Continuing Discussion: Post Tx experiences, sx, etc. Controversial Issues....

I opened this thread to pick up on conversations from the past week regarding controversial issues, post-tx problems, dialogue with top HCV researchers, and any other topics of interest to the forum members.

Please feel free to update your status, ask questions, or just chime-in on past conversations.  

DoubleDose

[Forseegood]

Rocker For Life, if youre out there, you might start jumping up and down if you read this, (just kiddin) but for anyone else, it is kind of interesting....

http://tinyurl.com/ehwal

[Forseegood]

thanks for the thread. The following are some research studies I received from Hepatitis Neighborhood, re studies comparing treatment regimens...you only have to do a small registration and it's free.

http://tinyurl.com/fahaa

[Forseegood]

now I hear that they are fixing to do a trial with Alinia and Pegasys alone...the hits just keep on coming...

[DoubleDose]

Don't feel bad.  Many of us here are post-tx (I am almost three years), and still feeling the need to ask questions and share thoughts.  The feeling of being HCV motivated seems to live on in many of us....probably because the SVR or cure is a SLOW process, and often does not immediately feel like being cured.  I think that post-tx issues are pretty common, and provoke many of us to voice our concerns.  The forum is for support, enlightenment, sharing, and expressing for ALL those touched by HCV, whether prior to tx, in the depths of tx, or wrestling with the aftermath.  Eventually we will all hopefully get to a point of full, independent functioning, without the need for a support forum.  But for quite a few, it seems to take some time.

Best wishes to you Ina, and I hope you are beginning to feel better every month.

DoubleDose

[DoubleDose]

Ina:  I would like to see your post regarding stress responses.  I do know that stress is a real trigger for me now, in the post-tx life, and that I cannot handle stress nearly as well as in the past.  I seem to quickly fall into anxiety attacks, and they are accompanied by many physical symptoms as well.  I often feel like I am having a 'lupus-like' flareup when in very stressful situations, and even experience a mild malar rash, joint pains, and feel depleted and jittery.  I am much more prone to feeling depressed and/or anxious as a reaction to stressful events, or sometimes even little relationship rough spots that would not cause most people to blink.

I am working to de-fuse my stress reactions, and am reading and listening to tapes to help in stress management.  I really do think that much of this is a post-tx effect of the interferon.  Our systems are different, and more fragile in some ways.  In other ways we are stronger, healthier, and healing.  

Best to you today.

DoubleDose

[cuteus]

I really wish I felt stronger, more energetic than before tx, feel definetely better than during tx, though, that is a given! Maybe if I had treated while younger in age, i would have recovered 90%? Will never know. I just wished I had chevy's energy level post tx, but come to think about it, I never did, not even as a child. How did I forget that? well, that last one was a duh question!
So, now I must learn acceptance.

Some odd thing was recently dx in my GI system, a C diff infection that seems to be on the rise nowadays. It is not a pleasant sample to collect, but it might explain many GI problems we got with HCV, during and post tx. I did not fit the profile on the risk, so don't let the fact that you don't fit it either deter you from requesting the test for the toxin.

[DoubleDose]

I would agree with both of you.  The benefits of doing the tx, and getting the SVR outweigh by FAR the fact that some of us may have lingering side effects.  Some of us may even experience some permanent changes after tx that are nagging, troublesome, or even for some disabling...in the rare cases of severe neuropathy or depression.  Still, even with post-tx issues, I feel ten times stronger and healthier than I did before tx.  My health was really suffering, both from the liver related effects of HCV, and the extrahepatic symproms which I had always experienced.  I consider myself a 'work in progress' and plan on continuing to get stronger and healthier, through exercise, healthy lifestyle, and good relationships, etc.  I am ALWAYS glad that I tx'ed, and would do it again had it been necessary.  I spent a total of 33 months on tx, and have survived it pretty well...and am now without one big thing:  The VIRUS!!!

That is the real goal!

DoubleDose

[cuteus]

to chime in the post tx issues: blood work by the rheumy is all within normal: hla b27, cryo, tsh, ana, and other rheumatic bloodwork is normal. only issue is the pre tx, above normal RH factor (about 15), still there. I still feel the joint aches and slight fatigue of pre tx, but has remained at the same level or slightly better. A tad of cognitive issues, but can't remember how bad it was pre tx, so can't compare. Always had latin temper, so the post tx impatience could be the same, although It seems a tad enhanced, can't really say is due to tx.
So, for those considering tx or on it, post tx issues are not a given and what is there, is not severe, life threatening or disabling in the majority of people. Some chronic issues, though not crippling, can lessen your quality of life, but they can be managed in most cases.

awaiting a phone call on the 18 mo PCR...

