Aa
what is post interferon syndrome
just saw otto post on the other thread.. was your treatment harder for you than other people.?
maybe.. some time ago i was nearly killed by a car i wasn't paying attention to and.. it really felt good! my heart was beating really fast and i was happy! When i'm not dead until i go to peru i will mail you my address, take care
we are doomed. that's our fate.
i will leave this country as soon as i can and go to peru to live outside of cities.
i will leave this country as soon as i can and go to peru to live outside of cities.
There is no information because most people with HCV are Heroin users and everybody knows that they are looked at like the scum of the earth.
The pharma companys constantly denie any long term effects of interferon because it's a cash cow for them and they don't care about the people treated with it. They are like the mafia.
Everybody with cancer/HCV that receives chemotherapy is doomed because these drugs damage the body. there are no trials about the long term effects because nobody will pay for them.
The pharma companys constantly denie any long term effects of interferon because it's a cash cow for them and they don't care about the people treated with it. They are like the mafia.
Everybody with cancer/HCV that receives chemotherapy is doomed because these drugs damage the body. there are no trials about the long term effects because nobody will pay for them.
I have been on this and other post interferon forums for the past year or so
and have yet to come across any evidence of research on the subject. I have heard that Mayo Clinic recognises PIS but cannot find any reference to it on their site. I do hope that your question leads to a source of information.
and have yet to come across any evidence of research on the subject. I have heard that Mayo Clinic recognises PIS but cannot find any reference to it on their site. I do hope that your question leads to a source of information.
1 Comments
That's sort of what I saw in my quick research as well. It would be great if someone was able to direct us to some definitive information.
I spent 12 mths on IA2 for stage 3N melanoma in 2010-2011. I've got a litany of joint issues that doctors can't identify the cause of. I have spent the last thirty minutes trying to find a legitimate source of information for Post Interferon Syndrome symptoms, research, etc. and I just can't find anything other than forums. Can anyone help direct me to some sources of information? Thank you so much!
Today if the first I ever heard of PIS. I had 12 months of Interferon Alpha in 1996 and 7 months of Interferon with Ribavirin in about 1999. Had to stop the combination therapy as I was borderline Rheumatoid and thyroid levels were dodgy. I found out treatment had triggered Asthma and I was later diagnosed with Fibromyalgia and Chronic Fatigue Syndrome. I have recently noticed my finger joints swelling and deforming and am waiting to see a specialist. In the last few months I have a had a terrible cough that won't go away and when I saw my doctor yesterday he sent me straight for a chest x-ray and is worried it's more than a chest infection and I found evidence on-line of Interferon causing lung damage? The thought of this therapy causing ongoing damage had never occurred to me, I feel like I am being sucked into yet another health nightmare!
1 Comments
Hi just saw this. I have heard of others having lung problems. So sorry to hear of yours. I think it was HondaPatches that had to start using inhalers, nebulizer in order to breathe.
Hi Simon,apart ftom pacing and eating healthy food I haven't found anything that helps. I think Frank had a result being prescribed dexamphetamine but he's in the States-can't see it happening here somehow! I'm not entirely sure it would help anyway as it would be too easy to overdo things and end up in bed for a week or so again. I was diagnosed with Post Viral Fatigue Syndrome and fibromyalgia by my GP a year after treatment prior to the liver consultant diagnosing PIS 3 years later,If you find anything that helps with this overwhelming fatigue please let me know!
To explain, I was searching for Post Interferon Syndrome. In the past all I would find was HCV and interferon.
I guess, now that it is not being used as much for HCV I am finding interferon and skin cancer and long term side effects
I don't know what dose they took compared to those of us who treated HCV but I am hopeful this information will help someone.
I found this article about rare side effects and wonder what else there might be
I think our doctors knew more than they let on. After finishing a trial in 2009; my hepatologist freaked out over a bent finger I had. He seemed to think Interferon had done it. I had to explain it was a torn tendon. I always wondered about his reaction.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2913821/
I guess, now that it is not being used as much for HCV I am finding interferon and skin cancer and long term side effects
I don't know what dose they took compared to those of us who treated HCV but I am hopeful this information will help someone.
