Author Topic: Sovaldi/Ribavirin post-treatment effects (Read 28290 times)

bepper · « **on:** April 27, 2015, 04:41:47 pm »

Hello,
I've been away from this board for most of my treatment caring for my husband through his liver cancer and (YAY!) liver transplant, which happened to also come on my last day of treatment, 3/20/2015. Ironic??

I tested as UNDETECTABLE @ 4 weeks into treatment, and ever since.
Anyway, now @ 5 weeks post treatment and hubby's transplant, I am just exhausted. I am slightly Vit D deficient, so I started D3 and a multivitamin a week ago. I saw my PCP last week and she thinks my fatigue is simply from caring for my husband. But today, I don't agree with her. I am exhausted all day long. I am going to force myself into going outside for a walk and some fresh air. But is it normal to force myself to do everything I do?

I am convinced I was going on pure adrenalin during my husbands surgery and recovery, but after going through the board, I don't see any posts of others feeling fatigue after Sovaldi/Riba treatment, unless I am missing it. It looks like so many are doing well and I am so very happy for all, and maybe this too shall pass for me? Any post tx thoughts?

bepper

Mike · « **Reply #1 on:** April 27, 2015, 05:50:11 pm »

A good rule of thumb is for every month a person is on Ribavirin, it can take 1 month to get rid of all the side effects. So, if you did Riba for 12 weeks, it can take 3 or more months for all the side effects to disappear. If you add Interferon, it is a 2-1 ratio and will take about 6 months for the sides to dissipate.

Best wishes, Mike

bepper · « **Reply #2 on:** April 27, 2015, 10:37:27 pm »

Well that makes sense Mike, Thx for posting cuz I'm feeling so crappy I'm wondering what got missed, or caused BY the treatment. I never thought of it taking time to leave my system.
So 24 weeks of riba=48 weeks of this, better than the alternative of no treatment at all.

Funny thing is, during treatment, I had days of endless energy, like I was 30 something again. I just wasn't prepared for this.

Thanks again!

Mike · « **Reply #3 on:** April 28, 2015, 07:33:06 am »

It took me about 6 months to shake all the side effects of SOL+RIBV+INTF.

Since your treatment didn't include Interferon you'll probably return to balance a lot quicker (12-24 wks).

Best wishes, Mike

Francis60 · « **Reply #4 on:** April 30, 2015, 09:26:11 pm »

Hi,
I am 2 weeks post RIBA/ Solvaldi, and feel exhausted ,eyes are red again and cramping in hands and feet.

Geno 3 24 weeks RIBA/ sol undetected week 4

CE · « **Reply #5 on:** May 01, 2015, 11:53:16 pm »

I also am 2 weeks post Sovaldi/ribivirin. I seen my doctor today, and he is optimistic that things will go well. My bloodwork was excellent, HGB was still low, but above 11. I told him for the first week off treatment I experienced stomach issues and intermittent liver pains. I also have not been sleeping well. He said the riba stays in your system for at least 6 months after EOT, and he seen no cause for concern with my after affects. I go for bloodwork in July and October. I will be on edge until then. All I can do is try to get on with my life and wait it out. I will keep praying for all of us to achieve SVR once and for all. Best wishes to all. Take care. Chris

bepper · « **Reply #6 on:** May 02, 2015, 02:24:16 pm »

I am glad to hear I am not the only one feeling issues from the Riba, it amazes me that the symptoms vary so widely. I had very few side effects while I was on it, mainly an "edgy" feeling, like I just wanted to jump out of my skin sometimes. I had severe itching on the outsides of both my calves, thank God that has now stopped!

But my good friend got violently sick from the Ribavirin. She needed help walking, her hair fell out, etc. Now I read stomach issues, liver pain, cramping and exhaustion.

This week I also got a cold/flu for a couple days. I stayed in bed with a small fever for a full 36 hours, then got up yesterday, went for an early morning walk and got a lot done for the first day in a long time. So much that today my back is killing me.

I'm not normally a whiner, but glad I posted so I know I am not alone. Somehow, that helps.

Praying we can all move on with a Hep c free life very soon.

Thanks for posting!

