Post Tx Questions

[R Glass]

These are questions for people that are post tx.
In no way should anyone that has not been through tx, be offended. Your knowledge and input, to this forum, are greatly appreciated.
There are some things that, you have to go through or be at the side of someone that has, before you can completely understand it.


I completed tx about 6 or 7 weeks ago. These are some of the things I am going through. They started about 2 weeks ago.

1. Sleep- I take Ambian and Elavil in the evenings and go to sleep between 9:30-10:30 pm. I sleep hard but wake up every morning around 3:45 am. I don’t have to get up until 5:45. I toss and turn until I can’t anymore and turn the T.V. on.
2. I have severe muscle pain in my legs.
3. By the time I get to work I am a complete mess due to stress and anxiety. It is to the point now that, I take a .05 Xanax and a 7.5 Lortab every morning.
4. Fatigue is getting worse every day. I understand that taking Xanax, Lortab, and waking up at 3:45 could be contributing to the fatigue I am caught in one of those “Damned if you Do, Damned if you Don’t” situations. I don’t think the meds are the Sole Culprit.

If you have been through this, any input or advice will be greatly appreciated.

[R Glass]

. I think I will try that advice weekend after next. It will be a 3-day weekend. Like I said in an earlier post, I tried it a couple of weeks ago and it was a disaster. Maybe the extra day will help.
If not, I have no choice but to get back on the Meds and talk to my Dr. about Trazadone. The company I work for has been very patient with me during tx. If I start digressing and become unproductive, their patience may wear thin.
I believe this has been a very informative thread. Not only for those of us that are just finished tx and don't know what the hell is going on but it also informs those that are txing now and those that are about to start about what they may endure after tx.

[jmjm530]

I'm with FlGuy on the no med approach, at least it's worth a try. Just don't expect miracles and hopefully it will serve you better than the medication approach. You're still freshly weaning from the drugs and this all can take time. I also had the nocturnal leg cramps which did seem to resolve pretty much after awhile. As to the sleep thing, if logistically possible, an afternoon nap -- or perhaps a nap after work, should help and you may find it doesn't at all cut into your evening sleep, just add an hour or two. Post treatment can be even more trying than treatment because when you treat you expect to feel like sh*t but when you stop, you expect to feel marvvveelouss. Doesn't often work like that.

-- Jim

[Tallahassee]

I vote for FLGuy's advice - no drugs and try to establish some regular exercise.

I refused to take any "supplemental" drugs on and off treatment.

While on txx, I feel like I slept about every 2nd - 3rd night.

After the treatment, I went pretty much trough the same symptoms as you (but without taking any drugs).  I gradually re-established my exercise rooting and now I have insomnia only when something really worries me.

In these cases I take Benadryl (anti-allergy) -- but even Benadryl awakens me in ~5 hrs -- so I think, your constant awakening at 3:45 is due to Ambien.

In my book --FlGuy's advice rocks!


All the best!

[mikesimon]

I am not the best person to ask this question because when I open my eyes I am fully awake. I don't ever awaken drowsy. There have been occasional days - maybe 3 since June 2005 when I did oversleep and was a bit drowsy upon wakening. I spoke with a pharmacist just yesterday and he mentioned that Trazadone has been associated with a slight hangover type reaction in some people. I started this drug after a very bad wreck so at that time I wasn't really aware of much. And, I have probably habituated so that I might not recognize a slight handover effect because it's become a feature of my morning. I cannot really say. I would guess that you will know very soon whether Trazadone is having that effect on you. Overall I think it's a pretty good drug but I do know people who have taken it and still had trouble sleeping.
Good luck and sweet dreams.
Mike

[geterdone]

It would seem to me that our metabolism has not found its equilibrium which will come in time hopefully and just as the virus has its hiding places so does the remnants of the drug molecules floating round our organs and intercellular fluids. During treatment I slept maybe 4 to 5 hours a night and did not use any helpers to sleep except an occasional drink when hitting the zombie state at the end of the week. I am 12 weeks post taper and in the first month off the meds slept like a rock for eight to nine hours a night and felt good and still do to an extent but I am having trouble with the insomnia and then the fatigue chasing each other and am having bouts lasting a week or so and then back to sleeping 6 to 7 hours a night. I refrained from using any other medication during tx and here after because of what so many are going through now because the body’s natural metabolism has not been able to stabilize on it own because of the additional meds taken to combat the sx of treatment. Hope things will settle down going forward when weaning off the sleepers if you chose to do so. Your not alone in the post tx arena for I’m having troubles else ware that are popping up even with the taper caper. Hang in there!

