started treatment without blood work first

[mll]

I don't know if I totally screwed up or not. I was diagnosed in Aug. 02 w/ hcv. My biopsy showed little damage, grade 1 stage 0. I decided to treat to try to get rid of it before the damage starts. The nurse gave me the prescription 6 months ago, we were awaiting approval from insurance. She gave me papers to take to the lab before I started and told me I would have to come in for her to show me how to do the injections. Then on a different visit she gave me the kit with the video of how to, etc. Finally got the approval. I called left message after message that I would be starting on Sunday. My doctors nurse never returns my phone calls about anything. So finally I thought the kit she had given me must have been what she wanted me to come in for. The evening before I started I found the blood work papers that I hadn't done so I called the doctor's office and got the Dr. on call. He said I could go ahead and start the peg/copeg and go in on Monday for the blood work. So that's what I did. Then on Friday the following week she called saying we were ready to start. When I told her I had already started she chewed me out royally. Saying I wasn't supposed to do that and I knew it. I told her I called 4 times and she said she knew that. She said the doctor wouldn't be happy and I needed to come in for different blood work immediately. Have I screwed this all up? I don't think they understand the anxiety related to all of this. I felt like I was onm my own and was being smart by calling the Dr to make sure before I started. I don't see him until April 1.

[deve8rs]

I'm post tx by like 5 years and am getting worse and worse with vision, cognitive functions, body pain and depression.
It's like my side effects never fully went away.

Can't seem to find any info on really post-post tx.

Can anyone suggest a site, please?

[madbyron]

Wow, you are having a time of it! I can relate to just about all of the residuals you mentioned, and a couple others too. The trip was definitely costlier than the advertised price. And yes, the cognitive impairment is by far the most frustrating. I find most conversations quite challenging and I believe that's one of the reasons I had such difficulty finding a job. I simply don't interview well. I did finally get an offer a couple weeks ago and plan to start next week. But I'm concerned about remembering peoples' names and understanding the intricacies of processes and so on, to say nothing of the quick ramp-up to a 50/hr work week.

Like you, my vision and ear problems are improving, but some of the other stuff still lags. The thyroid is totaled, psoriasis is stable, joints are stiff and swollen, and I feel like I have half-set cement for brains. But I am sleeping well, which makes the rest tolerable. I hope your recovery is on an upward path.

[willing]

raheem : ok, I get it, red spots as in rash, not as in " the cotton wool spots changed color". Much, much, better -  sounds like there's a good chance the blurriness will resolve. Perhaps you should mail your ophtho a <a href="http://www.hepcassoc.org/news/article33.html">thank-you note</a> for your last visit (reminder: less golf, more CMEs!).

madbyron: congratulations again on all your good news. It's great to hear you so well and good luck with the new job. I think/hope part of the cognitive and language problems is exercise: as one does more, fluency, hopefully,  returns.

[cindee]

Thank-you so much for your reply. I too think sometimes we are still a bit anxious for all these sx to go away!!!! But we're on the downhill slide. I hope you are feeling well. Sincerely, Cindee

[raheem]

Ophthamologist checked out my eyeballs and said "no pathology", wants me to step up tp 1.75 reading glasses from 1.25.  He said he is not aware of any studies that linked interferon tx to blurry vision.  I think the guy is out of touch, even the product literature says 4% experience blurry vision.  I just hope it corrects itself later.  Red spots are no big deal, just kind of itchy and I look like a leper.  My GI guy did say it takes 5 weeks or longer to clear the interferon after tx and the ribavirin should clear quickly in a few days to a week. I'm lucky to be where I am, but these last few weeks seem particularly difficult and slow.  Almost done, 7 more weeks.

[willing]

thanks for asking guys. Overall, I feel like Rip Van Winkle waking up to find that I've gotten noticeably older and.. OMG there's a lot of deferred maintenance to deal with! A leaky roof, fields overrun with weeds, etc., etc On the plus side, the individual residual effects all seem to be heading in the right direction : vision is much less blurry, ringing in the ears is subsiding, stamina is slowly building up. Joint pain, energy level and cognitive effects (short term memory, difficulty articulating thoughts, a tendency to space out..) seem to be the slowest to recover for me. The  experiences we share on this board are the only map I've got (try to find a description of residual effects in the Roche or Schering docs) and they point to near complete recovery eventually so I'm hopeful all/most of this will pass. However, as many others have said, it sure does take a while, and unlike tx itself, you don't know how long.

Cindee: about 6 months seems to be the outer edge - so I think we just need more time. Exercise helps me with energy level but I don't have any suggestions for the joint pain...

Raheem: hang in there dude - you're so close. Just keep everything  stable till the train pulls in. The red spots don't sound too cool though - did you ever get an ophthalmologist to check (see, there goes the memory again)?