I found this article about rare side effects and wonder what else there might be
I think our doctors knew more than they let on. After finishing a trial in 2009; my hepatologist freaked out over a bent finger I had. He seemed to think Interferon had done it. I had to explain it was a torn tendon. I always wondered about his reaction.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2913821/
Hi just in case here is the information. While it is not new I think it is believable and might point you in the right direction.
Maybe there are some Oncologists out there that know how interferon affected some people and they can help. If I find anything I will come back. I think this is the place that DWBH was talking about or it is close....I hope :)
http://www.melanoma.org/comment/53809#comment-53809
Maybe there are some Oncologists out there that know how interferon affected some people and they can help. If I find anything I will come back. I think this is the place that DWBH was talking about or it is close....I hope :)
http://www.melanoma.org/comment/53809#comment-53809
Hi Bruin, yes I believe that for people who have PIS what you are experiencing is the norm. I know I will be good for a day maybe two, then I am exhausted. I got the Dellimune V off of Amazon. You can check as prices constantly change. I have noticed improvement like Frank. Because I have been taking probiotics for a while my results were not as strong as Frank's but still improving. Also I just looked up post inferon Syndrome and found people with melanoma discussing long term side effects and how their docs were helping them. Now I wonder why HCV docs deny any problems and won't help or even admit there is a long term effect. On the one hand they agree there are sx from tx but deny anything long term could happen. I thank God I don't have these coma/sleep attacks I have seen others post about. I am going to look into some more.
Thanks Otterwatcher....it is helpful to know that others have the same
experience though I wish us all better. I think you are in UK ?
Have there been anything which has been particularly helpful ?
All the best
Simon
experience though I wish us all better. I think you are in UK ?
Have there been anything which has been particularly helpful ?
All the best
Simon
Hi Dee....Thank you very much that is so helpful. It feels, to me, that
PIS operates a a little like CFS. When I over exert it can have severe
payback and put me in bed for a couple of days. Is this a common experience.?.
PIS operates a a little like CFS. When I over exert it can have severe
payback and put me in bed for a couple of days. Is this a common experience.?.
Hi there, you can purchase DellimmuneV directly from the company, I will get information.
Also Amazon sells it
NADH really helped me when I first finished tx.
It helped a couple of other people on here.
Also Amazon sells it
NADH really helped me when I first finished tx.
It helped a couple of other people on here.
Hi there! Thanks so much for posting. I am happy that you have been able to get an answer
I just started Cerefolin NAC, have hope it will help me
Good luck
Dee
I just started Cerefolin NAC, have hope it will help me
Good luck
Dee
Hello Everybody!
My former nickname was Kittyface when I was active on this board 2005-2010, Fortunately I cleared HCV in 2008 (almost killed me) but I, too, suffered from post interferon syndrome and last month was coincidentally dx with Systemic Mastocytosis which is an over proliferation of mast cells produced by the immune system.
Interestingly enough, the symptoms of Masto mimic the symptoms of post interferon syndrome; extreme fatigue, depression, apathy, and general malaise in the presence of normal CMP and CBC values. It is primarily diagnosed by elevated tryptase levels which are not routinely ordered.
Mastocytosis is considered a rare "disease" with an unknown cause and no cure. I think mine was caused by 25 years of HCV plus a generous helping of interferon and ribavarin. Opiates have a major deleterious effect on the immune system and can trigger this disease as well. For me, all the pieces of puzzle are beginning to come together.
The good news is I started LDN 1.5 mg and it has alleviated 99% of my symptoms in a very short time. I wish everybody well and hope this info helps.
Cindy
My former nickname was Kittyface when I was active on this board 2005-2010, Fortunately I cleared HCV in 2008 (almost killed me) but I, too, suffered from post interferon syndrome and last month was coincidentally dx with Systemic Mastocytosis which is an over proliferation of mast cells produced by the immune system.
Interestingly enough, the symptoms of Masto mimic the symptoms of post interferon syndrome; extreme fatigue, depression, apathy, and general malaise in the presence of normal CMP and CBC values. It is primarily diagnosed by elevated tryptase levels which are not routinely ordered.
