Aa
long term after effects post interferon
My last interferon injection was 12 months ago. I feel tired, lethargic, my bones ache in the morning esp in my feet. I'm in bed asleep by 10-30....and now i've developed a fissula, a perenanal abcess. My doctor thinks it may be because since the interfeon my immune system is v.low to warding off infections.
Are these symptoms shared by others.
Are these symptoms shared by others.
@maie13
If you can financially afford it find a good naturopath. I was offered therapy by someone before I started Interferon. At that time I was indoctrinated quite well and wanted to get the best modern treatment. I never imagine that it would change my life forever. I don't now much about the newer treatments. Maybe they are better, maybe they are not. Wait for ten years and see what people tell then...
Support your immune system. Vitamin A is essential in viral immune response as well as in cell differentiation. In order for Retinol to have therapeutical effects you probably will need high doses. You will need a doctor who can help you with dosing and monitor your liver function as in high doses Vitamin A can also be liver toxic and you liver is already affected by the virus.
Homeopathy and naturopathy are not the same things. Nature is powerful and our bodies are most powerful in healing themselves. I personally don't believe in homeopathy.
When I started treatment there was the "miracle" of those people that had antibodies but no viruses anymore. At that time it was said that the antibodies remain in the body troughout life. Well, now they found out that it is not true. Even the antibodies response of our bodies can be deleted.
http://www.nature.com/nm/journal/v6/n5/full/nm0500_578.html
However, it probably depends on how much your liver is already affected. I wouldn't know what to recommend, but probably I myself would for one or two or three years try alternative therapies first.
If you can financially afford it find a good naturopath. I was offered therapy by someone before I started Interferon. At that time I was indoctrinated quite well and wanted to get the best modern treatment. I never imagine that it would change my life forever. I don't now much about the newer treatments. Maybe they are better, maybe they are not. Wait for ten years and see what people tell then...
Support your immune system. Vitamin A is essential in viral immune response as well as in cell differentiation. In order for Retinol to have therapeutical effects you probably will need high doses. You will need a doctor who can help you with dosing and monitor your liver function as in high doses Vitamin A can also be liver toxic and you liver is already affected by the virus.
Homeopathy and naturopathy are not the same things. Nature is powerful and our bodies are most powerful in healing themselves. I personally don't believe in homeopathy.
When I started treatment there was the "miracle" of those people that had antibodies but no viruses anymore. At that time it was said that the antibodies remain in the body troughout life. Well, now they found out that it is not true. Even the antibodies response of our bodies can be deleted.
http://www.nature.com/nm/journal/v6/n5/full/nm0500_578.html
However, it probably depends on how much your liver is already affected. I wouldn't know what to recommend, but probably I myself would for one or two or three years try alternative therapies first.
2 Comments
Frieda1979 - while I certainly agree with you about homeopathy (I think most people don't even know what it is - wikipedia has a fantastic article on it including this from the experts "Modern advocates of homeopathy have proposed a concept of "water memory", according to which water "remembers" the substances mixed in it, and transmits the effect of those substances when consumed."!
I don't believe that a naturopathy doc can help me at this point. Before treatment having destroyed my life acupuncture was effective but after many months of to see if it would help my ancient Chinese doc said that Western medicine was too strong for his needles!
I have a new GP who is more of an Integrated doc who I was very impressed with. I will be looking to him for new test to run as for the most part all my test come back within normal ranges (except for various iron levels which fluctuates between severely LOW to crazy HIGH!)
I don't believe that a naturopathy doc can help me at this point. Before treatment having destroyed my life acupuncture was effective but after many months of to see if it would help my ancient Chinese doc said that Western medicine was too strong for his needles!
I have a new GP who is more of an Integrated doc who I was very impressed with. I will be looking to him for new test to run as for the most part all my test come back within normal ranges (except for various iron levels which fluctuates between severely LOW to crazy HIGH!)
Fluctuating iron might be a consequence of inflammatory processes in your body.
Vitamin A is important for keeping off infection and also for storing iron in the body.
