- Posts: 3
- Thank you received: 5
Good morning everyone,
My name is Kitty, and I am NOW 2 months 'Post Treatment', and 'Cured' as far as my first blood test showed. My Dr. called with my results 1 month after treatment, saying that I was 'Negative', telling me that they found NO TRACE of the Hep-C Virus in my system at all. My 'viral load' went from 6 million to zero after 12 weeks of Harvoni Treatment. (Hell actually!)
Now, I am closing in on 2 full months of being done with my Treatment, and I am still kinda 'sick', meaning that I am still feeling the same side effects and only having a 'good day', here and there. I KNEW that I wouldn't be doing 'The 2 Step', as I tend to say, my first week medicine free, as I have known about and lived WITH having Hep-C for over 20 years now. I received a blood transfusion in 1986 during emergency surgery, found out that I had it in 1996, was on Interferon AND Riboviran for 6 horrible months, and then told treatment was no longer an option, due to the medicine attacking my Thyroid, as well as my viral load increasing drastically. After that, I learned to 'live with it', and tried to keep myself as healthy as possible. (Obviously I did a good job, because my Dr. was excited to treat me, telling me that he COULD AND WOULD, CURE ME!)
Now, I know that my body needs to technically 'detox' AND get used to BEING 'HEP-C FREE', and I was realistic in knowing that I may be 'cured', and I am done with treatment, AND it would take TIME before I felt SOMEWHAT 'normal' again. (Altho after 20 to 30 years of HAVING the Hep-C Virus, AND trying to live WITH it and keep myself as healthy as possible, I really don't know WHAT 'normal' IS!?!)
What I was wondering, is how long will it take for my body TO detox from the HARVONI TREATMENT, and when will the side effects start to diminish? I am still experiencing the same side effects that I did during treatment, even to the point of still losing weight. I WAS 95 to 98 pounds prior to and during treatment, but now I am down to 90 pounds because 'food' AND a crappy appetite are still an issue.
I suffered thru my Treatment for 12 weeks, (January 19th to April 12th!) - Figuring that I may as well be sick during the cold Winter and then feel well enough come Summer, so that I could hopefully enjoy SOME of my Summer AND 'Riding Season'. (Motorcycle)
Now it is almost 2 months AFTER treatment, and I am still 'struggling'!
I am still feeling ALL of the side effects that I had during treatment, and I am starting to feel frustrated and depressed. Despite doing my best to keep myself from giving in and giving up, & always putting 'On' a Happy Face and Attitude and doing the right things and the best that I could to keep myself healthy and happy. I feel like I am never going to feel better.
I'm supposedly 'Cured', but I just can't get past this point in my recovery and it's starting to drag me down.
Can anyone help me out with this 'issue'? I am being as 'realistic' as I can, but I really thought that by the 2 month POST treatment point, I would be feeling better than I am.
Thanks for listening.
- Posts: 104
- Thank you received: 223
Hi Kitty, I am sorry to hear that after all that effort to clear the virus you don't feel better and it is concerning that you have lost more weight. My goes out to you. If you have not had a medical check recently then it could be worthwhile seeing your own doctor to find out if you have something else going on. For instance you mention your thyroid taking a beating from your old treatment.
Your query about how long it takes to detox - Dr Freeman provides an answer for Harvoni half-life in the following forum topic: How long should I wait after treatment before getting pregnant?
Kitty, I cannot hyperlink it due to current tech glitch I am having.
G2, infected maybe in 1971?
Diagnosed HVnon-A non-B 1980s, revised to HVC 1990's.
Treatment naive. Fibroscan & bloods all normal ranges.
Viral load 7million,
began Redemption trial4, 12-week generic Sof/Vel (Incepta) 2017. Week 4 UND, Week 12UND, SVR24
Thank-yous to my doctor for the script, to Jan at FixHepC for wrangling, and to Dr Freeman for courage.
Kia kaha e hoa ma!
- Posts: 3
- Thank you received: 5
Thank you "Mnem", for replying to my post. I very much appreciate it!
I see my Primary Doc, monthly, (have my next follow up, on the 9th of this month. He's not the best, but we HAVE built a decent 'Doctor/Patient Relationship', after 3 long years of seeing him. (Doctor-wise around here, can be somewhat difficult in FINDING the 'right one for you', which is why I stay with mine, as most other Dr.'s wouldn't treat me, due to 'circumstances')
SOOOOOOO, I stick with who I have, and after all this time, he knows AND TRUSTS me, finally getting to know AND 'get' me, too!
