Music's Sovaldi Treatment Blog

Themiz, mamalama, and Deb, thank you for your comments and support. I won't give up, just with HE too is sometimes a bit of a rollercoaster. Yes, the ribavirin does seem to encourage my anxiety to go to the extremes. Helps to be reminded..sometimes I think it is just me....pcp visit tomorrow and counselor sat. Sovaldi is an incredible miracle drug. Deb, hope the new meds are approved soon. Hugs to all!

hi music, yes i did get rls in 2012 while doing tx. 30 minutes after taking my night dose(3 pills) my anxiety would flare and i would get this strange feeling of energy building up in my lower legs and feet. and then my foot would involuntarily kick outward, and then repeat. it resolved after tx.

i am sending prayers your way. i think your doing great, handling this tx, with your cirrhosis. i did 1 year of tx in 2012, and i was, and am cirrhotic. keep the faith music!!
barry

Hi everyone, 4th day of week 19 of 24. No new labs since mid may...moderate anemia and rls, but other than that, treatment is so much easier physically than I imagined at the start. Counseling at least weekly starting last mo has helped me, and I am certain my dr. In helping with most of my anxiety. Got del of last treatment meds...so remaining very hopeful for my ud status to hold...tks for the prayers and support.
music 👱

80% there!
People skills are overrated, anyway :)
Things will get better soon, music!

music,

I always read your posts with special eye to how you are doing. You mention having some "issues" in addition to hep c. I don't talk about my partner's "other issues" very often, concentrating on the stuff like hep c, cancer, kidney disease, and cardiac problems...but, his state of mind can be a mine field, even when he doesn't have HE. One day it can be one way, and another day it can be the opposite.

He is not reflective about himself and wouldn't be able to say he is missing his people skills and staying off the phone on a day..rather he'd shout at folks (me too) on those days and be out of sorts. The trick is for him NOT to make any bad decisons on those days...decisions that couild not be turned around.

In the midst of all the fun of transplant and treatment, his psychiatrist decided not to take Medicaid reimbursement any more and my partner has determined himself to be well...virus free and well. And won't start with a new psychiatrist...

Now he has stopped taking his nighttime meds...which are both a sleep aid and an anti anxiety med and that isn't going well. According to me...but what do I know??? When he is good, he is WONDERFUL. When he is anxious or grumpy, he's not so fun to be around. I wish he could send himself to his room for the afternoon.

I have taken an extra anxiety pill myself today..I call them my "dont bite back" pills...I cope much better with some outside "help." Especially on days when I have my own stuff going on...too much to do in too little time.

I know treatment is rough. You have the Riba in your combo...I prayed he did not...and he didn't. I think things would not have gone so smoothly if he had the Riba too. The Olysio was a dream but for the sun sensitivity and rashes.

Hugs,

ML

Hi Music, You can ignore me today:) Let's blame this one on Riba Rage...."HE" is tired of getting blamed for everything. You are pretty brave to tackle a Riba treatment with HE. Like Mama, I am watchful of your threads, and I think you are doing a brilliant job!
Big Hugs,

Music,
Remind me, please. Do you take Xifaxan and do you see a hepatologist and a PCP? Not certain who treats what for you. Big Hugs

Music, does your hepatologist RX your Lactulose and Xifaxan, plus Solvaldi/Riba ?

With your symptoms and taking Xifaxan....did they test you for c-diff? Xifaxan has some c-diff potential. So, just a thought to rule out.

I personally like one doctor over seeing all meds. A gatekeeper, if you will. And for a liver patient, it would be the hepatologist that really "gets" HE and the meds with HE issues. Perhaps a call to hepatologist on all of these other issues, and what meds you have been RX'd.

Also, I would suggest speaking with the hepatologist before stopping Lactulose, as was suggested from the case manager nurse. Just some rambling thoughts from the things you mentioned. Take what you need, and leave the rest. I'm not an MD, just a wife of a guy with some of your same history. Big Hugs

music, This is just what I hoped you would say ; ) Way to go on the gatekeeper Hepatologist. So important, isn't it? And good to hear the c-diff is being ruled out...or in. Either way, you need to know so you can address the problem. Don't be overwhelmed, just get through the next couple of weeks of treatment. You have come so far and are close to the finish line. Then that box is checked off! And treat whatever pops up with little challenges along the way. You have proven you are a fighter and can do whatever is needed to get rid of Hep C and have your best quality of life. Big Hugs

Hi guys, excited to actually be ending second day in week 21 of treatment. No confirmation of new possible diagnosis mentioned earlier...but what a weight loss...definitely not the easy way...makes lactulose look tame. Kind of exhausted...hepatologist visit Tues 17th. Waiting on cmp results no viral load now. Everyone have a blessed week.
music👱

Hi all, first day of week 22 of 24...all labs normal except rbc, hg, hcrt a little low. Reduced energy, but no real treatment sides. Mid back and tummy problems continue but the tummy matter seems better with med...problems believed to be abt related. Dr really supportive during visit. Next visit late in July. Counseling very intense..and counselor very supportive...has not yet given up on me...anxiety keeps breaking through...and mood swings pop up when you least need them to..
music👱

Question for zif. Pls. Sorry to ask. But what do you know about being able to draw a five pointed star that the lines don't cross without lifting your pen? If you can do that, does it mean you don't have h e?

tks need to know, please

Zif, asked the question poorly before and I apologize.