Francis60 · « **Reply #7 on:** May 03, 2015, 07:59:46 am »

Hi Chris,

I have also been hearing that these side effects post treatment are very common. We are having a major detox as our body is trying to rid us of this poison. We can just take it a day at a time.
cheers
liam

CE · « **Reply #8 on:** May 03, 2015, 10:00:14 am »

Hi Liam,
So true! These drugs are VERY toxic. No different than cancer drugs. They alter everything in your body in order to single out the virus. Just the fact as to what the riba does to your red blood cells is scary enough. The very thing every organ in your body needs gets destroyed as soon as it is created. I guess our bodies go into immediate healing mode as soon as the drugs are ended. My doc said as my HGB increases, my energy will return, thus my other organs will bounce back. My stomach issues have calmed down as did the liver pains. I still have some itching now and then, and still don't have stamina. But as you say, we should take it one day at a time and hope for the best. At this point, there is nothing more we can do to alter the situation. What will be, will be. Prayers and hope can go a long way. All the best to you my partner in battle, and to all still battling! Take care.

Chris

Tess1971 · « **Reply #9 on:** May 14, 2015, 08:49:06 pm »

I am almost 6 months post treatment and having skin/itching flair-up still. They subsided after a couple of months, returned, subsided and now returned again. I figure it is time of the year and the skin sensitivity to UV that might be aggravating my skin. Histamine hives come and go but I am dealing with it. As for the fatigue that disappeared, and my stamina is slowly coming back. So it will get better I can tell you that. I am more sensitive now to the pollens etc now so I am hoping that will also subside with time. Maybe my immune system is in overdrive due to its having to keep the hepc in check for 40 plus years and now needs to calm down - this is what I tell myself.

bepper · « **Reply #10 on:** May 14, 2015, 11:50:24 pm »

I appreciate all the feedback and agree with all.

I've been offline for awhile since whatever cold I had came back with a vengeance! I had such gorrible sinus/ear pain I had to go BACK to the Dr! She gave me antibiotics for 10 days and told me to get plenty of fluid and rest. I had no choice for the first several days. I was back in bed, dang!

I was able to get up on Mothers day and go for a lovely delish breakfast with my kids and grands. All of us went and it was a great day! I got up yesterday and spent the day with my other family of dad and sisters. Another great day!

TWO days in a row of regular energy has been awesome. Hubby is out and about with me testing out his new liver (Thank you donor family)

Odd this is only my second ear infection in my life. Hubby prob didn't get the bacterial infection I had since he's on antibiotics? First time in 40 yrs one of us got sick and didn't pass it the other. Transplant has taught us to be even more vigilant hand washers, so Idk!

I'm looking forward to all of us putting this awful disease behind us and gettin on with living. I am so grateful today, not all of us are so fortunate. The meds so far haven't been perfect, but if hep C never comes back... what a blessing.

bepper

stpeteguy1964 · « **Reply #11 on:** May 20, 2015, 07:02:04 pm »

My last treatment of Sovaldi/Ribavirin/interferon, was on Oct 9 2014, I took it for 3 months prior I am 7 months off and still undetectable, it took a good 3 or so months for my other blood work to go back to normal, I feel much better now, more strength I can tell my body is doing much better.

victoria48 · « **Reply #12 on:** July 15, 2015, 08:22:11 am »

Hi All: I am 28 days post 24 weeks treatment for Hep C Geno 1 A- Solvaldi and Riba. I still have itching spells starts with hands or head and then comes up in various areas and I have to take something so I will not go crazy. My anxiety level is high at times. I wonder if I will be virus free for good as I suffered so many side effects during treatment until my Riba had to be cut down to 600 mg a day. It all did something to my mental health as I got angry, paranoid and disconnected but doing a bit better.

One has to questions "will I be totally cured when I take that blood test in Sept? Will these side effects ever go away as 4 day ago huge (big as a walnut) cyst or something on my chin drained. Then 3 days later hard pea size knots pimples on each side of chin. Leaving brown spots.. never had either in my life. Does anyone else have skin issues and the depression and or anxiety etc, etc.
My journey was not very supportive and had lot of housing issues so high stress while finishing treatment ..NOW I DO NOT SLEEP! I can nap in the day time but when night comes I am totally awake and this is all post treatment. I hope some others share with me. I mean really do not sleep without something to make me sleep.. HELP

Thanks Victoria

kimharvest · « **Reply #13 on:** July 19, 2015, 03:01:24 pm »

