Feel lousy, yet was "cured " wth Iterferon many years ago
Has anyone on here with post Interferon related symptoms tried a supplement called Longvida Curcumin at a dosage of at least 6 grams daily (divided dosages)? This is the only bioavailable form of Curcumin I am aware of that achieves favorable pharmacokinetics. I am not trying to sell this product, I am just curious as it may in theory stop some changes that may take place upon long-term exposure to the drug I am student researcher, very interested in mechanisms that may underpin persistence of IFN therapy associated symptoms.
im having the same problem after 8 years family tells me im not the same person would love to find happiness again
Hi thank you for the article, it was really good. I wish they would come up with something to help.
I did the treatment about 9 years ago. I went through hell and I have been trying to get back on an even keel since. I had a retinal eye tear and my sight has steadily got worse. I had major mental health issues, psychosis , depression etc and now have been diagnosed as been bipolar. I also being suffering gastro problems. These are all known side effects.
even though supposedly clear of Hep C I wish I had never done the treatment .
So sorry to hear about your experience. The human body is so complicated and ramping up one's immune system for months on end can do so much damage to so many things, and we are not all the same. The bottom line is that there must be a reason for the horrendous and debilitating symptoms, and good investigative doctors are rare, not to mention that searching for them is so expensive. Of course mental and emotional issues will follow not being well for years with no remedies, and in fact some diseases in and of themselves cause the mental issues. I hope you can keep searching and find some better state of health.
I don't know if you will read this, since your post is half a year old. But maybe it will be also of help to somebody else...
Did you know that after Interferon therapy there are quite a number of people that develop hypothyroidism? It was the case for me and I recognise many of the problems that you describe... After Interferon therapy it is often subclinical hypothyroidism which means increased TSH (moderate to severe) value, while the hormones FT3 and FT4 are still within the normal reference range.
You should check for TSH, FT3 and FT4.
In my case it took doctors more than 12 years to diagnose the hypothyroidism. Now with all the knowledge that I have about blood values related to hypothyroidism I can see that one could have diagnosed the hypothyroidism much earlier and avoid a lot f struggle in my life.
Don't give up, and don't forget, that interferone therapy, as well as drugs and certain medications are big stress to our bodies and brains. So check on your mineral and vitamin statuses, such as iron, selenium, Vitamin D, Magensium, Vitamin A, Vitamin B12 and so on... even if you are not hypothyroid, with all the things that happened to you and your body in the last years you could have lacks in several nutritients and that will make psychological recovery so much more difficult, since e.g. without the appropriate amount of iron your body will not be able to produce dopamine, and thus lack of iron will inevitably result in apathy and depression... If you took drugs, then you know the effect dopamin has on the mind.
Take care and don't give up!!!
I finished my treatment 29 of May 2014, one year ago. I have pain everywhere in my body, shoulder, hip,neck,TSH jumping up and down,I am so tired of all this. Just wondering if I ever feel better...I so much suffer, I hope one day all this post treatment side effects leave my body and I will be able to enjoy my life.
Hep C treatment in 2008 made me permanently sick, drastically and permanently impaired my liver function, caused me to spend my life savings while utterly fatigued and unable to get out of bed for three years, addled my brain, and almost certainly shortened my life.
At least it cured me of western medicine.
Scottie, I feel for you.I am 14 months post and not functioning
well either but still hoping that it could change tomorrow.
Trying the natural methods...raw foods,juice and supplements.
Cannot do harm. Keep on keeping on and best wishes to you.
Hi all, just stopping by for a minute and I saw a post that Socrates18016 wrote in May 2010. I had never read it before. It really hit home for me.
What he wrote struck me so much I wanted to point it out to others who are still having problems post interferon
Good luck to all
Ribavirin especially with Interferon, can contribute to osteoporosis I am just finding out, in both women and men, so if your bones feel like they are aching, asked for a bone density scan. Just sayin ...
2000 Interferon w/Ribavirin and in 2010 pegyast w/Ribavirin....I'll make this short....pretreatment i was 37 years old bench pressed over 300 pounds. Was kind of a health nut. Worked as a mechanic 10-12 hours a day..felt great.Opened my own shop and was doing great.2006 it hit me and stopped me dead in my tracks one morning,went to dr. pain meds back to work.Long story short had to quit working any and since have been DX with...SLE Lupus,RA,Sjogrens,Fibro.,Throid problems,many back and cervical problems and the number one......Chronic Pancreatitis which is at least 10 times worse then treatment and hep. C combined...I wished i would have smart enough back then to do my own research on treatment.....God help us all.....and i just hope any who have treated the best of luck.....
