Thank you for your insight and personal experience, it good to hear the Gilead company is willing to give real information regarding there drugs.
Hopefully your issues will resolve over time, please keep us informed. We are all interested in your healing path.
matt
coolheat said
Sep 1, 2015
Well........I would like also to say that I am feeling better than I am. I think Gracie mentioned on another thead that when she walked across the floor her feet were poping and snapping. Mine are too, fingers too, and I have pain in my hip and top of the femur bone really bad. Feels like there is an electrical plug going right into it and sending all electrical impulses into me in that area. Like shocks of electricity. Tough when I get up for awhile and then lets up for about 5-6 hrs then comes back with a vengeance. So sorry to be complaining, that's why I have been quiet, then I read your post Steven and others. My blood pressure went back up pretty high and my ankles and legs started swelling again.
Have a weird pressure between ear and mandible, so went to reg. dr yesterday and they want to do an MRI. Also my lymph glands were swelling over the wkend. I am listing some of these as I am 9 days post harvoni. Called Gilead today and ask about the length of time for the harvoni to leave system and they said because of the half life, and I was on tx for 3 mo., it will take 2 1/2 wks to get the majority of the drug processed through. Then it will be slowly leaving for months, but it will be a almost an undetectable amt.. I also ask if I could take any vitamins? They oked folic acid, B 12, and D3. They said still not get near calcium, magnesium, or aluminum. Made me wonder if my 1 % milk is ok, forgot to ask. Also have had a different type of headache behind L ear and same ear that is tender. I am documenting what changes I feeling, would do it all over again, my prognosis was harvoni either works or I too am on the list for liver transplant. Fibrosis 3-4. Still feel better in many ways but also am almost dragging one leg. Was suppose to start working out this week with my trainer again. Will go in and set appt. and do light walking or bike. Have try to get BP back down and move my legs. Long post here, didn't want to complain, but here is whats been going on with me post tx. Marsha
-- Edited by coolheat on Wednesday 2nd of September 2015 02:20:05 AM
Gracie said
Sep 1, 2015
I dreamed last night that I got a huge tattoo on my back that said FAMILY in huge ugly letters! I was so mortified with myself. Then I clued in in my dream, that it was a dream, as there was no pain when I was getting it! When I woke up I was relieved and happy for quite awhile after realizing it had been a dream.. Lol.
I also noticed on the nights that I sleep very deeply that I am tired the next day. These effects are intermittent and come and go. Still haven't missed any work, or exercise class or events because of treatment so it's all good.
ps - hand exercises really work when my hands get achy...
S1jiujitsu said
Sep 1, 2015
I also have bad/ crazy dreams. I did at some point before treatment, during treatment, and now after. I'm waiting to wake up one day and be okay. It's frustrating. But I'm 10 weeks post treatment and undetectable . Maybe when reality sets in I'll quit tripping and these dreams will stop
skewedButNotBroken said
Sep 1, 2015
I have had bad dreams every night since I started treatment. I'm about 9 months post treatment and I believe that the drugs have permanently altered our bodies. Only a naive person would believe that the pathways that these drugs block are only used by the liver. Once the body can no longer use these pathways then it will find another path to conduct life sustaining functions. So we may be free of hep c but now we have an altered mind, body, soul and spirit.
Cheers,
coolheat said
Aug 27, 2015
Wow Miss Pe-Pod, thanks, the pain is still gone. Guess it was the Harvoni. Like totally gone today too. Love your description of a serving of fruit from dairy queen. I craved sweets. That is leaving also. 13 lbs later. Today, have felt like my vision is sharper. Its all so amazing and full of hope. I know someone else who just started, and told them about the page. Hope they find their way to the train station. This has made a big difference for me in what could have been a lonely journey.
4th day post tx. That pain in the low back/sacrum area is still gone. For a couple of years and the beginning of this year I had bad pain in there. Thinking now that, that might have been from the hep c attacking me. There is nothing there pain wise. Still have a little in the hips by evening. What a blessing.
-- Edited by coolheat on Friday 28th of August 2015 01:03:42 AM
Penelope PePod said
Aug 26, 2015
Marsha - glad last night was better for you. I've had a few bad dreams since starting tx. Just last night I dreamed I was working in a bakery, taking care of customers, and all the while there were mice running around by my feet eating all the fallen crumbs. I felt unsettled all day. Yuk!
