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Author Topic: Itching and Rash! Any recommendations?  (Read 23248 times)

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Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Itching and Rash! Any recommendations?
« on: November 22, 2014, 11:16:28 am »
Hey Everyone,

Since I started my treatment 6 weeks ago I have been plagued with rashes and itching like crazy. On more than one occasion my ID has mentioned that he may have to pull me off the S/O because it appears the Olysio is causing the issue. I on day 43 of 84 so I made it past the halfway mark!

I have to bring up that itching is also a symptom of Cirrhosis and I have had the same type of rash and itch (much milder) for a couple of years.  The doctors all told me I had eczema but none of the eczema topical medications ever helped it at all. It would come and go at random.

My dilemma is that the S/O appears to be working based on the blood tests however the itchy/rash is making me insane. I was prescribed Atarax but it really isn't helping at all.

The options I have are:

1. Stop the S/O and move to Harvoni and start it but I am concerned about getting approval for it based on everyone's issues.
2.The new AbbieVie coming out in about a month and by then I will already have my last bottle of S/O but I will also be 10 weeks into the 12 week treatment
3. Try another antihistimine to see if it works better. Benedryl puts me out for at least 24 hours and I mean OUT!
4. Shut up and deal with it.

If any of you have cirrhosis and have dealt with the itchy rash, what did you do for it? What worked? My arms are just torn up from me scratching even when I know I shouldn't be, it's also on my back. I have used every type of topical cream out there.

Any ideas would be greatly appreciated.

~Mel~
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline Rubye

  • Member
  • Posts: 130
Re: Itching and Rash! Any recommendations?
« Reply #1 on: November 22, 2014, 01:01:10 pm »
I would hate to see you quit the S/O Mel.
Insurance is being particularly scary and imo it is only going to get worse for awhile. My guess is you have excellent insurance but who is to say that the Harvoni or the Abbvie's will not cause the same or just as bad problems.

Not too long ago I read on a forum about a woman who was given Zoloft off-label for her itching. She said it completely stopped her itching and like you, she had tried everything else. You might ask your doctor to look into it.

Offline Rubye

  • Member
  • Posts: 130
Re: Itching and Rash! Any recommendations?
« Reply #2 on: November 22, 2014, 01:03:43 pm »
Out of curiosity I did a quick search and found this --

http://www.ncbi.nlm.nih.gov/pubmed/17326161

Good luck.

Offline Bucky

  • Member
  • Posts: 341
Re: Itching and Rash! Any recommendations?
« Reply #3 on: November 22, 2014, 01:16:10 pm »
Hey Everyone,

Since I started my treatment 6 weeks ago I have been plagued with rashes and itching like crazy. On more than one occasion my ID has mentioned that he may have to pull me off the S/O because it appears the Olysio is causing the issue. I on day 43 of 84 so I made it past the halfway mark!

I have to bring up that itching is also a symptom of Cirrhosis and I have had the same type of rash and itch (much milder) for a couple of years.  The doctors all told me I had eczema but none of the eczema topical medications ever helped it at all. It would come and go at random.

My dilemma is that the S/O appears to be working based on the blood tests however the itchy/rash is making me insane. I was prescribed Atarax but it really isn't helping at all.

The options I have are:

1. Stop the S/O and move to Harvoni and start it but I am concerned about getting approval for it based on everyone's issues.
2.The new AbbieVie coming out in about a month and by then I will already have my last bottle of S/O but I will also be 10 weeks into the 12 week treatment
3. Try another antihistimine to see if it works better. Benedryl puts me out for at least 24 hours and I mean OUT!
4. Shut up and deal with it.

If any of you have cirrhosis and have dealt with the itchy rash, what did you do for it? What worked? My arms are just torn up from me scratching even when I know I shouldn't be, it's also on my back. I have used every type of topical cream out there.

Any ideas would be greatly appreciated.