jasper

[redrodeo]

Hey man wish me luck I am going to try to get off of these pain pills this weekend. Just say a prayer for me.
I just went for a ride on my bike a few minutes ago. Didn't feel too stable so I came home.
Red

[R Glass]

Thanks for all the responses, suggestions, and advice. They are kind of “Bitter Sweet.” I am sorry that so many of us are going (or went) through this but on the other hand, it is good to know this is somewhat normal.
I had all but convinced myself that I made a big mistake in doing tx.
I feel it is too early for me to get off the meds but I will when I think I am ready. I tried weekend before last and by Sunday, it was like I was back on tx.

Mike-does the Trazadone keep you drowsy or hard to awaken?

Thanks again for all the replies, R. Glass

[mikesimon]

You might ask your doctor about Trazadone. I have been an insomniac for a long long time and I used to take only Ambien. When I was hospitalized for my bike wreck they put me on Trazadone. The doctors felt that because I suffered significant head trauma Trazadone was a better drug than Ambien. I slept longer than I have with any other drug and it is still effective at the same dose 3 years later. I take it an hour or two before I go to bed. It's just a suggestion but don't take it too seriously because I am not a real doctor. Mike

[Proactive]

on no drugs except a pee pill and 3 ibuprophen(?) first thing in the AM...

[Proactive]

15 weeks post 72 weeks of tx here. Short of lower joint and muscle aching, which I almost am beginning to believe is getting better (had it prior to tx also), I'm not doing to badly.
Scalp and skin have stopped flaking and shedding-skin back to normal. Actually sporting a fairly good working mans tan (sock tanlines(g))
Hair has stopped falling out and dryness has abated.
Have finally begun to lose some of my tx accumulated fat.
Muscle tone is very slowly returning. (still a bit pudgy around the gut though- nother 5 lbs. to drop)
Didn't sleep past 4:30am prior to tx and still don't! (g)
Fog is gone, but tx did not help my spelling at all!
Blood counts all back to normal.

So net, net if I am fortunate enough to clear the virus for good, I ain't complain'in.....'cept for the fact that I don't seem to be able to wean myself from this forum ! (lol!)
PS: even worked 9 1/2 hrs today..shovel'in, rak'in,seed'in, and spreading mulch hay...Just finished a job shoring up a building and replaceing 50 ft of it's foundation wall..so we are getting back in the swing of things..;^)
Pro

[meki]

"""1. Sleep- I take Ambian and Elavil in the evenings and go to sleep between 9:30-10:30 pm. I sleep hard but wake up every morning around 3:45 am. I don’t have to get up until 5:45. I toss and turn until I can’t anymore and turn the T.V. on. """"


Insomnia was and is so very common in my life since HCV... I'm just used to it. I sleep when I can - I don't put pressure on myself anymore... Instead I keep myself busy... I get up out of bed and have things to do... Reading, Puzzles, Artwork, Poetry, Computer, Games, etc. I just gave up worrying about it. Ambien and other things just don't help me to stay asleep - and I'll go days or weeks with only 2 - 4 hours a night... Then I'll crash hard one day or two days.

I have tried cutting things out of my diet --- including caffiene... etc. It really doesn't matter. I'm either WIDE FREAKING AWAKE --- or SLEEPY ZOMBIE... It doesn't matter what I do... So I've learned to live within those parameters - and stopped judging myself against others --- or what I used to perceive as "normal".




"""""2. I have severe muscle pain in my legs. """""

Bone pain, Muscle Pain, Connective Tissue pain became a MAJOR problem for me both during TX and Post TX.

Some people no longer have pain after TX.

Unfortunately it's looking like I'll have pain for quite some time due to Neuropathy issues.

Please check with your GP on ways to deal with this pain... Make sure your CBCs are looking good - and that you're platelets aren't down too far.

IF everything is looking good - but you're having severe pain --- have your doctor prescribe you some sort of pain relief that is liver friendly ----  make sure you talk to the pharmacist --- who will know better than your doctor if it is liver friendly... Those guys have saved me more than once.

