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The Long-Term Side Effects after Tx Thread, for all
I wanted to post a thread that could serve as a main point of communication for all of us who have treated and suffered serious, life altering side effects AFTER finishing therapy. Hopefully questions, issues, personal experiences, and the feedback each of us has received from doctors can all be a part of this thread. There seem to be two or three new separate threads each week relating to this subject, and I am not sure anyone gets the benefit of the postings on all of the related threads. Maybe we can each use THIS thread to deal with this subject, and then all the inputs might be accessible to everyone interested, all on one single thread. It also would be a good way to get a better idea of the numbers of us affected by this problem. And specifically this thread pertains only to side effects experienced AFTER completing tx, that were NOT apparent before doing the therapy.
Feel free to comment, ask questions, or state your own personal experience with this issue. And lurkers out there, who have not joined in the forum conversations, please do feel free to jump right in. It would be very helpful for all of the affected group to be able to compare notes, and connect with people who have a similar challenge.
Feel free to comment, ask questions, or state your own personal experience with this issue. And lurkers out there, who have not joined in the forum conversations, please do feel free to jump right in. It would be very helpful for all of the affected group to be able to compare notes, and connect with people who have a similar challenge.
none of the talk helps if no one in the medical field can help with the problem! What people want is to feel whole again and talking does nothing
It is difficult to get tested on magnesium since the plasma levels are usually very stable.
There was however one value in my case that was always way below the reference range. It was alkaline phosphatase, but since it often happens together with hypothyroidism I thought that it is due to that and to be honest I didn't know that there is a connection between magnesium deficiency and low alkaline phosphatase.
I went back to my blood tests of alpha-Interferone plus Ribavirin therapy and I can literally see how the alkaline phosphatase was decreasing with each month... it still is very low in my case.
Just google "alkaline phosphatase magnesium deficiency"
If you have your blood tests, maybe you got tested on this as well. It could be an hint on the direction to look at.
There was however one value in my case that was always way below the reference range. It was alkaline phosphatase, but since it often happens together with hypothyroidism I thought that it is due to that and to be honest I didn't know that there is a connection between magnesium deficiency and low alkaline phosphatase.
I went back to my blood tests of alpha-Interferone plus Ribavirin therapy and I can literally see how the alkaline phosphatase was decreasing with each month... it still is very low in my case.
Just google "alkaline phosphatase magnesium deficiency"
If you have your blood tests, maybe you got tested on this as well. It could be an hint on the direction to look at.
I believe this thread was started for the purpose of sharing information and questions having to do with long term side effects that some individuals have encountered post treatment. Perhaps you should start a thread for those who have not had any post tx long-term side effects rather than posting here where your point is questionable.
Hi!
New to the site. I have been a member of another Hep C on line forum for quite a while but talking about long term side effects is kind of taboo there. I get it, we need to encourage people to treat, stay on treatment and beat this nasty disease. I met Willy at a retreat and he told me to check out your site so here I am.
I had acute Hep C in May of 2010, geno 1a, was very sick (liver enzymes were over 1000 both AST and ALT) Doc pushed for me to do treatment, started in June, finished in November of 2010 and am SVR and YES,,,, very grateful to be able to say that!!!!!
Down side is my body has acted like it never went off treatment, typical stuff everyone else has mentioned, joint pain, muscle pain, muscle weakness, fainting/collapsing, vitamin deficiencies, bone pain, headaches, migraines and extreme fatigue. I too saw my gastroenterologist 6 months post treatment to be told my persistent symptoms could not be related to treatment. So my primary sent me to one specialist after another with no answers. I just got back from the Mayo Clinic. The hepatologist said yes we see long term side effects and sent me to their rheumatologist. He said the best diagnosis he could give me and treat for is interferon induced fibromyalgia. I just received my letters from both doctors for my medical records and both doctors state that although the eitiology of my symptoms may be unknown they cause may be due to treatment with interferon/ribavirin. So I feel a bit more validated...finally... but a bit confused...
I have read all the posts and wow there was a lot of them here on the long term side effects and some mentioned signing a consent form. How many of you guys actually signed a consent form? How many of your doctors discussed the possibility of long term effects? I do not feel as a patient I should have to go on line to find out about this later, my doctor has an ethical obligation to provide me all the information for me to be able to provide an informed consent. She basically said I had no option, I needed to treat, most patients work (90%) through treatment and if you have side effects you are usually back to normal within a couple months. I was given a side effects sheet from them, which really down played them and was sent my meds, that was it. I did not learn till I was in to it and got on line. Before my child is given a vaccine my primary gives me a sheet a reviews all the benefits and risks even if the risks are only 1% of the population and I have to sign a consent form. I am confused as to why this did not happen. I downloaded a consent form from the gastroenterology group in Northern California and it states in bold letters for their patients some sidef effects are irreversible, are they the exception to the rule, or did someone file a lawsuit and they decided to cover their butts from now on?