~Mel~

Hi Mel,
Sorry you are itchy!  About the Benadryl,  could try taking a children's dose 12.5 or open one of the gel caps and dump 1/2 of it out and close the gelcap. I am surprised that the Atarax did not KO you.
Are you itching where you clothes touch your skin? I had to switch to a free & clear detergent and I stopped using fabric softer for cloths and bedding.
Cool short showers and very mild if any soap. Cut you finger and toenails very short.
I had one place on the outside of my ankle that drove me nuts and I used a cold pack on it and it numbed my skin and stopped the itching. It would flair every few days and I would use the cold again and it would calm down for a few more days. You skin has needs to heal.
Thank goodness we did not have to use Incivek/Telaprevir because the main SE was anal itching. If you have to stop then do it, but I hope that you can get a preapproval for another med before you stop.
I know that itching is torture so I pray that you find a solution.
Bucky

 
I HAVE SLAYED THE DRAGON.....CURED SVR24!

Offline Bucky

  • Member
  • Posts: 341
Re: Itching and Rash! Any recommendations?
« Reply #4 on: November 22, 2014, 01:19:36 pm »
Out of curiosity I did a quick search and found this --

http://www.ncbi.nlm.nih.gov/pubmed/17326161

Good luck.

Interesting! We used Zoloft where I previously worked for patients who picked their skin (SIB) behavior. It did work for them.
Bucky
I HAVE SLAYED THE DRAGON.....CURED SVR24!

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Itching and Rash! Any recommendations?
« Reply #5 on: November 22, 2014, 01:52:23 pm »
Rubye and Bucky,

Things that make you go Hmmmmmmmmmmm!

I will ask IDs on Wednesday when I see him. I am so lucky he is patient man with me because I walk in every visit with my list of questions.

It's all so new, actually he said it's great that I am asking all of these types of questions because it's helping with his other patients, he can tell them before they ask now, hahaha!

~Mel~
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline Bucky

  • Member
  • Posts: 341
Re: Itching and Rash! Any recommendations?
« Reply #6 on: November 22, 2014, 03:03:02 pm »
Rubye and Bucky,

Things that make you go Hmmmmmmmmmmm!

I will ask IDs on Wednesday when I see him. I am so lucky he is patient man with me because I walk in every visit with my list of questions.

It's all so new, actually he said it's great that I am asking all of these types of questions because it's helping with his other patients, he can tell them before they ask now, hahaha!

~Mel~

Mel,
I once asked my IDS if I asked too many questions and she said she had rather have someone who was prepared with concerns and questions than someone who sat in the chair and said nothing.  She has commented on how well informed most people are these days thanks to the internet and forums like this one.

Back to the scratching, I wore ankle socks to bed while I was doing treatment to keep from scratching my legs with my feet while I was asleep. I also had light weight cotton glove liners to wear but I keep my nails shot enough so they weren't needed.
Bucky 
I HAVE SLAYED THE DRAGON.....CURED SVR24!

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Itching and Rash! Any recommendations?
« Reply #7 on: November 22, 2014, 11:23:55 pm »
I'd try to get the rash under control. The problem with rashes is that it is hard to get them under control once they take off. It may be too late, but I'd try. It takes awhile for  the atarax to work, and it has to be used regularly. And your doc can tell you how much is safe for you to take, so perhaps you can build up to a higher dose. Because it knocked me out, I had to build up gradually. Perhaps a different med can be prescribed - how about a derm consult?

Do everything you can to avoid itching since itching releases more histamine. Bucky's suggestion about cold packs is a good one. Try pressing or "scratching" with ice. Keep your skin moist with oils and creams. Avoid hot showers.   
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Itching and Rash! Any recommendations?
« Reply #8 on: November 23, 2014, 01:24:52 am »
Thanks Lucinda,

The thought of giving up hot showers makes me so sad because it helps with my aching body so much! I did put some ice packs in the freezer to use. The other recommendation about the Atarax is a good one, I tend to not take it unless I'm miserable because I'm concerned about anything interacting with my S/O therapy. I'll work on taking it regularly if you think it may help. I'm also planning on asking the Dr Wednesday for more options.
I think I can get it under control. How it normally flares for me is with tiny bumps that itch like mad, if I can get through that with topical creams and perhaps now the cold compresses and medication regularly I can get the flares to stop.

