Aa
Post treatment things, I know I'm repeating myself
I put this in a post lower down here in a reply to Sandy, but it's post treatment issues still:
Since last tx, I've still been troubled with being unable to sleep w/o sleep meds (currently Ambien-CR,), muscle pain, slight depression, low thyroid(not totally hypo, but enough to take low dose Synthroid), hot flashes(even though I was already on HRT), skin problems, weight gain, sinus/ear infections, oh yea and my last blood sugar was going up. I keep on wondering how much of this is normal age related problems and how much of it is due to all the tx's. I know Type II diabetes does run in my family anyway. My sister who doesn't have HepC, is hypothyroid. And I have been post hysterectomy for the past 15 yrs, even though I was maintained fine on HRT until this last round of tx, now it feels like my estrogen-only, is not working. Sigh... it's always something. I just want to be feeling right again. I am post-TX 7 mon., almost 8 mon. I'm 45. Feel like 65!! I feel like I'm thirsty all the time, but my Int.Med doctor tells me to stop drinking so much water. I can't win! Susan
Since last tx, I've still been troubled with being unable to sleep w/o sleep meds (currently Ambien-CR,), muscle pain, slight depression, low thyroid(not totally hypo, but enough to take low dose Synthroid), hot flashes(even though I was already on HRT), skin problems, weight gain, sinus/ear infections, oh yea and my last blood sugar was going up. I keep on wondering how much of this is normal age related problems and how much of it is due to all the tx's. I know Type II diabetes does run in my family anyway. My sister who doesn't have HepC, is hypothyroid. And I have been post hysterectomy for the past 15 yrs, even though I was maintained fine on HRT until this last round of tx, now it feels like my estrogen-only, is not working. Sigh... it's always something. I just want to be feeling right again. I am post-TX 7 mon., almost 8 mon. I'm 45. Feel like 65!! I feel like I'm thirsty all the time, but my Int.Med doctor tells me to stop drinking so much water. I can't win! Susan
Also, I've only done 7-1/2 rounds, of treatment. I know it sounds like it might as well had been 10, but nope, not 10. I've tried the natural stuff and for me, it made me about as sick as the prescription stuff, so I said for myself, that I'll stick with traditional medicine because at least there, it's regulated better and it's at least in part, covered by insurance. My insurance pays nothing on natural homeopathic, herbal stuff. The milk thistle aggravate my allergies/asthma (treatment didn't). The holistic special teas, made me so sick and have liver pain, so that was a bust as well. I can drink green tea, so I'll stick with that. The juice fast thing, made my stomach hurt about as much as the special teas did, I felt like I was going to barf from the juicing thing. Everybody has to do what they feel comfortable with and what works for them. I've tried to get off of Ambien and I don't sleep at all when I don't take it. I was getting horrible nightmares when I stopped taking it. I'm on the Ambien-CR. It took me a long time to get it approved on the insurance, for the longest time, it was all out of pocket. I don't have cirrhosis yet, but Dr. J thinks I'm leaning on the edge of it. I've got the bridging fibrosis. I'm debating with myself on whether or not I will participate in any clinical trial that comes up. I will definitely need a sign from the Lord that it's in my best interest before I'm going to want to attempt it. I also am not interested in doing any type of trial which uses a placebo. I think it would be a waste of time and effort for me to attempt that.
Susan
Susan
Sandy,
It's not Dr. J. that's questioning my water drinking, but my internal medicine (general doc.). Dr. J has never said a word about my water drinking. It's my dermatologist that did the skin biopsy and came up with that diagnosis about the skin thing, (T.M.E.P.)
Susan
It's not Dr. J. that's questioning my water drinking, but my internal medicine (general doc.). Dr. J has never said a word about my water drinking. It's my dermatologist that did the skin biopsy and came up with that diagnosis about the skin thing, (T.M.E.P.)
Susan
I DO NOT KNOW what is going on with this new format, but I answered you this morning, checking to make sure that the answer regarding the water deal was there, and now it has disappeared? This has happened more than once. Is anyone else having this problem?
Sandy
Sandy
I DO NOT KNOW what is going on with this new format, but I answered you this morning, checking to make sure that the answer regarding the water deal was there, and now it has disappeared? This has happened more than once. Is anyone else having this problem?
