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Post - Tx Long Term Problems
It was requested that I re-post this. Are there others with this experience out there? ALL my doctors cannot seem to give me any answers!
micro2
06/26/2006
C23 . Hello All, I have not checked in here for months and this is just the topic I am intersted in. I am 2years post tx wchronic fatugue syndrome,fibromyalgia, neuropathy, extreme depression and mental fog. I am unable to work and collecting ssdi. I am still looking for that truck that hit me!!I treated for 19 months and did not kill the virus. I spend my time trying to make sense out of the person this tx left behind. Thanks, michael
micro2
06/26/2006
C23 . Hello All, I have not checked in here for months and this is just the topic I am intersted in. I am 2years post tx wchronic fatugue syndrome,fibromyalgia, neuropathy, extreme depression and mental fog. I am unable to work and collecting ssdi. I am still looking for that truck that hit me!!I treated for 19 months and did not kill the virus. I spend my time trying to make sense out of the person this tx left behind. Thanks, michael
I'd just like to add that no one was a bigger skeptic than myself regarding persistent post treatment issues when I first started posting. I remember getting into several tuff's with DoubleDose on the subject accusing him of negativity and undermining the motivation of those here treating. I have long ago apologized to him for that and understand that while he may have upset some people treating, he was performing a greater good by giving a more complete picture to those about to make a treatment decision.
I'm sure some here are familiar with William S. Burrough's book, "Naked Lunch". One oft used interpretation of the title meaning is that frozen moment in time when you see exactly what is at the end of your fork.
Well, what words couldn't do, the treatment experience did. I saw and continue to see what was at the end of my treatment fork and am convinced that this treatment leaves many of us with an altered immune system with the resulting problems.
Treat -- don't treat -- treat hard and long -- treat soft or short -- that's an individual decision. But without the facts being made clear, that decision will be based on incomplete knowledge.
-- Jim
I'm sure some here are familiar with William S. Burrough's book, "Naked Lunch". One oft used interpretation of the title meaning is that frozen moment in time when you see exactly what is at the end of your fork.
Well, what words couldn't do, the treatment experience did. I saw and continue to see what was at the end of my treatment fork and am convinced that this treatment leaves many of us with an altered immune system with the resulting problems.
Treat -- don't treat -- treat hard and long -- treat soft or short -- that's an individual decision. But without the facts being made clear, that decision will be based on incomplete knowledge.
-- Jim
The notion of pre-existing conditions or the virus itself accounting for many of the reported lingering post-tx symptons comes up often. I'm not suggesting the posters are trying to minimize what many report has happend to them post treatment but I would like to add some thoughts.
First, from reading both the recent threads and past related threads, it seems clear that while many post-tx symptons may have been pre-existing but much milder, other symptons are reported as having emerged only after treatment started.
As to those where pre-existing conditions prevailed, I'll use my own case as an example. I've had very mild psoriasis and seborreah dermatitis since my 30's. On a scale of 1-10 it impacted my QOL maybe .001%, in other words it didn't other than a visit to a derm every few years and the application of an ointment maybe on average once every three months.
During treatment these conditions flared and from everything I've read and from what my doctors tell me it's from the interferon. I ended up with severe guttate psoriasis over 60% of my body, disabling plantar pustular psoriasis on hands and feet and rosacea on face and neck. Forget QOL on treatment -- practically non-existent. Post treatment the plantar pustular psoriasis cleared up as well as the guttate. This was expected as the Interferon left my body. What does persist is the seb dermatitis and rosacea. Right now, on that same 1-10 scale, where 10 is the worst, I'm over 5 with a significant limitation of my outdoor activities not to mention aged and abused looking skin.
This is my example of how the treatment drugs flared and then persisted an already existing condition. I'm sure others have theres.
The point is that to those that suffer, it really doesn't matter if a condition pre-existed or not. If the treatment drugs magnify a pre-existing condtion 10-20 fold then the end result is just as bad as if it were a new condition.
It's said, for example, that those that lose their thyroids during treatment might have developed the same problem 10-20 years down the road. Does it make them feel any better that they might have lost their thyroid now instead of *maybe* in another 10 years?
And how many folks really know what lurks under the surface in terms of pre-existing symptons? Don't we all have pre-existing symptons to one degree or another?
What Interferon does during treatment is to dramatically alter our immune response. It seems reasonable to conclude that the post treatment symptons many people get are an extension of that altered immune response.
Bottom line is if the treatment drugs screw you up a lot worse after treatment then before, who cares if they activated something pre-existing or not.
Again, I'm not taking an anti-treatment stance. As a stage 3, I did decide to treat and the odds look good I will SVR. But the stance I do take is that lingering post treatment side effects do exist, they can often dramatically affect a persons QOL, and everyone deciding to treat should take this into consideration before making a decision -- especially those with little or no liver damage. From what I've personally experienced and read here, your doctor isn't going to give you the skinny, nor are the drug companies.
-- Jim
First, from reading both the recent threads and past related threads, it seems clear that while many post-tx symptons may have been pre-existing but much milder, other symptons are reported as having emerged only after treatment started.