My Hepatitis Dr., is THE BESTEST & #1 Doc IN this area, AND in his 'Field'!!
And he's done THE BEST for me, HAPPILY ASSURING me, that he COULD & WOULD, CURE ME! Which so far? He did. As he called with my 1 month 'After treatment' blood test results, saying,, your NEGATIVE! I asked what he meant, and he told me that I was at 6 MILLION 'viral load' at the start,, and after 12 weeks of hellashish treatment, they found NO TRACE OF the Hep-C Virus IN my system, at all! (I get tested again, in 4 months, and he BELIEVES that I will still BE NEGATIVE at that point as well)
As far as my weight issues go, I have been dealing with being underweight since I hurt my back in 1994, and after 2 years of poor pain control, and then stomach pain, that led to finding out that I had developed 2 bleeding ulcers. (THEN they finally found a way to treat my pain and not hurt my health.) THAT led to being tested and ultimately finding out about the Hep-C. (The rest, you pretty much got from my first post.)
Unfortunately, I come from a family with a history of having 'High, Quick Working, Metabolisms,, as well as the fact that with ME,, I 'ride the fence', between 'Hyper, & Hypo' Thyroid issues. Plus, I am also Tall, Thin 'Framed', & I am just like my father and brother, who are BOTH of the 'same build & can eat and eat and eat? And either lose weight themselves due to the work that they do, and they continue to eat high calorie foods, and ARE STILL THIN AS RAILS. Only, they are both healthy.
I have been extremely realistic about EVERYTHING, from day 1, become I knew that I had Hep-C, and I did everything possible to keep myself positive AND healthy, and would put ON that so-called 'Happy Face & Attitude', and WAS ABLE, TO FUNCTION!..... UNTIL treatment. And being realistic and smart, I knew that I wouldn't be doing a 'Jig' right after treatment, as I know that my body needs to technically detox, AND get USED TO, BEING HEP-C FREE!! I would think that THAT ALONE, would be a 'shock' to the 'system'!
Part of my food problem, is that I just don't GET hungry, (unless I have 'help', which both my doc's know about, AND understand.)....
I also have issues with tastes changing, and things I liked before, I don't seem to like now. Plus, I get full quickly. But I know enuff to eat small snacks throughout the day, which I do, and I also make sure to 'hydrate', smartly. I am on other med's, for my pain, and for anxiety, which REALLY took off while ON treatment! (THOSE, are better now!), but I am still 'struggling', and in coming HERE? I found out that I am NOT the only one!
Also, at this time, I have finally gotten myself down to the LOWEST DOSES possible, with all meds that I need, to have SOME quality of life, as 3 years prior my pain doc had me OVER MEDICATED, and once I realized what was going on, I went thru at LEAST a year of horrible, hellashish withdrawal and detoxed myself completely! Now? I AM on the lowest doses possible, but also have to still deal with AND have pain, every moment of every day. That doesn't help much either! But I AM doin my best.
So, thank you for your time and reply. Maybe some of this extra info will give you more 'insight', as to me, my history, my 'issues' AND my treatment, and completion OF!!
I knew that I wouldn't feel great right away,, but I just thought that by NOW I'd be a little bit better!?! Just as I know that everyone AND their treatment would differ!
I have great friends & support, but I found this site and knew that it would do me good, to share & 'vent' with others in the same 'boat'!
After all, my husband has been my BIGGEST SUPPORT POSSIBLE, but I just don't wanna dump everything on HIM, because HE doesn't have all the answers, OR even know WHAT to say, that won't have me snapping at him! I'd be LOST without him!
Have a good and Blessed Day!!
Kitty, it sounds like you have a lot of things going on health wise. I have had anxiety and depression since my late 20's. I am on meds for those, which work great. I have also found eating right is a major contributing factor to feeling well. 90% of serotonin is in your gut. Get your gut healthy. Eat lots of greens, in small doses if you have to. I am small boned, like my mom and was worried about losing weight on the medication. I was 105 but now up to 110. I don't have much of an appetite but I do like Coca-Cola, which is really bad for you and threw most all but 2 small cans out. I hope your doctor is able to help you It would be nice to get whatever is causing your pain fixed because pain medications are really hard on your body. It is nice to have the pain gone but it would be better to have the problem gone. I wish you the best of luck
Sorry to hear that you are still having some issues post treatment. Given your weight the medication dose per pound/kilo would have been much higher (almost double) than the nominal average patient weight of 75kg which I suspect may explain your experiences while on treatment. Here is the link that Mnem was trying to provide regarding how long it takes for Harvoni to leave our bodies. As you will see, after 3 months almost everything will be gone and after six even any last traces will have disappeared.