Willing to try, thanks so much to all!!

~Mel~
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline Bucky

  • Member
  • Posts: 341
Re: Itching and Rash! Any recommendations?
« Reply #9 on: November 23, 2014, 09:34:31 am »
Thanks Lucinda,

The thought of giving up hot showers makes me so sad because it helps with my aching body so much! I did put some ice packs in the freezer to use. The other recommendation about the Atarax is a good one, I tend to not take it unless I'm miserable because I'm concerned about anything interacting with my S/O therapy. I'll work on taking it regularly if you think it may help. I'm also planning on asking the Dr Wednesday for more options.
I think I can get it under control. How it normally flares for me is with tiny bumps that itch like mad, if I can get through that with topical creams and perhaps now the cold compresses and medication regularly I can get the flares to stop.

Willing to try, thanks so much to all!!

~Mel~

Hi Mel,

http://health.howstuffworks.com/skin-care/cleansing/myths/hot-showers-bad.htm

And pat yourself dry don't rub!
Bucky
I HAVE SLAYED THE DRAGON.....CURED SVR24!

Offline ma snart

  • Member
  • Posts: 65
Re: Itching and Rash! Any recommendations?
« Reply #10 on: November 23, 2014, 10:14:29 am »
Hi Mel,
sorry you are dealing with the itchiness, I have had bad bouts of this before and my Dr. prescribed Atarax, it helped immensely.
BTW my first day of Harvoni dealt me a bad day of nausea, not sure if it was due to new drug or not, getting ready for 2nd pill now.
Good luck, and I hope you hang in there as you are half way home.
Helen
Helen 54 yr old female
Geno 1B since 84 from transfusion
started Harvoni on 11-22-14 with 8.5 million viral
After 8 days 933 viral and normal AST and ALT
Week 10 viral load  UNDETECTED
Week 17    detected 19
Week 18    detected 21
Week 20    UNDETECTED   Doctor did prescribe Ribavirin, but have not taken it yet as we are thinking that weeks 17,18 had to have been mishandled.
All other test have shown normal levels.
Week 21 results  on Tuesday 4-21
Week 4 post Harvoni 24 week plan UNDETECTED!!

Offline JillLynn

  • Member
  • Posts: 205
  • contracted 1973/ peg/rib 1999 & 2004/on harvoni
Re: Itching and Rash! Any recommendations?
« Reply #11 on: November 23, 2014, 11:52:41 am »
Hi Mel.   Boy can I relate.    But not on the Harvoni but the PEG+RIB I itched my skin off......they had never seen a reaction like that.  IT WAS PURE HELL!  I so feel for you.    I even got suspended from my radio show because my arms were a bloody mess.  My whole body was and someone saw my back when I bent over and told HR too.  they were brutal to me at CBS while on on this treatment.( I guess I was kinda scary looking) I was with them 16 years.....had my own show but it's changed so much from the good ole days and I'm done with that corporate world.  Even though I wrapped them some people i worked with still freaked out.  (always those types)   Now my skin is mottled and scarred on my arms and legs...I itched my skin to the bone I swear and it looks like a burn or something.  I had the pills too but I don't remember ever being truly unitchy on those drugs.  That's why I was so grateful for Harvoni.   the PEG+RIB was a nightmare and I did it 2x for 48 weeks each.    I will be praying for YOU every day!!! and checking in to see how you are doing.   much love,,,,Jill
« Last Edit: November 23, 2014, 12:16:09 pm by JillLynn »

Offline JillLynn

  • Member
  • Posts: 205
  • contracted 1973/ peg/rib 1999 & 2004/on harvoni
Re: Itching and Rash! Any recommendations?
« Reply #12 on: November 23, 2014, 11:54:11 am »
helen....I had some nausea too and zofran did the trick for my nausea.  it comes in generic now so it's not expensive like it used to be.
 But it seems to be better now that I'm in week 5. hallelujah!   wishing you great success curing this! and hope your nausea subsides ASAP
« Last Edit: November 23, 2014, 12:14:11 pm by JillLynn »