As to those where pre-existing conditions prevailed, I'll use my own case as an example. I've had very mild psoriasis and seborreah dermatitis since my 30's. On a scale of 1-10 it impacted my QOL maybe .001%, in other words it didn't other than a visit to a derm every few years and the application of an ointment maybe on average once every three months.
During treatment these conditions flared and from everything I've read and from what my doctors tell me it's from the interferon. I ended up with severe guttate psoriasis over 60% of my body, disabling plantar pustular psoriasis on hands and feet and rosacea on face and neck. Forget QOL on treatment -- practically non-existent. Post treatment the plantar pustular psoriasis cleared up as well as the guttate. This was expected as the Interferon left my body. What does persist is the seb dermatitis and rosacea. Right now, on that same 1-10 scale, where 10 is the worst, I'm over 5 with a significant limitation of my outdoor activities not to mention aged and abused looking skin.
This is my example of how the treatment drugs flared and then persisted an already existing condition. I'm sure others have theres.
The point is that to those that suffer, it really doesn't matter if a condition pre-existed or not. If the treatment drugs magnify a pre-existing condtion 10-20 fold then the end result is just as bad as if it were a new condition.
It's said, for example, that those that lose their thyroids during treatment might have developed the same problem 10-20 years down the road. Does it make them feel any better that they might have lost their thyroid now instead of *maybe* in another 10 years?
And how many folks really know what lurks under the surface in terms of pre-existing symptons? Don't we all have pre-existing symptons to one degree or another?
What Interferon does during treatment is to dramatically alter our immune response. It seems reasonable to conclude that the post treatment symptons many people get are an extension of that altered immune response.
Bottom line is if the treatment drugs screw you up a lot worse after treatment then before, who cares if they activated something pre-existing or not.
Again, I'm not taking an anti-treatment stance. As a stage 3, I did decide to treat and the odds look good I will SVR. But the stance I do take is that lingering post treatment side effects do exist, they can often dramatically affect a persons QOL, and everyone deciding to treat should take this into consideration before making a decision -- especially those with little or no liver damage. From what I've personally experienced and read here, your doctor isn't going to give you the skinny, nor are the drug companies.
-- Jim
micro, could you tell us how many of those things were present to some extent before tx, if at all? if present, how severe were they? I find it useful to address the post tx effects in relation to what was present before tx, since most people are told that tx will aggravate existing conditions, and trigger others we are predisposed to. Also, bear in mind that if you did tx but still carry the virus, its presence will account for some of those symptoms you are experiencing. Neuropathy and cognitive issues are present in hep c infected people as well as in some folks that underwent tx. There might be a double whammy in the case of those who endured the meds, and still carry the virus, in terms of post tx symptoms, and they could be accounted for by tx or hep c itself.
just something to consider.
just something to consider.
I see a new doc in 5 days at a big clinic in Seattle, my guess is he will start me on Peg-Intron, but that is just a guess. You can bet your backside I will be posting here as soon as I find out, this is the best place to spend some time. I love this board. I'm scared about retreating, but made the decision to go forward. Somedays it makes me feel strong, somedays I want to pull the covers over my head.
The U.S.News and World article was actually a pretty good one, portrayed Hep C as an emerging epidemic. My opinion was one of agreement with the article, but I wrote about the stigma I have encountered and how we are at the beginning arc of educating the public. The magazine was thoughtful enough to call me before they published it, they used my name and wanted to be sure I was okay with it being in print. I was amazed at how it was not even a thrill for me. My mom was kind of thrilled, she doesn't really understand Hep C, but the article helped and then a few weeks later, she read my letter. I really didn't tell anyone, didn't seem like a big deal. Compared to having Hep C every day and going thru tx, it wasn't a big deal. We are all braver than we know.
Someday, we will have ribbons and celebrities and concerts, but for now, it is kind of lonely. Cept for here!! Have a good weekend, K.
Willows
The U.S.News and World article was actually a pretty good one, portrayed Hep C as an emerging epidemic. My opinion was one of agreement with the article, but I wrote about the stigma I have encountered and how we are at the beginning arc of educating the public. The magazine was thoughtful enough to call me before they published it, they used my name and wanted to be sure I was okay with it being in print. I was amazed at how it was not even a thrill for me. My mom was kind of thrilled, she doesn't really understand Hep C, but the article helped and then a few weeks later, she read my letter. I really didn't tell anyone, didn't seem like a big deal. Compared to having Hep C every day and going thru tx, it wasn't a big deal. We are all braver than we know.
Someday, we will have ribbons and celebrities and concerts, but for now, it is kind of lonely. Cept for here!! Have a good weekend, K.
Willows
Sorry you're having post treatment problems. As you've probably know we've had several threads during the past week dealing with post treatment issues including many of the ones you mention. Many of us believe that these problems are minimized by the medical community, and ignored by the drug companies in the sense that no significant effort has been made to study the issue in depth. Those of us who have felt the wake of the treatment drugs know the reality of these side effects and how they can significantly impact quality of life. Hope things get better as time goes on.
-- Jim
-- Jim
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