Another nutrient that is related to this is Zinc. It acts antiinflammatory and it is needed for building the proteins that store Vitamin A in the body.
Both, Zinc and Vitamin A are depleted during interferon treatment.
Look at
https://www.ars.usda.gov/ARSUserFiles/80400530/pdf/0910/Table_1_NIN_GEN_09.pdf
You will see that probably the biggest part of the population in the US is eats roughly half of Vitamin A in their diet than the RDA recommend, which is 900µg.
Check the articles I have posted in my comment below. Chances are low, that one will compensate such a bis "disturbance" of a biological system by "normal" eating alone.
Hep C treatment is chemotherapy. But people are left alone with their side effects and symptoms. There would be many ways to help peoples bodies do recover from a) the infection by the virus and b) the treatment itself.
And... Supplementing vitamins and minerals is not homeopathy but hard biochemical facts :)
Did the test show any results?
And on a side note, after five years of struggling with synthroid dosage and all the supplements I take, I finally start to feel good again. I think each of us bring sa different vulnerability with him. I can tell what helped me, but I don't know what exactly the condition of the other person is. There are however studies and publications as the ones I posted below that can at least hint into several directions.
Our bodies have an amazing plasticity. They have the ablity to recover to at least some extend, if we give them what they need.
Vitamin A is important for keeping off infection and also for storing iron in the body.
Another nutrient that is related to this is Zinc. It acts antiinflammatory and it is needed for building the proteins that store Vitamin A in the body.
Both, Zinc and Vitamin A are depleted during interferon treatment.
Look at
https://www.ars.usda.gov/ARSUserFiles/80400530/pdf/0910/Table_1_NIN_GEN_09.pdf
You will see that probably the biggest part of the population in the US is eats roughly half of Vitamin A in their diet than the RDA recommend, which is 900µg.
Check the articles I have posted in my comment below. Chances are low, that one will compensate such a bis "disturbance" of a biological system by "normal" eating alone.
Hep C treatment is chemotherapy. But people are left alone with their side effects and symptoms. There would be many ways to help peoples bodies do recover from a) the infection by the virus and b) the treatment itself.
And... Supplementing vitamins and minerals is not homeopathy but hard biochemical facts :)
Did the test show any results?
And on a side note, after five years of struggling with synthroid dosage and all the supplements I take, I finally start to feel good again. I think each of us bring sa different vulnerability with him. I can tell what helped me, but I don't know what exactly the condition of the other person is. There are however studies and publications as the ones I posted below that can at least hint into several directions.
Our bodies have an amazing plasticity. They have the ablity to recover to at least some extend, if we give them what they need.
You seriously believe that you ending it will bring your parents peace??? This Post Interferon thing is cyclical or so I have found. If you overdo it you end up crashing and then the depression sets in but if you ride it out it passes.I have simplified my life as much as possible but any stress/overdoing it will kick me off into the cycle again. Please try to ride it out and if you don't have to see your parents every day,see them on the positive days and put a happy face on for them if at all possible.Don't forget,you are not alone in the "bubble" and we all understand how you are feeling at the moment. I have found calling the Hepatitis C Trust for a post treatment chat really helpful at times of deepest distress,they have all been through treatment and are good people.
I was treated in 2014 with PEG, Riba and Sovaldi for 12 weeks and have never been the same. I lost my skills on the guitar and my love for music and musicmaking. then i lost my friends because they all were musicians.
I was really good looking and loved to go out and socialize. after treatment i began to age at an unbelievable fast rate and stopped to go out because i shamed for myself in social situations because i stumble over words all the time, don't feel anything for other people and my skin is covered with a rash since treatment, forget everything etc...) so.. I changed from a good looking, happy and skillful 25 year old musician and programmer into an ugly, desperate, lonely, dumb and untalented 27 year old. thank you Roche.
I was really good looking and loved to go out and socialize. after treatment i began to age at an unbelievable fast rate and stopped to go out because i shamed for myself in social situations because i stumble over words all the time, don't feel anything for other people and my skin is covered with a rash since treatment, forget everything etc...) so.. I changed from a good looking, happy and skillful 25 year old musician and programmer into an ugly, desperate, lonely, dumb and untalented 27 year old. thank you Roche.