Mastocytosis is considered a rare "disease" with an unknown cause and no cure. I think mine was caused by 25 years of HCV plus a generous helping of interferon and ribavarin. Opiates have a major deleterious effect on the immune system and can trigger this disease as well. For me, all the pieces of puzzle are beginning to come together.
The good news is I started LDN 1.5 mg and it has alleviated 99% of my symptoms in a very short time. I wish everybody well and hope this info helps.
Cindy
Thanks once again Frank........will check Jaynes's sites out.
Clearly the thing to do is to reduce inflammation by whatever method possible
Currently for me that means cutting out all inflammatory foods , dairy, gluten, ,
eating a lot of raw food, juicing and so forth.
I am bored with being semi disabled...it is very isolating and my business
needs attention I am unable to give it.....Getting well is all that matters !
Bruin
Clearly the thing to do is to reduce inflammation by whatever method possible
Currently for me that means cutting out all inflammatory foods , dairy, gluten, ,
eating a lot of raw food, juicing and so forth.
I am bored with being semi disabled...it is very isolating and my business
needs attention I am unable to give it.....Getting well is all that matters !
Bruin
Here is the update I wanted to give you on the LDN site...
There isn't much specific discussion on HepC and LDN. There is a lot of bickering over what is the correct this or that but do pay more attention to one poster, a UK poster by the name of Jayne. She has her own site which I also recommend - http://www.ldnnow.co.uk/1410.html
Her knowledge is really amazing and very up to date while many other posters are posting info that is very dated and will not change! Jayne is a real fighter for the truth.
frank
There isn't much specific discussion on HepC and LDN. There is a lot of bickering over what is the correct this or that but do pay more attention to one poster, a UK poster by the name of Jayne. She has her own site which I also recommend - http://www.ldnnow.co.uk/1410.html
Her knowledge is really amazing and very up to date while many other posters are posting info that is very dated and will not change! Jayne is a real fighter for the truth.
frank
I think I forgot the site! I am really fatigued to day!!!
http://www.lowdosenaltrexone.org
nite all. f
http://www.lowdosenaltrexone.org
nite all. f
Bruin, I am so happy to help out.
MedHelp has been here for me with so many members helping me so I am just passing it on.
Here is the site and if you go down a bit you can see the box where you can put in your email to join the Yahoo Group for ldn.
I was going to write a bit more but really have to get a bit of sleep right now…
Sounds like you have some exciting experiments ahead. I will post a bit more about the ldn site soon, frank
Oh, nearly forgot! I can't believe you actually got a positive on the CPR test! My GP said that test is nearly impossible to get a positive YOU MUST BE ONE INFLAMED blankety blank, lol.
MedHelp has been here for me with so many members helping me so I am just passing it on.
Here is the site and if you go down a bit you can see the box where you can put in your email to join the Yahoo Group for ldn.
I was going to write a bit more but really have to get a bit of sleep right now…
Sounds like you have some exciting experiments ahead. I will post a bit more about the ldn site soon, frank
Oh, nearly forgot! I can't believe you actually got a positive on the CPR test! My GP said that test is nearly impossible to get a positive YOU MUST BE ONE INFLAMED blankety blank, lol.
Cannot overstate how valuable your injunction to be aggressive for
yourself is. It is inspirational to connect with people on here who
are bravely doing it and being generous with what they have gleaned on their journeys. I would love to get good info on LDN and will be talking to my
GP when I see her next week about getting a prescription. I
When I did not get any better after finishing the treatment I thought I must
have something awful wrong with me and got a battery of tests...the only
one that was elevated was CPR...think have the initials right ? Which measures inflammation in the body....this explains a lot. Will keep
fighting the good fight....Thanks Frank
yourself is. It is inspirational to connect with people on here who
are bravely doing it and being generous with what they have gleaned on their journeys. I would love to get good info on LDN and will be talking to my
GP when I see her next week about getting a prescription. I
When I did not get any better after finishing the treatment I thought I must
have something awful wrong with me and got a battery of tests...the only
one that was elevated was CPR...think have the initials right ? Which measures inflammation in the body....this explains a lot. Will keep
fighting the good fight....Thanks Frank
I know how you feel.
