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Tx after effects
Can anyone agree with me, that they still feel like crap after tx? Finished the 48 week SOC plan almost 3 mnths ago, still have 3-4 I have to stay in bed from the horrid body aches. Drs lied and said 3 mnths, I'd b my old self. Who and where is the person I was once before? A piece of me is missing, in addition to all the flu like symptoms have not subsided. Feels like severe fibromyalgia. Achy mucles, sore joints. Tx def beat me up. I def shudve
When am I gonna get better? Oh yeah I'm still UND
When am I gonna get better? Oh yeah I'm still UND
Hi there, I just wanted to say I am thinking of you and hoping that things are getting better after the quad treatment you went through
There are some others who have experienced what you did with their fingers and toes turning white. I do not know about the extreme weight loss, you are one of the very few I have heard of to lose so much weight. I am so sorry for what you went through. I also think the doctor was wrong to tx you when you did not have any damage to your liver.
When I could I did start walking and it was rough, I started out just walking in the apt for 10 minutes and slowly built up to half hour then an hour. By then I was outside. I was using muscles I did not know I had. I think that the VS950 plus the VX222 and the Peg and Riba really did a number on you, I pray that now you are beginning to see the light.
Dee
There are some others who have experienced what you did with their fingers and toes turning white. I do not know about the extreme weight loss, you are one of the very few I have heard of to lose so much weight. I am so sorry for what you went through. I also think the doctor was wrong to tx you when you did not have any damage to your liver.
When I could I did start walking and it was rough, I started out just walking in the apt for 10 minutes and slowly built up to half hour then an hour. By then I was outside. I was using muscles I did not know I had. I think that the VS950 plus the VX222 and the Peg and Riba really did a number on you, I pray that now you are beginning to see the light.
Dee
This is my first tx so not an expert, I would expect the advice on walking is good. I have noticed that there are a number of articles you can google on detox after chemotherapy. These are geared towards cancer patients but i think the principals may apply so my intention is to try to some gently detox to help healing. I.E. water with lemon, lots of water, walking, Epsom salt baths, a detox healthy diet, etc. As you get stronger maybe very gentle lymphatic massage and sauna. It sounds like chemo can hurt muscle so deep massage could be harmful until your body has recovered.
Anyway, no idea if these things will help but more food for thought. Hope you feel better soon.
Anyway, no idea if these things will help but more food for thought. Hope you feel better soon.
"I would not look for very much support or reinforcement on the forum, since a good number of people are certain the problem is not real, or in some cases, that it should not be openly discussed. "
DD. I have never noticed anyone here denying that long term side effects on interferon treatment are a real possibility.
It is my opinion that someone who doubledosed may not be the best one to share unbiased views on the subject.
My personal feeling is, all information is appreciated.
However, once presented it is up the the person to make their choice.
In supporting people on the forum dealing with a difficult treatment, it seems like the best thing we can do is encourage hope and views towards our goal~ a future free of hep C.
DD. I have never noticed anyone here denying that long term side effects on interferon treatment are a real possibility.
It is my opinion that someone who doubledosed may not be the best one to share unbiased views on the subject.
My personal feeling is, all information is appreciated.
However, once presented it is up the the person to make their choice.
In supporting people on the forum dealing with a difficult treatment, it seems like the best thing we can do is encourage hope and views towards our goal~ a future free of hep C.
Been a year exactly since stopping quad Tx being UND @ 12 weeks.per Vertex protocol combined with a VERY tough time with Peg. Relapsed at 14 weeks and back to work as an over the road trucker. Wasn't myself ended up on an anti depressant and in eyeglasses. Continually felt slightly better, sometimes a few steps backward too. Took 9 months to get back to what I'd say is about 90% my old self. Doctors swore in couldn't be Sx but my body/mind knows different. BTW CureHepC I friended you on Yahoo Messenger so accept it whenever you go there if you'd like to chat.