Sandy
Sandy
Is Dr. J. telling you not to drink to much water? This doesn't sound like him? I have lost a taste for anything else but water & I know that I am not drinking enough as I am not quite as thirsty as I was on therapy. Also, I noticed that you are obviously getting different things checked on your labs?I usually have the CBC w/Diff and Liver Function Profile(fasting), at least every 2 mths. I am going back to Shands for all symptoms now and Dr. J. is making all appts., needed. We both feel like going to many different Doctors is not the answer. Then no-one has a completed profile on you. I will still see Dr. J., but Shands for everything else. I too have occassional nite sweats, but mostly anything that requires any mental intensive thought processing brings an enormous amount of perspiration, also physical activity, as little as washing dishes or trying to cook. Forget drying to dry off after a shower, it takes me at least 30 min. to reach this and is very frustrating. I have not even attempted to sleep without an aide. I take Remeril and it works very well for me. I originally was on the Ambien kick and found myself doing strange things and not even remembering.(like eating in the middle of the night, carrying on conversations with my Granddaughter that I didn't even remember doing.) I found that it gave you that fast 30 min. sleep and then you awoke to no telling what. I actually have my name on the lawsuit against them, as I was even driving in the middle of the night. My mouth is still somewhat dry and I have a tremendous amount of mucous problems, even when drinking water. My eyes have gotten much worse and my feet and lower legs remain cold all the time,(Cryo) but I do have good pulses in them. Just another strange thing from the meds. Prior to therapy I was always without shoes. You know the rest, Neuropathy, Spondyliolisthesis, multiple levels of degeneration in my spine, torn miniscus on my left knee, on and on. I suppose this was from my many falls while on therapy (14). I think God everyday that I haven't broken a hip or something. It's all that additional padding I have on me!!! I too am gaining weight and never lost anything on therapy, just an incline every mth. It's hard to piece all of this together, with everyone having different side affects. But, in my mind, I am positive that this is all interferon related.
How did you survive 10 rds. of therapy and why did you pursue? It's over for me, unless a non-invasive treatment becomes available. It has robbed me of 4 yrs. of my life and turned my world upside down. I just had an ultrasound of my liver and their has been no change. I am a 1B, stage 3, grade 4, with early signs of cirrhosis, carrying 30 yrs., age 62. So, I have some age on you, but I WAS a very fit, active, happy, sociable, interactive, working productive Director until this happened.
Sorry for the doom & gloom and it is not meant to discourage anyone from treatment because it has obviously helped many people rid themselve of this terrible disease. It just didn't work for me.
I am taking water therapy for my legs, trying to establish more balance and I think this is going to help, I also have P/T, once a week.
Keep me posted on everything that is going on with you-Everyone- and oh, I almost forgot I am going to try some Homeopathic aides which I have done alot of research on. If interferons didn't completely finish me off, I don't think these will hurt me!!
I hope everyone has a good day and I am going to try and go grocery shopping. WHOOPEE!!!
Sandy
How did you survive 10 rds. of therapy and why did you pursue? It's over for me, unless a non-invasive treatment becomes available. It has robbed me of 4 yrs. of my life and turned my world upside down. I just had an ultrasound of my liver and their has been no change. I am a 1B, stage 3, grade 4, with early signs of cirrhosis, carrying 30 yrs., age 62. So, I have some age on you, but I WAS a very fit, active, happy, sociable, interactive, working productive Director until this happened.
Sorry for the doom & gloom and it is not meant to discourage anyone from treatment because it has obviously helped many people rid themselve of this terrible disease. It just didn't work for me.
I am taking water therapy for my legs, trying to establish more balance and I think this is going to help, I also have P/T, once a week.
Keep me posted on everything that is going on with you-Everyone- and oh, I almost forgot I am going to try some Homeopathic aides which I have done alot of research on. If interferons didn't completely finish me off, I don't think these will hurt me!!
I hope everyone has a good day and I am going to try and go grocery shopping. WHOOPEE!!!
Sandy
Poor Susan. To feel bad and thirsty and get told not to drink so much water just isn't right! I don't think you're repeating since I didn't read the first post. Or if I did I don't remember!
I do feel bad for you and Nygirl and any one who has treated more than me, which is just about everybody.
I feel old too, but there's a reason for that, I AM old.
I do feel bad for you and Nygirl and any one who has treated more than me, which is just about everybody.
I feel old too, but there's a reason for that, I AM old.
