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Hep C Discussion Forum -> On Treatment -> My husband starts Epclusa today
Post Info TOPIC: My husband starts Epclusa today
CandaceV


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RE: My husband starts Epclusa today
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Hi Canuck, the itchy armpits have stopped.  He tried deodorant last night and all's well this morning.  He does get weird tiny, itchy bumps from too much sun.  He comes in the house and they disappear.

The kidney surgery was difficult for him, but in my opinion, it wasn't much of anything.  2 days in the hospital on oxycodone, home with 5 days of oxycodone.  He was upset that he couldn't lift much for 4 weeks because it was spring here and he's a major gardener.  I did all the heavy lifting.  The only problem he truly has after surgery is the nerve that was cut during surgery.  It makes clothing over his stomach on the right side give him weird sensations.  That's getting better.  The first 60 days were hard for him to ride in a car, but that's much better too.  He's a very lucky man.

So far with Epclusa, he's a little headachy and a little tired, but nothing else so far.  That is amazing.

Now, about the night sweats....I've been with him for nearly 35 years.  He soaks the bed from sweat on a nightly basis.  He gets fresh bedding and mattress pad on a daily basis.  To say it's been a pain for me to do all that laundry all the time is a huge understatement.  Now, he sweats only when he uses 2 blankets.  We have a/c, but he still can't tolerate 2 blankets like I can.  There is improvement, though.  I'm sure he hasn't had kidney cancer for 35 years, so his night sweats were likely caused by the Hep C...his body continually trying to clear the virus, in my opinion.  I have to wash his bedding only twice a week now.  We slept in twin beds during our entire marriage because of the sweats.  It was just easier than washing bedding every day from a larger bed.



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Tig


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Candace,

If you need another recommendation for lotions that soothe and relieve the itchy skin and rash, you might give a product called "Caladryl" a try. It's a combination of Calamine and Benadryl. It's great stuff and helped my Ribavirin rash immensely. Good for all kinds of skin discomfort.



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Linuxter


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Hi Candace,

Just a reminder for your husband to be sure to drink 3-4 liters of water per day.

Keeping up with that level of hydration through treatment should keep any side effects at bay.

Do keep the doctor informed, hopefully this is just temporary, glad to hear that the Benedryl is working.

 

Linux



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63yy,HCV,2b,F3-A1, Sof/Riba,12wks Tx   SOT: 1/20/16, HCV-RNA 9,816,581, ALT 56, Hb 14.6

4wk: HCV-RNA <15 Detected, ALT 15, AST 17, Hb 13.6 EOT: 4/12/16, ALT 18 , Hb 12.9176a2f85d05d9c965eafe199f2ba9ba5.jpg SVR Achieved 7/8/16

 
Canuck


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Hi Candace,

Glad the Benedryl cream works, never tried it. Maybe this is just "one of those things" and nothing dire.

I've had skin reactions a couple times, to rx. Decades ago, I had a fairly large uncomfortable generalized contact dermatitis, the doc gave me a script for Eucerin ointment for it - unfortunately it seems i was quite allergic to something IN the Eucerin cream!! You should have seen me! I was in 10 times worse condition than my simple (bad enough) dermatitis, now covered with angry hives! Then, next, the super-duper rx oral anti-histamine pills the dermatologist prescribed for me just about knocked me out. Felt like I was dragging an extra 100 lb. load around in a body with very upset skin! Who knew skin could be such an entertaining organ! Live and learn.

Another time, recently, in midst of gaining some immunization that I needed (because of the HCV) I went for a series of HAV, HBV and pneumoccocal injections, curiously I broke out in hives (confined only to one injection site area) - hives resolved within a week doing nothing. In retrospect we guess it was the pneumococcal injection, but perhaps because my immune system was already in a weird state with a 10 million HCV VL, and receiving some HAV/HBV immunization at the same time.

Read an obscure study one time about just the state of some peoples "upset' and hard working immune systems (while harbouring HCV for example), actually contributing to mysterious hive and/or other allergic reaction troubles in small ways.

