more treatment questions

[miss moneypenny]

hi there,

I am still in the midst of the treat or wait dilemma, but have been for a pre tx assessment today, as I thought it would help to talk to the HCV nurse.
I was really pleased to be offered the short cut treatment for geno 1's with low viral load - although they are checking VL again to make sure it is still low - was 17000 copies/ml, so hopefully it will be down there still. Could VL jump enormously in 3 months?

I was a bit concerned to be told that should there be a problem with anaemia or low platelets that the only way they would deal with it is to lower the drug dosage. i should point out that this is in the UK, and she did say she is aware that in the US there are "rescue" drugs, but not the case here. I feel a bit worried about this.

Another worry is, I get optical migraines - zigzag lines etc - and am rather afraid that the tx will make this worse, wondering if anyone has any info on the risk of visual problems whilst on tx?

Thanks guys for all the great advice and support you offer here, I know that you are not docs, but nice to know you're there for us. I shall keep you posted on my tx position.

love and luck to you all

[scruffy]

Hey guy, this is a good place to get a little support. A thick skin helps sometimes though. You'll get some response up top. I'm just here once in a while. I treated once and relapsed myownself buddy. Hcv sucks but we are winners. Hang around auto. Frank

[autoptsman]

New Guy old illness. Just found out my doc said I should
go back to see my liver specialist. Just shocked & scared.
I've done 2 different treatments was good until I went off,
when year was up. I think this time I need some friends
that know how it feels.

[brightoneason]

keep posting, x

[beamishboy]

hey, just following this thread&marveling at the support,concern,shared history..i only wanted to wish you the very best.....If there is any justice in this world & we can count on the power of positive human interaction-You are Healed.........Farewell

[miss moneypenny]

hi, no, not been in ragtrade - always been music biz for me.

Sorry to hear you are suffering with the side effects, that is the thing I am dreading really, it is so hard to imagine what it will be like, especially after reading so many experiences, but I guess it is different for everyone and I will have to wait and see.

I am tring to prepare myself mentally and physically so hopefully will go into it with a positive attitude - don't know how long that will last though!!

All the best to you on tx, sounds like you are managing to keep your chin up

x

[brightoneason]

wellcome i am also in Uk, i once knew someone who was in the rag trade who had a label called miss moneypenny...is it you? loads of stuff here that will help you, im takr shot 6 2mw nite...sides have been bad but getting more manageable, the water helps, i take electrolites sport drinks too, STRESS brings on the mood swings for me, i tried ADS for a day did my head in, its still an option but i will try a quarter as mentioned in other threads....attitude is also a big one, i have had to try and make peace with the Tx/sides, find a way to surrender to it, not easy for a narcisistic control freak like me! good luck. x

[Snookmiester]

Hey, tell Txmike that I wish him the best.. Me and him have a love hate, and he was a big contribution over at OOB.
Tell him Snook_man is rooting for him, and his wife!!

[cuteus]

I hope texmike pulls through, he made me laugh at OOB when He got on snookie's case. Tator, see you home. Your curfew is up.

[GoofyDad]

pls forgive a brief interuption.....

anyone heard from Dana and the pain in her side lately?

PITTS? Ya out there?

[miss moneypenny]

thanks for the responses everyone

beamishboy  yes, i plan to have an eye test pre tx, and will also get regular checks - good luck with your tx

cuteus - I know that i may not have an EVR and am steeling myself for the long haul if that is the case. If I don't have too many sides i may go for the full course anyway, to make sure.

avidreader - glad to hear your migraines have not got worse, that is reassuring. I am hoping my VL is low, but realise this may not be the case. I have had a biopsy and have minimal damage, which is another reason why I may try the short course.

dutch_boy - sorry to hear you have the migraines, they are scary at first, but I find now that if i just relax, try not to panic and have a lie down for 30 mins then it all passes fairly easily. Good luck to you with the end of your treatment and thanks for the advice