Dropped from programs at 3 1/2 months out of six for type 3a a couple of days before Mother's Day. So I am two months after stopping. It has been rough and discouraging but getting better. Was tired and disoriented but mostly because of shock being dropped. Week by week I am getting energy back. I decided to sweat the poison out. So I am working hard on my farm building from 1 hour a day to a few hours a day. I think it is helping to get it out of my system!
Things seem different for me too. My skin is more sensitive in general, the dime-sized circles around my right ankle are still there, fading very slowly. I had to cut off all my labels on my panties because they drove me crazy. Insect bites seem worse. I also had some weird large inner bumps on my chin that plagued me for a month. I started getting ticks 1/2 way through treatment which still bother me, like electrical misfires at points around my face. An odd autoimmune disease came back which I had hoped was connected to the hepc and was gone. And spreading...
I am hoping my stomach and system will improve but it actually feels like a jumbled mess. I certainly don't see my arthritis improving at all.
I also liked the rejuvenating energy that came the first month during the cure. That reversed on me during treatment until I was stupefied. But that is coming back as I push it. You gotta try and challenge yourself. My mind on the other hand has not improved like I had hoped. My short term memory loss has gotten worse and I seem to reverse my words and struggle. But that is life and I try my best to go with the flow. But this is a lot of change quickly to have to continue to try to adjust and then readjust...
I too, am curious about whether my chances were good enough to be cured. I am preparing just in case. Trying to undo all the horrid clutter and disorganization that accumulated during end of illness and the dementia I endured. Trying to troubleshoot annoyances fixing stupid stuff I had put off and making major decisions just in case. Really appreciating as much as I can but living a limited life style because of ordeal and residual 'post-war' syndrome.
My best to all and give it time, keep sharing so we know we are not alone. It was a huge help for me to read one man who stated he had red circles around his ankle so when it happened to me I didn't freak out! But does it ever go away? What the hell is it?
It is like we got shot into outer space and are exploring foreign new territory. No wonder anxiety and fear finds a foothold! Good luck to all and keep the faith!

Francis60 · « **Reply #14 on:** July 19, 2015, 07:01:04 pm »

Hi Kim,
Good to hear from you, it sounds like you have really been through the wringer, sorry to hear this. Have you been tested since you stopped treatment? I hope it starts to get better for you soon. For some reason I thought once finished treatment is would be all a breeze, but I am 12 weeks EOT and still the side effects linger on. Its getting better but very slow.
Good luck to everyone fighting this disease!
cheers
Liam

KimInTheForest · « **Reply #15 on:** July 19, 2015, 11:24:13 pm »

You have a very strong spirit, kimharvest.

Throughout my own harvoni+riba treatment (which I still have one week left on), I noticed insect bites were much worse. Mosquito bites would swell and cause pain and uncontrollable itching like wasps stings. They would bleed so badly I had to put a bandaid on each of them. And I would feel their initial sting like a knife had been jabbed into my leg. I have got big mosquito bite scabs dropping off just today from bites I received 10 weeks ago! Normally I heal much more quickly from any injury. I formed the opinion that something about the ribavirin or the harvoni was ramping up my body's histamine response. I was almost ready to start taking benadryl for mosquito bites.

I hope your other post-tx effects resolve soon. And I hope you have good news when you go for 12-week post-tx labs.

kim

Tess1971 · « **Reply #16 on:** July 22, 2015, 03:44:29 pm »

Okay my blood work was great and still undetected at 32 weeks. However, the rashes still persist. Its not like I never got any rashes prior to treatment, but, they were rare and always disappeared in a day or less. Since treatment they are awful. They start to get better only to get worse again. This has been going on now since treatment……….got better during winter just to accelerate when spring came. It is like I now have allergies ten fold what I may have had prior, if I did. I itch after I eat no matter what it is, I am itching now just being on the laptop. Sometimes I think I am allergic to everything. Doctors just tell me to continue to use antihistamines as they feel it will resolve in time and do not want to use steroids yet (which is good since they are bad for the liver) I am at 35 weeks post treatment now and hoping when this AWFUL hot weather here in middle Tenn is gone my rashes and itching will also.
I have been told by many it may take a year or more so I am being positive and hoping……at least I have cleared a virus that I have had for 40+ years; YOWSERS!!

CE · « **Reply #17 on:** July 22, 2015, 04:12:43 pm »

Yes, Tess, alleluia, that nasty virus is gone!! Congrats big time on that!! I hope the rashes resolve for you tho. We took such powerful new meds and I guess they don't really know the full aftereffects yet. My hair started thinning out 2 weeks post tx, and it is still going. I am 14 wks post tx and I have lost at least half the volume of my hair. I also get occasional facial twitches, my inner ear also gets spasms and it sounds like a rumbling vibration. Drives me nuts! My skin went from dried out during treatment to oily now. (Good for the wrinkles tho!) AND certain foods bother my gut to where I will feel bloated. Did I mention I gained about 10 lbs too! Whew! I sure do hope things smooth out with time. Other than that, I feel good, more energy too. And feeling very blessed to be rid of that beast after having it tag along for 36 years. Take care and keep us updated. You shouldn't need any more blood tests for a while now. You got the golden ring!!
Take care and God bless.
Chris

victoria48 · « **Reply #18 on:** October 15, 2015, 12:12:40 pm »

