Aa
Aa
A
A
A
Close
1995824 tn?1330379049

Twelve Week report -UND!

....and also still undetected! Woot!  Glad to get that news since I came off the Incivek five days early (nine days ago) because of the mega rash.

The rash is still in play although I think it has finally stopped progressing. I am still very itchy and red but it appears that my arms may be clearing up a bit. I am now dealing with burning, itching hands and feet when I go to bed at night. It's the kind of itch that can only be scratched by twisting one's feet on a sisal rug until almost raw. Needless to say, this is messing with my sleep. Have even tried ice packs on my feet when it wakes me up. Only temporary relief there. Mentioned it to the NP this morning. Can't wait to see how my doctor does not address this issue.

The other issue now is seborrheic dermatitis which is covering my scalp. My hair is leaving my head in a mass exodus, having lost many handfuls over the past three days. Am treating with Ketaconazole shampoo and applying fluocinolone oil to scalp once a day to help deal with the crusty infection. Thanks to the dermatologist for looking after this.
And the sides just keep on coming!
18 Responses
Sort by: Helpful Oldest Newest
Avatar universal
Sounds like you are doing the right things for the rash. I sure hope it clears soon. I am glad you are still Und. Stay strong
Helpful - 0
317787 tn?1473358451
Congratulations!  You are doing very well.  Thank you for sharing it gives others hope
Helpful - 0
1995824 tn?1330379049
Thanks....for the sympathy...and the congrats. I really do (almost) see the humor in the sides. I think I can tick just about every one off the list at this point....so, surely, there can't be many left to jump in to my treatment program. I am hereby taking the words "what next" out of my vocabulary for the duration!
OH - the ice water idea sounds pretty good!

I did get some satin pillow cases today :-)
Helpful - 0
Avatar universal
I don't know how I missed this but Congrats!  Hang in there and you will be fine...don't give up!

Jules
Helpful - 0
163305 tn?1333668571
Congratulations !  Yes, a good haircut is very helpful.
The great thing is your hair will grow back.

I have to share my itchy feet story.
After my transplant I had a somewhat common complication involving my bile duct. One initial symptom was the bottom of my feet itched like crazy. The only way I could sleep was lying on the couch with my feet in a bucket of cold water.
( The problem was easily resolved and my feet have never itched since :)
Helpful - 0
Avatar universal
I'm sorry.
Helpful - 0
2065676 tn?1331422440
Congratulations come to you in the most meaningful way. Good job...You are still standing. You are still winning this. Great news!
Helpful - 0
Avatar universal
I am very happy that you are undetected, congratulations.
So sorry about the rash, just remind yourself that it is temporary, a short painful period during a long healthy life.
All the best.
Helpful - 0
1995824 tn?1330379049
Thanks for all of the kind words. I would have responded sooner but yesterday was a really rough day for me. Right on the tail of hearing the 'good' news, my hair literally began falling out by the handful andit was a very weepy day for me. I did visit my hairstylist who trimmed the bottom third off so now I have a shorter cut and I am hoping this will not be as noticeable (to others). Dealing with the crusty,sinful scalp isn't a bed or roses either.
Helpful - 0
Avatar universal
Hi,
I am sorry for your lousy sx. But congrats on the 12 UND. My doctor told me to stop taking incivek at 9.6 weeks due to the rash and my scalp was a flaming mess! I am really glad to hear of you getting meds for the scalp. They wouldn't give me anything for that and at times it was just torture. I think by the time we got to doing something about the scalp was when the rest of the rash was on 50 % of my body so that is why they told me to stop incivek. I did complete the rest of my treatment (finished the 24 weeks with peg and riba). I never found anything that really helped with my scalp. The rash stayed for a long time. In fact I still get a rash (had it back today) off and on and I am 5 mos. post tx. BTW I remained UND at 13 weeks post tx so chances are you will too. Have you tried Aveeno Bath and Shower Lotion for itchy skin? Maybe you could soak your feet in some cool water or even cold water and add a bunch of that stuff. It was the thing that did the most for me with the itching. (Along with every type of cortisone and anti-itch cream on the market, Benedryl, and one other prescription antihistimine). Take care and I hope you feel better soon.
G
Helpful - 0
766573 tn?1365166466
I am so happy for you to hear that you are UND! You have had the most serious sx from the PI's that I have come across since I rejoined the forum for my 2nd round of treatment. Other than probably a low Hgb which is slowing me down I kind of feel a little better. The change in eating habits makes a huge difference, that's for sure!

