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

[tulsatime]

I am so sorry to hear that. I know a lot of people here have the same long term effects from TX. I am sure they will post tonight or tomorrow. You are not alone... I just wanted to respond as not leave you hanging.  Hang in there... Take care

[willows]

I can totally identify with "the person left after tx", I spend a lot of time every day trying to learn this skin I'm in.  Just the impact of having a chronic illness is a HUGE impact on a person, totally changes body image, literally rewrites who we think we are.  And the more we learn about Hep C, the more we get rewritten.  

I went on anti-depressants after failing tx and am still on them, not for everyone else, but they seem to help me.  I worked hard at finding projects that make me feel worthwhile while I stay at home.  I have had some success, learned the computer, taught myself photography, but first, I had to learn to grieve losing the strong, brave girl I used to be.  I aged 10 years from tx, and struggled with all the changes, but now I am mostly okay with who I have become.  A little bit of professional help, plus the meds and a lot of education about Hep C has finally got me comfortable in the virus ridden skin I live in.  I can brag too, I had a letter to the editor published in U.S. News and World.  I had a strong response to an article they had about Hep C, made my opinion known and saw my words in print.  This way of coping is not for everyone, but to find the fighter in yourself is totally possible.  I like being a fighter, feels better than a victim.  But it's tough getting here.

All these brave words and me starting tx again in a week and I'm scared sh!tless.  But I know it will pass, I'll get bad sides, cope with them, want to die, pray I clear and go on.  I've said it here before and I'll say it again, someone once told me..."Only those that try tx and fail understand the true face of the dragon"...I believe those words.  This is partially how I was redefined from Hep C and failing tx.  Acknowledging the change, being sad and then deciding to fight and never give up has saved my ass.  Hope it helps you.
Willow

[Kalio1]

Thanks a lot for your post, I really relate to what you said. I am on round two and I try to deal with it the same way as you. Some days I succeed. I agree, better a fighter than a victim. Wish I could read your letter to the editor! Pretty impressive, US News and World Report no less!
If I don't clear this time, I gave it a he!! of a run for it's money. I love a good challelnge..heh.
I'm a little more than half way through now, when do you restart?

[Kalio1]

Sorry to hear you are coping with these issues. Do you ahve a good pain clinic or doctor's group in your area? I know they have some success with fibromayagia. My neuropathy was helped tremendously by a good pain doctor.
Hang in there, I hope you find some relief soon.

[jmjm530]

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

[willows]

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

[cuteus]

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.

[jmjm530]

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

[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...

[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.
---------------------
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]

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

[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.

[Califia]

I appreciate your clarification.  Frankly, I haven't been here continuously and know nothing about the dogfight to which you refer--was merely reading what you wrote and excised a part that I thought fairly represented the whole of what you were saying.

[Kalio1]

I am not going to go round and round on this anymore, as far as it has been established by the medical community post tx issues are in fact "rare" or "uncommon" and no evidence presented by you or anyone else disproves that at this point other than antecdotal experience, dotors view it as a rare occurance. A group of people's experiences on the internet does not a fact make. Doctors need facts. No data, no facts. No facts, no answers, no answers, no help for the sufferer. You think they are rampant, I think they are rare. Leave it at that.
The rarity of a situation is irrelevant to the sufferer, it doesnt lessen your suffering, it only makes you feel as if others are discounting your problems, that is not what I am saying. Judging by the number of people who check in here on a regular basis to say how great they feel,clearly many go on post tx without these issues. If we go by antecdotal evidence for negative post tx issues, we should balance that with antecdotal evidence of positive post tx experience of those who stop by to say how GOOD they feel and how grand life is post tx and there have been lots of them. What about  ALL the people that feel good that do not ever come back, their experience has to be accounted for also in the equation. If you are having problems post tx, you are more likely to come to a place like this to find answers so it skews the view.

