Aa
POST RX TREATMENT - the real problems ?
Post Rx Health
Hi every-one. I was on the Combo treatment for 12 weeks and was considered a 'non-responder'.
I'm 45 yr old male-fibrosis 2/4
Please don't say "I'm sorry it didn't work for you" , that is depressing and cold.
I had mild to moderate side effects from treatment.
Since stopping treatment I can FEEL (from pressure) my liver swelling on both sides. I have lost more weight since being OFF treatment than on. I have ALOT of muscle loss. I have skin pigmentation loss and my Platelet count/weight is DROPPING constantly. Please don't say ask the drs because I can't get any answers ......... they r too busy to explain to me what is going on. Does anyone know ?
Will weight/platelet count stabalize ?
Did RX trigger Autoimmune Hepatitis and is it reversable ?
Everyone-one talks about side-effects but do not match it to any relevant time information (ie: goes away, does not ???? )
What are the permant effects of side effects of treatment - noone told me !
WHY HIDE IT ?
Hi every-one. I was on the Combo treatment for 12 weeks and was considered a 'non-responder'.
I'm 45 yr old male-fibrosis 2/4
Please don't say "I'm sorry it didn't work for you" , that is depressing and cold.
I had mild to moderate side effects from treatment.
Since stopping treatment I can FEEL (from pressure) my liver swelling on both sides. I have lost more weight since being OFF treatment than on. I have ALOT of muscle loss. I have skin pigmentation loss and my Platelet count/weight is DROPPING constantly. Please don't say ask the drs because I can't get any answers ......... they r too busy to explain to me what is going on. Does anyone know ?
Will weight/platelet count stabalize ?
Did RX trigger Autoimmune Hepatitis and is it reversable ?
Everyone-one talks about side-effects but do not match it to any relevant time information (ie: goes away, does not ???? )
What are the permant effects of side effects of treatment - noone told me !
WHY HIDE IT ?
Hi kit,
I will check out your post around the 4th of July or so when I get back.
Thanks.
I will check out your post around the 4th of July or so when I get back.
Thanks.
well i hope that someone in our group is maintaining information. we could be our own study. and look at the numbers, and after tx, svr and lingering side effects. and hopefully whatever resolves the residual sides.
i have been on benzodiazepin serax 15 mg. and was taking one nightly, very seldom 2, lately i skip nights in an effort to fall asleep unassisted, and wonder if my attempts to stop could cause me problems, i know with ADs we need to wean off, is it the same for low-dose benzo? (i prob should know this and tried to look the other day). beside the cognitive diff. if i can't sleep at night, will make hard for me to get up to work a regular 8 hr. day. i do contract work now and make own schedule, but really hope to be employed through temp agency specific to my field.
bug - on this PBS program - nutrition called HOPE system books cds and the like, they said when eating yogurt for beneficial aspects, don't use yogurt with sugar in it, eat the unsweetened. sugar feeds candidas. but about the vinegar, it should be from health food store, but regular store brand works just as well.- seriously the benefit was very quick.
good day to all
i have been on benzodiazepin serax 15 mg. and was taking one nightly, very seldom 2, lately i skip nights in an effort to fall asleep unassisted, and wonder if my attempts to stop could cause me problems, i know with ADs we need to wean off, is it the same for low-dose benzo? (i prob should know this and tried to look the other day). beside the cognitive diff. if i can't sleep at night, will make hard for me to get up to work a regular 8 hr. day. i do contract work now and make own schedule, but really hope to be employed through temp agency specific to my field.
bug - on this PBS program - nutrition called HOPE system books cds and the like, they said when eating yogurt for beneficial aspects, don't use yogurt with sugar in it, eat the unsweetened. sugar feeds candidas. but about the vinegar, it should be from health food store, but regular store brand works just as well.- seriously the benefit was very quick.
good day to all
i am 10 months post tx of 45 weeks. i have bad short term memory problems and fatigue blamed on depression.
i did svr but am wondering if it was worth 45 weeks of sides and maybe a lifetime of lingering sides.
i am surprised you have these side after only 12 weeks of tx.
do not let people tell you "well, i have memory problems also, must be old age". bullpeppers.
i advise only those who are in immediate need of tx to rush into this poison with so many good drugs comming up to being aproved. remember the dr. suggesting tx is not the one who has to live with it.
these new drugs may include peg but for a much shorter period and much better chance of svr.
i did svr but am wondering if it was worth 45 weeks of sides and maybe a lifetime of lingering sides.
i am surprised you have these side after only 12 weeks of tx.
do not let people tell you "well, i have memory problems also, must be old age". bullpeppers.
i advise only those who are in immediate need of tx to rush into this poison with so many good drugs comming up to being aproved. remember the dr. suggesting tx is not the one who has to live with it.
these new drugs may include peg but for a much shorter period and much better chance of svr.