I was on pegintron and Ribavirin in 2003. I never fully recovered from the treatment. I guess that both drugs stress the whole endocrine system. It is not only the virus which is attacked but the drugs induce changes in the whole body/endocrine system. For me the key point of getting better was to get a treatment for the thyroid. From various symptoms I know now that I was hypothyroid since interferon, but at that there wasn't a single thyroid test.
I don't know who else expereinced this, but e.g. in the time of the treatment I was wetting my bed almost every night, I had herpes outbreaks almost every day and it was terrible. I also lost my hair and 10kg within the first month. All these side effects show how deeply the treatment effects/interacts with the endocrine system.
One possible explanation is that by creating a state of high immune system response to the virus our bodys are running 125 miles per hour for half a year while we don't add more fuel - in the sense of more nutrients.
E.g. when you smoke the nicotine "forces" the adrenal glands to produce more cortisol than your body would produce under normal circumstances. Nicotine also forces your brain to produce more dopamine than it would do normally without the external trigger nicotine. Now it is only chemical reactions in your brain and adrenal glands that create dopamine/cortisol. For these chemical reactions you need e.g. Vitamin C. If you now constantly overuse these pathways by smoking but at the same time don't add Vit C to your daily intake of whatever it will lead to a Vitamin C depletion in the body.
Similar is probably true for interferon treatment. The interferon triggers a strong immune system response and since it is itself a strong external stimulation it will make many resources go that path towards fighting against the virus. Ribavirin has "hypomagnesemia" listed as adverse effect.
But these nutrients will then be missing at other places. It will take some time to restore the balance. It takes time to detox after the treatment. It will also take time until the body has restored it's balance. This is a strongly simplified view on the action of interferon, but it is one part of the whole process and it is the part that we can influence.
But if you don't know all this - and I certainly didn't in 2003 - you might think it is just a matter of time and compensate the tiredness by e.g. drinking more coffee and smoking. But this can increase the imbalance. If there is a thyroid condition as well the body will absorb even less nutrients since the metabolism is slowed down.
If you eat high carb and sugar then your metabolism will need even more magnesium, since it is needed for glycolisation and so on...
I don't know if this will help anyone reading this but by taking thyroid medication and refilling depleted iron, Vitamin C, Vitamin D, Magnesium, and B Vitamins and so on my condition improved a lot in the last two years. I was suffering since the treatment for almost 13 years and I was close to loosing everything since I simply couldn't function anymore. Now I don't have brain fog anymore, by back doesn't hurt in the morning when I get up, I feel joy and energy again, my depression had gone. I didn't get much help from doctors. They told me I am simply stressed and wanted to give me antidepressants. So I was doing research on my own.
Don't think that small amounts of Vitamins will help to restore the balance.
Feel free to ask questions. I don't know if this is the right path, but I know that I feel so much better. I started to recognize myself again. Our bodies are designed to life and I believe that if we give them all they need they will be able to restore the balance.
Get your thyroid tested and if you can afford it get the nutrients tested. If you can't then you have to do trial and error. Which is what I did for most.
I don't know who else expereinced this, but e.g. in the time of the treatment I was wetting my bed almost every night, I had herpes outbreaks almost every day and it was terrible. I also lost my hair and 10kg within the first month. All these side effects show how deeply the treatment effects/interacts with the endocrine system.
One possible explanation is that by creating a state of high immune system response to the virus our bodys are running 125 miles per hour for half a year while we don't add more fuel - in the sense of more nutrients.
E.g. when you smoke the nicotine "forces" the adrenal glands to produce more cortisol than your body would produce under normal circumstances. Nicotine also forces your brain to produce more dopamine than it would do normally without the external trigger nicotine. Now it is only chemical reactions in your brain and adrenal glands that create dopamine/cortisol. For these chemical reactions you need e.g. Vitamin C. If you now constantly overuse these pathways by smoking but at the same time don't add Vit C to your daily intake of whatever it will lead to a Vitamin C depletion in the body.