[returntosender]

Speaking of post tx issues, what is going on with your stomach problems - as I recall you stopped the proton pump drugs and went with lifestyle changes.  I developed some pretty nasty stomach problems on tx and they are continuing 5 weeks post tx.  I really dont like the proton pump drugs.  How are you doing without them?

[Kalio1]

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. Preexisting conditions and having had Hep C or long periods do factor into the equation. It is noted in the meds. literature that the tx can cause existing conditions to flare or increase but it is not noted that you can suffer from long term issues due to the tx. To me, that is the issue, that patients need to be warned and made aware if they can end up with long term issues if it is true they are due to tx when making their decision and evaluating the risks. With  no studies to go by, it hasn't been established by the med. community that they are related to tx so the patient can be fully and properly informed before hand.
Clearly studies need to be done so that can be established or refuted.
I think it is a problems with MANY drugs approved by the FDA. Vioxx is a good case in point. These Hep C drugs have been around quite awhile now so it seems to me these studies should have been done by now as they have large pools of patients that txed to learn from.
I hope you get some relief soon, sorry you are going thru this.

[Califia]

AMEN to Jim's post.  

Me, I'm the neuropathy kid with constantly buzzing, throbbing, tingling feet and hands.  I'm also very prone to severe spasms in those parts, many of which like to occur in the middle of the night, casuing me to do my little St. Vitus dance routine.  A little annoying, especially for the two other creatures I share a bed with.  (Me, I'm resigned to it and hope it will abate at some indefinite point in the future.)   Anyway, let's just say I'm in a chronic pain state, but I'll take it any day over fun with dermatology.

[Califia]

Just a quick response to your "if it is true" qualification as to the veracity of reports about post-tx conditions.  (Our posts crossed.)  You know, in the medical community, good practitioners rely to a great degree on anecdotal information, and that information is already there in abundance.  For example, the head of Neurology for Northern California Kaiser agrees with me that my neuropathy is interferon induced.  He also reports that the literature shows this happening to a hapless 1% of interferon consumers.  Does he take that low figure as gospel truth?  No, he does not.  It is his strong impression from clinical practice--not from reading the existing medical literature--that this figure should be much higher.  As he lamented to me, the reporting mechanism are just not in place.  Current documentation is piecemeal, to say the least.

[jmjm530]

Thanks for asking. On a scale of 1-10, with 10 being my worst during treatment, I'm now around a 2, which I could be very comfortable with for life if it doesn't progress any.

What I had/have is something called Laryngopharyngeal Reflux (LPR). Unlike ordinary GERD (chronic reflux) heartburn isn't normally the major complaint but generally does its damage higher up and can often result in sore throat, damaged vocal chords (hoarsness) ear and sinus problems, etc. I had a mild case of LPR prior to treatment and it flared during treatment. Combined with other stomach issues and taste alternation, eating meals and the aftermath during treatment was more or less a living hell. It's interesting how much something we take for granted like eating and other bodily functions can throw us off when they stop working as advertised.

I am happy to report that in spite of some lingering symptons (hoarseness, sinus...) that I'm now enjoying all my old favorite foods to the point where the 30 pounds I lost during treatment have all come back and then some. In fact, I'm now trying to lose a few pounds which is a real switch from treatment !

Five weeks post treatment is still very close (I'm 16 weeks post)  and hopefully most of your gastro sides will resolve soon as mine did.

Regarding PPI's, etc, I weaned off double Nexium around week 4 or 5 post tx if I remember correctly. Some rebound but manageable. To help with the rebound I took antacids such as Tums and some H-2 inhibitors like Xanax. For the past month I pop a Pepsid Complete (combo H-2 inhibitor and antacid) every day or so if I eat badly and get some hearburn. The doctor also prescribed what is advertised as an instant acting PPI -- Zegerid -- which can be used on a once in a while basis as opposed to having to use every day. This past week I don't believe I've used anything, in spite of drinking coffee, a slice of pizza here and there and a few beers.

