Hep C Discussion Forum

coolheat · Senior Member

RE: After HCV Treatment

Tess1971 · Member

I will look into that for sure. I agree that PPIs (proton pump inhibitors) do not work well and have toooo many side effects especially for our bones. That is why I took an H2 blocker instead also due to histamine being a big issue post treatment.

I am definitely feeling a difference now that it has been over 10 months post treatment..it has been a slow process of feeling good and then crummy again, good than crummy, on and on - it is finally staying good. Only complaint is my skin not having any resistance to UV and being sensitive to sun blockers also.

Brian1412 · Guru

I thought the liver doesn't have pain? I have had the pain ,yesterday in fact. I also had alot of acid that protonis wouldn't touch. That's when I check my diet. Today. No problem. Pomagrante ,cherry fixes it every timr

Tess1971 · Member

You guys are amazing. So many withstand much more side effects that I. The gastric issues did not appear for me until the last month of treatment and got extremely worse immediately after treatment was over. I was advised to take famotidine rather than a PPI type since histamines was the culprit resulting in my itching and rashes. It worked very well and even helped the itching. After a month I stopped taking it and then a few weeks later the rashes and itching slowly reappeared so I am dealing with that now.

I am assuming this histimine thing is my immune system overreacting since I did not have allergies prior to treatment, I did have the headaches, heartracing and a few bouts with aches and pains during treatment, but, it seems not a bad as some others. My blood pressure was all over the place since I was not able to take my diuretic during treatment due to over dehydration issues. Now my BP is normal without it and I hope that stays that way as I check it almost daily and it was great during dr visit also. He has not idea what to attribute that to though. I am still trying everything I can to deal with the skin issues as summer weather is just making it worse.

Again, you guys are amazing hanging in there despite all and I find that gives me incentive also.

basser · Senior Member

hi. was on solv;di daclatasvir and 600mg of riba.am sure its the riba is the pest.was on riba interferon 7yrs ago had to stop as i was interferon intolerant.so was over the moon when got put on interferon free tx.am cirrotic so that dont help.but at least beingvirus undetected is a boost all the best

Tig · Admin

Hey 4L,

Perhaps a little stressed, but nut job, no! You're going to experience highs and lows as you go into and out of treatment. We all have different emotions and reactions from these medications, try to understand that's the case and accept it for what it is. You already know that you're sensitive to medication. You have just completed months of some powerful stuff and now is the time to let it clear your system and get back to living! Don't be too hard on yourself, just know that it takes time to recover. I think from now on you'll have a different opinion on how sensitive you are to medication. After this, you'll think everything else is a walk in the park! Hang in there, you're doing great!

Tig

fourlocos · Senior Member

Basser which treatment drug did you use? I just got done letting a good cry go. I am also never depressed but have felt so strange the past few days. The gnawing now has gotten better with the Zantac at high dosing which is great. But I know I will sound like a nut job here.... I can feel this strange sensation over and over in my head. Like that saturation feeling during treatment is lifting. I know the drugs must take time to leave the body when you think that they seem to go into every part of it. But I didn't ever expect to feel so oddly. I am going about my day and in the back ground I have this over whelming anxious feeling. I didn't have that yesterday but it hit hard today. I tried to explain to my son when he asked what is wrong with me LOL. I am inside myself and need to get back to life. I am sort of stuck this week. Thank goodness I have work for the next seven days, that will help distract me. Why are so many having no issues or sides with Harvoni and I seemed to have had a harder time. I had a great hour long walk in the woods with my dog. The cold crisp snowy landscape is the best medicine for anything that ails me. I hope this isn't weeks and weeks to get back to myself!! I had no choice but to treat but I am very leery of medication since I can't even tolerate decongestants let alone this stuff. Okay I rambled enough for one night. Just needed to vent some.

Gator Man · Senior Member

Hi 4L,

Better safe than sorry and relieved that the gastric problems, while uncomfortable are not life threatening. Matt offers good dietary advice that might help your digestion.

We're all in ALT envy. No question your liver inflammation is becoming a thing of the past. Outstanding!

john

Matt Chris · Guru

Hey Fourlocos

Good to read of your test results, its wonderful thing to realize our fears were just that fear not reality.

You might try both a probiotic and papaya with your breafkast. Slice the whole Mexican Papaya length wise in half then scoop out the seeds and have two or three one inch slices of papaya everyday with your food. This will aid your digestion greatly.

