Hep C Discussion Forum

shotgungirl · Member

RE: What is going on???

Terry · Senior Member

Hi Karen

I have been off the drugs for a little over a week and while at times I feel a boost of energy for the most part I try and limit my activities to one or two things a day because I am still very tired and feel like I want to sleep a lot. And I think Do is right that this is the time of year where in my area it's getting a bit colder and raining a lot so it seems we need our bodies to adjust to it. And Matt yes I am having some of those Phantom gut pains you had so at least we know most of the symptoms are similar.

And my guess would be that when we feel some of these symptoms we immediately start to think there might be something wrong so we add to our own stress load. Funny how we let our minds work us over...lol Have a great weekend you all !

Cinnamon Girl · Guru

Oh Karen, that is so weird, no wonder you are puzzled! I hope you manage to get some relief soon, and even better that all these strange symptoms clear up and disappear completely! You know, I admire all of you who put yourself through these clinical trials, you are actually very brave pioneers and we should all be thankful to you for leading the way.

Keep us updated...wishing you all the best.

ios9 · Senior Member

I would say both and would add it's fall time, our systeme has to ajust too.

Do

Karen · Senior Member

Interesting posts on ION-3 trial from RH and Socalbeatnik...seems like we are all having a bit of fatigue...and feeling a little worse than while on treatment...Hmmmmm. Withdrawal???? or High expectations????

-- Edited by Karen on Wednesday 9th of October 2013 11:04:03 PM

-- Edited by Karen on Wednesday 9th of October 2013 11:05:39 PM

ios9 · Senior Member

garfield wrote:
Hi Do, hi Karen
And absolutely, you do not look your age, otherwise gilead hasn't accept you as a participant.

lol lol lol

ios9 · Senior Member

Hi Garfield,

One may note Karen is 103 years and 6 months (from her profile) so may be she needs more time to settle down biggrin biggrin biggrin

garfield · Veteran Member

Hi all,

Every morning about half a hour after taking the abbvie drugs I got stomach pain and nausea and every day this SX was over 4 hours later.

I was suffering from insomnia but only a little bit more increased than before, so I didn't care and I was suffering from itching.

Beginning with week 4 my fitness was decreasing, the badest week with this was week 10.

About 3 weeks after EOT I was feeling somatical better than before the therapy, and now 12 weeks later better as years before.

But up to EOT8 I wasn't really relaxed for fear of relaps.

Like mallani mentioned only Ribavarin has a long effect with a metabolic half-life of about 14 days in the body.

The half-life of abt-267 is with about 1 day the longest from the 3 abbvie drugs. After 2 weeks most of them are catabolised.

cheers

Karen · Senior Member

Do/Garfield..Thanks for a good laugh this morning..I feel 103 right now...funny!!! Good to know you are on the mend and this to shall pass.

Malcolm, interesting point. Old drugs were a blessing to get off of therefore, anything was easier to tolerate. It is interesting to hear other folks post treatment sx on the newer meds....sounds like similar stories. Sx w/short duration.

Terry/Matt...drinking water..not an issue. Getting off the couch, another story. I will start making an effort to move around more...needed your coaching..thanks.

I did do a little research..I am going to start taking Magnesium/Calcium to see if that will help with the muscle spasms and twitching...Also, this was interesting...I have herpes... I woke this morning with the "worse" outbreak of my life...and I do mean "bad" can hardly sit down. Maybe my body is a little upset these days....rebelling! Such madness!

-- Edited by Karen on Wednesday 9th of October 2013 02:28:01 PM

Matt Chris · Guru

Hello Karen & Terry

Sorry to hear your going through some tough times, not sleeping long enough can lead to a kinds of weird problems. The strange twitching and other nerve issues, maybe it is withdrawal symptoms .

I would think because you never had them before perhaps it might be a result of the Sofosbuvir/GS5885 and likely to tail off as your blood and body returned to normal.

I would think that Terry's suggestion about drinking high quality water would help hasten the the recovery. Terry the only symptoms I remember after treatment from Abbvies drugs were being tired for the first two weeks and some phantom gut pains / inflammation, but I must admit the stress and tricks that our minds can play can have an impact on our overall feeling of not only are psyche but also our body. The idea of taking a walk in nature is a great choice and getting the blood in motion from exertion always help the endorphins to flow.

The body has a fantastic ability to heal itself over a fees weeks so if it does not change after that please get it checked out.

Hoping the best for the both of you

Matt

garfield · Veteran Member

Hi Do, hi Karen

And absolutely, you do not look your age Karen. Otherwise, I'm sure gilead hasn't accept you as a participant.

-- Edited by garfield on Wednesday 9th of October 2013 12:18:49 PM

mallani · Guru

Hi Karen,

What you describe is interesting, as we have little post-Rx experience with the new Abbvie drugs. For good old triple Rx, most people have an instant reduction in Sx although Ribavirin hangs around for months. It would be useful to hear experiences from other Abbvie Trial members. Certainly the mental side plays a part, as finishing Rx produces anxiety about the future VL results. Perhaps the old drugs caused such dreadful Sx, it was more a relief to finish them, compared to the 'easier' new DAA's. Hope you come good soon. Cheers.

ios9 · Senior Member

Hi all,

Karen, I was on AbbVie Turquoise for 12 weeks. It has been really easy all throught the treatment.

