Hepatitis Forums
Off Topic Forums => Off Topic Forum => Topic started by: moto on June 12, 2015, 03:27:04 am
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Another restless night got me thinking, wouldn't it be great if insomnia hit me during the daytime and fatigue came on at night.
If it did, would I just think I was having a good day?
Oh well no fatigue tonight...
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Hey Moto, What time are you taking your pill?
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I take my pill about 8 am. Just finished 4 months 2 more months to go.
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you could listen to COAST TO COAST radio program in most markets from 1am to 5am. Their variety of thoughtful and sometimes strange topics are usually quite interesting.
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I have HepC for about 40 years now. Found out about 10 years ago. Have not been able to sleep through the night for 30 years. It is 2:24 am now and I am so tired - tired all day - tired all night.
Today I pick up a prescription for 16 weeks of Harvoni tx. Hope by the end of it I will be able to sleep like a normal person again. It is very tough to not have regular sleep. Hope this changes for you soon.
:)
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I've had it about 40 years as well. Never had so much trouble sleeping until I got on the harvoni. I've almost finished 6 months (19 days to go, but who's counting?) And have had a hard time with it. Have also been on other drugs for lupus, just stopped that and side effects have subsided. Will restart if needed after finishing harvoni. On the plus side hep c has been undetected since 8 week lab work. Everybody's different, some have a worse time of it than others. Hope it goes well for you and you return to normal sleep pattern soon.
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Apparently drug interaction affects how Harvoni affects a person. I have been coping with fatigue, insomnia, headaches, muscle/ joint pain, nausea, appetite problems, ascites and more for years so I should not notice much of a difference when the side effects come on ! ha !ha! At least you are at the end of treatment and will recover now.
I am Canadian. Can't find a hep C forum for us so I do not know what viral loads are. I have never had a doctor speak of these I things to me plus we are on the metric system so the measurements are alien to me. Thought I would join this forum to gain some knowledge and experience (albeit vicariously) from all you folk. It is heartening to know that so many are cured or on their way. Good luck to you.
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I am Canadian. Can't find a hep C forum for us so I do not know what viral loads are. I have never had a doctor speak of these I things to me plus we are on the metric system so the measurements are alien to me. Thought I would join this forum to gain some knowledge and experience (albeit vicariously) from all you folk. It is heartening to know that so many are cured or on their way. Good luck to you.
Hi Emmana, and welcome to the forums! :)
I am in Canada too (currently participating in a 12-week clinical trial of Harvoni+Ribavirin, which is curing me). There are actually a lot of Canadians on these particular forums.
Many if not most US test results are also in metric these days.
As for viral load, it is usually measured in IU/mL (International Units per millilitre of blood). It is a good idea to request hard copy printouts of your lab results, or access them online from home, if you can. Most people monitor their own condition and progress pretty closely with this. It is not all that useful to "leave it to the doctors".
Best of luck to you!
Kim :)
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Thanks Kim.
I just returned from downtown doctor. Whew. So tired and sore today. I will be starting Harvoni and Ribavirin on July 27 th for 16 weeks, maybe longer for I have cirrhosis of the liver from 4 decades of inflammation. Who knew? I am a total non alcohol drinker because I don't like it. Also ate with proper nutrition in mind else I probably would not be here. I will have to talk with my md about this as the specialist is far away and it is a taxing journey for me in my current state. I have EHealth App in my iPhone so it should show in there? I really don't know how to keep track. I have not been told of thses things. In fact my doctors did not tell me about this either. I was out for a walk and a coffee last winter above the river. There was a homeless man sitting up there looking a bit forlorn. I gave him my coffee and we talked for about an hour. He told me he was cured of HepC. I told him I have it too. He told me about dr John Farley in downtown Vancouer and said I should call him. I did and about 6 months later I am to start treatment. My life has been "on hold" for 10 years now. If I had not talked with him and shared my coffee I would still be waiting to die. Didn't get his name so I cannot thank him. He was like an angel to me that cold blustery winter day. never saw him again. It truly is amazing how life unfolds. If I was arrogant and deigned not to speak to this man I would not be where I am now. Truly a miracle. Life is grand.