[DoubleDose]

Ina,    I share many of your thoughts and feelings.  I do think that a low level depression is at work, and causes the anxiety, the lack of initiative, and the dark thoughts.  I am still determined to pull out of this without the use of AD's.  I used them briefly, twice, after my first tx in 1998, and did not like the side effects at all!  I do not know that they were very effective for my depressive symptoms either, and on top of that, stopping the medications was a mess.  I had immediate withdrawal symptoms that made me feel like I was going into a coma.  I had to wean off slowly over three months to finally get off the medication.

My biggest problem is inertia, and lack of motivation.  Sometimes I can just sit and stare for hours.  Then I force myself to engage, and I am able to function just fine.  My physical strength is very high, and I really am much healthier now, but seem to not feel vey excited about much of anything anymore.  Several members have mentioned post-traumatic stress syndrome, and it fits the profile.  I still believe that I will slowly pull out of this state, and return to normal function.  I may be kidding myself!!!!

Let's keep the dialogue going over the next year, and see where it leads.

DoubleDose

[DoubleDose]

As you can probably guess from previous posts and threads on my part, I am with you 100%!!!!  You hit it right on the head.  Doctors are so specialized/ compartmentalized today that they cannot see the forest for the trees.  Even pre-tx, just looking at the spectrum of HCV related symptoms, there are very few physicians that can successfully relate the various symptoms to HCV illness.  Only when they see the rising LFT's do they suspect HCV, and then they are convinced that it is just a 'liver virus'.  No other symptoms of course.  The other things you experience must all be from something else (go see another specialist!), or, its all in your head ( I can refer you to a good therapist!).  

Where are the good old-time diagnosticians anymore?   Why do doctors not even listen to their patients, and their physical manifestations of disease?  Why don't the different branches of medicine communicate with each other, and try to understand the 'cross-functional' impact of many diseases?  They might be able to better diagnose and treat many of their patients, if they did collaborate with each other.  Its as if each part of our bodies have their own 'disease domains' which can be treated individually and 'cured', returning the patient to good health.  If other problems continue, or crop up after successful treatment, then they must be from something else!  WHAT a simplistic point of view!!!

I suspect there are many, many post-tx HCV patients out there who have gotten their SVR and have been told to 'scurry along 'and have a great life, in spite of the fact that they were now experiencing a whole new myriad of problems.  "can't be from the interferon you know, because its out of your system in a few months.  You must have other problems.  The interferon doesn't cause any long term problems..."  etc. etc. (the drug companies told us so)

SAYS WHO???   I see a good number of people on this forum alone that seem to have developed one problem or another after tx.
Is it all just a big coincidence?  I doubt it.  Do the drug companies want to understand what might be going on?  I doubt it.
Do the doctors really want to study these after-effects, and pinpoint the pattern and cause?  Again, I doubt it.

You can draw your own conclusions as to why, but the bottom line is that we are getting very little in the way of diagnosis or treatment for any of these problems.  Its as if the medical community does not want to acknowledge the obvious, and have to deal with the problems.  Maybe because they have no answers or practical treatments.  Maybe because it feels better saying you are fully cured, than dealing with the actual fallout from this disease, and its treatment.

I have become very 'auto-immune' since completing therapy, and my patterns are very much like Lupus, Sjogrens, etc.
Don't expect much in the way of help, or even understanding.  You must just have some other problem!  Need a referral?

I laugh, but its not really funny.

Please stay in the conversation regarding this subject.  It is a regular issue on the board, and we need all the input that we can get regarding these post-tx problems.  Did you know that the rheumatologists, and the Osteoarthritis Docs are just starting to realize that many people coming to them with joint problems actually have HCV!  What do you know!  Isn't that a LIVER disease???  Eye doctors are also realizing that many severe dry eye cases may be caused by HCV.  Don't any of these specialists read about anything other than their own specialty?  This stuff has been general knowledge for years!

DoubleDose

[naile]

I am so happy to have found this board...I thought, or at least my doctors made me think, I was alone in the problems I have been suffering from post tx -- now almost 2 years.

I went into tx knowing that I had positive ANA antibodies, and "some" (becuase the dr's really underplay this issues) of the potential risks or problems that can occur with positive ana patients and interferon tx.  Well, per the norm, the doctor who is treated just the hepc, and not the whole body, was not concerned at all, and told me there was an extremely remote chance that I would have any sort of reaction.

Fast forward two years post tx -- I have been suffering from a myriad of auto-immune illnesses becuase my ana antibodies have gone wild.  I have gone through graves disease, fibromalygia (fibromyalgia), bechets disease and now have Lupus/connective tissue disorder.

