Killer Good News and some bad mixed in...

[Mikkimoe]

You all  know how I've been thinking this Tx is kicking my butt...mega sx etc. Well guess what? Looks like it's the other way around - I'm kickin it's hinny.

Starting Alt - 134   two week PCR - 37
Staring VL - 2,280,000 - two week PCR - 203

I believe this may be about a 4 log drop - right? Headed for EVR maybe and that would be great because I may have to quit early. I think I have a new theory - let me know what you think.

When the tx finishes killing the nasty virus and it is all gone - then what does it do? Attack the good body parts?
Just mentioned this cuz mine just started doing that last night. MAJOR RA (Rhuematoid) flare can hardly move - 1st major RA pain since starting tx. Also extremely fatigue - probably have some good stuff falling - will see Tuesday at my 4 wk PCR.

But I'm very happy it's working...

Thanks for your thoughts,

Mikki

[Mikkimoe]

gee I'll have to revamp my story...did you see it yet - 'll have to make a copy for angie - funny thread.
Pasadena is nice or i even get into Burbank every few weeks to meet my kid for lunch and get horse supplies if that's closer. I'm pretty out of it Mon-Wed so later in the week is good.

Gotta get off to bed ttyl

[pigeonca]

Howdy to you.

I was geno 2b, and I treated for 13 weeks (12 weeks of INF and riba and one additional week with INF alone).

That would be delightful to meet somewhere in the middle - maybe Pasadena or West Covina or some place like that.  I'll send you an e-mail and also talk to 4C about it.  I think she may actually begin tx this week, not in 2018.

pigeon

[Mikkimoe]

Howdy - how long did you treat? What geno?

Guess I should have a cool folder with all our stats in it like our buddy auntB (maybe I can get her to send us all one).

If I get better we can all meet somewhere in the middle (like Walley World -lol) - Deb you come too. It will be me and AuntB and Forseegood and Pigeon and who ever else lives in the LA area?

[pigeonca]

I had the cutaneous form of scleroderma; it's called morphea.  It causes your skin to form scars that look like the aftermath of burns.  Actually I'm very, very fortunate, because the systemic form of scleroderma is awful, often fatal, whereas what I have is just disfiguring.  But I have to admit it: I'm vain.  Before treatment for hep c, my scars were all disguisable unless I wore a bikini - but a being a 64 year old in a bikini, no matter how gorgeous I think I am (and I'm not) - is just not my thing.

Treatment caused new scars to form, and when I got some on my lower legs and the back of my neck, the doctor made me quit tx.  She figured my face would be next, and I just wasn't ready for something like that.  Fortunately I was UND at week 4, so it wasn't that risky, and I did achieve SVR.

It's interesting that in the past year, since completing tx, I have not acquired any more lesions, which makes me believe that the hcv caused the scleroderma.  No hcv, no scleroderma.  I think hcv causes all sorts of autoimmune issues which will vanish after successful treatment.  Unfortunately, the treatment aggravates all these conditions, and so there's a conundrum here that doctors have yet to figure out.

[Mikkimoe]

mouse - wow thats pretty close - seems we've been thee for some event - it's lost in the fog - darn - I'll do that!

Hey just wanted to give Wassup MAJOR kudos for her fairy mucking good time today. It was record hot out too - tought we were going to melt. The horsey kids loved her - she is covered in horsey drool from baby Corbell. So nice to get the support on line and on ground - what a great group - Thanks!


LL - hey you up? lol

[FloridaMouse]

Let me know when you are in Cocoa ... I'm an hour south in Sebastian.

Mouse

[Mikkimoe]

ROFLOL and caughing like crazy. I can't believe that yes I was doing laundry at 2am just after I posted this last night and i stopped looking in the mirror for fear of what you said!

You got me pegged gal!  Feel like I found a new best friend.

Hey congrates on the UND - hows the autoimmune problems doing now?

Also how far from Cocoa beach are you - I get there often - best friend (that sells the scarfs and had beat breast cancer) lives there. She does a lot of Biker scarfs as well check it out. The "Michelle" is named after me.

http://abonitascarf.com/

keep us laughin - hugs,

mikki

[Lady Lauri]

LOL! Tx IS an acid trip gone bad! J/K pre-txers....does mess with the mind tho!!

