Post - Tx Long Term Problems

[Micro2]

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

[jmjm530]

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.
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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

[jmjm530]

That's Zantac, not Xanax above, although maybe I should have taken both :)

[Forseegood]

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...

[Micro2]

Prior to Tx I only had mild fatigue. Funny.. my primary doc admits that I am not the same person that I was prior to Tx. I am...truly changed. I am not necessarily a worse person (other than physical)...I am a different person..and thats who I am trying to live with. thanks, Michael

[Califia]

One more thing:  And so what only 1 in 3000 male geno 1's become confined to their homes with interferon-induced priapism?  I mean, who better to bring that story to than US?

[Kalio1]

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.