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
I had taken many treatments of interferon. I am now free of Hepatitis C because of Harvoni. Just never recovered from interferon. Since 2007 after being on interferon for 2 years, if brought me down so far that I have never been able to come back up with my energy. The fatigue some days is unbearable. It is difficult to get out of bed before noon on most days. Have to make myself get up and getting on the treadmill usually helps. Keep wishing that that this will go away but after seeing everyone's post I am beginning to think differently. Good luck to everyone. If anyone has any advice to help with fatigue please let me know.
My Dr told me it was like practicing voodoo. My fatigue is awful. Have to make myself get up at noon. Keep hoping I will regain energy. It is now 6 months post tx with Harvoni.
My thyroid is messed up too. Hypothyroid, now on mess. Have fatigue everyday. Have done like 4 tx of interferon. Wish I would have waited for Harvoni which cleared me after 12 weeks. Was hoping that fatigue would go away witness the hep c but have been clear for 6 months now and still tired everyday. Difficult to get up and get going. Tried to get Dr. To give me vit B 12 shot but he will not do because I am not anemic.
If you have 1A then you can do Harvoni fro Gilead Pharmaceuticals. I did that tx and it is not bad and gets rid of hep in 12 weeks as long as you do not have cirrhosis, then it is 24 week tx.
Just ordered a bottle. Hope it helps.will let you know.
I do have fatigue very bad. It happened in 2005, was on tx for two hrs. Went from once a week shot to the everyday shot. Was able to get disability for the two yr tx. Went back to work which was very difficult. Worked for 3 yrs more and had to get on disability long term. It is very difficult to get out of bed each day. Usually by 11:00 I make myself get out of the bed and get on the treadmill. I do notice that if I get out of bed earlier and get myself ready I start to feel better for the day. Then the whole process starts over the next day. After I am out for a few hours I am exhausted when I get home. I find smoking a few hits of pot helps with my energy and here in AZ we have medical marijuana. I just ordered a bottle of that longed a and will see what it does. Asked the Dr to give me B12 shots but he will not because blood work is normal.
I am going to try a bottle. Just ordered. Will let you know how it does.
I have started taking glucosamine and it has helped with pain. I have been on morphine and oxycodone. Have been able to take less of pain mess.
Lonvida curcumin mentioned above is an antiinflammatory. I just started Zyaflamend which has curcumin in it in addition to other herbs which are antiinflammatory. If it helps it will be worth it. I started it a week ago for sciatica, not knowing it might help the brain. Very interesting. Thanks for sharing
What kind of personality changes? And to what extent are you AWARE of these changes?
Do other people tell you that you are a "different person?"
Have you made (and acted on) MAJOR life decisions that affected and shocked other people?
I would be very interested to know if this is a common post-treatment symptom for many people, and what if anything folks have done about it.
I am not sure if this can help some of you. But recently my doctor suggested that I might have a magnesium problem. I orally tried magnesium and I was surprised how much better I feel.
Since magnesium is depleted by: stress, sickness, too much calcium, caffeine, nicotine, drugs and also RIBAVIRIN (look at overdosage: http://www.drugs.com/ppa/ribavirin.html )
and also since magnesium causes an exhaustive list of symptoms, like
muscle and bone pain, tiredness, exhaustion, depression
just read the abstracts of
it could be that due to the interferone therapy some of us where low in magnesium and for many reasons, maybe by trying to cope with tiredness by drinking more coffee and so on, we never managed to get our magnesium balance back.
Apparently in the US 75% have a daily magnesium intake that is below the recommended amount. Every process in your body depends on magnesium, so a deficiency can also cause serious diseases.
Here you can find a short movie which shows how much magnesium ist in what kind of food so you can get an estimate how much magnesium you took in recent years and if this might be one reason for not recovering after interferone
I don't know if I am right, but I think it is worth a try. I hope it will help some of us.
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.
Read my new comments... pain in muscles and bones is also a common symptom of magnesium deficiency.
Also, there are positive correlations between thyroid hormones and magnesium levels. Some studies have seen higher magnesium with higher thyroid hormones.
Magnesium binds to ATP - the energy molecule in our bodies - every cell contains ATP and more there are over 300 enzymes where magnesium is cofactor, which means that the presence of magnesium is needed in order for the enzymes to be build.
Magnesium is cofactor to alkaline phosphatase as well.
