Hep C Discussion Forum

Members Login
Username 
 
Password 
    Remember Me  
Chatbox
Please log in to join the chat!
Hep C Discussion Forum -> On Treatment -> Side Effects....
Post Info TOPIC: Side Effects....
Dillo


Senior Member

Status: Offline
Posts: 227
Date:
RE: Side Effects....
Permalink  
 

tinytina99 wrote:

It has been almost 2 months since I had to stop treatment and as of the end of May I am still undetected. Next lab work is scheduled for  the end of June. The rash is almost completely gone. Blood work is looking good. I will keep you posted

 Glad to hear your still undetected. My doctor has never offered a blood transfusion but had several shots of procript. Stopped all Riba for almost 2 weeks trying to get my HGB back up to at least 10 from a low of 8.5. I have had worse problems with anemia since off the Incivek than on although mine did drop to around 9.5 a couple of times during it.

Glad to hear the rash is going away and your still undetected!



__________________

GT 1a Started triple tx with Incivek, Pegasys, and Riba 2-6-2013. UND at 4,6,12,23,& 24 wks EOT 7-26-2013. Probably had Hep C for 20-30 years. Don't really know when I got it.

tinytina99


Member

Status: Offline
Posts: 8
Date:
Permalink  
 

Kellie, 

The mottling on my legs and rear-end have cleared up, but the arms still  have a lot of mottling..   Anemia got so bad had to have 2 transfusions even after procrit injection. I have heart issues and my hemoglobin level dropped to 8.3 after procrit. I will keep you posted on progress.

Hugs,

T



__________________

Geno A1, VL~7,213,238  starting triple treatment with Incivek 3/1/2013. Stopped all treatment on 4/22/2013 due to Incivek rash and anemia.
Kellie


Senior Member

Status: Offline
Posts: 328
Date:
Permalink  
 

Hi tina, Oh I'm sorry you went through that. wow - impressive picture of the rash. what a trooper girl! I'm in the same boat. The skin issued started really early, so I know exactly what you went through. My anemia is not too bad. I'm looking forward to your updates with the labs. Thank you for sharing this - Is the skin mottling going away? I've got really bad mottling on my quads and knees. Hug Kel



__________________

HCV 1A 1980. Dual tx 2003 -UND at wk 11-discontinued due to severe depression

Started Triple 4/16/13 for 24 weeks

UND wk 4,6,8,12,17 & 24

E.O.T. 9/29/13

EOT + 12 weeks=SVR, and EOT +26 weeks=Cured!
Matt Chris


Guru

Status: Offline
Posts: 1782
Date:
Permalink  
 

Tina 

That is very good news, sounds you have made it through the worst time and still received the benefits.

Will be thinking of you and hoping for the best

Matt



__________________

"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 
tinytina99


Member

Status: Offline
Posts: 8
Date:
Permalink  
 

It has been almost 2 months since I had to stop treatment and as of the end of May I am still undetected. Next lab work is scheduled for  the end of June. The rash is almost completely gone. Blood work is looking good. I will keep you posted



__________________

Geno A1, VL~7,213,238  starting triple treatment with Incivek 3/1/2013. Stopped all treatment on 4/22/2013 due to Incivek rash and anemia.
tinytina99


Member

Status: Offline
Posts: 8
Date:
Permalink  
 

It started about 3 weeks ago and Sunday it showed up in the back of my throat. So far I only have 1 lesion in my throat.  I have blisters as big a quarters. I had 6 doctors from the Hematology  Department checkingout my rash yesterday.  The dr. Put me on prednisone and I have an appointment with Dermatologist today. 

I hate that I have to stop treatment but was told rash would only get worse.  I will have to wait to see what is on the horizon for treatmernt.

Tina

 



__________________

Geno A1, VL~7,213,238  starting triple treatment with Incivek 3/1/2013. Stopped all treatment on 4/22/2013 due to Incivek rash and anemia.
Dillo


Senior Member

Status: Offline
Posts: 227
Date:
Permalink  
 

I'm sorry you had to stop treatment too Tina. More important I think right now best to take care of the rash and get better. I believe there will be better treatment coming up for you on the horizon.

 

I had read about it before treatment and discussed what we might do with my doctor before beginning.  Mine just started this last weekend. Starting tomorrow I have one week left and they told me in no uncertain terms I will be off the Incivek on May1st if not before.