NYgirl - I hear what you're saying re taking the full 48 week course, and I think I would do this if I wasn't finding the ride too rough. I think I am selling myself the idea of the 24 weeks to start off with as it makes it seem so much more achievable. Good luck with your 12 week PCR.

xx

[dutch_boy]

I was very worried about starting tx due to the possible eye problems I've read about.  I had an eye exam before and now 4X during tx.(I'm now at week 44 of 48).  The eye doctor should check to see how your nerves look behind your eye and then see you after a couple months of treatment to see if there has been any changes in the eye or if any unusual vision problems creep up.  I had NEVER had optical migraines before treatment and about 1/2 way through treatment I started getting what my eye doctor called Migraine Aura in my eyes...sometimes just in one and sometimes in both.  I don't know if it is similar to what you called optical migraines but my guess is that they are the same.  Sometimes it is accompained with a headache but most times it I have no pain.  The doctor explained to me that it in my case is due to having extreme anemia caused by the medications and my eyes are not getting enough oxygen at times.  I was told it isn't permanent and that it will not cause any permanent damage.  Non the less it still is very disconcerting when my vision almost dissapears from all the white zig zag lines which starts at the peripheral areas of vision and eventually takes over the whole vision field lasting about 1 hour usually. I now get them every 2 weeks or so. Very frightening but at least it isn't causing damage....just fear.  If you decide to start treatment I suggest you see an eye doctor to give you a baseline of what your eyes look like before and then check them periodically as your tx progresses.
Best to you in your decision.  For me I don't regret the day I chose to treat......I learned how strong I am and have been undetectable since week 12.
Scott

[NYgirl]

I am a geno 1 and treating for 48 weeks.  In fact I am going to make SURE that I am treating all of that time no matter what.

I really think we need that time to make sure they are all out of our bodies = NOT just our blood stream.  The blood test is good to me as a predictor...but it can't say if they are in my liver or any other tissue just sitting there hiding.

Treatment is DOABLE and I would prefer to only do it ONCE and not relapse no matter what.

[NYgirl]

First off - do you know I just LOVE Tator Tots  ;-)

Well we are in the same club the ComboClub - that makes us special!   :)

I intend to keep fighting and fighting and fighting just like you.

I went from 568,000 to 411 at my 4week - so now next week is week 12 and I am praying hard that that is the big UN-D!  God it's stressful so I am trying to ignore it and just focus on the day-to-day you know?

If they came out tomorrow and said gee I think you can stop at 24 weeks your numbers are great...I would insist on staying the course until 48.  EVERY chance at getting SVR must be taken - every advantage possible.

I'm sorry that you have to do this again...but I hear you are gorgeous like a model...so that's perhaps the trade off!  ;-) hahaha I am just kidding to make sure you know!

Not about the model thing though I think that was CHV who said so!  :)

[avidreader]

I too get occular migraines--sometimes with an accompanying headache--sometimes not. I'm on week 20 of treatment and so far they haven't gotten any worse. I am getting more headaches in general but they are not migraines. I find that the more water I drink the fewer headaches I get, so if I feel one even lurking in the depths of my brain I start chugging water. Good luck whatever you decide! By the by--viral loads can fluctuate wildly and don't seem to be a true indicator of liver damage, but there is a school of thought that you stand a better chance of clearing the virus if you start treatment when your viral load is low. I, personally, would want to get a biopsy before I committed to the short course of treatment so I could make a more informed decision--you only want to do this once. Will National Health pay for a biopsy? I would think with genotype 1 you could make a pretty strong case for it.

[cuteus]

good luck, and remember that the short course is dependant on having a negative PCR at wk 4. If you still have a vl, relapse rates are going to be higher. Are you prepared to continue on or willing to stop at wk 12 if it comes to that? Make sure you are ready for any possible scenario.

[beamishboy]

my doc had me get a full vision test before trx-i believe this is standard this side of the puddle.....i started trx 3 weeks ago--apprehensions run deep,but i made the plunge.........Good luck