I treated for Hep c in 2001. I never read the side effects. I was really really really sick the first month. I took matters into my own hands and did what I thought was best. I had had the disease since 1982 and asked to be tested for it. I did a workout every morning called the Body Flex and 8 minutes of Tae bo when I did that and drank AT LEAST 5 glasses of water I was good, had energy and went to work every day. When I did not drink the water I was completely exhausted. I played with my theory through the whole year of treatment. I was a heroin addict and caught the disease from whomever as I was a patient junkie who went last and I never looked as the needle went into my arm. Imagine my surprise when I had to inject myself and there was no high! OY! Delivered 3 children disease free as I carried the disease. My husband who thank god was a alcoholic so that saved my life. Was never a big drinker and if one whiskey sour was gonna get me sick the next day. Why bother! Because of his alcoholism.. we did not happily drink and I attribute my yucky feeling to that... I am very lucky. Very lucky. I am clean in more ways than one. Don't give up. Watch The Secret on Netflix and The Strangest Secret on You Tube... Drink water and any kind of workout. The Body Flex is perfect. Greer Childers its breathing and tightening. Awesome!
I did treatment in 2002. I did clear the virus, but have never recovered from treatment. Chronic fatigue, pain, personality change, no drive, don't care about doing much of anything.
I have been to all kinds of doctors. Tried lots of different supplements and drug therapies. Nothing has been able to stabilize me to live a quasi-normal life.
Sometimes I can do things and get out and about, then I get hit by a wave of fatigue and crash into bed for a few days to a week.
I do find that acupuncture will help me crawl back out of the hole rather than just waiting for my body to recover. Massage helps for the body pain.
Frankly I have given up on seeing doctors. I don't think they know what is truly wrong so there's no way that they can treat it.
Fortunately, this horrible treatment is no longer being used so there won't be anymore people created with this syndrome and no help.
agree. I am glad that this drug is being superseded. I finished treatment
21 Months ago and cleared the virus. I too have been trying every route.
My Magnesium, Vit B12, and Vitamin D were low post treatment..Addressing this has helped a bit as has juicing, no gluten, no dairy no sugar. But as you remark, nothing really dents and the Medical profession does not know how to address it.....I actually had more energy on treatment than when I ceased.
It was at about 3 months after stopping treatment that I realised that the interferon had caused irreversible damage. I am still reaching for health as it is the only game in town but aside from getting enough rest and eating healthily I am not sure what can practically be done. All the best to you Simon
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 was treated for HCV and cleared in 2004. I have many immune issues since using the interferon and ribavirin. Thought I would share some things that helped and ask for help. I have been on thyroid replacement 2004, I take natural thyroid plus T3. Not everyone can convert T4 into T3. I am sensitive to many foods and chemicals and perfumes. I try to eat organic when possible. Nightshades(potatoes, tomatoes, peppers, eggplant,tobacco) caused me muscle and joint pain. Corn caused me fatigue and severe brain fog. I also need to avoid gluten, dairy, soy, nuts, sugar and a few other foods. I have airborn allergies, of course I have cats and dogs. Quercetin helps for this. One of the few exercises I can tolerate is rebounding. This is jumping or jogging on a small expensive trampoline. I also take a lot of supplements.
Has anyone else developed photosensitivity? Sun exposure causes me extreme fatigue the next day. I also feel like the skin is burnt and can get discoid rashes from short exposure.
I also have muscle weakness and the muscles fatigue very easily.
I also had to figure most of these things out for myself.
I had long-term effects after the first interferon/ribavirin treatment in 2003 and the second peginterferon/ribivirin treatment in 2012.
After the first treatment in 2003, I had little energy for a few years. After having been very socially active and physically fit between 1997 and 2003, I didn't go out much and gained about 40 pounds from lack of activity. I became depressed after a few months on treatment, and the depression continued for six months after the end of treatment. I had low libido after the first treatment, especially for the first several months.
Since the first treatment, several activities I previously had excelled at such as snooker, I'm no longer very good at. I became less competent in my work, and had to try extra hard to do well. My ability to give a presentation isn't the same as before, because I'm somewhat forgetful and stumble over my words from time to time.
There was a strange kind of rash I had before the first treatment, which came back and remained for a week or so about every six months for a few years after the first treatment, in exactly the same place.
During the second treatment in 2012 for 28 weeks, I had much more severe side effects than during the first, but the after effects were virtually the same: depression, forgetfulness/confusion by times, lessening of cognition/reduced skills. However, I lost 40 pounds during the second treatment, and since 2012 I've have been somewhat more physically active, keeping the weight-gain down to just 20 pounds since 2012.
I failed to achieve SVR after those two treatments, but right now I'm on a Merck clinical trial without interferon (grazoprevir, MK-3682, and MK-8408 plus ribavirin for 16 weeks). So far, there seems to be no side effects whatsoever from the first three drugs. The ribavirin side effects of dry skin, easily tiring from low RBC, and sleep disturbance seem not so severe and much easier to deal with without the far worse psychological side effects of interferon.
I'm very thankful for these new drugs, which I understand also have better success rates than interferon for people with cirrhosis like myself.
So glad that you are not having side effects from the new drugs. Sending best wishes to you for success and an easy passage. I was lucky enough to clear with the old regime in 2014 but also have had long term side effects.
thank you for posting your story , all the best .. simon
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.
