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Long term side effects of Interferon & Ribaviron
I had Hepatitis C 9 years ago and went on the treatment and have been cured of the HCV for 9 years, I have developed a rash on both arms and the doctors have no clue what it is. They keep saying its some sort of allergy but they can't tell me to what. A friend of mine that also has HCV says its my ammune system attacking me after years of being on the treatment. Has anyone heard anything about long term side effects of Interferon and Ribaviron? I was on both for a year. I was the first person in the state of NY to go on the study and I was also the only one out of 4000 to be cured (thank you God). I now live in Florida and am having major rashs on both arms. I need help. Anyone that can help me please do. I"m desperate.
I got a rash a couple months into treatment with the interferon/ribavirin/inciveck. Now I have the same painful recurring rash. Among other long term side affects. Duty the rash is painfully maddening.
1 Comments
By the way its two and a half yrs later. Still painful rash.
Thanks for all the comments, however I have been to 8 different Dermatologists and an Allergist and all they can tell me is that I have allergies of some kind but they don't know what kind. I'm seeing the Dermatologist today after 3 so that I can talk to him again and I also have an appointment for Friday with my Internist and I will ask him to do a Autoimmune disorder profile, I will also ask him to get me a doctor at Jackson Memorial Hospital which is a teaching hospital here in FL and suppossedly one of the best for my rash. I'll also ask the Dermatologist about the black light scraping as well. This rash is a 24-7 pain in the *** and its horrible and I'm pretty much going out of my mind with it....Oh and about all the creams, sprays and ointments..I've tried about 20 different items and the only ones that help are the Clobetasol cream and the Clobex spray. You just can't use them for more than 2 weeks at a time so I have to be careful. I'll let you know what the docs both say.
sorry back, not trying to offend you either...in fact on this thread you asked and I gave some extensive possibilities. there's another one from a week ago on rashes that was good, you should try to find, or I will...
It's also possible your spleen, adrenals were compromised by the hep c years. Equally possible is that any number of other viruses like mono, herpes, and or things we overdo such as alcohol or under nourishment over the years all contribute to the eventual break down of the immune systems, and things often show up in the skin first, (which is better than in an internal organ, cause at least you can see if tx is working.) Just saying, lots of possible causes, and yes I do thank God you were cured back then, how wonderful!!
Nobody is unsympathetic in here. I'm just saying it's hard to lay all blame on any one factor.
that may change in years to come. For instance, they do know that Valium/Librium useage cause spastic body syndrome. It took 20 years to realize that it was indeed those drugs causing it, and not other substances and/or random occurance. It takes more than the 4 years Riba has been around to gather enough statistics to show definitely that a certain disease will follow a certain tx.
What they do know is that any time you try to boost the immune system and make it work real hard to get rid of one disease it takes a natural toll on the whole system. that would happen whether you fought a cold with no drugs, or even Malaria with none, a very great toll there, the difference is, with the drug you would survive the malaria, without tx you may well not.
I guess the point here is, how can we help you get past what to blame for your suffering and get to how to try and fix it.
Have you been studied yet for possible fungi/bacterium? there are lots of spores in the air in florida, and some folks get sensitive to them. My husband has probs with this. it's very treatable, but he has to retreat every so often because he likes hot showers, so he never quite knocks it all out.
If I were you, i'd try a little experiment while you are waiting to get into the skin doc.
take a trip to safeway and buy some benydryl gel, some hydrocortisone cream, and some triple antibiotic ointment. pick a 2 inch spot to apply each medicine, several inches from one another.
continue for 3 days and see if any of the above diminish your rash in that area. this will help your doc to determine if this may be something other than autoimmune. (suchas viral or fungal.)
Be sure and tell the doc anything strange you have eaten (for the first time) or say, a big shell fish meal...anything you can think of that was different in the days before the rash appeared.
Also ask him to do a black light, scaping sample. Some GP's never do this....a dermo guy should.
this will tell them if you have an overgrowth of certain bacterium or fungi, which can happen in warm climates especially, and warm showers can intensify this, hot tubs can spread the same. these rashes can look like others, like hives, or like brown blotches...but the only way to tell if it is autoimmune or a microbe is to use the black light, a microscope, or if all else fails, a skin biopsy.
hope that helps
It's also possible your spleen, adrenals were compromised by the hep c years. Equally possible is that any number of other viruses like mono, herpes, and or things we overdo such as alcohol or under nourishment over the years all contribute to the eventual break down of the immune systems, and things often show up in the skin first, (which is better than in an internal organ, cause at least you can see if tx is working.) Just saying, lots of possible causes, and yes I do thank God you were cured back then, how wonderful!!