Tallblonde: At this stage I don't feel doing tx was clearly a mistake: given my age (just turned 50) and damage (stage 2 at last bx, early cirrhosis on a previous bx) it was probably the right call. But I definitely underestimated the total cost  and will not do combo tx again. I've also become deeply suspicious of Big Pharma marketing.   If I relapse, I'm pinning my hopes on blood-based fibrosis markers and anti-fibrotic agents (including maintenance-dosage IFN) as a way of monitoring and controlling scar tissue buildup.

[FlaWife]

Wow - I had no idea! My thanks to all of you, I will make sure he reads this when he gets up today.

[jonihs]

My Dr. had me do a dialated eye exam, see a shrink, and redo all my old bloodwork from 7/02, before beginning tx. I have cirrhosis, so my blood work was done weekly until everything leveled out and stayed there, but there are standing orders at the lab that if I have any concerns, they do bloodwork on my request. Also when my platelettes went down, she was ready to give them to me IV rather than stop my tx.,or lower my dosage. I live in a little bitty town in Montana and I thought that would be a disadvantage,  but I was wrong. I am her only Hep C patient,(I was her firsrt patient when she moved here in Aug 02 right after she moved her. She has freinds from Boston that she went to med-school w/ and if she has any questions, she calls them. I guess it helps to be in an area where each patient is a person, not a file!     Joni

[jonihs]

My Dr. had me do a dialated eye exam, see a shrink, and redo all my old bloodwork from 7/02, before beginning tx. I have cirrhosis, so my blood work was done weekly until everything leveled out and stayed there, but there are standing orders at the lab that if I have any concerns, they do bloodwork on my request. Also when my platelettes went down, she was ready to give them to me IV rather than stop my tx.,or lower my dosage. I live in a little bitty town in Montana and I thought that would be a disadvantage,  but I was wrong. I am her only Hep C patient,(I was her firsrt patient when she moved here in Aug 02 right after she moved her. She has freinds from Boston that she went to med-school w/ and if she has any questions, she calls them. I guess it helps to be in an area where each patient is a person, not a file!     Joni

[cindee]

I am now 4 months post tx. and I know how you feel. I just haven't been feeling "quite right" and I was supposed to have to wait to get a 6months post tx blood test done. I called to get them to do it sooner, I was told by the know it all rec't that I was cured and it was the doctor's policy to wait 6 months. I told her, "would it be so much trouble for you to just ask him?" I got a call back saying , he said to go get it done. So I did last Thurs. haven't heard anything yet.

What I want to know is what sx are you having? I was first diagnoised by my GP that I had fibromyalgia. He sent me to a pain specialist and the physcologist said I have tissue damage...that's what's causing my pain and he has seen a lot of it w/ post tx hep c ppl. I go to see my pain specialist this coming Tues. The physcologist syas I need to be a 12 hour pill/patch. I am so fatiqued. I have been sleeping 15 hrs a nite and day!!!! My hubby wakes me to take my meds. then I go right back to sleep. I never feel rested. Sp please let me know What YOU are going thru? I am really concerned about this! Love, Cindee  

[raheem]

How have you been?  What side fx or damage are you still experiencing from the medicine?  I've got 7 more weeks to go and it seems to be a little rougher as time goes on (vision, stamina, red dots, ANC down to 432 and I'm only on 75% interferon dosage for the past 3 months).

[Tallblonde]

I'm sorry to read that you're still having such a rough time.  Are you second-guessing your decision to treat?  If you had known then what you know now, would you have made the same decision?  

I realize this topic is very touchy, but I think your perspective can be very helpful to me and others who are still grappling with what to do.  

I hope you begin to feel better soon, Willing.  

Susan

[cuteus]

Thank you so much for that post on the bill in congress, I've printed it and will mail it, I will e-mail too for good measure.

Is anyone here planning to drag their butt over to DC in June?  Maybe we can have our own little reunion/getaway before or after?

I'm in the east coast and if not carpooling maybe Amtrak will do.  I can't see myself driving there!

[LvdByGod]

THE SINGLE MOST IMPORTANT THING TO DO NOW IS GET THOSE BLOOD TESTS ASAP. TODAY IF POSSIBLE. YOU SHOULD HAVE A LIVER PANAL,CBC, VIRAL COUNT, AND GYNOTYPE... I COULD BE FORGETING SOME.

YOU WILL WANT TO KNOW WHAT GYNOTYPE YOU ARE BEFORE IT DISAPEARS AND FOR SOME THAT HAPPENS QUICKLY. AND YOU WILL NEED YOUR VIRAL LOAD!!! ASAP!!! SO THAT YOU WILL HAVE SOMETHING TO COMPARE YOUR 12 WEEK PCR RNA TO. OTHERWISE YOU WILL NOT KNOW IF YOU HAVE HAD A TWO LOG DROP OR NOT IF THERE IS SOME VIRUS REMAINING AT THE 12 WEEK PCR/RNA/VIRUS COUNT.

i truly pray that all will go well for you now and just keep up with your meds and taking them on time and blood tests from now on.

p.s. my doc told me the ribavarian is extreemly important to take on time as well as the interferon. esp. at the beginning of treatment.