Similar is probably true for interferon treatment. The interferon triggers a strong immune system response and since it is itself a strong external stimulation it will make many resources go that path towards fighting against the virus. Ribavirin has "hypomagnesemia" listed as adverse effect.
But these nutrients will then be missing at other places. It will take some time to restore the balance. It takes time to detox after the treatment. It will also take time until the body has restored it's balance. This is a strongly simplified view on the action of interferon, but it is one part of the whole process and it is the part that we can influence.
But if you don't know all this - and I certainly didn't in 2003 - you might think it is just a matter of time and compensate the tiredness by e.g. drinking more coffee and smoking. But this can increase the imbalance. If there is a thyroid condition as well the body will absorb even less nutrients since the metabolism is slowed down.
If you eat high carb and sugar then your metabolism will need even more magnesium, since it is needed for glycolisation and so on...
I don't know if this will help anyone reading this but by taking thyroid medication and refilling depleted iron, Vitamin C, Vitamin D, Magnesium, and B Vitamins and so on my condition improved a lot in the last two years. I was suffering since the treatment for almost 13 years and I was close to loosing everything since I simply couldn't function anymore. Now I don't have brain fog anymore, by back doesn't hurt in the morning when I get up, I feel joy and energy again, my depression had gone. I didn't get much help from doctors. They told me I am simply stressed and wanted to give me antidepressants. So I was doing research on my own.
Don't think that small amounts of Vitamins will help to restore the balance.
Feel free to ask questions. I don't know if this is the right path, but I know that I feel so much better. I started to recognize myself again. Our bodies are designed to life and I believe that if we give them all they need they will be able to restore the balance.
Get your thyroid tested and if you can afford it get the nutrients tested. If you can't then you have to do trial and error. Which is what I did for most.
One more thing i keep reading people say that side effects will go away after treatment.....Guess who says this?...People who never treated....So if your one of these please don't offer advice if you have no clue about treatment.....anyone can can e-mail me at ***@**** to talk about treatment...or post treatment
2 Comments
i agree 100%
I would be glad to share some own experience. ***@****
I just found this article
http://www.ncbi.nlm.nih.gov/pubmed/19042060
another nutrient that is depleted during Hep C and interferone treatment is zinc.
As well as Vitamin A
http://www.ncbi.nlm.nih.gov/pubmed/7196691
Good luck to everyone! Don't give up, even after 13 years our bodies have the ability to recover if we provide them with the nutrients they need.
http://www.ncbi.nlm.nih.gov/pubmed/19042060
another nutrient that is depleted during Hep C and interferone treatment is zinc.
As well as Vitamin A
http://www.ncbi.nlm.nih.gov/pubmed/7196691
Good luck to everyone! Don't give up, even after 13 years our bodies have the ability to recover if we provide them with the nutrients they need.
1 Comments
I've been on interferon for just coming up to 12 months. Since November I had been experiencing quite a lot of symptoms so end of this year I thought it would be best for me to stop taking the injection treatment and go back to the previous treatment I was on hydroxicarbomide. I was developing hair loss, pale skin, derealisation, muscle pain and weakness, numbness conjunctivitis, A cough which continued for a while - dry skin. It's currently week 3 of being off interferon and my haematologist had just put me back on the hydroxi - My platelets had crept up to 795 from 535 which was only 3 weeks ago so a massive jump when I wasn't on any treatment. The Interferon treatment I found wasn't really controlling my platelets as well as Hydroxi which in my opinion is a better treatment. At the moment weening off one drug and taking another I have developed pins and needles all over my body which is constant currently, increased sensitivity to hold and cold, burning sensation, crawling/itching, prickling. When I first started the treatment I seemed fine but after 9 months it just seemed to get worse. The reason for me coming off the old treatment was that I wanted to get pregnant but now my plans have changed. I'm just hoping that I can solider on and that the symptoms will go. But reading on here that may not be the case - unless it's a long process - Have found I've had to be patient but sometimes It can get quite frustrating. Would love to hear from anyone that's been though the same type of symptoms.
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