After treatment : first 10 days I was tired, but my anxiety was at its highest level because I just did not want to stop such easy treatment, thought it was too soon for me, so my tireness could also have been the result of my stress. Also I have developped during that first month a right thomb pain and my right hand looks like a duck hand right now. But it hurts less however.

Also I had new red tiny dots on my skin every morning (micro hemorrhagia) and new browses too. I got terrified thinking my brain was going to get damaged too if hemorrhagia get there. I saw my doc and she explained the vessels in the brain are not the same (stronger) and there was nothing to worry about.

After about 10 days of tireness, I was feeling really strong and healthy and could take nice walks for hours every day.

Right now (14 weeks after treatment), i's not that easy, because I have to also face a redrawal from benzo stuff and do not know what is from the rx and what is from the redrawal.

The worth for me (but it's over now) has been a skin problem and muscles weekness : I am normally sleem enough, and started to have a big stomach with lot of pain, like if lots of water was in it. I had to buy a special clothing to keep my stomack flat and painless. I was once again terrified because I thought it was ascites. Was crying all day long.

By now : it's all over biggrin no more big stomach nor pain there. Doc said "no ascits" ! wink

You will not to have to go throught all those problems, because all what you have to go through is the sx from after treatment. My system had to support that plus the redrawal which was a lot, but it seems to get better and better every week. "Only" have funny light brown spots on my face, still get those nasty sweatings during the day, and miss sleep, but for those here who have been under Benzo therapy, they know how hard it is to have sleep without it.

So Karen, no panic, it will be much easier for you and do not let yourself beleive it's the virus coming back, as this is not. Wall,drink water, walk every day and you will feel greater and greater !

Warm hugs

Do

-- Edited by ios9 on Wednesday 9th of October 2013 10:13:56 AM

-- Edited by ios9 on Wednesday 9th of October 2013 10:30:16 AM

-- Edited by ios9 on Wednesday 9th of October 2013 10:37:49 AM

-- Edited by ios9 on Wednesday 9th of October 2013 11:14:16 AM

Terry · Senior Member

Hi Karen

Just got back from the walk/jog and feel better already. I bring a bottle of water and put my headphones on with some good tunes and walk for a while and jog for a while. The music makes you relax and the walk wears you out a bit. Just to break up your normal routine .I know over the weekend that the more I sat around the more I thought about it and then the anxiety set in. Six months of drugs don't come out overnight...lol Take care !!

Tig · Admin

Makes you wonder sometimes if there isn't something going on that might support your idea. I've seen so many people experience just what you're going through following treatment. After exposing yourself to all the changes brought on by these medications, the mental stress treatment brings, not only from the medications, but the demands made on all of us to follow the treatment guidelines, and if you're on a trial, all the expectations from Big Pharm on top of that! I fully expect to experience something when I go through it. How many out there have woke up startled after ending treatment because you forgot it was over and you believed you had forgotten to take your meds on time? That happens to me now when I hit my snooze button and when it goes off again I'm worried that I may be late. I bolt out of bed only to realize I'm okay. I think you're feeling something a lot of people do and would recommend you just give yourself some extra time to unwind and decompress from all of the treatment expectations and experiences. It took you a long time to get through it, it's going to take a while to get over it as well. Good luck, and remember that you're DONE! Celebrate that

Terry · Senior Member

Hi Karen

I just finished the turquoise II abbvie trial for 24 weeks and I have had what I call phantom pains around my liver area and my whole abdomen. Generally felt very tired since then and also have some anxiety so I am using a half a tab of a sleeping pill just to aid with that. I expected we would have a bit of withdrawal symptoms because we did have these drugs in our bodies for a long time.

I am just going to go out for a walk around a lake close to me to keep active and also to help wear this off. I am just guessing but I think if we keep well hydrated and exercise a lot we can help our bodies to flush this out a lot faster. Hang in there and stay busy because the longer you sit around the more time you can get fixated on the issues. Take care Terry

Karen · Senior Member

I have been off treatment a week today and I actually feel worse..this is crazy!!!

I am not sleeping-wake in the middle of the night with my hands twitching, tightness in my jaw and spasms in the legs. I have to lay on my hands to settle them down, teeth hurt from clutching and legs just go nuts...I feel anxious, have joint pain and am hyper-cannot seem to relax. HELP..(HEAVY SIGH)!!! Think there is a-kind-of withdrawal from these meds???

Karen · Senior Member

Thanks Terry / Tig56...You are both right...

I guess my expectations where high and I am the most difficult to convince that I have just been down a rocky road and it takes time. Just do not like feeling like this...

-- Edited by Karen on Wednesday 9th of October 2013 02:16:01 AM

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