YES, nights/ days were so backas*wards! Took awhile to get-sort of-switched around. (as it's 1:30 am now!) Many days I'd lay all day, than vaccuum at 4 am!! Just go with it. That's the advice I got here....if you want to do laundry at 3 am, do it!
BUT......if the mirror starts talking back,,,,,,well, time to talk to the DR. :)
Going to bed, hope you can soon :)
LL

[Lady Lauri]

.......Just to remind everyone, I too had autoimmune problems that predated diagnosis and terrible flare-ups during tx.............

Which auto immune did/do you have? (if you don't mind me asking!) Curious as we're (me, Shands) giving the muscle issue's till 3 mths. post to 'check into it' further.


LL

[Mikkimoe]

Thanks all - Is it just me or do any of you feel better at night? It's like I'm in bed and out of it all day and go see my kids round 4 - get home @ 6 or 7 - fall in a heep till about now and mysteriously wake up and come out of my funk just in time to have to try to take all those things to put me to sleep - some how I think my nights and days reversed - weird

Here's my version of the mikki song -

Mikki - Mikki you've lost your mind, you've lost mind and you must find - hey Mikki hey Mikki

OK - here's another thing - does anyone ever just look at yourself in the mirror - in your eyes and try to find yourself? Kind of like an acid trip gone wrong....

OK I'll stop scareing the newbees - sorry....

[Lady Lauri]

Hi to all the 'girls' (you too jm, just haven't seen all these 'girls' yakking lately:)
Deb, Jd, Pigeonca, Meki, Mikki, Missy, Eureka,etc.....a bunch of you. Feel like I'm missing a lunch out here :)

Okay Mikki, Wassup you two live close?? That's so nice, mucking together,lol.
Fairy mucking....hmmmmm, now that is a new one,lol.

Seriously, I so feel for all of you all (Hi missy:) suffering thru RA pain, muscle pain. I had soooo much muscle pain on tx, could barely walk some days also and don't even have RA!  So you must all be really suffering in that. So sorry and hope you get it/keep it under control to get thru tx. I'd still do windows for Missy or muck for ya' Mikki :) I'm all better :)

Mikki.....whats the ol' hgb, etc? With the heavy fatigue. Thats GREAT on the VL !! Keep it up! My sis has often wondered about that in her cancer tx...where when it's gone, is that why she's sicker, etc. No way to ever really know I guess. But, jmjm..... as your right in the interferon rev's up the immune,,etc. isn't it also that our immune is attacking 'good 'stuff' as well? As it does activate/flare many autoimmune conditions, I kept asking all thru tx about that with my muscle issue's, he kept assuring me it would 'show' in the bloodwork?? Not so sure on that, as much as I trust his knowledge, credentials.
Tired, starting to babble :) Glad for you Mikki, hoping your sides/pain doesn't get worse.
Hang in there Mikki and Missy!

LL

[kittyface]

So glad to hear you are kicking the virus' butt.  Hang in there.  It's tough but well worth it.  

Kindest regards,

Kittyface

[eureka254]

You rock, Mikki, hang in there!  I hope Tuesday brings you EVR news!! (and lesser sx as well...)

I'll be cheering for you!
("Oh, mikki, you're doing so fine, doing so fine, you blow my mind, hey mikki!)

[Deb_c430]

ahh mikkie, the cowboy and the horse,   that is sad, yet beautiful!

[Mikkimoe]

Yep Mouse - I look like I'm headed to a bowling tournament with all my braces - ha

I've never tried the Tramadol - wonder if I'd be alergic - I'm alergic to sulfas, Vicodin, percacette and a lot of others - My doc just called in Tylenol with codine - used that before - it's just OK.  The only thing that ever worked is more prednisone - but don't want that to be an option now. (just sticking with the low 5 mg dose p/d)

Meki - thanks for the warm thoughts - I could feel them when I read your post and realized I had just turned my heating pad on my back - gota love it - sharp as a tack these days!

