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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 ?
that is some interesting stuff about the brain MRI. i did have one years ago MRI not brain or was that other way around... what i mean is, i was given MRI ordered by a neurologist because i was having fainting spells he had ordered to rule out ms and other things. i was informed it was normal, and that i did have a brain.
rose
rose
Wow, pretty interesting stuff.
"Yahoo!" You're funny, and poetic, you little nature lover. I have a brain that will not go to sleep until it's time to get up. Maybe that accounts for the naps in the car!
You txed a really long time, it really stinks that you didn't clear. I would love to have an MRI but really don't want to know what's on it.
I'm amazed you've gotten so much info, and there's so much out there that we don't know going into tx.
Your story puts my little problems in perspective. You sound twice as smart as me to begin with though so I'm glad my tx was shorter.
Well, I'm going to bed. I quit taking ambien because I was afraid it caused me more cognitive problems. I used to take clonazepam at night to help me relax to sleep, but my hip pain wakes me anyhow. Now I just try reading, or hanging out on the forum at 2 or 3 in the morning. Then I jeopardize my life and others while driving home from work fatigued.
Thanks for the input, I'll contact you soon.
Take care,
Bug
"Yahoo!" You're funny, and poetic, you little nature lover. I have a brain that will not go to sleep until it's time to get up. Maybe that accounts for the naps in the car!
You txed a really long time, it really stinks that you didn't clear. I would love to have an MRI but really don't want to know what's on it.
I'm amazed you've gotten so much info, and there's so much out there that we don't know going into tx.
Your story puts my little problems in perspective. You sound twice as smart as me to begin with though so I'm glad my tx was shorter.
Well, I'm going to bed. I quit taking ambien because I was afraid it caused me more cognitive problems. I used to take clonazepam at night to help me relax to sleep, but my hip pain wakes me anyhow. Now I just try reading, or hanging out on the forum at 2 or 3 in the morning. Then I jeopardize my life and others while driving home from work fatigued.
Thanks for the input, I'll contact you soon.
Take care,
Bug
I'm really going to look into the vinegar thing. It sounds like a simple cheap cure. And other than the sodium level, doesn't sound like it can hurt, even if if doesn't work.
This is amazing to me to hear so many responses. BTW, I put on sunscreen everyday now, something I've never done before tx.
I've seen my PCP twice since stopping tx, once for the uncontrollable itch, hip pain, and to get a 4 week post pcr. He gave me a steroid shot that cured the itching, and thought the hip/leg pain was maybe another hernia. (I've had two)
My immune system is really not doing it's job and it took me two weeks to recover from a "virus" that turned into bronchitis. I went to an urgent care center on a Saturday for that. Since then I've started drinking dannon "immunity" a 3.3oz bottle of liquid yogurt with the active cultures that restore immunity in your digestive tract. I stopped after I felt better, and Friday started getting a sore throat and cough again. Went and got some more yogurt.
Went back to the PCP last Thurs. to ask for another pcr and to follow up on the hip pain. Now he's referred me to an ortho dr to rule out DJD or bursitis.
My hep clinic has had nothing to do with me since 2nd week in March, at my last visit. They did call me last week to reschedule the June 26 appt as the PA will be out of town. I said don't bother with rescheduling. I only saw her twice on tx and one of those appts was rescheduled also.
I have a lot of energy I think, but it comes in bursts. As far as the brain function, some days I can wake up and realize as I'm trying to get ready for work that it's going to be a bad day. I can barely get out of the house, it takes so long to get ready due to disorganization.
I told my daughter and husband about the sadness I'm experiencing and they were wonderful. They reminded me that I had just gone thru tx and that it would take some time to feel better. Of course they notice the cognitive changes but keep reassuring me it will get better. I've rechecked my spelling on this about 20 times already and fixed the many errors. At least I have the ability to see my errors and fix them most of the time. My typing is worse than the spelling, so a lot is h
just typo errors.
Rose, I hope you start feeling better soon. I think there's hope for all of us. My problems aren't debilitating, just irritating. Ask your PCP for the 12 week PCR. If I'm not clear, no way am I going back on tx yet. I'm sure that to the ones who txed longer, I sound like a whiner. But, I quit because of the same problems I'm talking about now. I fear the toxicity of the meds, but I'm still glad I gave it a try.
Hugs,
Bug
This is amazing to me to hear so many responses. BTW, I put on sunscreen everyday now, something I've never done before tx.