Nobody is unsympathetic in here. I'm just saying it's hard to lay all blame on any one factor.
that may change in years to come. For instance, they do know that Valium/Librium useage cause spastic body syndrome. It took 20 years to realize that it was indeed those drugs causing it, and not other substances and/or random occurance. It takes more than the 4 years Riba has been around to gather enough statistics to show definitely that a certain disease will follow a certain tx.
What they do know is that any time you try to boost the immune system and make it work real hard to get rid of one disease it takes a natural toll on the whole system. that would happen whether you fought a cold with no drugs, or even Malaria with none, a very great toll there, the difference is, with the drug you would survive the malaria, without tx you may well not.
I guess the point here is, how can we help you get past what to blame for your suffering and get to how to try and fix it.
Have you been studied yet for possible fungi/bacterium? there are lots of spores in the air in florida, and some folks get sensitive to them. My husband has probs with this. it's very treatable, but he has to retreat every so often because he likes hot showers, so he never quite knocks it all out.
If I were you, i'd try a little experiment while you are waiting to get into the skin doc.
take a trip to safeway and buy some benydryl gel, some hydrocortisone cream, and some triple antibiotic ointment. pick a 2 inch spot to apply each medicine, several inches from one another.
continue for 3 days and see if any of the above diminish your rash in that area. this will help your doc to determine if this may be something other than autoimmune. (suchas viral or fungal.)
Be sure and tell the doc anything strange you have eaten (for the first time) or say, a big shell fish meal...anything you can think of that was different in the days before the rash appeared.
Also ask him to do a black light, scaping sample. Some GP's never do this....a dermo guy should.
this will tell them if you have an overgrowth of certain bacterium or fungi, which can happen in warm climates especially, and warm showers can intensify this, hot tubs can spread the same. these rashes can look like others, like hives, or like brown blotches...but the only way to tell if it is autoimmune or a microbe is to use the black light, a microscope, or if all else fails, a skin biopsy.
hope that helps
I'm sorry for your problems. It seems in Florida almost everybody develops some sort of allergic reactions. I was lucky so far, but my husband gets more and more allergic reactions with every passing year.
Treatment also can give you an autoimmune disease. Number of bloodwork for different antibodies may pin - point the problem (or problems). I developed red patches for about 1 month after completion of two years of max. & doubledose daily Infergen with Ribovarin. Luckily, my skin problems have been resolved without any medical interference. If your dermatologist didn't schedule for you autoimmune disorders profile lab. work, you may need to see an Internist, an Allergist, etc. Be persistent and search for your cure or at least, for help.
Jim (a member on this forum) is probably the most knowledgeable here about skin problems. I'm sure he will respond and will help you.
All the best!
Treatment also can give you an autoimmune disease. Number of bloodwork for different antibodies may pin - point the problem (or problems). I developed red patches for about 1 month after completion of two years of max. & doubledose daily Infergen with Ribovarin. Luckily, my skin problems have been resolved without any medical interference. If your dermatologist didn't schedule for you autoimmune disorders profile lab. work, you may need to see an Internist, an Allergist, etc. Be persistent and search for your cure or at least, for help.
Jim (a member on this forum) is probably the most knowledgeable here about skin problems. I'm sure he will respond and will help you.
All the best!
Have you seen a rheumatologist? When they don't know what it is, it's often something autoimmune.
I was just asking a question...I wasn't blaming the treatment...all I did was post a question as to whether or not anyone on the treatment had ever heard of what I'm going thru. I've been to 10 different doctors including Dermatologists and no one knows what it is..I just asked a question, that was all. Sorry if I offended anyone, I won't be coming back here.
I can see how if you did "doubledose" in your treatment this would lead to more serious side consequences. Does your name reflect how you treated the disease...I'm new so don't know you yet.
as to the 37 percent feeling worse after tx....I'd A. want to know how soon after tx...and B.
want to mention that we are talking about an aging population of folks in their 50's and 60's mostly...and at that age other ailments do all begin to arise. So some of this is to be expected based on the groups being treated.
also, in a cross section of new cases, fully half the people treating had at various points been harder on their bodies, with alcohol and/or substances. Of the half that had not there were still various health conditions and nutritional issues going into tx.
