Aa
Hi all, now can I join the group?
Many of you have seen me for years on the Hep C and Hep Social forums. Now that I've actually been undetected since my last treatment.., 6/18/2014 through 9/10/2014, I am post TX. Hopefully, I will be UND on my 12 wk post TX viral load. That will be drawn on 12/17/2014.
Post treatment: Though I'm supposedly cleared, I thought I'd be getting a renewed, vibrant energy boost. It hasn't happened yet. I know some people that even when they were still on treatment, once they went UND, they could notice a change in how their body felt and they said they had more energy. That didn't happen to me. With that being said, I was determined to stay active throughout my treatment, because I believe it helps/helped me deal with the side effects, depression, etc. My treatment I just did was the Sovaldi/Peg/Riba x 12 wks. I've noticed that I've put on a few pounds since stopping TX, but still not in the overweight category, by a long stretch. My blood sugar, random glucose was in the normal range when I had checked a few weeks ago. My AST never did go normal throughout TX, but it did get lower. On that blood work a few wks ago, it was still just over the normal range marker. I heard some people's ALT/AST went down into the teens when they were on the Sovaldi TX and went undetected. There again, didn't happen here. Throughout the years, doing 11 TX's and having Interferon each time, I've compounded post TX side effects and I'm wondering, will my life ever be a 'new' normal? I hope so. I'd love to wake up in the morning and feel rested, refreshed, not achy, not depressed, not feeling like somebody's been punching me in the middle of the night. I've read where some of the people on this board mentioned the continuing brain fog? I feel like I've been in a brain fog for a very long time. Some things do help me with that I've found. Coffee in the AM for one. The Luminosity game on line. Exercise. Being able to look outside and see the sunlight, even if my skin doesn't tolerate being out in the sun...(thanks to all the TX's..), but when I look outside and it's a gray or rainy day out, the brain fog seems to be about 200 times worse. It's like my brain never totally gets awake all day long. I've noticed that the changed in the weather like hot to cold, cold to hot, or pressure changes, also seems to affect how my body feels. Do any of these things have anything to do with post-TX issues? Or are they symptoms of getting older? Or depression (although I don't feel particularly sad and rarely ever cry). Anyhow, I hope I'm welcome on this side of the forums. Susan400
Post treatment: Though I'm supposedly cleared, I thought I'd be getting a renewed, vibrant energy boost. It hasn't happened yet. I know some people that even when they were still on treatment, once they went UND, they could notice a change in how their body felt and they said they had more energy. That didn't happen to me. With that being said, I was determined to stay active throughout my treatment, because I believe it helps/helped me deal with the side effects, depression, etc. My treatment I just did was the Sovaldi/Peg/Riba x 12 wks. I've noticed that I've put on a few pounds since stopping TX, but still not in the overweight category, by a long stretch. My blood sugar, random glucose was in the normal range when I had checked a few weeks ago. My AST never did go normal throughout TX, but it did get lower. On that blood work a few wks ago, it was still just over the normal range marker. I heard some people's ALT/AST went down into the teens when they were on the Sovaldi TX and went undetected. There again, didn't happen here. Throughout the years, doing 11 TX's and having Interferon each time, I've compounded post TX side effects and I'm wondering, will my life ever be a 'new' normal? I hope so. I'd love to wake up in the morning and feel rested, refreshed, not achy, not depressed, not feeling like somebody's been punching me in the middle of the night. I've read where some of the people on this board mentioned the continuing brain fog? I feel like I've been in a brain fog for a very long time. Some things do help me with that I've found. Coffee in the AM for one. The Luminosity game on line. Exercise. Being able to look outside and see the sunlight, even if my skin doesn't tolerate being out in the sun...(thanks to all the TX's..), but when I look outside and it's a gray or rainy day out, the brain fog seems to be about 200 times worse. It's like my brain never totally gets awake all day long. I've noticed that the changed in the weather like hot to cold, cold to hot, or pressure changes, also seems to affect how my body feels. Do any of these things have anything to do with post-TX issues? Or are they symptoms of getting older? Or depression (although I don't feel particularly sad and rarely ever cry). Anyhow, I hope I'm welcome on this side of the forums. Susan400
I was thinking about you, I wanted to mention that I remember a couple of other people having their neck checked soon after finishing the Incivek, Workingdog was one, can't remember the other.
