye · Senior Member

I'm at 4 months since the end of my treatment with Sovaldi and Olysio, and as far as my problems with joint aches and pains, am pretty much back to where I was before treatment. It did take me a good 12 weeks after tx to get there though. However, my neuropathy is worse than before and I don't know if that is because of the S/O or just regular progression due to my cirrhosis.

The thing is there are things I can do to try and get better such as acupuncture and gentle yoga and good diet. I didn't really entertain these options before treatment because I didn't have much hope. But, I do have high hopes now and that is because I am no longer walking around with Hep C. I wonder if I could sell myself to Gilead to go around and testify to the greatness of Sovaldi. wink

Tig · Admin

Hi Skewed,

Your comment on spies amongst us is surprising! In my years here (2), I've never seen an indication of that. Spammers yes, spies no. Certainly the old Interferon protocols have generated zero people without some adverse/side effects from treatment. The newest treatments upon us are so new, that there has yet to be any solid evidence presented, yet we know it exists. Some experience issues and some don't. Many of us here, past and present, especially the Admin team, do pay attention to everything said, follow each individual's course of treatment, side effects, etc. It's part of what we do. Honestly, I personally believe I could smell a rat in the woodpile. So far my nose remains clear. We do our homework and to my knowledge anyone that might be dishonest and/or deceptive hasn't stood out in my opinion, but I'd be curious to know if you have some ideas. I don't want names mentioned on the open forum, so please feel free to send me a PM with some additional information if you would like.

I'm sorry to hear you're still feeling poorly. Perhaps you still need some additional time to recover, everyone is different. Some relapsing on the Interferon protocols, have gone on to SVR (on the newest DAA's) without too much trouble. So there is still hope that you'll experience a turn around soon, I hope so anyway. As we have mentioned before, it's vital that you discuss how you're feeling with your Hepatologist. These new protocols are always a pioneering effort to those first into the drivers seat. Many factors can be involved when determining why one has minimal side effects, while the next can't get out of bed. The only way to determine them is to document everything and present it to the appropriate service. I'm sure you're doing that, but mentioning this for the benefit of everyone.

Good luck Skewed! I hope to hear that you're feeling much better soon...

Tess · Senior Member

What I've noticed is that some issues that I had before Harvoni became worse, periodically, during and after treatment. Neck pain, shoulder pain and superior oblique myokymia (a neurological eye disorder) are pre-existing conditions I have which, some days, are worse than before treatment. But today, exactly 12 weeks post treatment, those symptoms aren't bad at all :) Who knows what tomorrow will be like but any improvement is encouraging!

If you're having a new problem it's always a good idea to find out if there is another cause and not just chalk it off to treatment sx. For example, where I'm from (Northeast US) a circular rash would be checked for Lyme Disease, which if caught early is very treatable. Of course, Debbie, that's probably not your case - I just wanted to mention checking into any new symptoms.

Good luck to everyone - - hoping you beat the dragon!!!

- Tess

skewedButNotBroken · Senior Member

Ok, first I want to say that this site is a great resource for those going through treatment. But please remember this is a multi-billion dollar industry (treatment of hepatitis c) so I guarantee you that there are members here who are delegates of the big pharmaceuticals who are pretending to be patients with little or no side-effects. The administrators of this site would have no way of knowing who is a real patient and who is not. My educated guess is that the one's doing the most complaining are the REAL patients. For example, I'm SVR (I finished treatment 6 months ago) and I still have this weird altered personality feeling, I have had more heart flutters in the last 8 months than I've had in 57 years. Is that a coincidence? Of course not, only a fool would believe so.

I had such high hopes that when I finished treatment that I would feel like I did 30 years ago---but the reality is I feel like crap most of the time and I'm trying to adjust to my new altered state of existence. I was very sick before I started treatment so I guess I do feel better than before, but I do not feel by any stretch of the imagination like I thought I would feel after clearing the virus.

-- Edited by skewedButNotBroken on Thursday 14th of May 2015 02:52:39 AM

fourlocos · Senior Member

Hi

I just wanted to say that I also felt lousy after treatment ended. I reached my 12 week EOT SVR. It took me 3 months but one day I realized that I felt more normal again and had less pain. So give it a bit more time. The past week or so have been so much better.

dharmabum · Senior Member

Hey Bill,

I am happy for you. 15 days will come and to in a flash. Then you will be reporting the good news that you have been waiting for.