Happy SVR

matt

basser · Senior Member

hi am 8wks post treatment.am virus undetected.great news. am feeling really depressed though.i know its due to the meds.as ive been fortunate and have never really suffered depression.wondered if many of you good people have had the same after treatment.must say that im so glad to be virus undetected.hopefully this depression will pass with time all the best

Tig · Admin

Hi 4L,

I'm relieved to know that you aren't experiencing any cardiac problems! I have lost family and friends alike that had ignored their chest pain and died. I also know many that did seek treatment and subsequently discovered blocked coronary arteries. They were successfully treated with both stints and medication and are thriving! Thank you for taking it seriously and calling your doctor. I knew you would have to go in, but now you know what is wrong and can deal with it. I know the kind of constipation you're describing! It happened to me on treatment too. I'll spare you any further comparisons, but I know how uncomfortable it is.

I'm also thrilled to hear about your ALT! Wow!! That's fantastic news. Keep up the good work and your attention to each detail. It does matter! I hope things "move" forward and you're back to feeling relieved soon biggrin

Tig

fourlocos · Senior Member

My stomach chest area was gnawing so badly this afternoon that I called the GI doctor. They had me get over to the ER to get the EKG and bloods and xrays just to be sure. It was all fine. Thank God! Seems to be GI related so they have me on large doses of Zantac and back to small meals through the day again. The xray showed I am very constipated LOL. Sorry for the info. The Harvoni caused that and I guess it's not resolved enough yet. They felt it is causing pressure and my organs up top are squeezed up. My poor inflamed liver all crowded. I am a small person and it makes sense. Also my upper back has been bothering me with the aches from treatment and life and they said that pain radiates around right to the spot I am having issues. Thank you for encouraging me to get checked. It's a relief to know my heart is okay. On the bright side my ALT is down to 7. It hasn't been below 31 in years.

Rubye · Senior Member

I'm at 4 weeks after treatment with Sovaldi and Olysio and am feeling much better. For me, I think a lot of my heart "aches" and fluttering was from gas because that side is gone now. The nausea and Lichen Planus problems are gone also. I am feeling so much better but still kind of weak and coping with arthritic stuff that got worse during tx. The only real "thing" I have now is dizziness but that is also lessening. Each day is better for me.

However, I agree with Tig in that if you have problems with chest pain it is best to get it checked out rather than simply going with the "it's only gas" idea like I did.

I read somewhere else on this forum that having muscle mass can make a big difference as to whether you have side effects or not. I probably have zilch muscle mass so that makes sense to me cause I barely made it through tx.

Tig · Admin

Hi 4L,

I'm sorry you're having this problem with chest pain. I have to ask if you have notified your doctor of this most recent problem? You absolutely should have an EKG to rule out any cardiac abnormalities. Don't dismiss chest pain simply as a SFX of Harvoni. I had to have 4 EKG's during treatment. Different treatment but the concern was evident. It's easy to rule it out and you'll rest easier knowing it's not your heart. That's my former medical training and concern talking. Please consider asking, okay? Be well...

Tig

fourlocos · Senior Member

Skewed I had to reply after reading your reply! I am three days post Harvoni. I was on the 8 week plan. I am not feeling good at all. I am having this strange heart area pain that made it hard to roll over in bed two nights now. I had to sit up and wait a bit. It also happened while having dinner last night only less intense. My anxious mind had me pondering if this is it? Was I having a heart attack. Then I thought maybe its gas or indigestion perhaps. No clue. But honestly I had similar pains and pain around my upper rib cage which is what sent me for my physical last Nov in the first place. Told my primary about the pain and she told me go back on twice a day Zantac and we would see how I am in a few months. That didn't happened because my yearly blood work showed elevated ALT which is how I wound up here! Diagnosed with Hep C. I am on many forums and many are reporting liver pain and upper stomach pains after treatment. I know the common thread between S/O and Harvoni is the Solvaldi. Makes me curious what is going on in my body right now. I am aching so badly the first hour of the day and having bad headaches.

Tig · Admin

Hi William,

So glad to hear your great news! If you have made it to EOT+8, I'm going to go out on a limb and congratulate you now. The odds of SVR now are almost (if not) equal to the full 12 week time period. You should be very pleased with your results!

The medication does take time to clear, the Ribavirin can take up to 6 months. You will feel better and better, but it will happen. As you said, you had this for 20+ years, give your body time to heal and you'll notice an improvement in many areas, but it takes time.

Keep in touch and let us know how it progresses. Good luck...