Offline ma snart

  • Member
  • Posts: 65
Re: Itching and Rash! Any recommendations?
« Reply #13 on: November 23, 2014, 12:26:58 pm »
Thanks for the Zofran tip, we are still not sure that the Harvoni caused the nausea,
just took day 2 pill about an hour ago, Helen is using Sunday as her extra sleep day, I will update on the side effects if any later.
Thanks and good luck to all.
Snart
Helen 54 yr old female
Geno 1B since 84 from transfusion
started Harvoni on 11-22-14 with 8.5 million viral
After 8 days 933 viral and normal AST and ALT
Week 10 viral load  UNDETECTED
Week 17    detected 19
Week 18    detected 21
Week 20    UNDETECTED   Doctor did prescribe Ribavirin, but have not taken it yet as we are thinking that weeks 17,18 had to have been mishandled.
All other test have shown normal levels.
Week 21 results  on Tuesday 4-21
Week 4 post Harvoni 24 week plan UNDETECTED!!

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Itching and Rash! Any recommendations?
« Reply #14 on: November 23, 2014, 10:29:38 pm »
Mel - Bucky is giving you great advice. Pat - don't rub. When I got out of the shower, I slathered myself with Trader Joe's moisturizing cream mixed with a few drops of unscented Neutrogena body oil (baby oil also works).
The atarax took about a week to work. I only took it at night at first, and then a half in the morning. I didn't want to get sleepy, so I increased gradually.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Deck

  • Member
  • Posts: 16
Re: Itching and Rash! Any recommendations?
« Reply #15 on: November 24, 2014, 12:15:41 pm »
There is a generic cream called mometasone furoate which is a steroid cream used in only sever circumstances.  I'd guess that your situation qualifies...

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Itching and Rash! Any recommendations?
« Reply #16 on: November 24, 2014, 12:55:00 pm »
Thanks Deck,

I actually have a few different steroid creams to use as needed. I will check and see if that is one of them.

~Mel~
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline ranjankoyn

  • Member
  • Posts: 11
Re: Itching and Rash! Any recommendations?
« Reply #17 on: November 24, 2014, 11:41:22 pm »
hi mel have you tried vistaril for itch

Offline gulee

  • Member
  • Posts: 21
Re: Itching and Rash! Any recommendations?
« Reply #18 on: November 25, 2014, 12:49:58 am »
The itching and rash are probably common side effects; before I started my 12-wk treatment my doctor prescribed me hydrocortisone 1% cream. I did get itching and rash after the first week of treatment, and I applied the hydrocortisone on the affected area, it stopped the itching the next day like miracle, and I never had itching or rash again except after the first week (I am on my 10th week now)...


Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Itching and Rash! Any recommendations?
« Reply #19 on: November 25, 2014, 04:34:10 am »
hi mel have you tried vistaril for itch

I am currently using Atarax but it doesn't seem to work too well for me, I will ask the doc about vistaril next visit. Thanks!

~Mel~
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Itching and Rash! Any recommendations?
« Reply #20 on: November 25, 2014, 04:36:40 am »
The itching and rash are probably common side effects; before I started my 12-wk treatment my doctor prescribed me hydrocortisone 1% cream. I did get itching and rash after the first week of treatment, and I applied the hydrocortisone on the affected area, it stopped the itching the next day like miracle, and I never had itching or rash again except after the first week (I am on my 10th week now)...

Hi Gulee,

Thanks for the idea but I am way beyond hydrocortisone at this point, it doesn't help. I have even tried steroid creams, now just working my way through this, only a few more weeks to go!

~Mel~
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline Bucky

  • Member
  • Posts: 341
Re: Itching and Rash! Any recommendations?
« Reply #21 on: November 25, 2014, 08:51:07 am »
hi mel have you tried vistaril for itch
Hi ranjankoyn,
Vistaril & Atarax are the same med.
Bucky


http://www.medicinenet.com/hydroxyzine/article.htm
I HAVE SLAYED THE DRAGON.....CURED SVR24!