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Amazing and beautiful story, Emmana, about your encounter with the homeless man. Thank you for sharing.
kim
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I have EHealth App in my iPhone so it should show in there? I really don't know how to keep track. I have not been told of thses things. In fact my doctors did not tell me about this either.
Doctors rarely volunteer to give patients copies of their lab results, in my experience. You need to ask for it directly and often insist. Some doctors are resistant even though it is your right to have copies of your medical records and lab results. Although that resistance is less common now than it was 10-20 years ago.
You cannot rely solely on your doctor to tell you what you need to know. You will need to become your own doctor.
Yes, I can view and download my results via myehealth.ca but only if I go to a lab tied into my ehealth. The lab being used in this clinical trial I am in is not part of the my ehealth system. And so the trial nurse hands me or emails me the 3 pages of lab results I am interested in (out of 30 pages in total - lots of lab work done during a clinical trial).
cheers,
kim
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Thanks. :)I will try to work it out but cannot worry about it. I have cataract surgery in 3 days and start tx in 6 days whilst fighting a bladder infection and crazy blood sugar highs and lows. I am 65 and have been unable to function normally for. 6 years now. So really have to stay in home or close to it. Had to give up all activities. Ouch - the cramps are starting. Have to go.
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Good luck with it all Emmana! :)
kim
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Today starts my 7 th week. Last week my insomnia became unmanageable. I had managed well with melatonin and trazodone before then. They have stopped working. I think the other side effects speak louder when I don't sleep. I am just hoping the insomnia resolves when treatment is over. I am one of those people who become emotionally and mentally unbalanced with lack of sleep making everyday issues more challenging.
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Today starts my 7 th week. Last week my insomnia became unmanageable. I had managed well with melatonin and trazodone before then. They have stopped working.
lolacme: remind me what time of day or night you are taking your harvoni and your ribavirin. i found harvoni very energizing and had to take it in mornings. an evening schedule for harvoni would not have worked for me. and ribavirin definitely kept me awake when i would take my 2nd dose in the evenings between 7-9 pm. when I moved my 2nd dose up to 4 pm (at nurse's suggestion), my insomnia problems got much better.
Also, if i take B-complex vitamin in afternoon or evening, it keeps me awake (from the choline, I think). So I take that in morning too.
I am taking my harvoni+3 riba at 9 am
and my additional 2 riba at 4 pm
kim
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I take my ribi at 0700 and around 3 pm and my Harvoni at noon
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Keyed lengthy reply and lost it so I will just say "thanks" for all the info. I appreciate all your input. Start drug therapy this mon July 27. I am thinking it can't be worse than the past 6 years ! ;D
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EOT! Took my last pill (harvoni) this morning! Have been on for 24 weeks, undetected at 8 weeks. Hoping to start feeling better as the residual drug clears out, it has not been an easy ride for me. Should hear from my rheumatoligist in the next few day as to what if any effect the treatment had on my lupus, he's optimistic as my skin has cleared (had a bad rash that looked like a chemical burn). Guess I won't be considered hep free until 6 months post treatment but am happy just not having to take anymore Harvoni.
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Great news moto. congrats & good luck.
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moto, yes, great news! I'm someone else with lupus who's been taking Harvoni. When the nephrologist who was monitoring my lupus (because kidney damage was the most serious thing lupus had caused) learned that I'd been diagnosed with Hep C, he said that finally some things he hadn't been able to figure out made sense. So maybe you'll find that getting rid of Hep C will clear up a lot more than just your skin! After all, now your overactive, overanxious immune system isn't being constantly bamboozled by a retrovirus that keeps changing its tactics.