 

You take care of yourself and get better



-- Edited by Dillo on Tuesday 23rd of April 2013 01:46:54 PM

__________________

GT 1a Started triple tx with Incivek, Pegasys, and Riba 2-6-2013. UND at 4,6,12,23,& 24 wks EOT 7-26-2013. Probably had Hep C for 20-30 years. Don't really know when I got it.

Dillo


Senior Member

Status: Offline
Posts: 227
Date:
Permalink  
 

Hi Tina,

Thats a bad rash.  Thats what they have to do when it begins to get that bad. Mine started up last week and became worse after my Friday night injection.  I was sent to the dermatologist today and they did a bioposy. I don't know all the results but they gave me a script for some steriod cream and cleared me to continue my last two weeks of Incivek  pending how much worse it gets.

http://www.webmd.com/hepatitis/news/20121219/fatal-rash-hep-c-incivek

 

I asked and I was lead to believe what gets really bad is when the rash gets into your mouth and throat and can close off your airway pretty quickly.

How long have you had the rash?

 



__________________

GT 1a Started triple tx with Incivek, Pegasys, and Riba 2-6-2013. UND at 4,6,12,23,& 24 wks EOT 7-26-2013. Probably had Hep C for 20-30 years. Don't really know when I got it.

tinytina99


Member

Status: Offline
Posts: 8
Date:
Permalink  
 

The rash has gotten so bad the doctor stopped the Incivek on Wednesday. The rash covers about 70% of my body. Today they stopped all treatment.  I had just started my 8th week.  no



Attachments
__________________

Geno A1, VL~7,213,238  starting triple treatment with Incivek 3/1/2013. Stopped all treatment on 4/22/2013 due to Incivek rash and anemia.
tinytina99


Member

Status: Offline
Posts: 8
Date:
Permalink  
 

Thanks everyone for the warm welcome and info. It means a lot knowing everyone is just a click away. I see teh doctor tomorrow, so I will keep you posted 

@ Vern...  I am sword shopping as we "speak" I will let you know when it gets here. biggrin

 

 



__________________

Geno A1, VL~7,213,238  starting triple treatment with Incivek 3/1/2013. Stopped all treatment on 4/22/2013 due to Incivek rash and anemia.
12Step Guy


Senior Member

Status: Offline
Posts: 413
Date:
Permalink  
 

TT99 welcome. Rash, skin rash, butt burn is common to treatment. But with a couple of gallons of creams you should be OK. If you haven't done so, clip your nails as close as you can, then file them down. Make them as smooth as possible. Not sure what to tell you about the irritability that comes from itching, I'd suggest taking up sword fighting. Get one of those pirate hats, eye patch, Parrot and sword. Then invite some family or friends over and chase them around.

You will get through this, a day at a time, hour at a time, five minutes at a time.

 

Vern



__________________

Genotype 1a, IL 28 = CT  Interferon and riba 48 wks in 99, Daily Peg and Riba 18 months in 2007, Started Incivek, Peg, Riba 6/21/12. 4th stage cirrhosis. Last Dart will be May 23 2013.
Butcheeyboy


Veteran Member

Status: Offline
Posts: 56
Date:
Permalink  
 

tinytina99 wrote:

Hello everyone, this is my first post since starting treatment on 3/1/2013 with Pegasys/Ribavirin/Incivek. My Geno is 1A and my VL was a little over 7 million prior to starting treatment. I am now in my 7th week of treatment and my VL was neg at 5weeks. 

 

I am having a lot of trouble with so many side effects.  I have sone heart issues (3 blockages no stents)  and my cardiologist said my hemoglobin couldnt drop below 10. Over the last couple of weeks it has continued to drop from 15.6 even though we were decreasing the Ribavirin and I had a procrit injection on 4/10. On 4/12 I had to be taken to the Er with a hemoglobin level of 8.3 I received 2 unit of Blood.  Felt much better but is seems to be quickly down. I am now only taking 200mg of Ribavirin a day. Not sure if we will try to increase it or not.

 

My other major side effect is the skin rash. It is all over my arms, legs, stomach, and moving to my back.. I have been taking Benadryl and cortizone cream. Now starting a prescription cream.   