The above explains the rate of chemical change but of course after many years living with HCV our bodies and minds may need time to adjust to its absence and this will no doubt be affected to some extent by the amount of liver damage (fibrosis/cirrhosis) we had. From what I have seen here and through talking with others, people do vary in the speed they recover post treatment with some seeming to bounce back straight away while others do take longer to recover.
We should also keep in mind that many of us are in our 50-60s and may have other age related health issues that need investigation. As you appear to have a good relationship with your current doctor maybe have a chat with them about how they would examine/diagnose a patient who presented with your symptoms if they didn't suspect HCV?
G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
In terms of the drugs, they are now for all intents and purposes completely gone from your system.
In terms of long term after effects, many of the bits in your body from 2 months ago have now been replaced by new ones, and that process continues so some people who remain less than well post treatment certainly do improve over time, maybe because our bodies are avid recyclers. Maybe because time is a great healer.
Now that said I would be looking for other causes.
You know you have thyroid issues and being hypothyroid (or hyperthyroid) certainly wreaks havoc.
I'm not a great believer in most supplements but Vitamin D and Vitamin B12 seem to help some people who feel fatigued during treatment. This would be easy and cheap to try.
Routine health matters like get some sunlight, drink some water, eat a varied diet, get some exercise, get enough sleep, not too much booze, and smoking is bad, are all basic mothercraft advice but worth looking at.
Having had Hep C places you at higher risk of all sorts of diseases. Getting older, and we all are, also means lots of other things can happen.
Diabetes is very common. Various cancers - blood, lymph and kidney all happen more commonly as well as the well known liver cancer risk.
So it might actually be worth going to another doctor and not mentioning you've either had Hep C or been treated. At least at the first consultation. Without that knowledge, they will be forced to look at you with fresh eyes, and no distortions due to pre-conceived notions.
If I was meeting you for the first time we'd start with the story of what's happening, we have a look at you physically and I'd order a fishing net set of blood tests something like:
CBC, CMP (LTFs and UECs), Thyroid, Blood Sugar, Iron, B12, Folate, Vit D, Ca/Mg/PO4, CRP, ESR
Usually something turns up to give us a hint.
- Posts: 3
- Thank you received: 5
First, I would like to say THANK YOU, to each of you who have replied to my post and questions! You were ALL very helpful, gave very insightful answers, AND even a few 'tips', as to what I can try, and or do,, to HELP IN the final stages OF my 'Recovery'!
What I would call the final 'STOP', on my "Harvoni Treatment Train Ride, thru HELL"!!
(When it came down to my LAST 10 'PILLS'? - I just HAD to have 'fun' with it, as I DO HAVE a 'Crazy, Wise-Azz Sense of Humor'!, which HAS kept me going AND helped to GET ME THRU!.... SOOOOOOO, I started a nightly 'Posting' on my "FB" Page, stating that the '10 TO 1' COUNTDOWN to finally being DONE with my Treatment had begun. And each night I would post with a 'Train Whistle Blow', announcing that the "HARVONI TREATMENT TRAIN", was ready to leave the Station. Then, I would share a little, while also making each 'Station Stop', '#10 TO #1', a wee bit of fun, making each 'Countdown Stop' something different and silly, until before I knew it, I had not only grained 'extra riders', lol,, but my SUPPORT SYSTEM GREW GREATLY!.... And by that LAST and FINAL 'pill', that final 'Station Stop',, everyone who was PART OF that 'Journey' WITH ME, not only enjoyed the 'fun' that I had turned it into, but they were a BIGG PART IN ME MAKING IT, 100%!... AND I found out that I have quite a few caring, REAL FRIENDS! AND a GREAT SUPPORT SYSTEM! I took the 'hell' that I had been IN, and turned it around with a light hearted twist, (INSTEAD of WHINING!),, and before I knew it? My 'Treatment Train Ride' was over, and next? Was my POST Treatment 'time'.....)