Glad to hear your lower back pain has subsided - I hope you continue to feel relief. Many people here have posted that their aches and pains seem to have gotten better since starting tx, myself included. Now that's a nice side effect!
Penny
coolheat said
Aug 26, 2015
Much better dreams last night. This is my 3rd day post, got out of bed and for the first time since starting tx, my constant pain at the sacrum-low back is gone. We'll see how long that last though the day, and hopefully its gone. I felt so strange not to have it.
It feels so Wonderful not to have it. I'm not rushing it Matt, just an observation.
Thank You! Marsha
(Its been 5 hrs, still no pain.... : )
-- Edited by coolheat on Wednesday 26th of August 2015 08:49:09 PM
Cinnamon Girl said
Aug 26, 2015
Thanks Marsha, glad you`ve been enjoying my roses!! The season is almost over but it`s been a good year for them..
I find being out in the garden is very good for stress relief... doing things we find relaxing and uplifting is always a boost to the spirits.
Take care, and spend some time in your happy place, wherever that may be!
Tig said
Aug 25, 2015
Hi Marsha,
I have heard others mention the effect these medications had on their dreams. I recall most saying it was an intermittent problem, not something that recurred regularly. As Jill said, give yourself time to recover, physically and mentally. It won't be long and you'll be having sweet dreams again. Do your best to retire at night with good thoughts and the confidence of the SVR in your future. You got this!!
coolheat said
Aug 25, 2015
Thanks Jill, you're always so comforting. I will chalk it up to nightmare. Take care, always love the flowers you post. Must be from your garden, you tend them with love and comfort.
Cinnamon Girl said
Aug 25, 2015
Hi Marsha, sorry to hear about your horrible dream... yes, I think it`s all part of the anxiety about your post tx results that`s being played out in your subconscious even when you`re not aware of it. Even though you`ve finished your treatment it`s bound to take a while for your body and mind to adjust after being on such strong medication for the last 12 weeks.
Give yourself time to recover now, you`ve done very well on treatment and have every reason to be positive!
Good to see you here in `Post Treatment`!!
coolheat said
Aug 25, 2015
Everything has been and is so positive. Had horrible dream that liver relapsed, won't go into details. Must be that piece of fear that rests, waiting, to strike. Other shoes is going to drop stuff. Dreams all night, woke up a lot, tossed and turned, but the one that woke me up was really bad. Is this like some of the energy of the waiting now for the post tx blood test anxiety? I am good now, but it startled me. Thanks, any input appreciated. Marsha
Hey Marsha
Thank you for your insight and personal experience, it good to hear the Gilead company is willing to give real information regarding there drugs.
Hopefully your issues will resolve over time, please keep us informed. We are all interested in your healing path.
matt
Well........I would like also to say that I am feeling better than I am. I think Gracie mentioned on another thead that when she walked across the floor her feet were poping and snapping. Mine are too, fingers too, and I have pain in my hip and top of the femur bone really bad. Feels like there is an electrical plug going right into it and sending all electrical impulses into me in that area. Like shocks of electricity. Tough when I get up for awhile and then lets up for about 5-6 hrs then comes back with a vengeance. So sorry to be complaining, that's why I have been quiet, then I read your post Steven and others. My blood pressure went back up pretty high and my ankles and legs started swelling again.
Have a weird pressure between ear and mandible, so went to reg. dr yesterday and they want to do an MRI. Also my lymph glands were swelling over the wkend. I am listing some of these as I am 9 days post harvoni. Called Gilead today and ask about the length of time for the harvoni to leave system and they said because of the half life, and I was on tx for 3 mo., it will take 2 1/2 wks to get the majority of the drug processed through. Then it will be slowly leaving for months, but it will be a almost an undetectable amt.. I also ask if I could take any vitamins? They oked folic acid, B 12, and D3. They said still not get near calcium, magnesium, or aluminum. Made me wonder if my 1 % milk is ok, forgot to ask. Also have had a different type of headache behind L ear and same ear that is tender. I am documenting what changes I feeling, would do it all over again, my prognosis was harvoni either works or I too am on the list for liver transplant. Fibrosis 3-4. Still feel better in many ways but also am almost dragging one leg. Was suppose to start working out this week with my trainer again. Will go in and set appt. and do light walking or bike. Have try to get BP back down and move my legs. Long post here, didn't want to complain, but here is whats been going on with me post tx. Marsha
-- Edited by coolheat on Wednesday 2nd of September 2015 02:20:05 AM
I dreamed last night that I got a huge tattoo on my back that said FAMILY in huge ugly letters! I was so mortified with myself. Then I clued in in my dream, that it was a dream, as there was no pain when I was getting it! When I woke up I was relieved and happy for quite awhile after realizing it had been a dream.. Lol.