Offline gulee

  • Member
  • Posts: 21
Re: Itching and Rash! Any recommendations?
« Reply #22 on: November 25, 2014, 01:10:27 pm »
Mel, hang in there, you will be done once for all after a few more weeks! Hope you will find something works for you to reduce your itching... I am also using Basis Sensitive Skin Bar I bought from Amazon, a friend recommended, they seem to help my itching skin.

Gulee


Hi Gulee,

Thanks for the idea but I am way beyond hydrocortisone at this point, it doesn't help. I have even tried steroid creams, now just working my way through this, only a few more weeks to go!

~Mel~

Offline mario555

  • Member
  • Posts: 226
Re: Itching and Rash! Any recommendations?
« Reply #23 on: December 03, 2014, 10:02:01 am »
Just curious.. Why would they cancel your radio show because of your skin??? When I did that treatment, I had a skin rash so bad that I had to stop the treatment 22 weeks in. My skin was flaking so bad that I had ''white powder'' in my underwear. At first I thought it was dried up soap until I realized I was flaking from everywhere, buns included....  That was sure a freaky experience.
Also, Harvoni appears to take care of even the worst cases (if taken long enough...). Don't worry about the final results, this is finally a great product. Nothing to compare with Peg+Rib... Anyway, good luck with your final weeks!
60 years old. Likely infected 1975. Geno 1a
F4  8 millions VL,  AST 140  ALT 140
Generally in good health except problems are creeping up rapidly!
2 failed attempts Inf 2000 and Inf-riba 2010
Harvoni 24 weeks
Start 11/13/2014   EOT 4/27/2015
VL2 - UND
VL4 - UND (may 25)
VL12 - UND
VK24 -  UND
Hopefully cured forever!

Offline JillLynn

  • Member
  • Posts: 205
  • contracted 1973/ peg/rib 1999 & 2004/on harvoni
Re: Itching and Rash! Any recommendations?
« Reply #24 on: December 03, 2014, 10:31:06 am »
thanks Mario...you too!!!   they didn't cancel my show....they suspended me from doing it for 2 weeks without pay.   I was there for 14 years at that time.     One girl said I showed her my back and when HR asked me I said yes I did. They said it had sexual overtones which totally blew my mind.   She had asked to see my back (which was a rashy mess) then she told them I flashed her.  IT WAS AN INSANE TIME!    I retired from that show in 2009 after 16 years.      I had a great run in radio for over 40 years.      But the whole suspension on treatment blew me away.     One of the cleaning ladies said I need to learn to lie and never tell the truth at work.   Her words exactly...."you know nothing, you see nothing, you hear nothing!"       If I had said I didn't show her my back,  I would have been off the hook.  but I told the truth and got suspended for it.     I was a great employee with high ratings.....so this was seriously mind blowing.
« Last Edit: December 03, 2014, 10:35:01 am by JillLynn »

Offline mario555

  • Member
  • Posts: 226
Re: Itching and Rash! Any recommendations?
« Reply #25 on: December 03, 2014, 10:36:31 am »
I agree totally!!! The sexual connotations with showing your back is ssssstrrreched an awful lot!!!! You could have had a hell of a good court case with this one with a jury! Good thing they had you rather than me on front of them!
In any case, you seem to have tried hard to forget about those as....e. Good riddance!
In any case, think of you and don't forget the cleaning ladie's words ''See nothing, hear nothing and do nothing'' so as to stay safe...
60 years old. Likely infected 1975. Geno 1a
F4  8 millions VL,  AST 140  ALT 140
Generally in good health except problems are creeping up rapidly!
2 failed attempts Inf 2000 and Inf-riba 2010
Harvoni 24 weeks
Start 11/13/2014   EOT 4/27/2015
VL2 - UND
VL4 - UND (may 25)
VL12 - UND
VK24 -  UND
Hopefully cured forever!

 


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