I know we have lymph nodes all over the body, don't know about the abdomen so would definitely get it checked out.
Take Care
Dee
I know we have lymph nodes all over the body, don't know about the abdomen so would definitely get it checked out.
Take Care
Dee
yes I had quite swollen lymph nodes around my neck and jaw they went away.I would agree about a visit to the doc re the abdominal lump it does sound like a possible hernia. hope you're feeling a little better.
Hi there, I am so happy that you got to UND, this is so good.
I had a problem under my chin, a lump as you describe. It was found
to be a swollen lymph node. I went for testing, a CT with contrast, I had the swollen lymph node and muscle so had two spots.
I understand not wanting to go to the doctor 100%
I got so sick of going to doctors I really did not want to go but I did. I was sent for the CT scan with contrast.
The lumps did go away. About your abdomen, I don't know, I guess you would need to go to the doctor. :) So sorry.
Take Care, Dee
I had a problem under my chin, a lump as you describe. It was found
to be a swollen lymph node. I went for testing, a CT with contrast, I had the swollen lymph node and muscle so had two spots.
I understand not wanting to go to the doctor 100%
I got so sick of going to doctors I really did not want to go but I did. I was sent for the CT scan with contrast.
The lumps did go away. About your abdomen, I don't know, I guess you would need to go to the doctor. :) So sorry.
Take Care, Dee
Susan glad to see Tx is over and hopefully this will be your finale. Thru my own experiences post Tx, have not really had many problems that were unusual or odd.
As you know depression is very common particularly with the Riba. The hormonal changes effect our body's rhythm, and women tends to have a harder time with adjustment. Our endocrine system has been manipulated and should eventually recover.
Joint swelling and inflammation can have many factors including age. My best advise would be to be aware of events nutritional. Sugar can increase these occurrences and diet is key to recovery.
Am not a med doc but am wondering why you may be having this lumpy feeling in your abdomen. The only thing that comes to mind is perhaps its hernia related. Have not heard of this with the Hep C meds, or the swelling of the jaw line which as you said has improved. Your doc should be made aware because if it is a hernia, lifting is contraindicated and not suggested in the gym. You would not want to aggravate the abdominal wall if this happens to be the diagnosis. Actually from a trainers viewpoint, not more then 5 pounds tops.
Now my last suggestion has to do with the sun. Do know that we both live in South Fla where the sun always shines. Lucky us!!!! Do know the Oyslio is problematic, but with the Tx you took don't think it's a concern. Besides being good for depression and bone strength, the vitamin D from the sun is so important for our overall health. You only have to be in the sun for 20 minutes to reap the amazing rewards from Mother Nature.
Do wish you well on achieving SVR. You deserve to finally clear after so much effort. I do believe this time will be your last.
Best Wishes
.....Kim
As you know depression is very common particularly with the Riba. The hormonal changes effect our body's rhythm, and women tends to have a harder time with adjustment. Our endocrine system has been manipulated and should eventually recover.
Joint swelling and inflammation can have many factors including age. My best advise would be to be aware of events nutritional. Sugar can increase these occurrences and diet is key to recovery.
Am not a med doc but am wondering why you may be having this lumpy feeling in your abdomen. The only thing that comes to mind is perhaps its hernia related. Have not heard of this with the Hep C meds, or the swelling of the jaw line which as you said has improved. Your doc should be made aware because if it is a hernia, lifting is contraindicated and not suggested in the gym. You would not want to aggravate the abdominal wall if this happens to be the diagnosis. Actually from a trainers viewpoint, not more then 5 pounds tops.