There is really no way to tell how long your tx after-effects might last. They could lift in a few more weeks, or months, or in a year...and sometimes the after-effects remain for a long time. A specific group of treaters end up having permanent problems from the interferon, and there are just not many statistics or studies out there that have tracked long term issues in SVR's. Its kind of a 'hot potato' issue.
There is also a tendency on the forum to not encourage open discussion of long term problems stemming from tx....for a variety of reasons I guess...so I will just advise you to look through old threads on the subject of 'long term after-effects', and see if your situation is similar to others who have posted. You should probably make all of your doctors aware of these problems so that you can go through the obligatory tests and labs to see what may be amiss. Many of us have found no ready answers to the post-tx after effects dilemma. The closest you will come to seeing it described in the medical community is 'Post-Interferon Syndrome', coined by the Mayo Clinic.
I will no longer get into details of my experiences, since it is my own unique experience and may not be applicable to others. I will just advise you to do lots of research, follow up with specialist physicians to rule out other issues, and HOPE that someone figures out a way to deal with the syndrome.
If you are fortunate, it will all fade away in time...if you live healthy, workout, and keep a positive attitude. For some of us, doing all those things has not worked...so more research is needed...more inquiring minds and open minds are necessary, to get this issue addressed, and lots of communication with the medical community to continue making it known that these cases are out there, and need attention.
I would not look for very much support or reinforcement on the forum, since a good number of people are certain the problem is not real, or in some cases, that it should not be openly discussed. That would not be my idea of the ideal way to approach a problem like this, but in the face of constant animosity, I end up thinking that it is easier to just avoid discussing serious subjects on this forum.
I do wish you good luck ahead, and that you DO NOT end up in the long term category.....but I will just say that what you are experiencing is not at all uncommon. Try to be patient, and remain optimistic.
DoubleDose
There is also a tendency on the forum to not encourage open discussion of long term problems stemming from tx....for a variety of reasons I guess...so I will just advise you to look through old threads on the subject of 'long term after-effects', and see if your situation is similar to others who have posted. You should probably make all of your doctors aware of these problems so that you can go through the obligatory tests and labs to see what may be amiss. Many of us have found no ready answers to the post-tx after effects dilemma. The closest you will come to seeing it described in the medical community is 'Post-Interferon Syndrome', coined by the Mayo Clinic.
I will no longer get into details of my experiences, since it is my own unique experience and may not be applicable to others. I will just advise you to do lots of research, follow up with specialist physicians to rule out other issues, and HOPE that someone figures out a way to deal with the syndrome.
If you are fortunate, it will all fade away in time...if you live healthy, workout, and keep a positive attitude. For some of us, doing all those things has not worked...so more research is needed...more inquiring minds and open minds are necessary, to get this issue addressed, and lots of communication with the medical community to continue making it known that these cases are out there, and need attention.
I would not look for very much support or reinforcement on the forum, since a good number of people are certain the problem is not real, or in some cases, that it should not be openly discussed. That would not be my idea of the ideal way to approach a problem like this, but in the face of constant animosity, I end up thinking that it is easier to just avoid discussing serious subjects on this forum.
I do wish you good luck ahead, and that you DO NOT end up in the long term category.....but I will just say that what you are experiencing is not at all uncommon. Try to be patient, and remain optimistic.
DoubleDose
So very sorry for you, I think being on Telapriver and the VX220 alone to treat your HCV before rolling over to the Peg and Riba for 48 weeks really started you at a disadvantage. I can't remember if you were on both for 8 weeks before you were switched over to SOC or not. I also remember that you lost over 40 lbs which is definitely not the norm. I wonder if you could find others who tried the VX950 and VX220 failed to get to UND and then went to SOC. I think that is the only way you can really find out what happened.