I don't know if this helps but just last week when I saw my heptologist we discussed my stopping ( July12, last shot day) and he said to expect sxs for up to three months afterwards. I'm wondering whether things will be easier for me because of slowly lessening my dosage. Now, I'm only doing 1/5 of the regular pegasys dosage, half of what I was doing for all but the first 5 weeks of tx.
I've been staying out of the sun except for my feet because I prefer flip-flops. The tops of my feet look like jerky w/o the grease. I'm now trying to remember to slather sunscreen on them.
There is no way I could walk 5 miles now. Maybe in a few months?
Take care. OH
I've been staying out of the sun except for my feet because I prefer flip-flops. The tops of my feet look like jerky w/o the grease. I'm now trying to remember to slather sunscreen on them.
There is no way I could walk 5 miles now. Maybe in a few months?
Take care. OH
i am 5 weeks post. I never got on any anti-depressants during treatment, however, today i am going to dr to get something to help take edge off. I am constantly irritated, everyday life was NEVER easy but i as a single mother have been able to maintain, even through tx. But lately, I have been a B*t*h!!
On a good note, my hip pain has subsided, but the abilty to put sentences together comes and goes. Some days at work i can sit at my desk and successfully be able to focus on tasks and get much work done, other days its the complete opposite. While still on tx, I looked forward to playing with kids, but this weekend for example i was exhausted, irritated, and snappy with them. I dont know if this has to do with the whole WAITING AND WATCHING gsme, but I am hoping that when they tell me i am SVR this will go away.
I am also glad i gave it a try, Just wish I was more informed about those who are rapid responders stopping tx at week 24.I wish there wre more studies out there that related to people like me. With more exposure out there regarding this disease, there is bound to be more people that are like me.coming out of the woodwork. With everyone's testimonies regarding post tx sx, WHERE ARE THE STUDIES???
On a good note, my hip pain has subsided, but the abilty to put sentences together comes and goes. Some days at work i can sit at my desk and successfully be able to focus on tasks and get much work done, other days its the complete opposite. While still on tx, I looked forward to playing with kids, but this weekend for example i was exhausted, irritated, and snappy with them. I dont know if this has to do with the whole WAITING AND WATCHING gsme, but I am hoping that when they tell me i am SVR this will go away.
I am also glad i gave it a try, Just wish I was more informed about those who are rapid responders stopping tx at week 24.I wish there wre more studies out there that related to people like me. With more exposure out there regarding this disease, there is bound to be more people that are like me.coming out of the woodwork. With everyone's testimonies regarding post tx sx, WHERE ARE THE STUDIES???
I ended 60 weeks of treatment about 15 months ago. I am mentally fatigued, physically weak, lethargic, have poor concentration, sometimes to the point of dizziness. Short term memory problems you betcha. Joint/bone/muscle pain from sunrise to sunset, though part of that it caused by unrelated progressive spinal curvature. No appetite. Eating is a chore so my some of my blood nutrition numbers have become low. Especially iron. Ferritin (iron storage molecules) is around 15 which is below normal. I will ask for test of B-vitamins, calcium, potassium,electrolytes, next time i see the doc. What else to test for?
Because I still have hep c, it is reasonable to think that these lingering sympyoms/sides might be from that. I am inclined to attribute these lasting problems to the severity of the treatment drugs or both the drugs and the diisease. You cain't win fer losing. My main cocktail was interferon, ribavirin and neupogen. How long will these aches and pains and brain drains last? At the end of my treatment a funky neuropsychiatric memory evaluation (ordered by Social Security as part of my SSDisability Claim.) revealed quantifiable objective evidence of abnormal visual memory. I was wickedly fatigued and 40 pound lighter and measureably malnourished by that point in tx. But litsen up you current tx'ers - be cheered! Things have gotten better For the benefit of you poor folks on tx right now (and reading all this scary stuff) I should say that my anxiety and darkest depression began clearing right away after the last shot. WHEW! I could actually witness the unfolding springtime and nature that had held my heart together through so many long cold months. Did I mention I'm a nature gal? My appetite came back too right away and my sleep improved. I have taken 20 mg ambien eveynight for 5+ years because I have a brain that will not go to sleep on it's own nor with melatonin or chamomile tea or other OTC preparation. I have some luck with Xanax and such, but the sleep is always too short. :-)
Anyway the point of this blather is to add my two bits to the dialougue about pos-tx symptoms, some of which are neurological because they involve cognitive processes. Near the end of tx I found an excellent neurologist in this small univerity town who was willing to order an MRI brain scan for me. The results were abnormal. There are multiple areas of stucturally pathologies that show up in the scan becasue they contain water - meaning dead cells. They spot are "areas of T2 hyperintensity" Leukoaraiosis is the technical term. A second MRI a few weeks ago showed that the white matter areas were still there, but stable - unchanged. So WHEW for that too! The pathologist report says the T2 areas are consitent with either demyelination disease (MS) or ischemic changes suggestive of early onset dementia. Yahoo! The question that lies before me now is were the abnormalities causued by the treatment, the HCV, or some series of unrealted cerebral vascular events (note: the spots are not from strokes or tumors. ) A search of the medical abstracts turns up evidence for all those possibilities. I have four specialists whose turfs overlap at this point in my personal spacetime medical continuum. Each has a different opinion of the cause of the brain damage. None of them encourages me to retereat....