Now my last suggestion has to do with the sun. Do know that we both live in South Fla where the sun always shines. Lucky us!!!! Do know the Oyslio is problematic, but with the Tx you took don't think it's a concern. Besides being good for depression and bone strength, the vitamin D from the sun is so important for our overall health. You only have to be in the sun for 20 minutes to reap the amazing rewards from Mother Nature.
Do wish you well on achieving SVR. You deserve to finally clear after so much effort. I do believe this time will be your last.
Best Wishes
.....Kim
Well the swelling in my jaw area went away at least, that's a good thing. Now, for the past 5 days, I've had knee pain and swelling. I saw on here where others were reporting increased joint issues post treatment. I'm hoping it's just from the weather and that it, too, will mysteriously disappear. The lumpy area in left lower abdomen is still there.
Hope everybody has a great Thanksgiving tomorrow.
Susan400
Hope everybody has a great Thanksgiving tomorrow.
Susan400
I am 2 mon. post TX , today, from the Sovaldi, Peg, Riba. 1 mon. to go until my 12 wk post TX viral load.
I've had a couple of odd things crop up since about 1 wk prior to ending the meds (on one of the 2 things). I had a lumpy looking area in my left lower abdomen, but it wasn't at an injection site.., close to an old left over scar, though, from years ago, but I made sure this time to avoid the area immediately around the old scarred area. This lumpy looking area is around the size of a small walnut. I have no ovaries and have had hysterectomy, so we can rule out any female issues like that.., being cause. You can actually see the difference from the other skin and muscles, and hip bones, etc., between that and the lumpy area. In the last week, I also have a painful area underneath my left jaw/close to my chin. I thought at first that maybe it was from inside my mouth, i.e. like a cancer sore, but there is not visualized in there and I can actually feel it from pressing lightly on the outside of my jawbone/chin area. I am just wondering if it's possible that your body reacts in this manner, as it's trying to wean out the meds from your immune system/like your lymph system. I really hate the idea of having to make another doctor's appt. I don't want them to write me off as some kind of a hypochondriac. Have any of you had these weird things happened with like lumpy looking places, post TX? Is so, have they gone away on their own after a few more months? I don't remember anything like this happening on my past post TX experiences, but never cleared on those TX's either and this one I did. Susan400
I've had a couple of odd things crop up since about 1 wk prior to ending the meds (on one of the 2 things). I had a lumpy looking area in my left lower abdomen, but it wasn't at an injection site.., close to an old left over scar, though, from years ago, but I made sure this time to avoid the area immediately around the old scarred area. This lumpy looking area is around the size of a small walnut. I have no ovaries and have had hysterectomy, so we can rule out any female issues like that.., being cause. You can actually see the difference from the other skin and muscles, and hip bones, etc., between that and the lumpy area. In the last week, I also have a painful area underneath my left jaw/close to my chin. I thought at first that maybe it was from inside my mouth, i.e. like a cancer sore, but there is not visualized in there and I can actually feel it from pressing lightly on the outside of my jawbone/chin area. I am just wondering if it's possible that your body reacts in this manner, as it's trying to wean out the meds from your immune system/like your lymph system. I really hate the idea of having to make another doctor's appt. I don't want them to write me off as some kind of a hypochondriac. Have any of you had these weird things happened with like lumpy looking places, post TX? Is so, have they gone away on their own after a few more months? I don't remember anything like this happening on my past post TX experiences, but never cleared on those TX's either and this one I did. Susan400
low dose naltrexone therapy. it sometimes helps greatly with autoimmune disorders, sometimes not.
I had a consult with a "functional medicine" doctor today. She's an MD who has essentially decided she's not drinking the BigPharma kool-aid anymore. She knew about LDN therapy and was very much into "peeling back the onion" to see what's going on.
Maybe you should check one out. I liked her a lot.
Maybe you should check one out. I liked her a lot.