Not trying to defend any tx or company here, just saying, the "vast conspiracy" may be mostly a product of the normal course of aging...which only a couple generations ago...our life expectancies were 50-60 yrs at best even in the developed nations. Just a thought to keep in mind.
as to the 37 percent feeling worse after tx....I'd A. want to know how soon after tx...and B.
want to mention that we are talking about an aging population of folks in their 50's and 60's mostly...and at that age other ailments do all begin to arise. So some of this is to be expected based on the groups being treated.
also, in a cross section of new cases, fully half the people treating had at various points been harder on their bodies, with alcohol and/or substances. Of the half that had not there were still various health conditions and nutritional issues going into tx.
Not trying to defend any tx or company here, just saying, the "vast conspiracy" may be mostly a product of the normal course of aging...which only a couple generations ago...our life expectancies were 50-60 yrs at best even in the developed nations. Just a thought to keep in mind.
there's so many things that could cause this I don't think it's rational to blame on a treatment 9 yrs prior.
I can tell you this, having taught anatomy: your skin is an organ like any other. It can develop sensitivity at any point. Everything from, soaps, to lotions, to clorine, to even water itself (yes not making it up) can cause skin conditions.
I know more than most having been to 20 dermatologists for mystery skin stuff.
my friend also, had an allergy to WATER......pure distilled water even, would cause her a rash and blisters...all documented at OHSU where we both went.
there are lots of folks who develop shingles, (the latent chicken pox virus) and a whole host of other conditions. without seeing the rash it would be impossible for anyone to really make an educated guess but the best thing would be to get to the best dermatologist you can.
I know with shingles early treatment can settle it back down, but waiting to treat lessen that chance greatly.
In one of my episodes I ended up trying polltaces of golden seal, which was my last resort before going on heavy steroids. The things is, sometimes it takes a steroid to settle down the skin which is going into a histamine reaction mode, IF it is allergy caused.
If that is happening the skin can continue to react for weeks or even years to one exposure because the cell does not get the signal that the intruder/irritant is gone and so it keeps producing histamine forever. I have 2 spots like that still...from holding a christmas tree 7 years ago.
first you must find out what is causing it.
I can tell you this, having taught anatomy: your skin is an organ like any other. It can develop sensitivity at any point. Everything from, soaps, to lotions, to clorine, to even water itself (yes not making it up) can cause skin conditions.
I know more than most having been to 20 dermatologists for mystery skin stuff.
my friend also, had an allergy to WATER......pure distilled water even, would cause her a rash and blisters...all documented at OHSU where we both went.
there are lots of folks who develop shingles, (the latent chicken pox virus) and a whole host of other conditions. without seeing the rash it would be impossible for anyone to really make an educated guess but the best thing would be to get to the best dermatologist you can.
I know with shingles early treatment can settle it back down, but waiting to treat lessen that chance greatly.
In one of my episodes I ended up trying polltaces of golden seal, which was my last resort before going on heavy steroids. The things is, sometimes it takes a steroid to settle down the skin which is going into a histamine reaction mode, IF it is allergy caused.
If that is happening the skin can continue to react for weeks or even years to one exposure because the cell does not get the signal that the intruder/irritant is gone and so it keeps producing histamine forever. I have 2 spots like that still...from holding a christmas tree 7 years ago.
first you must find out what is causing it.
Rather than recap all the long discussions of post-tx problems that have been discussed on this Forum over the past few years, I will just recommend that you slowly work your way backward, looking at the posts and their headings. You will find MANY, MANY posts that discuss the wide range of problems that many of us have suffered from after finishing tx, and becoming SVR. I still suffer a host of debilitating symptoms since becoming SVR over four years ago! You will see many posts of mine, and many posts form other forum members. There was a British survey a few years ago, that looked at post-tx problems across many hundreds of treaters, both SVR's and relapsers. They found a very high percentage of people who felt much worse after finishing tx than they had felt before. Something like 37% or so. You may find the link to that survey in one or more of the old posts.
Let us know what you think after reviewing all the previous posts on this subject. It is certainly not uncommon to hear about these sorts of problems after tx, and I think the issues are under-publicized, and not very much acknowledged by the doctors treating for HCV. The drug companies are pretty 'MUM' on the subject as well.
Good Luck!
DoubleDose
Let us know what you think after reviewing all the previous posts on this subject. It is certainly not uncommon to hear about these sorts of problems after tx, and I think the issues are under-publicized, and not very much acknowledged by the doctors treating for HCV. The drug companies are pretty 'MUM' on the subject as well.
Good Luck!
DoubleDose
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