I guess I am lucky because I had a great psychiatrist who got me on a stimulant that, for me, has zero side effects and has been a miracle for me... it has changed me from a zombie to at least getting six or more active life a day.
Vyvanse (Elvanse in the UK) is for people/kids with ADHD but if you dont have ADHD it is a stimulant. Wikipedia has an excellent article on it. A lot of the article is only on stimulants not on this specific medication so make sure, if you are interested, read thru to the specifics of this med. I am on the lower dose of only 30mg.
All that being said if I had any kind of stressful trigger it would knock me out!
That is where I found that LDN has helped immensely! I can have a horrible stress trigger and continue on! This started within the first week of using LDN. I wont go into the details, I have posted it else where on here, but my mother was left to die by a rogue nurse at her nursing home! That was at the same time that I started LDN and I am very thankful that I was able to carry on with it all...
If you do attempt to start LDN the MAX is 4.5mg but you may not even need that dose. I think I started at 2mg and am now at 2.5mg and I am not sure if I will increase to 3 or not.
The one big side effect is very crazy dreams. Many say that you MUST take LDN at bedtime but this is bull. I started taking it at bedtime but had crazy dreams and couldnt sleep. Kept waking up. People posted that it was fine to take upon waking up and eventually the crazy dreams ended and I am still getting the benefits.
Of course, after being on INF/Riba for 72 weeks and suffering for a decade I don't expect LDN at 2.5mg to clear my body of the inflammation for a LONG TIME! Maybe years!
Let me know if you are interested in the largest Yahoo forum for LDN. It is very informative but again, there is a lot of crazy info going around.
Let me know if I can be of any other help. frank
btw, many may find all this rather aggressive and it is. Living a decade with Post-Interferon Syndrome has taught me to be very aggressive! If anyone with PIS is waiting for Big Pharma to come up with a pill to cure PIS don't! A "Syndrome" cant be cured with a single pill by definition! I am not saying do exactly as I do… every person has a different chemistry. I am saying be aggressive for yourself because no one else will.
I guess I am lucky because I had a great psychiatrist who got me on a stimulant that, for me, has zero side effects and has been a miracle for me... it has changed me from a zombie to at least getting six or more active life a day.
Vyvanse (Elvanse in the UK) is for people/kids with ADHD but if you dont have ADHD it is a stimulant. Wikipedia has an excellent article on it. A lot of the article is only on stimulants not on this specific medication so make sure, if you are interested, read thru to the specifics of this med. I am on the lower dose of only 30mg.
All that being said if I had any kind of stressful trigger it would knock me out!
That is where I found that LDN has helped immensely! I can have a horrible stress trigger and continue on! This started within the first week of using LDN. I wont go into the details, I have posted it else where on here, but my mother was left to die by a rogue nurse at her nursing home! That was at the same time that I started LDN and I am very thankful that I was able to carry on with it all...
If you do attempt to start LDN the MAX is 4.5mg but you may not even need that dose. I think I started at 2mg and am now at 2.5mg and I am not sure if I will increase to 3 or not.
The one big side effect is very crazy dreams. Many say that you MUST take LDN at bedtime but this is bull. I started taking it at bedtime but had crazy dreams and couldnt sleep. Kept waking up. People posted that it was fine to take upon waking up and eventually the crazy dreams ended and I am still getting the benefits.
Of course, after being on INF/Riba for 72 weeks and suffering for a decade I don't expect LDN at 2.5mg to clear my body of the inflammation for a LONG TIME! Maybe years!
Let me know if you are interested in the largest Yahoo forum for LDN. It is very informative but again, there is a lot of crazy info going around.
Let me know if I can be of any other help. frank
btw, many may find all this rather aggressive and it is. Living a decade with Post-Interferon Syndrome has taught me to be very aggressive! If anyone with PIS is waiting for Big Pharma to come up with a pill to cure PIS don't! A "Syndrome" cant be cured with a single pill by definition! I am not saying do exactly as I do… every person has a different chemistry. I am saying be aggressive for yourself because no one else will.
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