Cerefolin is a Rx supplement used for treating vitamin B12 deficiencies. It's one of the few things proven to slow Alzheimer related dementia and can also have beneficial effects in reversing/arresting peripheral neuropathy. It's compounded with n-acetylcysteine (NAC) which is given to protect the liver in case of Tylenol overdose and can be purchased OTC -- as can B12 for that matter -- but for some reason the Rx compound has beneficial effects beyond what you can get from 'off the shelf' products. Has something to do with being able to cross the 'blood-brain barrier'.
Desrt:
Yes, I remember MKAndrew well! Where is he now and what's he been doing? I actually met him. He came down to FL and met me at Panera Bread.
What is CerefolinNAC (now being called 'Metfolbic RF +' ) and what does it do for you? I guess I could just google it..., unless you have some insight for me.
__
I also just realized I forgot to mention something else. Have any of you (mostly women), had a decrease in your bone density? I posted about this on the other board, but Hep C and the treatments can have a big affect on our bone density. I've been being monitored for osteopenia (precursor to Osteoporosis) for about 7 yrs now. Years ago, during one of my clinical trials, there was a 'add-on trial' at the trial site. The teaching hospital was trying to determine what effect treatment might have on bone density. They did a DEXA scan before starting TX drugs on day 1, then gave me the TX drugs. At the end of 30 days, they did another DEXA scan and there was already a decrease in the bone density on the reading. They did a 3rd on on my 12 wk after end of TX and it hadn't gone back to day 1 yet, at that time, but it did not get any worse since by that time I'd been off TX for the 12 wks. Since then, since I've had the osteopenia all these years, ; I've had to be monitored w/DEXA scans every yrs. My DEXA had improved somewhat, but still osteopenia.., as recently as 2012. Then, I did this recent treatment this past summer and my 2 yr DEXA was due. I had it done about 2 wks ago and there was a big drop again on my numbers. So, now I've been increased on my calcium/Vit. D and told to up my bone bearing exercises. The weird thing is I've been a gym rat for about 7 yrs and go about 5-6 days a week, even though I'm tired as all get out. I even went to the gym during my Sovaldi/Peg/Riba treatment, but I did have to cut back on the intensity on my cardio. I was a bit shocked that I had lost density to that degree. But, I feel sure if I can stay UND, get SVR, that it will improve again.., I can't be getting towards osteoporosis at this age! H*ll, no.., I'm not going there! Not if I have anything to say or do about it! Susan400
Yes, I remember MKAndrew well! Where is he now and what's he been doing? I actually met him. He came down to FL and met me at Panera Bread.
What is CerefolinNAC (now being called 'Metfolbic RF +' ) and what does it do for you? I guess I could just google it..., unless you have some insight for me.
__
I also just realized I forgot to mention something else. Have any of you (mostly women), had a decrease in your bone density? I posted about this on the other board, but Hep C and the treatments can have a big affect on our bone density. I've been being monitored for osteopenia (precursor to Osteoporosis) for about 7 yrs now. Years ago, during one of my clinical trials, there was a 'add-on trial' at the trial site. The teaching hospital was trying to determine what effect treatment might have on bone density. They did a DEXA scan before starting TX drugs on day 1, then gave me the TX drugs. At the end of 30 days, they did another DEXA scan and there was already a decrease in the bone density on the reading. They did a 3rd on on my 12 wk after end of TX and it hadn't gone back to day 1 yet, at that time, but it did not get any worse since by that time I'd been off TX for the 12 wks. Since then, since I've had the osteopenia all these years, ; I've had to be monitored w/DEXA scans every yrs. My DEXA had improved somewhat, but still osteopenia.., as recently as 2012. Then, I did this recent treatment this past summer and my 2 yr DEXA was due. I had it done about 2 wks ago and there was a big drop again on my numbers. So, now I've been increased on my calcium/Vit. D and told to up my bone bearing exercises. The weird thing is I've been a gym rat for about 7 yrs and go about 5-6 days a week, even though I'm tired as all get out. I even went to the gym during my Sovaldi/Peg/Riba treatment, but I did have to cut back on the intensity on my cardio. I was a bit shocked that I had lost density to that degree. But, I feel sure if I can stay UND, get SVR, that it will improve again.., I can't be getting towards osteoporosis at this age! H*ll, no.., I'm not going there! Not if I have anything to say or do about it! Susan400
hi Susan,yes also have the same weather issues,just going into winter here,lots of stormy weather dark and cold,not good. Also have the terrible fatigue,insomnia,pain,brain fog same same.Can't imagine what you've been through-11 treatments-wow-I only did 24weeks! I also hope this is the one for you.November is when I finished treatment 8 years ago,expecting to bounce back...Welcome to the club
Hi Susan, it's an open forum. Yes to all I am post treatment June 27 with a SVR and am no better other than no virus.