I am so sorry for what you have gone through. I am on my last week of treatment and started walking a week ago. It hurt and I was sore after walking for 15 minutes so I did some stretches and have taken calcium magnesium to help with leg cramps. The first time I treated the doc said I would feel better in 3 months, I would say a more honest estimate would be 6 months, especially after what you have been through with the tx and the extra hepatic symptoms. I am praying for you
Dee
I am so sorry for what you have gone through. I am on my last week of treatment and started walking a week ago. It hurt and I was sore after walking for 15 minutes so I did some stretches and have taken calcium magnesium to help with leg cramps. The first time I treated the doc said I would feel better in 3 months, I would say a more honest estimate would be 6 months, especially after what you have been through with the tx and the extra hepatic symptoms. I am praying for you
Dee
One more thought concerning body aches,inflamation causes pain.
Bromelian in just on supplement which reduces swelling. Its made from pineapples.
Do some searches.
The other thing that's great but won't get you up and moving, is cannabis brownies. They use them for fibromyalgia.
You can get better!
Bromelian in just on supplement which reduces swelling. Its made from pineapples.
Do some searches.
The other thing that's great but won't get you up and moving, is cannabis brownies. They use them for fibromyalgia.
You can get better!
Did you do excercise prior to treatment? You don't have to walk in the mall for 3 hrs, that's a lot when you haven't done any excercise for a long time...try walking for 10 or 15 minutes at first every day, not running or even walking fast, just a walk to get use to getting around and build from there. My guess is that you will be able to increase your distance after a short while....just increase by maybe 5 minutes every week or so...anything helps, it doesn't have to be all or nothing...Talk to your doctor about what is ok and what is not ok as far as excercise...I am pretty sure that doing nothing will only make it worse unfortunatly, although it doesn't seem like it would when your laying down, ha...best of luck
When I had decompensated cirrhosis I would wake in the night with painful leg cramps. My husband forced me to get up and move. As hard as it was to do so, it always worked, the pain went away.
As I got sicker and sicker, he kept getting me out and walking, whenever I could. Days prior to my tp, I was still up and moving although more of my time was spent prone..
One month after my tp, he took me to a hilly spot and we hiked. Sometimes I walked 3 steps before sitting down to rest.
Afterwords my thighs ached.
But guess what? My muscles began to work again.
Use it or lose it.
You haven't used it.
Don't walk for 3 hours. Walk down the street and back. Do it again later.
Keep increasing the distance and times you do it.
Do slow stretches sitting down or lying.
Be the little engine that could, Not, I think I can, but, Yes I can!
As I got sicker and sicker, he kept getting me out and walking, whenever I could. Days prior to my tp, I was still up and moving although more of my time was spent prone..
One month after my tp, he took me to a hilly spot and we hiked. Sometimes I walked 3 steps before sitting down to rest.
Afterwords my thighs ached.
But guess what? My muscles began to work again.
Use it or lose it.
You haven't used it.
Don't walk for 3 hours. Walk down the street and back. Do it again later.
Keep increasing the distance and times you do it.
Do slow stretches sitting down or lying.
Be the little engine that could, Not, I think I can, but, Yes I can!
It may appear that I'm (we, as others have suggested moving) coming across as harsh but you are making excuses for not moving or exercising. We are not suggesting starting a full-on heart pumping, weight lifting, lactic acid build up exercise program. No one suggested it would be easy. Heck you fought for months on end to get through tx and now you are cured. You endured this harsh treatment and now it it time to continue the fight. I know through your tx. you experieced some introspective thought and you know how to dig deep and fight. See your doc. about your limitations on exercise. Seek out some help. Keep rubbing those teenie muscles after a little moving. Lets go get moving. It will make you feel better. Keep us posted and best of luck. Get moving.
Did want to say to the comment of moving around or exercise. Yeah right. That doesn't happen when you ache so bad in legs. Lol. I try to do stretches and rub my teenie muscles. Oh Lord, they cud not handle real exercise and lactic acid build up on top. Plus energy level is crap. A few stores at xmas time, walking in mall after 3 hrs, wud put me in bed for the next day from calve and feet pain. Walking isn't an option either as yet. Are they're really some of you that actually do real working out? I commend u :)
Thanks for replies!