I would not say the treatment was easy for me. I still have that awful fatigue and eating anything more than a small child's meal is a challenge. I am about 5 weeks EOT and still slogging my way slowly through everything I do. At least the weather is beautiful!

My main problem is my digestive system. I was fine prior to ingesting 12 weeks of Harvoni, but now intestines are swollen and tender all the time. I have told my doc but she only says "this is very strong medecine". Well heck, everybody knows that...

In all other ways the treatment was great; no other complaints.

I DO wish you a speedy recovery...

Jo

Member

Hi Bills. I too have wondered if it's just me or is it a result of the treatment since I don't really hear anyone I know saying they have felt pain...or have felt anything bad for that matter! lol But I do know pain is NOT this severe for me normally. This is real. And it hurts!

Bills · Guru

I'm doing 24 weeks 15 days to go.

Biggest problem I wasn't expecting is muscle pain and joint pain and it's been pretty constant

weakness, fatigue restless sleep All these are also problems I had for years just seem more intense, body wide and constant all these 24 weeks

I hear so many say I feel great it makes me wonder if its me? my normal or because 1/2 the group say they have it too par for the treatment? the cry o-globulin? so many variables it's hard to say what I have LOL. But if there is a common denominator here with pain I hope it does go away. The cryo is supposed to get better but I've been UND for like 20 weeks (that sounds good) I too am really interested in seeing how many of us have this pain symptom

Bill S

JLynch30 · Senior Member

Well said TIG56!

I am ramping down after 6 months and I want to be back on the medicine! Crazy. It really gave me energy - now I must heal back to the middle. I have insomnia and that is all.

Member

Many thanks for your reply and your kind words Tig! I have experienced some headaches and fatigue as you mentioned, as well as some insomnia. I have had a weird dream here and there, but that is not the first time I've experienced that with or without being on treatment, so I can't say I can attribute it to the Harvoni. As you've said, I will just need to give it time and I look forward to feeling better than ever in the weeks to come. I can't wait to list "CURED" in my profile as I know I now am!

Tig · Admin

Hi Debbie,

Congratulations of finishing treatment!! Well done and it sounds like you sailed right through it without much difficulty, that's excellent. We have some members that have expressed the headaches and fatigue, along with strange dreams. Did you have any issues with that? Seems it is very common with people here. After treatment ends, there has been mention of some discomfort and insomnia, but I haven't heard anyone specifically mention leg and back pain post treatment. Others here may be able to shed more light on that subject. As your doctor mentioned, this is such a new protocol, they're just learning how these medications affect people, short and long term. The positive thing I can say is that most I have talked to have said that time improves everything. I want to believe that in the next month or so, you should notice the improvements you're looking for.

These are powerful medications and they affect you during and after treatment. Your body has to ramp up to their introduction and then after you have adjusted to them, it's time to quit. So now your body has to again ramp down to what it should be post treatment. Let's call it systemic confusion!! Hang in there, it should improve, but it takes time. Treat yourself right and don't be in a big hurry to get back to normal. Your body will tell you everything you need to know. Take care and keep us informed of your progress. I want to hear the celebration when you get the good news! Good luck....

Member

I finished up 12 weeks of Harvoni on May 7th and have been non detectable since the first blood work was done two weeks into treatment! YAY!!! The very mild side effects I experienced at the beginning of treatment such as light sensitivity and headaches were gone within the first couple of weeks and it was incredibly smooth from that point on. However, after being off Harvoni for a few days, I began to experience a lot of pain in the lower part of my legs, arms and some in my lower back as well. I was unable to sleep last night due to the pain and finally took some Tylenol, which did not help that much but I was at least able to finally fall asleep. I also developed a small, raised circular rash on my inner arm that a skin doctor told me today looked to be from sun sensitivity. Has anyone else experienced any type of pain/reactions post Harvoni treatment? My doctor tells me this med is so new that he just doesn't know for sure. I didn't expect there to be an issue since treatment was so uneventful regarding being uncomfortable in any way. I might have expected some "withdrawal" on another drug, but from everything I was told or read, there was nothing being mentioned regarding Harvoni. I've never had this type of pain before. However, I'm still quite happy that it is just some pain and a small rash..and that is all!!! Just curious if anyone else went through anything similar and how long it lasted? Any suggestions on a post treatment regiment to get myself feeling better? Thank you everyone!!

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Normal or average testosterone levels

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