Hello:

I want to communicate with others post R + S treatment. Now 4 months post but feel terrible some days. Cranky, mild headache and bones hurt some times. Virus undetected after recent blood work. If anyone same ans reads PLEASE share.
Thanks Victoria

Francis60 · « **Reply #19 on:** October 15, 2015, 09:11:24 pm »

Hi Victoria,
I am 6 months post and some days are OK but others.... I am also getting joint pain, it seems to be worse than before. I was just told from another member to giving myself a year, I will start to feel better as the liver regenerates itself. hope so!
Hang in their
cheeers
LIam

rainbowray · « **Reply #20 on:** October 15, 2015, 11:22:31 pm »

So,
I am 10 months post treatment sol/riba 24 weeks. Though I cut back the riba a lot as I had to work. My blood panels show no liver malfunction. When I don't eat any sugars, fats, grains--I feel the irritations in my liver subside. Pains come and go still, but in general it is a improvement that I feel. I get fatigued still at the end of the day. Exercising is a big help, and is key. I was undetected at 4 months post treatment. I get a 1 year test in 2 months. Itching occurs still but in the last month, has improved to a very tolerable place. I believe you need to give it a year before close to "normal". Also, if you have rash by the ankles, get tested to "mixed cryoglobunimia)-- a blood condition caused by hep-c to a lot of us. Look it up, cause if temperatures cause you to get itchy and fatigued you may have it.

Tess1971 · « **Reply #21 on:** October 22, 2015, 11:09:05 pm »

It will be a year in a few more weeks and I can definitely see a difference now. Started getting much better at 10 months and now the rashes are mostly gone and itching is only occasional now. Tiredness is definitely less also. All bloodwork done at 9 months was great so I feel I am on my way finally. It has been a long road for sure. I do get an occasional pain where the liver is now and never did before though. Maybe it is busy healing itself - ha!

KimInTheForest · « **Reply #22 on:** October 22, 2015, 11:34:38 pm »

Quote from: Tess1971 on October 22, 2015, 11:09:05 pm

It will be a year in a few more weeks and I can definitely see a difference now. Started getting much better at 10 months and now the rashes are mostly gone and itching is only occasional now. Tiredness is definitely less also. All bloodwork done at 9 months was great so I feel I am on my way finally. It has been a long road for sure. I do get an occasional pain where the liver is now and never did before though. Maybe it is busy healing itself - ha!

This is very good news, Tess. I am glad to hear the long and difficult post-tx stretch you have been going through seems to be turning around for you!

kim

Tess1971 · « **Reply #23 on:** October 26, 2015, 10:13:03 am »

Thanks Kim, my only complaint is that I have found that I am now more susceptible to allergy like reactions to things outside, like raking leaves, weeding, cutting grass, even my cats hair at times. I never had these issues before treatment and do hope they are not a permanent change since these meds do work on a cellular lever. Even if I am completely covered when doing anything outside and change afterwards I will still itch afterward. This also goes for some foods that never bothered me prior to treatment.
I hope in time this will all be just a memory. I am interested in hearing from others if they have had this issue and it did finally go in time.

CE · « **Reply #24 on:** October 26, 2015, 12:07:55 pm »

Hi all,
Tess, you bring up a very good subject. I feel good, but I do suffer with more allergies. For the past 3 months I have been sneezing with a runny nose. The slightest perfume smell brings it on too. My nose has become very sensitive. And Kim, I also have difficulty with sugars and fats and milk. But I figure it's a small price to pay for a healthy liver.
Take care!
Chris

Francis60 · « **Reply #25 on:** October 26, 2015, 08:18:31 pm »

Hi All,
I have muscular pain since finishing treatment, it's manageble though. On the up side my brain fog is clearing and my digestion has improved. Good to hear from you Chris and Tess
Cheers liam

CE · « **Reply #26 on:** October 26, 2015, 08:37:45 pm »

Good to hear from you, Liam! It amazes me how these meds affected everyone in so many different ways. I have to wonder what our long term effects will be. But for the time being, we just need to focus on the positive, bask in our victory and hope our bodies catch up! It was a long road, and some are still navigating it. I will continue to pray for you all, dear friends.
Take care.
Chris

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Author Topic: Sovaldi/Ribavirin post-treatment effects (Read 28290 times)