Lots of times people will never know what actually caused a skin reaction. 

You two are doing all the right things, I am betting he is going to have no trouble finishing this course of Epclusa.

I am SO glad you two managed to get this great new daa treatment! 

I am also VERY glad how the renal tumour thing turned out. Couldn't have a better result!, and, if I was going to have to have a tumour to be worked on, then I would want a kidney one like his - sounds weird eh?, but I have read about the high incidence of EXCELLENT outcome with this. A good one to have if you have to have it, responds VERY well. Did he find the surgery or surgery recoup tough? No more night sweats?

BTW - like your hubby, I too had a dramatic VL drop, just BEFORE starting treatment, no milk thistle, or other explanation other than just me and just because loads fluctuate. I had been packing over 10 million VL, on day one of treatment I was less than a million! With Epclusa's robustness, load seems not to be a factor. C.

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
CandaceV


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Canuck, he's using Benedryl cream, which stopped the itching.  No itching anywhere else.  The specialty pharmacy has a 24-hour pharmacist on duty, they say possibly related to Epclusa since it's new and to watch for any other itching or hives. 
He hasn't ever had any kind of anaphylactic reaction in the past and I doubt this is serious either, but will be reported to his doctor on Monday.  Thanks!
Canuck wrote:

Candace,

Sheesh, I wouldn't think so (reacting to Epclusa), but good idea to watch. I cannot recall reading anything like that in the "contraindication/adverse effects" thing (some now posted over in "GT3's and sof/vel trials"). Sounds co-incidental to me - we all get "pre-primed" to expect sides or to try to attribute a reason for a symptom, but this is one I cannot really account to a direct reaction to Epclusa.

HOW allergic IS he to these other things you listed, has he ever had "any full-out anaphylactic type" reactions to any of the "known" allergies you listed? Is he a person who will develop hives for a known good reason otherwise? Are his allergies often just accompanied by "itching"? 

It's hard to say (from here), but if he is the sensitive skin type, and he's pre-primed to be expecting sides, then perhaps just a careful watch is all that is required - you and he will have to be the judge of that. Personally, I would not guess it is an allergic reaction to the meds. It is an odd "localized" versus "generalized" or wider-spread skin thing, making me think not-so-much a "systemic" itching reaction. Something has made his armpits itchy, but if that is all it is, then the usual course would be to treat with what you know works and is safe for him, whether that be observing, using a cool oatmeal poultice, taking an antihistamine that you know he can take, and maybe some soothing hydrocortisone. Hard to know how severe his itching is, or what might be causing it - when in doubt default to experts. With common sense guessing on your own, default to try what you already know would be safe for him.

Sorry, hard to help from over here, but it could be just a one-off.

Had you said he had vast areas hot, red, skin, covered with hives, itching head to toe, eyes, mouth, head, tongue, throat swelling, SOB, I would of said call 911!, but it sounds like just a simple, uncomfortable, mysterious, worrisome, unexplainable, but for some good reason that may never be known armpit itchiness.  

Keep an eye on it, hopefully it dissipates. I am guessing it will. If it just disappears, just remember to mention it to your doc. C.

 

 



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Canuck


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Candace,

Sheesh, I wouldn't think so (reacting to Epclusa), but good idea to watch. I cannot recall reading anything like that in the "contraindication/adverse effects" thing (some now posted over in "GT3's and sof/vel trials"). Sounds co-incidental to me - we all get "pre-primed" to expect sides or to try to attribute a reason for a symptom, but this is one I cannot really account to a direct reaction to Epclusa.

HOW allergic IS he to these other things you listed, has he ever had "any full-out anaphylactic type" reactions to any of the "known" allergies you listed? Is he a person who will develop hives for a known good reason otherwise? Are his allergies often just accompanied by "itching"? 