"I really believe you need to get out of bed and get moving some, as hard as it might be. Get some blood flowing through your body. Start going for daily walks. Increase your distance each day."
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I gotta agree with the above sentiments. The more you sit around, all you will have to think about is how bad you feel. Movement or exercise generates energy, no movement=no life.
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I gotta agree with the above sentiments. The more you sit around, all you will have to think about is how bad you feel. Movement or exercise generates energy, no movement=no life.
I thought I was feeling so much better right after treatment ended but really do think this was just the relief from finishing treatment and not actually taking the medications daily and having to work so hard to get through the side effects.
Over the last 16 months I have slowly gotten better and better. I am better than I remember being even many years ago. I treated in late 2009 through most of 2010 and was SVR in spring of 2011. Try to be and stay as active as you can and take care of yourself and push yourself forward with your life. I think you will feel a lot better as time goes on! I think some folks get back to feeling good faster but I believe at 59 I needed more recovery time. Good Luck.
Over the last 16 months I have slowly gotten better and better. I am better than I remember being even many years ago. I treated in late 2009 through most of 2010 and was SVR in spring of 2011. Try to be and stay as active as you can and take care of yourself and push yourself forward with your life. I think you will feel a lot better as time goes on! I think some folks get back to feeling good faster but I believe at 59 I needed more recovery time. Good Luck.
After only 3 months most will not feel absolutely recovered at all. I treated for 72 weeks and it took me longer than a year to even begin to feel that the meds were out of my body and that I was 'getting back to normal' whatever that truly is.
You can't expect necessarily in such a short amount of time to feel well.........it just isn't necessarily going to happen and cannot be expected to. I agree that you have to start out small and get your body back into go mode, it wont most likely just happen a month after you stop the meds.
You can't expect necessarily in such a short amount of time to feel well.........it just isn't necessarily going to happen and cannot be expected to. I agree that you have to start out small and get your body back into go mode, it wont most likely just happen a month after you stop the meds.
I have only been through 12 weeks of tx with soc and a trial with 2 DAA's and INF/Riba -failed both times. So I don't know what its like to do 48 weeks. I would think, as with me, that you have been through a lot with those meds in your system and it will take some time to get back to normal. As others have suggested with the yoga etc. I really believe you need to get out of bed and get moving some, as hard as it might be. Get some blood flowing through your body. Start going for daily walks. Increase your distance each day. Start some type of strength training. Start slow and small but start. I know it may be hard and you may have to work around some physical limitations regarding exercise however I believe in a few weeks you will feel better if you get moving. The human body was not created to be sedentary.
For me, recovery was very slow. It took about 12 to 14 months to feel fully recovered. (I did 48 wks of SOC).
i followed up on a post from another page and here's a list of articles regarding post sx on SOC.
http://www.ncbi.nlm.nih.gov/pubmed?Db=pubmed&DbFrom=pubmed&Cmd=Link&LinkName=pubmed_pubmed&IdsFromResult=19441669
i imagine that with the newer tx there is not enough track record to gather info on post sx yet. but those originaldrugs are ROUGH. some people have a much easier time, i didn't and even tho i was UND after most of the second time around i had to stop or die...(at least i felt like that)
at least you UND!!!! yay hope that sticks.
it's been 5 years for me and i am waiting for the new oral tx as i think i may be allergic to some of the meds on SOC. i am way better than i was, but not sure if i'll ever feel "normal" again!!! oh well, that's why they made heaven.
praying for everyone on the forum.
http://www.ncbi.nlm.nih.gov/pubmed?Db=pubmed&DbFrom=pubmed&Cmd=Link&LinkName=pubmed_pubmed&IdsFromResult=19441669
i imagine that with the newer tx there is not enough track record to gather info on post sx yet. but those originaldrugs are ROUGH. some people have a much easier time, i didn't and even tho i was UND after most of the second time around i had to stop or die...(at least i felt like that)
at least you UND!!!! yay hope that sticks.
it's been 5 years for me and i am waiting for the new oral tx as i think i may be allergic to some of the meds on SOC. i am way better than i was, but not sure if i'll ever feel "normal" again!!! oh well, that's why they made heaven.
praying for everyone on the forum.