 

Any suggestions?

 Hi!! Welcome to the Forum, great group of friends here.

I had very much the same side effects. The rash was horrible and still dealing with the sores that were left and I have been finished with my 48 week

treatment since March 20th. It was kind of strange that the rashes were in the same exact spots on each arm and legs and they have left me with some scars.

Yes the blood tranfusions did make me feel better but only for a few days. I was stubborn and kept on going dispite my Dr.'s

wishes that I stop. I have been NEG/UND since week 8 and continue that way as of last week.

I don't know how well you tolerate but hope you hang in there. There are going to be other side effects down the road so please prepare

yourself mentally and don't try to do to much in one day, rest and stay calm.

I wish you the best of luck!

Dougie



__________________

May You Have A Safe Trip & A Successful Journey
Matt Chris


Guru

Status: Offline
Posts: 1782
Date:
Permalink  
 

Hello Tinytina and welcome to all things HCV

You are making good progress with the treatment so keep your vision to the end, it will help you get through the tuff times.

Keep on posting and interface with the members, they will give you extra strength to deal with all that comes with being on treatment.

All the best 

Matt





__________________

"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 
Cinnamon Girl


Guru

Status: Offline
Posts: 5629
Date:
Permalink  
 

Hi Tinytina, welcome from me too!   Sounds like you`re having quite a rough time of it so far then.  The sx (side effects) from the triple therapy with incivek can be pretty hard going, and you`ll find that many of our members have had the same issues to deal with.   If you use the `search` button (at the top of the page, in the middle) as Malcolm suggested, you`ll find lots of helpful tips. 

This treatment workbook might be useful to you as well, you can select and download the one for you (telaprevir)...

http://www.hepatitis.va.gov/products/patient/treatment-workbooks.asp

All the best of luck, and congrats on the `undetected` result!  smile  ~ Jill

 

 

 

 



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
mallani


Guru

Status: Offline
Posts: 3398
Date:
Permalink  
 

Hi TinaTina,

Welcome to the Forum. Your rash is probably due to Incivek and will settle down after you finish (in 5 weeks). If you use the Search button and type in ' Rash Incivek' you will get suggestions about how other Forum members dealt with it. There is also a Ribavirin rash which is less severe. The Procrit should help the anaemia. It would be good if you can get your Hb up so the Ribavirin dose can be increased. Many of our members have needed transfusions. Keep us informed and good luck. Undetected at 5 weeks is a good sign. Cheers.



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
tinytina99


Member

Status: Offline
Posts: 8
Date:
Permalink  
 

Hello everyone, this is my first post since starting treatment on 3/1/2013 with Pegasys/Ribavirin/Incivek. My Geno is 1A and my VL was a little over 7 million prior to starting treatment. I am now in my 7th week of treatment and my VL was neg at 5weeks. 

 

I am having a lot of trouble with so many side effects.  I have sone heart issues (3 blockages no stents)  and my cardiologist said my hemoglobin couldnt drop below 10. Over the last couple of weeks it has continued to drop from 15.6 even though we were decreasing the Ribavirin and I had a procrit injection on 4/10. On 4/12 I had to be taken to the Er with a hemoglobin level of 8.3 I received 2 unit of Blood.  Felt much better but is seems to be quickly down. I am now only taking 200mg of Ribavirin a day. Not sure if we will try to increase it or not.

 

My other major side effect is the skin rash. It is all over my arms, legs, stomach, and moving to my back.. I have been taking Benadryl and cortizone cream. Now starting a prescription cream.   

 

Any suggestions?



__________________

Geno A1, VL~7,213,238  starting triple treatment with Incivek 3/1/2013. Stopped all treatment on 4/22/2013 due to Incivek rash and anemia.
Page 1 of 1  sorted by
 
Quick Reply

Please log in to post quick replies.
Hep C Discussion Forum -> On Treatment -> Side Effects....
Legal Disclaimer:

THIS FORUM, IT'S OWNERS, ADMINISTRATORS, MODERATORS AND MEMBERS DO NOT AT ANY TIME GIVE MEDICAL ADVICE AND IN ALL CASES REFER ANYONE HERE TO SEEK APPROPRIATE MEDICAL ADVICE FROM THEIR DOCTOR.