Wassup - Bless your little fairy mucking heart - see ya Sat - hey I hear there
will be a pot luck at the barn that afternoon - One of our cowboys died last week and the craziest damn thing happened -  his horse died yesterday - Guess he needed him in heaven with him. Hope it works like that for me.

Hugs to all!!!

[FloridaMouse]

I find that Tramadol seems to work really well on breakthrough pain for me.  I particuarly like the fact that is considered a non-narcotic.  Celebrex is a non steroidal anti inflammatory that's prescribed pretty regularly for RA.  I can always tell when when I'm starting to flare because I get extremely clumsy and things go flying in every direction (including me).  

When this starts happening I stop moving around and sometimes I will resort to using my braces.  This helps me from getting those really red hot flares.

Mouse

[meki]

Mikki - you need all the strength you can get - so I'm gonna send you all my super warm thoughts!

Girl you're tough and you can do this!

Health and happiness.

Meki

[redeemed1]

im also on a 72 week course of treatment with double shot of pegasys and riba until und then single shot for the duration of 72 wks.every muscle and bone in my body aches,and it seems to get worse as the week wears on,no on friay when i take shot or the weekend.hang in there,this is a treatment for those that want to live.god bless

[Wassup]

P.S. Delighted to hear about your recent BT rslts. Hope you get to continue, but don't take your sx too lightly and make yourself REALLY sick. You won't be the first to start and have to stop TX and resume when you're stronger.  Good luck with whatever you do, I know what a trooper you are.  More Hugs, Ant B

[Wassup]

Hi Cookie,  Sorry you're having such fatigue.  'A little bird told me' that the 'Stall Mucking Fairy' is going to visit you soon.  This should help you out a little.  If you just ask, I'm sure that there are other things that a 'Stall Mucker' could help with too. Have a wonderful relaxing weekend.  I'm looking forward to my weekend.  Many Hugs, Ant B  

[Mikkimoe]

Just realized i missed your post above and wanted to welcome you back - How are you doing?

You may know about the thyroid issue and RA - Boy you have had your share,

Take Care,

Mikki

[Mikkimoe]

Great news Pigeon that after 12 weeks you still SVR'ed. I am almost sure i may be in that same boat.

Jim and Mouse - took your advise and called my docs today and left messages - the rumy is supose to call back late tonight. I think she will just try to add meds knowing her. But she may have a point as I stopped taking my pain meds and my anti-inflams several months before tx. (I switched to suppliments etc - that seemed to work great till now) I just stayed on Enbrel and prednisone (only 5 mgs) I have tried darvacette a few times the last few days with no relief - just makes me even tiereder then I already am. Tylenol does nothing but upset my tummy. I'm alergic to most the RA drugs. Not sure what to ask for.

I'm pretty darn determined to get through this so don't want to get them so concerned that they pull me off if you know what I mean. I can take a great deal of pain - just Hate the fatigue. They are also going to re-check my Thyroid levels Tuesday as they were pretty low 2 months ago (.85).

I am going up and down with the flares - real bad and can hardly move for several hours then it lets up for 4 or 5 hours and I can get around - very strange pattern - anything like that with you guys?

Thanks

[pigeonca]

That's awesome.  I'm praying for your EVR, 'cause if you get that you can probably cut your treatment time by as much as half.  Just to remind everyone, I too had autoimmune problems that predated diagnosis and terrible flare-ups during tx.  My doc pulled me off treatment after 12 weeks of riba and one extra week of INF alone, yet - because of my EVR - I did achieve SVR.  You will too if you can just hang in there.    

Hope you're feeling better now.

pigeon

[FloridaMouse]

I also have RA and I'm on my 2nd round of tx.  I take Humira, Methotrexate and Celebrex.  I was also told that if I have a major flare that they would have to pull me off treatment.  Since they won't let me take Prednisone while on tx for the flares, they started me on a maintenance dose of Celebrex at the time I started tx.  This was a recommendation made by Shands at the University Florida.  

So far between with the Humira, MTX and Celebrex I have been  able to keep my flares to a somewhat tolerable level.  I am 20 weeks in to my second round of treatment and have 52 to go.  My RA pain has become more constant the past couple  of weeks but I'm still functioning.

What are you taking for your RA?

Mouse