don't let thier incompetence mess up your treatment. you did the best you could under the situation. shame on your nurse for not calling you back. she certainly had no right yelling at you. you after all, called and got a doctors advise, what more could you have done.

we all love ya and are praying this will become a no big deal sort of a thing as far as treatment is concerned. it should have no impact on your ability to clear this beast!!! GOD BLESS, SANDI

[cindee]

I would get another doctor! I would not go to ANY doctor that didn't return my phone calls! My prayers are with YOU. Cindee

[willing]

well...the milk's already spilt, what to do now?
- have a genotype test. Length of tx, riba dosage and likelihood of   SVR are different for genotypes 2/3 than for 1. Do this soon, once  the viral load becomes undetectable you can't determine the genotype.
- try to test your VL frequently between now and week 12. If VL doesn't drop quickly enough the likelihood of success is very poor. The standard protocol is to test before and at 12 and look for a 100->1 drop. If you have enough VL data points before 12 you should be able to make the same determination (else you risk up to a year of tx for no reason).
- choosing a Dr is of course a very personal decision. IMHO having a responsive, empathetic nurse/pa is MUCH more important that having a highly credentialed Dr. Tx ain't rocket science. In the majority of cases HCV therapy is straightforward and mechanical. Unlike say surgery or oncology there is very little room for a specialist to exercise fine distinctions of judgment. What IS important is someone who will work with you on the routine blood tests and sx management.
-doing tx is of course also a very personal decision. I hope that as a stage 0 you've thought this through. This board is full of testimonials of people who've gone though tx, succeeded in eliminating the virus, and recovered from the medication with no lasting effects. Unfortunately there's also a minority viewpoint that is not as rosy: failure to respond and/or lasting effects from the meds. Persoannly I'm two months post tx and wondering whether I'll ever recover from the medicine. My experience has ben that the damage done by the medicine is much more tangible than the speculative, long-term, damage caused by the  virus.

[mll]

Thank you guys for all of your opinions & support. I am a 1A tx for 12 mos. I did get the blood work done and have an appointment on April 1 so I will know more then. I will talk to him then and I guess if he doesn't respond right I'll look for A Dr. This is so scary to go through. My side affects aren't too bad although last Thursday & Friday I could have cried at the drop of a hat. I have constant pressure in my head and back ache. it so helps to be able to hear from others going through what I'm going through. You all have helped to put me at ease THANKS
Michelle

[FlaWife]

I have a couple of questions, hoping someone can answer. My husband is a 1b, viral load 2.7 mil, taking 800mg Rebetol & will do 3rd shot with the Redipen tomorrow night. His biggest side effect so far has been fatigue, but when I came home from work today he complained about not being able to "see straight." Someone mentioned vision problems, which I haven't seen on here before, can you elaborate? Also, Dr. wants his bloodwork done at 4 weeks. Should it be checked sooner? Thanks for any info you can share.

[hepcbilly]

SHHHHHHHHHHHHH !!!! go to sleep Chevy you are new and we are old. Go to sleep....Hushhhhhhh

[thanbey]

It is very important that your husband's vision be evaluated by an eye specialist.

Do not delay. Permanent eye damage can result if this is interferon induced and an eye specialist is not on board with continuing treatment.

Caught early, the damage can reverse.

I hope this helps,

thanbey


<a href="http://www.hcop.org/hcvinfo/articles/index.cfm?articleid=180">click here to read about someone else's experience with vision problems</a>

[audreywald]

For sure have your husband see an eye doc asap. I was taken off tx two years ago because I had a retinal hemmorhage.

[cuteus]

I just knew you were going to share This!  LOL

be well.

[landfill]

Well, I hope this isn't the start of that nurse beating you up as you try to follow their directions.  The drugs are going to be hard enough without them adding to it.

It's important not to miss an interferon injection.  Don't let that happen no matter how screwy things get.  The riba's important too but missing a dose won't derail your tx as not getting the interferon at the right time.

If you do your part, there are still 2 ways the tx can fail.  First the drugs may not work.  There isn't anything you can do about that.  Second, you may have a bad side effect that forces the Dr to cancel it all.  He can reduce this threat by watching you closely to treat the side effects as they arise so you can continue.  If you sense that they're not keeping a close watch over you find another Dr but don't miss any injections when you do.

My good wishes for you.  My tx ended in August '03 and I'm still undetectable.

[raheem]

Don't worry about it.  I never had blood work done right before I started tx.  I had a HCV PCR viral load test done about 4 years before I started tx. What's important now is monitoring your blood for anemia, neutropenia, low platelets, thyroid etc.  Also, your 12 week PCR viral load test is important. The only thing is you won't know if you had a 2 log drop or not because you have no pre-tx numbers to compare. Take the medicine, eat right, sleep right, read up on Hep C and don't let the Dr./nurse push you around.  I've found that sometimes their egos can get in the way.  You can believe me, they don't know everything.