Which is where I am at, now! - And coming HERE? Has been my next, BEST STEP FORWARD, AND very helpful in finding the answers that I HAVE HAD & needed to KNOW about, NOW!!
And before I 'ramble ON', (BAD Habit that I have OF doing!) - I DO, I WOULD LIKE TO SAY & SHARE,, that,, "What a Difference a Day Makes"!!
I AM getting better. I AM 'getting there', and I do have my 'Good days' AND my 'Bad days', treating each as they come, and doing what I can, and what I KNOW is best, FOR ME! (Old 'habits', I'm trying to 'correct', while NEW Habits TAKE, their place! - A definite 'work in progress'!!)
Well, I do know how important GOOD NUTRITION IS! And when I get a 'craving'? I know that my body is TELLING ME, WHAT it wants/needs,, and I LISTENED AND ANSWERED! - I HAD EXACTLY WHAT I NEEDED, and 'fed my body' what it was asking for, which was a Complete, Hot, Steak Dinner with carbs & veggies! When I started, I was having a good day, yet I was very-very weak!
Well?? - Within a half an hour AFTER my meal,, WoW! Was I suddenly feeling SO MUCH BETTER, AND? I was no longer weak, shaky, or 'yucky' in ANY WAY, WHATSOEVER!!
I?......... Felt GURRRRRR-REAT!!
It was, for me and for the first time in a while, a 'Good Day', all around, and I made it even better, by doing the right things and eating what I knew my body wanted!! Also, QUALITY SLEEP HELPS IMMENSELY! As well as keeping my PAIN UNDER 'SAFE & SMART', CONTROL!! 2 THINGS, which for me?? Are very-very crucial and important!! I guess that we all learn as we go. While 'Sharing' & 'Supporting' each other is ALSO CRUCIAL, in and to our recoveries.
I guess what I really wanna stress and share, IS: "WHAT A DIFFERENCE A DAY CAN MAKE"!!
Because while our bodies get USED to BEING clean, healthy and FREE OF a nasty virus? WE seem to also go thru a period of 'change' & 'Adjustment' too,, almost as if we're learning WHO we really ARE, as a 'purrson',, a NEW, HEALTHY PURRSON, which IS new to US, especially if we, (like STUBBORN ME!),, went thru each day and pushed aside how we REALLY felt, and day after day, we would stubbornly, 'put ON', that "Positive, BRAVE,,,,,, "Me"? - Nahhhhh..... I'm not sick,, 'FACE/FRONT' for all to see.
UGGHHH!! It may have become 2nd nature to us? But it sure was NO WAY TO: 'LIVE/EXIST'!! So, that too, plays a role in our recoveries!! - Learning 'WHO' we truly are, and 'HOW' to 'be' and truly move onwards and upwards!!
So, for those who replied and were very helpful, as well as anyone else in the same 'boat',, I simply wanted to pass ON:
1ST,, HANG IN THERE!! - AND 2ND,, "WHAT A DIFFERENCE 'TIME' AND, A DAY MAKES"!!! - The 'BAD Days', may BE BAD!! (I KNOW, I'M STILL THERE, OFF AND ON!) - BUT, it DOES GET BETTER!! THERE WILL BE "GOOD DAYS" AHEAD!!!
And a "Site/Forum", such as THIS ONE?? CAN & WILL BRING YOU THE ANSWERS, SUPPORT, AND ANYTHING ELSE, THAT YOU MAY BE LOOKING FOR!!
Thanks and Blessings to ALL!! & (HOPEFULLY) -
A GOOD WEEKEND AS WELL!
Huggz & Meowzzz,
I am glad you are taking care of yourself. It is nice to have a place to come where people understand the struggles. My husband says maybe you are tired because you don't do that much. Oh I hold my mouth. I know he doesn't understand and oh well. So you move on and try to make each day count. I am still working on a diet that feels totally right. I eat a lot of salads with lots of greens and other veggies but something is not right. However, I have to admit, I am addicted to Coca Cola. I would have three a day. So I do have irritable bowel, esophagitis and gastritis and hepatitis. So you think I could have the one vice that I like---The answer is NO! I can't ,so I stopped it yesterday. Being fatigued is not very fun. I haven't eaten garbage food (greasy, fried crap) and don't eat at fast food restaurants (I don't call it food-it is garbage) and haven't for years. So maybe things will improve. It can't hurt.
I have enjoyed reading your threads and it is nice to have someone who can relate. TY