I am now on meds to deal with HE the brain fog, Lactulose and and antibiotic xifaxan. It takes time to get used to Lactulose, I'm still trying to find magic dose that works.
Re the weather, I think b/c I do not feel good, the weather, sun vs cold wet rain does affect me more than it ever did. The one thing I had hoped would be gone is still very with me and that's raynaud's syndrome, where I loose circulation in fingers and toes in extreme cold. I have fingerless glove I can wear and pull down during the summer for crazy air on and leather lined with cashmere gloves for now, our first cold front.
I have had some periods (days) of time that I thought I was feeling better, then wham, not so good. I made a huge mistake with my diet and am trying to undo that. I am vegetarian and thought I needed some protein for health....seems I need a minimal amount. Whenever I had a protein bar it shake, I had horrible liver pain....no hep c virus!
So I'm learning about the new problems that had just started before I began S&O, cirhossis symptoms! I have on my profile a liver toolkit link that explains these things that you probably should read and then discuss with your doc...then they can decide if you need meds for any damage done by the liver. I am still not past the weirdness of S&O...I've been told that takes time. I am super sensitive, so my doc told me another 6-8 months.
I'm starting to get upset because I thought no hep c and all would be great. Nope, reality check the virus that got all this going is no longer, but the damage is permanent. Although, I've heard if you stick with a healthy plan, 2-7 years and you could be a bit more improved.
Keeping up with all this, work, and meds can wear one down--it has me. I'm hoping with time I'll adjust mentally and physically. Right now, I just make doc spots, some grocery store stuff (in & out as fast I can), and work which is 2-3 days a week and then online sporadic-I've been known to forget a lot of stuff (except meds), and my memory is not good at all. I have no concept of time or days to weeks. In 6 months I have another MRI and cognitive testing.
There you have it, and welcome. There are some people on this forum who are now my role models. They have helped a lot!
Best, dbzc
I am now on meds to deal with HE the brain fog, Lactulose and and antibiotic xifaxan. It takes time to get used to Lactulose, I'm still trying to find magic dose that works.
Re the weather, I think b/c I do not feel good, the weather, sun vs cold wet rain does affect me more than it ever did. The one thing I had hoped would be gone is still very with me and that's raynaud's syndrome, where I loose circulation in fingers and toes in extreme cold. I have fingerless glove I can wear and pull down during the summer for crazy air on and leather lined with cashmere gloves for now, our first cold front.
I have had some periods (days) of time that I thought I was feeling better, then wham, not so good. I made a huge mistake with my diet and am trying to undo that. I am vegetarian and thought I needed some protein for health....seems I need a minimal amount. Whenever I had a protein bar it shake, I had horrible liver pain....no hep c virus!
So I'm learning about the new problems that had just started before I began S&O, cirhossis symptoms! I have on my profile a liver toolkit link that explains these things that you probably should read and then discuss with your doc...then they can decide if you need meds for any damage done by the liver. I am still not past the weirdness of S&O...I've been told that takes time. I am super sensitive, so my doc told me another 6-8 months.
I'm starting to get upset because I thought no hep c and all would be great. Nope, reality check the virus that got all this going is no longer, but the damage is permanent. Although, I've heard if you stick with a healthy plan, 2-7 years and you could be a bit more improved.