I also have this theory of competing illnesses which maybe I'll publish in Mad Magazine if it's still in business. Theory basically is that the body can't tolerate too many things going wrong at once so a dominant disease/illness will overtake a less dominant one. (The exception is during treatment when everything seems capable of going wrong at the same time)  In my case, as my skin problems became worse post treatment the Reflux became better. I don't really stand by my theory but probably will sit on it if pushed into a corner.

Hope you feel better soon and don't be afraid to experiment with different meds, including over the counter antaids, etc,, to carry you through the transition period. I think I turned the corner on the gastro issues around week 12.

-- Jim

[jmjm530]

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

[Califia]

Just FYI, and I don't mean this in the spirit of combat, I've been around Hep issues and people since 1990, and my informal census over the years is that a majority of the people who can answer in the affirmative to "Are you EXPERIENCED?" can also state that they've encountered long reentry periods back into so called physical and mental normalcy.  I think that someday soon the whole field of immunology is goiong to rear up on its tiny infant feet and declare to the world that immune-stimulating drugs, of which interferon is one, pegylated or no, have a profoundly alterating effect on the terrain. Some effects are to the good, to be sure.  But a lot of 'overdrive' situations also develop, which is to say various aspects of autoimmunity.    So what's the point of discussing it here?  Well, we get clues of the 'oh, that's started happening with you, too?' kind, and it's damn helpful for all of us.  Knowing that my ex-dancer friend L. developed crippling neuropathy after an only 4-month long combo treatment (her platelets tanked beyond repair, anaemia was overwhelming, and they terminated) was very useful to me when I found myself in exactly the same place.  And no, I ain't no couch potato.  Usta coulda point and flex with the best of 'em.

I mean, this is what we can do here, other than argue and slag each other off.    I'd be happy to work with a few others in toothcombing through the archives to pull references to post-tx problems.  We could then try to systematize the data and attempt to get other forums to do the same. Then we could present our data to Hep C Ambassadores, a good organization with tons of doctors on their board of directors & brainstorm with this activist &  PR-experienced cohort to see how we can disseminate this material, along with a strongly worded proposal that all dispensers of Hep C treatment be obligated to collect followup data and to deposit in a central place.  HCV Advocate people might also provide guidance to us, and are another set of logical folks to hook up with.  Ya think?

[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?

[DoubleDose]

I think that all we really need to do on the forum is to honestly relate our experiences of being on tx and life after tx.  We all have somewhat different stories to tell and outcomes unfolding.  But, I really do NOT like anyone telling me, or anyone else, that they should not tell the truth because it might 'frighten' someone, or make a 'newbie' too nervous to do treatment.  
We all try to give an honest, and objective account of our experience, and point of view.  I think THAT is plenty sufficient.  The FACT IS that many people do seem do experience problems after tx that they did NOT have before tx.  That is not so 'frightening', or surprising to most people who have read anything at all about interferon, how it works, and what it can do.  I really dislike being contradicted when it comes to relating my own personal experience, and describing what my post-tx problems involve.  It would be the same as me saying that those who do not suffer post-tx problems must be imagining things, or are not bright enough to understand that they do have problems.  But I do not think that we are trying to say that.  I do believe that many people do the tx and do not experience lasting after-effects.  I have no problem with that information.  What I do NOT want to hear is that I must be mistaken about my own personal experience, or that I should 'keep quiet' because I might be the 'boogie man'.

We all need to just 'tell it like it is' for each of us.  The good, the bad, and the ugly.  How else will we find out the real truth about HCV, tx, and everything else related.  No muzzles please!

Thanks for respecting all of our points of view.  And, by the way, we will ALL help the 'newbies' make their way through tx.
That is why many of us stay on the forum after clearing!

I fully agree with many who have posted on this thread, and just as strongly disagree with some others.  That is how 'opinion' works.

DoubleDose