8:00 Confessions

[alagirl]

So I am about six weeks or so?  Maybe seven, since the end of treatment, which for me lasted almost seven months.  During my hepc treatment - which consisted of 1000mg riba and 180pegasys, these were my main health issues, some more serious than others.  I've listed them in kind of the order in which I found them difficult during treatment:

1) Pain in my joints, (arms, wrists, and hands), up and down my legs and in the joints
of my legs (hip joints, knees, ankles - especially on top of the ankle joints - and my heels)
2) Anemia (lol, can't believe I didn't remember that one first)
3) Nausea
4) Flu like symptoms & issues where I sweat and freeze to death at the same time and want to
crawl out of my skin.
5) Fatigue
6) Difficulty with motor skills (I would be holding a glass and my grasp would suddenly weaken and
it would fall.  I broke every glass in our home.  Also, difficulty with balance)
7) Aphasia (Cannot get the word I want to stay to come out of my mouth)
8) Difficulties with thinking as well as I used to in terms of numbers and figuring out large projects
for work, such as doing bids and the like.

Six weeks post treatment, here's where I'm at with the above issues and then I'll go on to tell you my confession and ask for advice.

1) Pain in my joints, (arms, wrists, and hands), up and down my legs and in the joints
of my legs (hip joints, knees, ankles - especially on top of the ankle joints - and my heels) Gosh, this is still my
number 1 problem and it is not resolving.  This really surprised me, because I thought it would start to get better.
2) Nausea - I am still having a good deal of nausea, I'd say its maybe 50% better.
3) Flu like symptoms & issues where I sweat and freeze to death at the same time and want to
crawl out of my skin.  Same with this, I'd say its 50% better.
4) Fatigue - This is much better, I would say 75% better
5) Aphasia (Cannot get the word I want to stay to come out of my mouth) I'd say its maybe 50% better.  Sometimes I despair of ever thinking straight again,
6) Difficulties with thinking as well as I used to in terms of numbers and figuring out large projects
for work, such as doing bids and the like.  I'd say its maybe 50% better.

Here's what I'm doing that is bad.  A few months ago the hematologist prescribed to me some 20mg prednisone tabs at 2x day dosage to try to stop the hemolysis I was having from the riba.  Because the hematologist I have was new to hepc, I didn't take the prednisone because it can cause probs with your body's own immune response to blocking hepc.  And plus, Gish called my hematologist and was horrified about the prednisone and told him, dont have her take it.  Ok.  Well now that I am FINISHED with treatment and presumably, dependent on whose view you go with on whether the hepc is gone from my body or just being suppressed from my immune system, it would seem that the prednisone couldn't hurt if the one view, but if the second view is true, it could be bad.

So anyway, my legs are just not doing well.  And this past week I have been taking a little of the prednisone because I hurt so bad.  And I know its evil and wrong and I'm just being weak, and that its bad for me on so many levels, such as suppressing my own immune system, hurting my bones and so many other things, but... I just hurt.  And my pain meds aren't cutting it.

And to make matters worse, my mother is making me feel guilty about taking any pain medication at all during the time I've been on chemo for hepc.  She doesn't and hasn't wanted me to take anything.  So she now wants me to come completely off any pain medication and I just don't feel I'm ready to do that, without ending up using the prednisone.  I want to make her happy and this causes so much internal tension for me.  I have three doctors and every single one of them has said to tell her to go fly a kite, that based on my x-rays and current issues I need to be on the medication I'm on.  But she is my mother and its just hard.  And I know that long term this prednisone that I am using for other than its prescribed purpose (pain control as opposed to hemolysis control) is much worse for me than just taking the pain medication.  But I don't take as much pain medication as I am supposed to because my mother makes me feel guilty, like I am bad for taking it if I do.  Maybe it would work for me if I took as much as I'm supposed to.  I am so sorry to lay all of this out here on you guys but I'll tell you, at the beginning of my hepc treatment, I really was doing ok mentally and emotionally.  I have noticed that as time has gone on, although I am still so grateful for the many blessings and amount of help I've received through this process, I just don't have quite the stamina and mental fortitude that I did in the beginning.  I am confident it will come back, but I am at just maybe a more tired and lower point at the moment, kind of at the bottom of my reserves.  I never would have gotten through this without all of you and I so want to thank each of you for your support.

[desrt]

My pain issues are lower back and RA in hands, both of which I had pre-tx, though the hands were definitely worse post-tx.More chronic occupational stuff than anything, as my job can be very physical at times.
My neuropathy is diabetic neuropathy which I can't really blame on tx except for the dreaded 'post-tx-weight-gain' many experience. There's also been speculation that the whole 'liver-pancreas / metabolic syndrome' issue comes into play either from having had HCV or from the tx.

[ponyshel]

I have been back and forth from the dr.s for my joint pain and my unusual swelling in my knee. He prescribed darvocetten100 every 6 hours for pain. He thinks I might have a torn meniscus. They ran blood work and the only thing is elevated wbc count. H e told me that if this doesn't resolve ( it's been 3 months) that He will drain and shoot it up with a cortisone shot...I am frantic on if I should take the injection or not. I can't function well without the use of my knee. I have djd..degenrative disc disease and post tx 11 months now. I have back pain all the time but have learned to deal with it over the years. I hate relying on pain meds (and they don't work that well) and i'm wondering if the cortsone would trigger my svr.....ANY input I would also appreciate. Hugs :) shelly

[Mikkimoe]

I've been on prednisone for 14 years with RA - has opposite effects for me - never gained weight. Gives me energy and takes away the pain - it's my friend...this may sound crazy but have actually snorted it once when I had the worse flare of my life. I'm only on 5 mg per day now with SOC and Enbrel and it has been a hell of a ride  so far. But the good news is at 3.5 wk PCR I was UND - EVR,,,so don't think they effected tx to much.

You got a go from me - take Care...mikmo

[alagirl]

do you feel your neuropathy and pain is more due to the interferon or the hep?  For me I had hepc for a very short amt of time, although it was acute and it raised my liver enzymes at the time.  So I feel my ongoing issues are from the interferon use and I wondered what your experience has been and how you would rate your pain, and what helps?  Is your pain better or worse after treatment?

[alagirl]

Thanks.  You know, I did double check about the pain medication with not only the pain doctor prescribing, but my psychiatrist, and my primary care doctor, and my hep doc.  They all said it was appropriate and asked, "Why do you even let her bother you."  But I think that its one of the few areas in my life where I have difficulty being rational, that is, when it comes to my mom.  It hurts me deeply that to me, she seems to be implying that she doesn't believe in me or my judgement.  I think part of her thing too could be pathological and complicated and could have to do with her guilt about not really being her while I've been ill.  But it still hurts my feelings.  And I don't know why I'm going into all of this with you guys, but its just been on my mind lately.  And also, I think I just have gone through a lot of my emotional resources.  I was really strong when I began treatment, regardless of the rape.  But now, although I do feel I have a strong internal core, I am tired and just trying to get my energy back mentally and physically.  And my son being gone too is very difficult for me.  I really miss him.

[desrt]

A couple points:

I joined this forum a couple years ago partly because I was worried that the occasional bump of cortisone I take was endangering my SVR. It was pointed out to me by mikesimon that there have only been one or two cases of massive bolus doses of steroid causing a sustained responder's PCR to temporarily become detectable and these went back to undetected immediately after the steroid tx. SVR appears to be remarkably resistant to steroids.

As for the pain meds - if you truly feel caught between your Rxing physician and guilt tripping family members (happened to me) find a third party that can give you another perspective (shrink, 12 step sponsor, whatever). It works for me.

Good luck.