Keeping up with all this, work, and meds can wear one down--it has me. I'm hoping with time I'll adjust mentally and physically. Right now, I just make doc spots, some grocery store stuff (in & out as fast I can), and work which is 2-3 days a week and then online sporadic-I've been known to forget a lot of stuff (except meds), and my memory is not good at all. I have no concept of time or days to weeks. In 6 months I have another MRI and cognitive testing.
There you have it, and welcome. There are some people on this forum who are now my role models. They have helped a lot!
Best, dbzc
A huge welcome and a big 'Well Done'. :-)
I remember mkandrew mentioning you as 'the other Susan' (along with SusieS) 10+ years ago and think you may have actually passed them in number of txs. That was back in the day when Miles was still blogging, before I'd joined hepcassoc.org, and hepcesn.net was still around. A long, strange trip indeed.
Talk to your doc about CerefolinNAC (now being called 'Metfolbic RF +' ) for the brain fog, and again, a huge Congrats :-) :-) :-)
I remember mkandrew mentioning you as 'the other Susan' (along with SusieS) 10+ years ago and think you may have actually passed them in number of txs. That was back in the day when Miles was still blogging, before I'd joined hepcassoc.org, and hepcesn.net was still around. A long, strange trip indeed.
Talk to your doc about CerefolinNAC (now being called 'Metfolbic RF +' ) for the brain fog, and again, a huge Congrats :-) :-) :-)
Of course you are welcome. Like Frank I can also fell the weather change, in physical and mental ways.
When it is Spring I am so uplifted feel so good. I have noticed if I keep moving I feel better. Not that I am getting a lot done. I have half finished projects all over my home. What a mess.
I hope that for you time will see you improve. I am also hoping that this tx was the one that finally finally did it for you.
Again, welcome
Dee
When it is Spring I am so uplifted feel so good. I have noticed if I keep moving I feel better. Not that I am getting a lot done. I have half finished projects all over my home. What a mess.
I hope that for you time will see you improve. I am also hoping that this tx was the one that finally finally did it for you.
Again, welcome
Dee
Of course you are welcome Susan400
I also feel the weather change a lot. The weather here in PA is so changeable over the last few years. It doesn't know if it wants to be summer or winter then it hits like crazy! I do have a lot of light bulbs that are suppose to be closer to sunlight. Those are getting cheaper and easily available on Amazon.
Unfortunately I am on a few medications to help out with the PIS which helps with the overwhelming fatigue, insomnia, anxiety, nerve pain, etc. I do hope to order LDN from Thailand very soon which could be the cure-all for the reduction of inflammation which seems to be the cause of many of the issues from TX!
November is the time that reminds me that I started my ONE and only TX and it has been now 11 years ago that has passed. 72 weeks of hell. BUT OMGoodness... 11 Interferon TXs is so overwhelming for me to think about! You are one strong Susan400!
Even though thinking and being positive takes a lot of energy it does seem to help!
Welcome to the club, frank
I also feel the weather change a lot. The weather here in PA is so changeable over the last few years. It doesn't know if it wants to be summer or winter then it hits like crazy! I do have a lot of light bulbs that are suppose to be closer to sunlight. Those are getting cheaper and easily available on Amazon.
Unfortunately I am on a few medications to help out with the PIS which helps with the overwhelming fatigue, insomnia, anxiety, nerve pain, etc. I do hope to order LDN from Thailand very soon which could be the cure-all for the reduction of inflammation which seems to be the cause of many of the issues from TX!
November is the time that reminds me that I started my ONE and only TX and it has been now 11 years ago that has passed. 72 weeks of hell. BUT OMGoodness... 11 Interferon TXs is so overwhelming for me to think about! You are one strong Susan400!
Even though thinking and being positive takes a lot of energy it does seem to help!
Welcome to the club, frank
Have an Answer?
You are reading content posted in the Hepatitis C: Post Treatment Issues Community
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