Tig

basser · Senior Member

hi there.im 8 weeks post treatment.was virus undetected at 4 8 and 12 eot.still really early days.am really feeling gratefull to be hopefully on road to recovery.i do get quite a lot of depression now though.i know its due to the meds left in body .also get some stabbing pains round liver area.also on my left side.think its going to take a fare bit of time for my body to settle down after having the virus for at least 20yrs also to get over the treatment.but the future is looking great compared to this time last yr.so despite the aches and pains im getting now its still a miricale that im still here. all the best

Rubye · Senior Member

I've had oral Lichen Planus for around 4-5 years now but it has gotten to where it is quite mild nowadays -- for the most part. Last week, one week after finishing Sovaldi/Olysio I had a really bad flare-up but then it went away on it's own after only a couple of days. My dermatologist, who does research in LP said if it gets bad again she can give me steroid injections directly into the painful spots. Meanwhile, she gave me a gel--Clobetasol that is applied with guaze to the sores. I haven't used it though because the flare-up went away on its own and hopefully it will stay gone. I still have sores but they are not painful, just annoying. I don't want to use the Clobetasol unless it gets really bad again because it can cause thrush.

sandypsych · Veteran Member

My husband has struggled with mouth ulcers that started during treatment (the triple therapy) and have gotten much worse since ending treatment (Sovaldi/Olysio). He was diagnosed with Lichen Plantus, which is evidently common in people with hep c. It can cause sores in the mouth, and rashes/plaques on the skin as well. Unfortunately there has not been any treatment for it. it usually resolves itself in a few years they said (yikes!). He also has had problems with receding gums and dental problems that seemed to be triggered by the treatment.

However, even with that, he says he feels much, much better post treatment (SVR) than he did with that miserable virus. So hang in there!

Sandy

skewedButNotBroken · Senior Member

I'm 11 weeks and 2 days post treatment and each day seems to be different. Today, I feel pretty good even though I did not sleep well last night. However, since I finished treatment, I have had mouth ulcers, an ache around my heart, heart flutters, an itchy back and liver pain that was so bad that it woke me up from sleep about a week ago. Also, I feel pain around my spleen area at least a few times per week. Also, I'm starting to have an itching feeling in my liver area (I hope that is just a sign it is healing). In addition, I feel like my immune system is in over-drive. It seems as if my body does not know what to do in the absence of the virus.

Now, do not fret if you are reading this because I still feel better than I did before treatment. However, if I had been symptom free, I would not have started treatment, but as mentioned, I felt absolutely miserable and thus I took the plunge into treatment.

Next Thursday I will have blood drawn for the 12 week post test...

-- Edited by skewedButNotBroken on Saturday 3rd of January 2015 11:43:56 PM

Michaele · Guru

Tig56 I had a quarter size patch of shingles during 4th wk of Tx, could the scalp issue be shingles? If you had chicken pox, it could be. Its a all herpes virus just a different variety... MIchaele Didnt realize your post was a year old , sorry for bothering you.

-- Edited by Michaele on Saturday 3rd of January 2015 03:12:01 PM

basser · Senior Member

what combo of treatment were u on?

Kellie · Senior Member

Hey buddie, things will get back to normal after awhile. Remember I had that angular chielitis. It took a good 8 weeks to start feeling better. I'm plagued with insomnia most nights lately and I've got some weird bladder issue now. So on another course of antibiotics. I have a feeling the immune system is building up again. I'm sorry you're having these problems. Trust me. It's temporary. Big hug from me.

Tig · Admin

I'm developing a whole new set of post treatment problems too. Geez, it seems each day is something else. I've also got a return of the itching, areas of dry skin that look like eczema or psoriasis on my face, nose, eyebrows and ears. Blistering on my scalp, not from the sun. Then there's the ear infection that may be resolving with help of the antibiotics. But there is an awful lot a nastiness draining out of that ear which takes constant cleansing to keep it under control. Last night I couldn't sleep at all, got up finally and spent the night here on the forum reading and chatting with others! I still haven't been able to sleep at all and now I've noticed the inside of my bottom lip is blistering, looks similar to fever blisters/herpes! I'm not sure why I am experiencing a worse problem with these side effects post treatment than I did during treatment, but I am, that's quite obvious! I was kind of looking forward to seeing a few friends and family during the holidays, but this is giving me a reason to reconsider! I'll keep up the routine to try and control it but it's not cooperating this time, lol! I think my body is missing the poison. This stuff can really deliver a curve ball when it wants to. I guess it's going to make me wait for that home run for awhile!

dustbear · Senior Member

My itching came and went over 45 weeks but it has returned after EOT in the form of excema on my hands, elbows and belly where I did my shots.

TeddyTrout · Senior Member

Darn really sorry to here that, was it your decision or your doctors? I don't really know what to tell you about the time line on the itching as I'm itchy all the time.

cinjanpat · Newbie

I had to quit treatment today, the side effects are just unbearable for me,how long before the itching will stop

greenqueen · Guru

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/After%20Treatment%20Guide.pdf

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