Susan
You know I feel like no matter WHAT you do the doctor is going to tell you opposite! Unless you are drinking gallons of water a day I've never heard of saying not to drink so much (unless he figures that it's over flushing your body or something like that?)
Do the Gatorade - you are right. That should iron it out and shut him up! I ALWAYS have a huge bottlee of water at the doctors (hell I have them EVERYWHERE nightstands, bureaus...why I feel like that movie with Mel Gibson SIGNS remember that with the little girl with all the glasses of water everywhere?) and he's never once said not to drink so much.
I guess it's better that he tells you to drink less rather than more...after a time that gets downright PAINFUL I mean how much can a human being pee?
hee hee
Just trying to make you smile cause I KNOW you know what I mean there!
Hey us 1A/1Bs...we got it hard - we deserve doctors to treat us like the gold that we are!
You know I feel like no matter WHAT you do the doctor is going to tell you opposite! Unless you are drinking gallons of water a day I've never heard of saying not to drink so much (unless he figures that it's over flushing your body or something like that?)
Do the Gatorade - you are right. That should iron it out and shut him up! I ALWAYS have a huge bottlee of water at the doctors (hell I have them EVERYWHERE nightstands, bureaus...why I feel like that movie with Mel Gibson SIGNS remember that with the little girl with all the glasses of water everywhere?) and he's never once said not to drink so much.
I guess it's better that he tells you to drink less rather than more...after a time that gets downright PAINFUL I mean how much can a human being pee?
hee hee
Just trying to make you smile cause I KNOW you know what I mean there!
Hey us 1A/1Bs...we got it hard - we deserve doctors to treat us like the gold that we are!
NYG- I've been off of treatment now for 7-1/2 mon.
I was told that my sodium was low. This is like the 3rd time on my lab report that it was low. But it's not THAT LOW, in my opinion. I think he's making a big issue out of a little thing. My calcium, potassium, B vitamins and that stuff are all fine, perfectly normal. My choloride is slightly low, but not THAT LOW. I'm just going to try to drink some Gatorade in there to add back in some sodium and see if that will shut him up about it. Also, I guess it would be a good idea to not walk into his office the next time with a bottled water!! :)
Susan
I was told that my sodium was low. This is like the 3rd time on my lab report that it was low. But it's not THAT LOW, in my opinion. I think he's making a big issue out of a little thing. My calcium, potassium, B vitamins and that stuff are all fine, perfectly normal. My choloride is slightly low, but not THAT LOW. I'm just going to try to drink some Gatorade in there to add back in some sodium and see if that will shut him up about it. Also, I guess it would be a good idea to not walk into his office the next time with a bottled water!! :)
Susan
I've never heard anyone say not to drink more water! I'm new at this compared to you guys but I keep thinking about how to help my body de-toxify when tx is finished. It takes a while for our bodies to adjust to taking all this stuff, its bound to take time to flush it all out.
Good luck.
Good luck.
Last night I couldn't figure out why I couldn't sleep...then at midnight I realized my pill was still sitting next to my tea. Smart girl I am.
God I am praying just to get some regular amount of sleep after treatment. Of course I see my parents who NEVER seem to sleep and I wonder if that IS just age.
I had the sweats last night out of nowhere. I hate them so much. Can't stop praying they go away too.
Etc. etc.
What I'm trying to say Susan - this sucks. You did SO many treatments for so long I'm wondering if it whacked out something in your body somehow. Or if it could be related to the thyroid more than is realized or something.
How long have you been off meds now? It seems to me it's long enough to feel better by now right>?
I'm so tired of the whole dry mouth thing.........my tongue hurts from it all the time. If thata doesn't go away and my hair doesn't grow back...I am going to LOSE IT.
God I am praying just to get some regular amount of sleep after treatment. Of course I see my parents who NEVER seem to sleep and I wonder if that IS just age.
I had the sweats last night out of nowhere. I hate them so much. Can't stop praying they go away too.
Etc. etc.
What I'm trying to say Susan - this sucks. You did SO many treatments for so long I'm wondering if it whacked out something in your body somehow. Or if it could be related to the thyroid more than is realized or something.
How long have you been off meds now? It seems to me it's long enough to feel better by now right>?
I'm so tired of the whole dry mouth thing.........my tongue hurts from it all the time. If thata doesn't go away and my hair doesn't grow back...I am going to LOSE IT.
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