Keep an eye on the pain levels --- and watch for drugs that you "LIKE"... because of the "high"... find ones that take away the pain without affecting your clarity --- otherwise you may have more issues with brain fog later on down the line.



"""""3. By the time I get to work I am a complete mess due to stress and anxiety. It is to the point now that, I take a .05 Xanax and a 7.5 Lortab every morning. """""


Not unusual at all. Lorazepam is fast acting --- and Xanax works just fine.

Remember - face yourself in the mirror - look yourself in the eyes - and tell yourself -- You're gonna make it through this day come hell or high water --- and nothing is going to stand in your way.

Watch out for panic attacks --- they happen.

But I believe IF YOU KNOW THAT THEY are going to happen --- when they do happen you can deal with them internally ---- so you can relax much faster.

Hang on --- cause while this isn't fun -- YOU CAN HANDLE IT.

"""""4. Fatigue is getting worse every day. I understand that taking Xanax, Lortab, and waking up at 3:45 could be contributing to the fatigue I am caught in one of those “Damned if you Do, Damned if you Don’t” situations. I don’t think the meds are the Sole Culprit. """"



Hang on --- Journal everything - post it notes --- write down foods, thoughts, feelings, experiences, sides, etc.  --- remember this TREATMENT is CHEMOTHERAPY.

It's hard on your body - your mind and your soul...

It changes you.

It makes you a stronger person

It hopefully kills the virus.

BUT --- while it is killing the virus - IN MY OPINION -- it is changing your DNA -- it is changing your liver - it is changing your chemistry --- and it is making things different in your body.

Some folks weather the changes like nothing is going on... Others --- well they have some issues and serious side effects.

HALF OF THE THINGS THAT YOU ARE GOING TO DEAL WITH ARE GOING TO HAVE A MENTAL IMPACT ON YOU...

Prepare yourself and keep yourself in a decent frame of mind --- be strong and you'll do better than letting yourself freak out or fall apart.

OK ?

These are just my thoughts on this stuff --- so take what you can use... and do what you can with it...

HUGS!!!

Meki

[redrodeo]

Man I thought I was reading my own story. Even down to weeks post tx. My last shot was May 11. For sleep I take either Ambien or Sonata. Of course I've become tolerant to it. If I take 2 Ambien at once I have blackouts, which are very scary. But I have the same
severe muscle and joint pain as you have described. But my legs are swollen also. All thru tx I took narcotic pain pills now I know I am addicted to them. I am going to try to get off of them this weekend. As for the fatigue. I slept all day yesterday. In the past I never was a napper. I sure am glad you shared whats going on. I felt very alone. Next week I am going to start a series of hyperbaric chamber treatments. Hopefully it will help I'll keep you posted. Today I got the results of my bld tests last wk and they look very
good.
     Red

[mar148]

I am off treatment for 15 weeks.  I have begun mild exercise and stretching and am rebuilding my strength.  This makes me more tired before bed.  I would make sure that you are relaxing before bed with reading, tv... whatever destesses you.  I also take sleep time tea before bed which I find comforting.  I take Tylenol PM before bed during times I can't sleep and this knocks me out.  I don't take anything else.  I am now off the anti depressants.  

I find for me, exercise helps with stress and sleep.  I don't know if this will help, but I hope so.  Maryellen

[nygirl7]

I found the same thing - it helps you fall asleep but then you wake up.  I'm like 18 months post now and STILL wake up all night long.  I get severe muscle cramps in the calves of my legs if I stretch wrong - they wake me up too. I'm not AS tired as I used to be (i cut out the paxill and xanax and pain killers) that helped a LOT.

But still I wish I could take a nap at lunchtime and I could fall asleep right then in one minute...it's just the night time that's a real pain in the you know what....then I would PAY to go to sleep I swear!

Debby

[FlGuy]

My expereince with ambien is that it will put you to sleep, but not keep you at sleep. I found that 5 hours was about it.  Now that tx is over and most of the meds are out of you, I'd suggest trying to go without meds at all for a few weeks.  Instead, get some exerceise (even if only long walks in the evening), stay away from stimulating food and drink after 6pm.  It was a few weeks after tx ended that leg cramps let up, exercise should help some.  Try to get into a rhythm of life.  You may only require 6-7 hours sleep.  Stay busy.  Tx was a grind, getting your life back takes some effort too.