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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
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.
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
very nicely worded post, I'm just hoping that youre skin problems will be significantly better soon, I know youre thumpingly bored with them by now, but I'm confident that they will be better in, let's hope, the not too distant future...
Kalio: That is soo true that to the person suffering the conditions it really doesnt matter when they started, but it does matter when trying to figure out what role tx plays in it.
---------------------
Maybe I wasn't clear enough but of course it matters when trying to figure out the role treatment plays and that was my point, at least in any practical sense to the patient.
If treatment flares or bring's out an underlying condition that persists after treatment, possibly permanently, then what is the difference from the patient's point of view? If you're making a technical argument OK, but I see no difference between the two when it comes to someone factoring in the possiblity of long term side effects into risk/reward equation for a treat or not to treat equation.
Having said that, many report persistent side effects that were NOT pre-existing. So what is your response here? The literature doesn't say this. C'mon. I think Rev put it very well in another thread:
"I've yet to "meet" a person that doesn't have problems post-treatment, directly due to the combination of peginterferon and ribavirin. Long term studies on the subject are scarce, if any exist at all. We don't need them to know these things are happening with our bodies/minds post-treatment. The validation comes from the people on these forums. Remember the words "believe the children"?"
Now how we factor all this into a treat or not to treat decision is an entirely different matter and two people can agree on the same data regarding side effects and legitimately come to different conclusions. But to say that persistent post-treatment side effects are "rare" as you have in the past, just doesn't seem to fit in with the many experiences documented here.
-- Jim
---------------------
Maybe I wasn't clear enough but of course it matters when trying to figure out the role treatment plays and that was my point, at least in any practical sense to the patient.
If treatment flares or bring's out an underlying condition that persists after treatment, possibly permanently, then what is the difference from the patient's point of view? If you're making a technical argument OK, but I see no difference between the two when it comes to someone factoring in the possiblity of long term side effects into risk/reward equation for a treat or not to treat equation.
Having said that, many report persistent side effects that were NOT pre-existing. So what is your response here? The literature doesn't say this. C'mon. I think Rev put it very well in another thread:
"I've yet to "meet" a person that doesn't have problems post-treatment, directly due to the combination of peginterferon and ribavirin. Long term studies on the subject are scarce, if any exist at all. We don't need them to know these things are happening with our bodies/minds post-treatment. The validation comes from the people on these forums. Remember the words "believe the children"?"
Now how we factor all this into a treat or not to treat decision is an entirely different matter and two people can agree on the same data regarding side effects and legitimately come to different conclusions. But to say that persistent post-treatment side effects are "rare" as you have in the past, just doesn't seem to fit in with the many experiences documented here.
-- Jim
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
To take out of context part of what I said and quote it is a bit misleading. Without proper studies we can ONLY go by antedotal evidence and we need more than that to get doctors to address the issues and to warn patients and help them post tx. To establish a medical "truth" you have to have more than antecdotal evidence as I am sure you know. My doc also agrees it does happen but so what, that doesnt help one of the people suffering! I am NOT saying patients complaints aren't real (as taking just " if it is true" insinuates out of what I said) at all, but doctors often IGNORE patients when there is only antecdotal evidence and no medical factual basis ie medical "truths" to back up their complaints. As we see from those going thru it, doctors often tell patients either their complaints are not related to tx or tell them it is in their head or caused by unknown reasons because there is nothing being done to collect data. Without studies we do not know for a fact if tx is the cause or having hep c is the cause or oxygen deprivation during tx is the cause or some other mechanism of tx is the cause or what it is caused by, even though it seems obvious it is caused by something having to do with tx, many doctors want established facts before they will address it and treat it and make that connection. This is why so many patients are under or improperly treated or ignored for these problems in my opinion.
People need a bad guy in this dogfight and I am sick of being painted as someone who doesn't believe the complaints are true in this forum. If you want to blame someone blame the doctors and researchers. Same goes for the "supplements are beneficial" argument, maybe they are, we need clinical facts to back that up, the sooner the better because if it can be established they work, it will give people options.
It needs to be studied before we know for A MEDICAL FACT that tx is the cause and I can't personally do anything about the fact nothing is being done.
People need a bad guy in this dogfight and I am sick of being painted as someone who doesn't believe the complaints are true in this forum. If you want to blame someone blame the doctors and researchers. Same goes for the "supplements are beneficial" argument, maybe they are, we need clinical facts to back that up, the sooner the better because if it can be established they work, it will give people options.
It needs to be studied before we know for A MEDICAL FACT that tx is the cause and I can't personally do anything about the fact nothing is being done.
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