I will not take steriods for the Lupus, becuase that is yet another fun journey in the world of medication that makes you lose your mind...I just take the anti-malarial medication, which does basically nothing.

When I get a cold, in turns into a complicated bronchitis, when before tx it was just a cold.  I am eternally grateful to be rid of Hepc, its a killer no doubt, but what gets me is the way western medicine continues, relentlessly, to compartmentalize all their treatments of a patient.

The doctors attitudes are like  - hey, I took care of your hepC, don't know what you are talking about with this other stuff. Or how are you doing mentally? Most patients feel fine after tx within 4 mos.  Don't really know what the probelm is.

When I come back and tell the Hepc doc that my ana's are out of wack, and doesnt he think there is a correlation between the tx and the auto-immune illnesses -- he/they say: hmmmm. don't know, hasn't been enough research yet really to substatiate that. some patients have thyroid probelms, but beyond that, don't really know.  You need to go see a specialist.

What friggin specialist -- you know how many specialists I have had to see, cause the auto-immune illnesses keep jumping from one to another, and there is no ONE doctor you can see to help you put all the pieces together, casue EVERYONE is a specialist.
No one looks at the whole body.  Now if someone asks -- do you go see your general practioner to help you, well the answer is this is way, way over his head too.

No one is researching long term side effects on tx, or tx on those with special conditions such as something as simple as having positive ana's.

So its all in the lack of information and communication im the medical community.

I know I sound a bit testy, but I have been tested, no pun intented, really, for two years now, after what you all know is a grueling one year of tx.

Yes I am grateful to be rid of the dragon, but everyday I wake up and feel like **** becasue of one or the mixture of auto-immune illnesses I have from tx.

So, go figure.  But is ANYONE ASKS if there is a connection between postive ana and treatment causing complications post tx, the answer in my story is a defintive YES.

Would love to hear your comments.

Peace

[naile]

It makes me feel so much better to get the responses I received.  I felt like I was in no man's land, all alone.  I always suffered from slight depression issues, and have been high strung, but I was always super active, always creating, producing....now I am just depressed, and when I find the energy at times to begin things, I can not really put all the energy into them the way I used to -- and its not age.  I am only 45.  I just get pooped out.  So now, I am weary about committing to things.  I stopped working full time, becuase I just got too tired in the afternoon.  My depression is 100% worse than it ever was before -- and that I knew going into to tx.  They said people that had a tendency towards depression could get worse, and now i am living proof to be on of them.

They had me on ssri's, and now  they are switiching me to some med called lamictal which is used to treat bi-polar II patients, which is totally freaking me out, cause I have never in my life been remotely diagnosed as anything resembling bi-polar II.  I know its the interferon, and everything that has gone on since the tx that has made me more loopey.  So much time alone, so dis-connected from the world. So anti-social.  I don't drink alchol or take drugs, so going out at night with people that are socializingand drinking isnt that much fun.  I get really tired at night, and my idea of a fun time is sleeping.

I have been far more isolated than I have ever been in my life.  I used to be so much more social.  Some of you sound like you have very understanding husbands, I unfortunately do not.  My husband prefers not to be bothered with any of this -- he figures went through tx with me and thats enough.  So he's not there for me.  Today I gave him a hue fathers day present, and I was feeling very depressed cause they were switicing me from the meds (which is supposed to cause some depression in the beginning until your body adapts), and all he could say to me was, quit looking to me for support, find soemone else.

At least I found this board.  I feel like I am going mad.  I have two young kids 8 and 12, and I feel so guilty that mom feels like ccrap so mcuh of the time.  But I have to keep reminding myself that, this this is an illness.  I try so hard every day...I run around endlessly for them.  I jsut feel like my life is worth nothing since i got off tx, except for being grateful that I dont have hepc.

I am afraid that others who see me on the outside see me as looking basically fine, and don't know what my insides are like, so think i am just bullshitting and whining and complaining aout nonsense -- that I am spoiled or something.  The doctors dont make me feel much better, cause they dont connect the dots...my rheumy does...which is good.

I want to feel happy, alive, out there, connected, living life, active, surrounded by people -- but it just doesnt seem to be connecting.

I started going to this group for recovering addcits and people with issues called DBT - dialectical behavior therapy, but i didnt feel like i fit in there either.  i wish there was a group for people that were post hepc tx groups that still live with complications....becuase only we know what it is like to have gone through what we went through, and still go through with the medical field, while still not feelig right.  who else could possibly understand?

if anyone want to email me directly, i am more than happy to chat, i am lonely, and could use convertsation.

***@****

peace everyone -- you are all in my prayers