My father and my mother who were so happy in the beginning because I treated the virus and they visited me with merry faces to ask if i need anything and how i was doing... after treatment i tried everything to get back to life and happy again and nothing helped. i can't continue to look in the sad and tired eyes of my father and my mother who are so sad to see their only son deteriorate... I have to end it, then they can find peace i guess.
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 can't put on a happy attitude when i'm not happy. that will not work. I don't overdo things. i sit in my room on the floor and read through the internet. i don't even do anything! I can't cut short on my life. that too will not work. i don't want it and i would rather die than living this low life forever. no, thanks. without me.
but maybe i will find a way out to this mess... i have a great way to undo all the damage that has been done... but i need $12.000 for that...
The discoid rash and sun sensitivity can be a symptom of niacin deficiency. If you want to try it, then use Nicotinic Acid and NOT Nicotinamide, since Nicotinamide is known to stress liver function. Did you get your exocrine (!) pancreatic function tested? Did you get tested for rheumatic diseases? They can also cause similar symptoms and are autoimmune problems that can be triggered by IF.
I have developed photosensitivity as well. I am trying zinc now and niacin. I just got diagnosed with pancreatic insufficiency. I probably had that for years already.
Until now, things that helped me were protein rich diet (1g/kg and day), lots of Vitamin C (1-2g), magnesium (400mg-800mg), iron (100mg), Vitamin A (25.000 i.E.) and of course the thyroid hormones. Of course it all canot be well processed if there is exocrine pancreatic dysfunction. Now I try the zinc to support my pancreas and I will see what happens.
I also had to figure out most of the things myself. I am glad that I invested so much time in the research since I am so much better than 3 years ago.
Interferone and Ribavirin trigger a strong immunological response against the virus. I imagine that that way we use much more of our resources in terms of minerals, vitamins proteins. E.g. I lost 10 kg in three months, had constant fever, lost hair and many other side effects. That costed the body energy and nutrients. BUT, if there is some imbalance it might cause other imbalances, as e.g. zinc deficiency and/or niacin deficiency and others can cause diarrhoea and pancreatic dysfunction, thus impairing nutrient uptake in the gastrointestinal tract. Depending on lifestyle and knowledge it can become a downward spiral.
Trust your body and your symptoms they will tell you what you need. Generally avoid sugar and processed food. Since it doesn't contain any nutrients at all anymore. It will worsen every imbalance that is there.
I believe that with time and the right building blocks (nutrients) the body can heal a lot of stuff away. It doesn't happen instantly, but it can.
Treatment in my case is already 13 years ago.
You can potentiate the effect of Curcumin with black pepper. Piperin acts on the same Cytochrome P450 enzymes that process Curcumin and by that preventing Curcumin of being processed by the enzyme too early.
You can do the B12 subcutaneously yourself. At least in Europe this is a somewhat common practice. I never tried it myself, since I am not sure if it will help me.
If you are having an infection in the moment of the blood test the ferritin value (Iron storage) will be much higher. That is why the result can be false positive. CRP should always be measured at the same time to exclude false high ferritin results. That might explain why the ferritin "jumped" that much. Your doctor should know this. I increased my iron ferritin value from 13 ng/ml to above 42 ng/ml with oral supplements only. I had to stop since it is causing me stomach pain so I just take it once in a while. 13 is the lower bound of the reference range of your 6 = nothing, as I guess from the numbers you give. And yes, 6 is nothing, 26 is still very low. As far as I know above 30 is still not much, but also not bad.
Not just the US. Processed empty foods, sugar, work, sickness. Somewhere in between death and life. Not sick enough to cost too much money, not healthy enough to have excess energy too be able change the system. Everyone entrapped in their own existential fights. Wonderful trap it is. It is a worldwide problem and people sleep.
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.
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.
I just found this article
another nutrient that is depleted during Hep C and interferone treatment is zinc.
As well as Vitamin A
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.
Interferon is poison! I wish I never took it and waited for the newer treatment. My body has never been the same. Within 6 months of stopping treatment I had diabetes. I have 3 enlarged axillary lymph nodes that I had to have biopsied and are being carefully built watched. I have horrible anxiety and early onset menopause. It's been over 5 years and I feel like this treatment aged me and just changed me. I literally see my life as before and after interferon. I regret ever ever going anywhere near it!
Interferon is the worst thing that happened to my life. I was treated in 2014 and after all this time i have never felt the person i was before. I used to enjoy life, have friends, go out. I am 20 years old right now and I am supposed to be on the best point of my life, but I just do not feel so. I wished I never had done that treatment. I have ADHD, and right now it seems that I suffer from depression and anxiety also. I am just tired of all this.