So my question to you good people? Has anyone had a MRI brain scan, either before during or after hep c tx? I would be very interested in the results! I will share my report with you so we can compare notes. Brain MRI are spendy and not that easy to get ordered, so if you think you want one you might have to come up with some reason other than fear of toxic effects of hep c treatments. I think a doc might balk at that. People who get migraines sometimes get MRI's ordered... Just a thought...
Cheers all you strugglers, and Ladybug I am wishing you well tonight ((bug))
Kit
oops heres my addy if anyone want to chat about this. I have done a fair bit of research in the med abstracts.
kjohyahoo at yahoo dot com
Because I still have hep c, it is reasonable to think that these lingering sympyoms/sides might be from that. I am inclined to attribute these lasting problems to the severity of the treatment drugs or both the drugs and the diisease. You cain't win fer losing. My main cocktail was interferon, ribavirin and neupogen. How long will these aches and pains and brain drains last? At the end of my treatment a funky neuropsychiatric memory evaluation (ordered by Social Security as part of my SSDisability Claim.) revealed quantifiable objective evidence of abnormal visual memory. I was wickedly fatigued and 40 pound lighter and measureably malnourished by that point in tx. But litsen up you current tx'ers - be cheered! Things have gotten better For the benefit of you poor folks on tx right now (and reading all this scary stuff) I should say that my anxiety and darkest depression began clearing right away after the last shot. WHEW! I could actually witness the unfolding springtime and nature that had held my heart together through so many long cold months. Did I mention I'm a nature gal? My appetite came back too right away and my sleep improved. I have taken 20 mg ambien eveynight for 5+ years because I have a brain that will not go to sleep on it's own nor with melatonin or chamomile tea or other OTC preparation. I have some luck with Xanax and such, but the sleep is always too short. :-)
Anyway the point of this blather is to add my two bits to the dialougue about pos-tx symptoms, some of which are neurological because they involve cognitive processes. Near the end of tx I found an excellent neurologist in this small univerity town who was willing to order an MRI brain scan for me. The results were abnormal. There are multiple areas of stucturally pathologies that show up in the scan becasue they contain water - meaning dead cells. They spot are "areas of T2 hyperintensity" Leukoaraiosis is the technical term. A second MRI a few weeks ago showed that the white matter areas were still there, but stable - unchanged. So WHEW for that too! The pathologist report says the T2 areas are consitent with either demyelination disease (MS) or ischemic changes suggestive of early onset dementia. Yahoo! The question that lies before me now is were the abnormalities causued by the treatment, the HCV, or some series of unrealted cerebral vascular events (note: the spots are not from strokes or tumors. ) A search of the medical abstracts turns up evidence for all those possibilities. I have four specialists whose turfs overlap at this point in my personal spacetime medical continuum. Each has a different opinion of the cause of the brain damage. None of them encourages me to retereat....
So my question to you good people? Has anyone had a MRI brain scan, either before during or after hep c tx? I would be very interested in the results! I will share my report with you so we can compare notes. Brain MRI are spendy and not that easy to get ordered, so if you think you want one you might have to come up with some reason other than fear of toxic effects of hep c treatments. I think a doc might balk at that. People who get migraines sometimes get MRI's ordered... Just a thought...
Cheers all you strugglers, and Ladybug I am wishing you well tonight ((bug))
Kit
oops heres my addy if anyone want to chat about this. I have done a fair bit of research in the med abstracts.
kjohyahoo at yahoo dot com
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