I've seen my PCP twice since stopping tx, once for the uncontrollable itch, hip pain, and to get a 4 week post pcr. He gave me a steroid shot that cured the itching, and thought the hip/leg pain was maybe another hernia. (I've had two)
My immune system is really not doing it's job and it took me two weeks to recover from a "virus" that turned into bronchitis. I went to an urgent care center on a Saturday for that. Since then I've started drinking dannon "immunity" a 3.3oz bottle of liquid yogurt with the active cultures that restore immunity in your digestive tract. I stopped after I felt better, and Friday started getting a sore throat and cough again. Went and got some more yogurt.
Went back to the PCP last Thurs. to ask for another pcr and to follow up on the hip pain. Now he's referred me to an ortho dr to rule out DJD or bursitis.
My hep clinic has had nothing to do with me since 2nd week in March, at my last visit. They did call me last week to reschedule the June 26 appt as the PA will be out of town. I said don't bother with rescheduling. I only saw her twice on tx and one of those appts was rescheduled also.
I have a lot of energy I think, but it comes in bursts. As far as the brain function, some days I can wake up and realize as I'm trying to get ready for work that it's going to be a bad day. I can barely get out of the house, it takes so long to get ready due to disorganization.
I told my daughter and husband about the sadness I'm experiencing and they were wonderful. They reminded me that I had just gone thru tx and that it would take some time to feel better. Of course they notice the cognitive changes but keep reassuring me it will get better. I've rechecked my spelling on this about 20 times already and fixed the many errors. At least I have the ability to see my errors and fix them most of the time. My typing is worse than the spelling, so a lot is h
just typo errors.
Rose, I hope you start feeling better soon. I think there's hope for all of us. My problems aren't debilitating, just irritating. Ask your PCP for the 12 week PCR. If I'm not clear, no way am I going back on tx yet. I'm sure that to the ones who txed longer, I sound like a whiner. But, I quit because of the same problems I'm talking about now. I fear the toxicity of the meds, but I'm still glad I gave it a try.
Hugs,
Bug
thank you for sharing...
thanks for the encouragement cruel. i don't think i have opportunity for a different or better hepatologist at this point, and when the docs see me, it seems like all give the the "she really needs to see a psychiatrist" smirk and dismiss me. really i do feel they do. you are right they are probably putting all their efforts into getting "new" people into treatment. they did do such a good job of that, get them in, get them on, montior, but as i stopped 3 weeks early i really feel abandoned by them. i get no followup with GI nurse, my regular PCP is who i see now. and i am enviouis that bug gets a 12 week post test (and others) and i don't - why? -- i wonder as i feel further abandoned. i will wait to see what the 6 mth brings.
Bug - you are a champion you worked so hard throughout treatment, messed up that you are still so tired. but like you i start out okay, usually, and well can't even say that, i do however have increasing stamina. its a brain fuzz that comes and goes at unpredicatble times, and the vinegar in water does help quite significantly. today i watched a program on PBS aired in So. CA, nutrition program where they talked about eating, probiotics, vinegar, and they added another element i don't think much about digestive enzymes. but i recently got the stuff i need and added something i never took before -- the omega-3, and more flax.. i don't even want to take the stantins anymore to lower cholesteral....
and who was that that said 3.5 years to recover... please, say it isn't so!!! we have to try harder to find what will help us recover,
so i ask, those who felt better right after a hard tx. what did you do that may have been different?
Bug - you are a champion you worked so hard throughout treatment, messed up that you are still so tired. but like you i start out okay, usually, and well can't even say that, i do however have increasing stamina. its a brain fuzz that comes and goes at unpredicatble times, and the vinegar in water does help quite significantly. today i watched a program on PBS aired in So. CA, nutrition program where they talked about eating, probiotics, vinegar, and they added another element i don't think much about digestive enzymes. but i recently got the stuff i need and added something i never took before -- the omega-3, and more flax.. i don't even want to take the stantins anymore to lower cholesteral....
and who was that that said 3.5 years to recover... please, say it isn't so!!! we have to try harder to find what will help us recover,
so i ask, those who felt better right after a hard tx. what did you do that may have been different?
3.5 years.
Aggggg.
That's a scary thought. I thought I would be miraculously cleared at the end of treatment.
But it is good to know others have had some post tx issues and I'm not alone.
Meki
Aggggg.
That's a scary thought. I thought I would be miraculously cleared at the end of treatment.
But it is good to know others have had some post tx issues and I'm not alone.
Meki
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