Me too, honey. I finished triple therapy 6-7 weeks ago and have my energy and brain back (I think). I had severe body and joint aches for the first 5 weeks and then started getting a break now and then for a few days. Then they are back, but go away again. I am grateful for the brain! I still have emotional issues but ...I am happy for the improvement I have had. I agree that it feels like severe fibromyalgia. To all those post tx it seems to get better with time. The hair thing isn't happening for me yet but still happy to have progress. Praying for you all! Take care,
G
G
Congrats on your UND!. Sry to hear you're feeling poor. Take care of yourself and give it some time. It was good to hear from all who finished! We've got to hang onto hope.
Have you tried yoga or just walking? It kills me to walk. I'm sooo slow. But even tho I'm sore, if I do yoga 2 or 3 times a day? It really helps. I'm on week 29 and have felt like i got hit by a bus this last few weeks. SE are up and down...
Stay strong, and congrats again!
Karen
Have you tried yoga or just walking? It kills me to walk. I'm sooo slow. But even tho I'm sore, if I do yoga 2 or 3 times a day? It really helps. I'm on week 29 and have felt like i got hit by a bus this last few weeks. SE are up and down...
Stay strong, and congrats again!
Karen
Tx can be grueling for some and afterwards after effects can linger on for 2 months to 2 yrs. The drugs and tx are very serious. If you can imagine how delicate your liver is, everything connected to it and everything that goes through it do get routed to it's rightful place, it's easier to understand why you would take so long to feel better.
Your liver and other insides are delicate and the drugs don't care, they're there to do a job and that's all they know. I suggest if someone new is reading this and can wait to go through tx, then that's what you should do.
Put it off as long as you can because you will never know how long you will feel bad for afterwards. Of course if you think you are tired of being infected with HepC and carrying around the weight of being discriminated against for something that wasn't your fault then go for it. Just know that it's tough and you get what you're given. The black box warnings list everything, read them before you get you prescriptions filled and again afterwards. good luck y'all!!
Your liver and other insides are delicate and the drugs don't care, they're there to do a job and that's all they know. I suggest if someone new is reading this and can wait to go through tx, then that's what you should do.
Put it off as long as you can because you will never know how long you will feel bad for afterwards. Of course if you think you are tired of being infected with HepC and carrying around the weight of being discriminated against for something that wasn't your fault then go for it. Just know that it's tough and you get what you're given. The black box warnings list everything, read them before you get you prescriptions filled and again afterwards. good luck y'all!!
My partner said it took him about 1 yr to feel normal again, he did SOC. It's different for everyone, it would be so nice if 1 answer fit everyone, but this disease and it's treatment is just weird....nothing about it is 1 size fits all...that can be very frustrating sometimes...give it some more time, hopefully you will start feeling better soon....
Hi eveyone, thanks for all the info that is on this site. I am sure it will be very helpful and informative. just started my triple meds today at 2pm. Scared for sure, but its now or never. It gives me encouragement to hear people talk about going into their 12 week or more. And it helps to know what to expect. I wish you all the best and God willing it will also help me.
thanks Paul
thanks Paul
I felt my worst 3-9 months after finishing tx - I think I was riding a high soon after finishing the meds to mask some of the sx early on. I know this doesn't sound real encouraging, but by 9 months - and certainly by one year - the sides lifted dramatically!!! I was also dxd with fibro but wasn't convinced that it was and never started the meds. For me it was the right choice. From my one year post in May 2011 (SVR) it's been smooth sailing and I haven't felt this good in years. Hang in there!!
PS. If you haven't already, make sure to get your thyroid checked. In addition to fatigue, it can cause joint pain, especially with the knees.....
Pam
PS. If you haven't already, make sure to get your thyroid checked. In addition to fatigue, it can cause joint pain, especially with the knees.....
Pam
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