I am grateful to be SVR, grateful every day, but considering I was acute, and did not have any liver damage and interferon free trials were on the horizon I may have waited, got myself through the acute phase. I don't know. But at least if I still pursued treatment I would have been prepared, maybe put some money aside, paid off some bills while I was working as I am on disability and unable to work now. Hindsight is always 20/20.
I would never discourage someone from treating, I would never want to die from Hep C or wish that on anyone. I just do not understand the lack of information, informed consent is part of law and as a medical professional myself I believe in first do no harm and my doctor did not fulfill her ethical responsibility.
Phew.... got that off my chest !!! Thanks!!! And yes, I am thinking of pursuing legal action, it may go absolutely nowhere but maybe someone will take my case and my doctor will at the very least get rattled enough to inform the next patient so that patient can make the best decision for his or her individual situation. Seriously, if someone can sue McDonalds for hot coffee that burns them and win... well one can try....
New to the site. I have been a member of another Hep C on line forum for quite a while but talking about long term side effects is kind of taboo there. I get it, we need to encourage people to treat, stay on treatment and beat this nasty disease. I met Willy at a retreat and he told me to check out your site so here I am.
I had acute Hep C in May of 2010, geno 1a, was very sick (liver enzymes were over 1000 both AST and ALT) Doc pushed for me to do treatment, started in June, finished in November of 2010 and am SVR and YES,,,, very grateful to be able to say that!!!!!
Down side is my body has acted like it never went off treatment, typical stuff everyone else has mentioned, joint pain, muscle pain, muscle weakness, fainting/collapsing, vitamin deficiencies, bone pain, headaches, migraines and extreme fatigue. I too saw my gastroenterologist 6 months post treatment to be told my persistent symptoms could not be related to treatment. So my primary sent me to one specialist after another with no answers. I just got back from the Mayo Clinic. The hepatologist said yes we see long term side effects and sent me to their rheumatologist. He said the best diagnosis he could give me and treat for is interferon induced fibromyalgia. I just received my letters from both doctors for my medical records and both doctors state that although the eitiology of my symptoms may be unknown they cause may be due to treatment with interferon/ribavirin. So I feel a bit more validated...finally... but a bit confused...
I have read all the posts and wow there was a lot of them here on the long term side effects and some mentioned signing a consent form. How many of you guys actually signed a consent form? How many of your doctors discussed the possibility of long term effects? I do not feel as a patient I should have to go on line to find out about this later, my doctor has an ethical obligation to provide me all the information for me to be able to provide an informed consent. She basically said I had no option, I needed to treat, most patients work (90%) through treatment and if you have side effects you are usually back to normal within a couple months. I was given a side effects sheet from them, which really down played them and was sent my meds, that was it. I did not learn till I was in to it and got on line. Before my child is given a vaccine my primary gives me a sheet a reviews all the benefits and risks even if the risks are only 1% of the population and I have to sign a consent form. I am confused as to why this did not happen. I downloaded a consent form from the gastroenterology group in Northern California and it states in bold letters for their patients some sidef effects are irreversible, are they the exception to the rule, or did someone file a lawsuit and they decided to cover their butts from now on?
I am grateful to be SVR, grateful every day, but considering I was acute, and did not have any liver damage and interferon free trials were on the horizon I may have waited, got myself through the acute phase. I don't know. But at least if I still pursued treatment I would have been prepared, maybe put some money aside, paid off some bills while I was working as I am on disability and unable to work now. Hindsight is always 20/20.
I would never discourage someone from treating, I would never want to die from Hep C or wish that on anyone. I just do not understand the lack of information, informed consent is part of law and as a medical professional myself I believe in first do no harm and my doctor did not fulfill her ethical responsibility.
Phew.... got that off my chest !!! Thanks!!! And yes, I am thinking of pursuing legal action, it may go absolutely nowhere but maybe someone will take my case and my doctor will at the very least get rattled enough to inform the next patient so that patient can make the best decision for his or her individual situation. Seriously, if someone can sue McDonalds for hot coffee that burns them and win... well one can try....
I was off TX for 1 1/2 years and now I am starting another round. During that time, I had my knees checked and was diagnosed with cacification in my knees, which makes sense because I had been so inactive AND was taking Boniva for bone loss. So I did physical therapy, then began yoga classes and took glucosamine. It worked really well for me.
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