I also noticed on the nights that I sleep very deeply that I am tired the next day. These effects are intermittent and come and go. Still haven't missed any work, or exercise class or events because of treatment so it's all good.
ps - hand exercises really work when my hands get achy...
I have had bad dreams every night since I started treatment. I'm about 9 months post treatment and I believe that the drugs have permanently altered our bodies. Only a naive person would believe that the pathways that these drugs block are only used by the liver. Once the body can no longer use these pathways then it will find another path to conduct life sustaining functions. So we may be free of hep c but now we have an altered mind, body, soul and spirit.
Cheers,
Wow Miss Pe-Pod, thanks, the pain is still gone. Guess it was the Harvoni. Like totally gone today too. Love your description of a serving of fruit from dairy queen. I craved sweets. That is leaving also. 13 lbs later. Today, have felt like my vision is sharper. Its all so amazing and full of hope. I know someone else who just started, and told them about the page. Hope they find their way to the train station. This has made a big difference for me in what could have been a lonely journey.
4th day post tx. That pain in the low back/sacrum area is still gone. For a couple of years and the beginning of this year I had bad pain in there. Thinking now that, that might have been from the hep c attacking me. There is nothing there pain wise. Still have a little in the hips by evening. What a blessing.
-- Edited by coolheat on Friday 28th of August 2015 01:03:42 AM
Marsha - glad last night was better for you. I've had a few bad dreams since starting tx. Just last night I dreamed I was working in a bakery, taking care of customers, and all the while there were mice running around by my feet eating all the fallen crumbs. I felt unsettled all day. Yuk!
Glad to hear your lower back pain has subsided - I hope you continue to feel relief. Many people here have posted that their aches and pains seem to have gotten better since starting tx, myself included. Now that's a nice side effect!
Penny
Much better dreams last night. This is my 3rd day post, got out of bed and for the first time since starting tx, my constant pain at the sacrum-low back is gone. We'll see how long that last though the day, and hopefully its gone. I felt so strange not to have it.
It feels so Wonderful not to have it. I'm not rushing it Matt, just an observation.
Thank You! Marsha
(Its been 5 hrs, still no pain.... : )
-- Edited by coolheat on Wednesday 26th of August 2015 08:49:09 PM
Thanks Marsha, glad you`ve been enjoying my roses!! The season is almost over but it`s been a good year for them..
I find being out in the garden is very good for stress relief... doing things we find relaxing and uplifting is always a boost to the spirits.
Take care, and spend some time in your happy place, wherever that may be!
Hi Marsha,
I have heard others mention the effect these medications had on their dreams. I recall most saying it was an intermittent problem, not something that recurred regularly. As Jill said, give yourself time to recover, physically and mentally. It won't be long and you'll be having sweet dreams again. Do your best to retire at night with good thoughts and the confidence of the SVR in your future. You got this!!
Thanks Jill, you're always so comforting. I will chalk it up to nightmare. Take care, always love the flowers you post. Must be from your garden, you tend them with love and comfort.
Hi Marsha, sorry to hear about your horrible dream... yes, I think it`s all part of the anxiety about your post tx results that`s being played out in your subconscious even when you`re not aware of it. Even though you`ve finished your treatment it`s bound to take a while for your body and mind to adjust after being on such strong medication for the last 12 weeks.
Give yourself time to recover now, you`ve done very well on treatment and have every reason to be positive!
Good to see you here in `Post Treatment`!!
Everything has been and is so positive. Had horrible dream that liver relapsed, won't go into details. Must be that piece of fear that rests, waiting, to strike. Other shoes is going to drop stuff. Dreams all night, woke up a lot, tossed and turned, but the one that woke me up was really bad. Is this like some of the energy of the waiting now for the post tx blood test anxiety? I am good now, but it startled me. Thanks, any input appreciated. Marsha