Anyway, I started treating on Jan 13 and based on all the recent "12 Week Lab Results" posts I am beginning to notice several others started around the same time. More than anything I hope you remain UND. I lost 80% of my hair last time around and as devastating as that is, your hair grows back.
Helpful - 0
Avatar universal
Excellent news on the 12 week UND, but I'm not surprised.  You're in a very good place to SVR.  Now if your bonehead doctor (yes, you can tell him I called him that ;) would just respond to your sides in a timely manner, you would be coasting at this stage.  Glad rash seems to be heading in the right direction, sorry about the terrible itching, and even more sorry about the scalp/hair stuff.  You're on the downhill part of tx, just hang in there.  
Helpful - 0
1815939 tn?1377991799
Congratulations on still being UND. Hope your rash improves a bit faster.
Helpful - 0
1669790 tn?1333662595
I admire your positve spirit and great attitude as you deal with that awful rash.  Those und's certainly help to keep you focuses on your goal.  It sounds like the rash is subsiding some which is great news.  

I wonder if the rash has a direct relationship with hair loss by messing with the hair follicles, etc.  I recall when my scalp and eyebrows were very itchy and rashy, that's when I notice the greatest hair thinning.  Although my scalp hasn't itched much recently, my eyebrows continue to at 2 weeks eot and they are still very thin.  

Congrats to you for staying on top of these sx and hopefully this will soon be behind you for the remainder of tx.  Best to you.
Helpful - 0
2004810 tn?1365153611
Congratulations on being UND and done with Incivek. I don't know if there's any difference between Victrelis and Incivek when it comes to hairloss. I've also noticed that I loose more hair now (week 14). Not funny, but from what we can read from others post tx, it comes back out again. Some even say they get thicker / healthier hair after tx. Let's hope for that :)
(Thanks for warm words in my latest post). Wish you all the best!
Helpful - 0
190885 tn?1333025891
nice going on the und!.....my hair is now back in but straight...never was straight before...my feet use to burn some nights...funny thing sometime during treatment i became better at handling cold weather...and i'm still like that..it hasn't gotten hot here yet but i get a feeling i may have a tougher time with that...your rash is doing just what mine did...got some better but not gone after incivek...much more tolerable....good luck...billy
Helpful - 0
Avatar universal
Congratulations fellow 1/13 tx starter.  Good luck in the next phase. I know that rash has been a beast, but how nice is it not to be a slave to the incivek dosing schedule.  
Helpful - 0
317787 tn?1473358451
Congratulations!!  So very happy for  you, the good news just keeps on coming.  A friend of mine had a terrible time with her scalp and another poster had an even worse time, hang in there, there is life after tx
I am about 8 weeks post tx and I am in the light and loving it.  I had horrible itching, benedry did nothing, ice helped a little so I froze wash clothes and itched with them til I was numb.  My doctor prescribed atarax, I am with you on the docs not doing much.  Mine turned me over to a receptionist after starting tx though she was very good and helpful I did not think it her job. to be responsible for my care.  She was a wonderful advocate.  
. I pray we all get to SVR
Dee
Helpful - 0
Have an Answer?

You are reading content posted in the Hepatitis C Community

Top Hepatitis Answerers
317787 tn?1473358451
DC
683231 tn?1467323017
Auburn, WA
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Answer a few simple questions about your Hep C treatment journey.

Those who qualify may receive up to $100 for their time.
Explore More In Our Hep C Learning Center
image description
Learn about this treatable virus.
image description
Getting tested for this viral infection.
image description
3 key steps to getting on treatment.
image description
4 steps to getting on therapy.
image description
What you need to know about Hep C drugs.
image description
How the drugs might affect you.
image description
These tips may up your chances of a cure.
Popular Resources
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
Can I get HIV from surfaces, like toilet seats?