It's hard to say (from here), but if he is the sensitive skin type, and he's pre-primed to be expecting sides, then perhaps just a careful watch is all that is required - you and he will have to be the judge of that. Personally, I would not guess it is an allergic reaction to the meds. It is an odd "localized" versus "generalized" or wider-spread skin thing, making me think not-so-much a "systemic" itching reaction. Something has made his armpits itchy, but if that is all it is, then the usual course would be to treat with what you know works and is safe for him, whether that be observing, using a cool oatmeal poultice, taking an antihistamine that you know he can take, and maybe some soothing hydrocortisone. Hard to know how severe his itching is, or what might be causing it - when in doubt default to experts. With common sense guessing on your own, default to try what you already know would be safe for him.

Sorry, hard to help from over here, but it could be just a one-off.

Had you said he had vast areas hot, red, skin, covered with hives, itching head to toe, eyes, mouth, head, tongue, throat swelling, SOB, I would of said call 911!, but it sounds like just a simple, uncomfortable, mysterious, worrisome, unexplainable, but for some good reason that may never be known armpit itchiness.  

Keep an eye on it, hopefully it dissipates. I am guessing it will. If it just disappears, just remember to mention it to your doc. C.

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
CandaceV


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My husband has itchy armpits.  Never had itchy armpits before.  Related to Epclusa?  I'm watching him closely for hives.  His allergies are poison ivy, prednisone, and codeine.  No changes in laundry soap, shower soap or deodorant. 



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CandaceV


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Thanks, I will.  Love your kitty.
He's doing fine.  Waiting for side effects that aren't coming.  No headache or tiredness yet.  He's kinda crabby though.  Wondering if they'll ever come up with a cure for that.  :)
RAGDOLL wrote:

Hi Candace, just got caught up on your thread..... So great that your husband was approved for Epclusa... He will do great .  Keep us posted on progress.   Chris

 



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RAGDOLL


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Hi Candace, just got caught up on your thread..... So great that your husband was approved for Epclusa... He will do great .  Keep us posted on progress.   Chris



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CandaceV


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Canuck, it's no problem, we have plenty of info from the gastro, I will read it today.  Thanks for trying.
Canuck wrote:

Candace,

Sheesh, do I have trouble knowing how to make things post! 

I have this little thing on "Epclusa" contraindications, but I cannot make it stick here.

So, instead, I went thru and re-read my own "trial" instructions/info, and the list it contained of sides (quite a low incidence) that one "might" experience, I scanned portions and tried to post to here - but nope, I just don't know how to do it! The trial instructions covered 2 scenarios - "possible" sides if you were on a sof/vel "only" trial), and, "possible" sides if you were on a sof/vel/vox trial - there were more GI related sides in the vox arm.

Vox was the "must have with a meal", for Epclusa alone, this dietary rule did NOT apply.

We also had webtomass and tkflex36 who were on sof/vel (differing trials), and both of these fellows had NO or next to NONE for sides. I believe it was tkflex36 in the beginning who was doubting he had even been given the "real" deal, wondering if had had been given placebo!!, as he could detect NO sides at all!

It's a good day - day one done for you - that first pill down the hatch!smile C.

 

 



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CandaceV


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Thank you, Cheddy.
Cheddy wrote:

Congratulations on the new start.  I have to say, things are changing so quickly with new treatments that I am at a loss for information.  I do know that you it's great to put one foot in front of the other to eradicate this virus.  Best of luck and please keep us up to date.

 



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Canuck


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Candace,

Sheesh, do I have trouble knowing how to make things post! 

I have this little thing on "Epclusa" contraindications, but I cannot make it stick here.

So, instead, I went thru and re-read my own "trial" instructions/info, and the list it contained of sides (quite a low incidence) that one "might" experience, I scanned portions and tried to post to here - but nope, I just don't know how to do it! The trial instructions covered 2 scenarios - "possible" sides if you were on a sof/vel "only" trial), and, "possible" sides if you were on a sof/vel/vox trial - there were more GI related sides in the vox arm.

Vox was the "must have with a meal", for Epclusa alone, this dietary rule did NOT apply.

We also had webtomass and tkflex36 who were on sof/vel (differing trials), and both of these fellows had NO or next to NONE for sides. I believe it was tkflex36 in the beginning who was doubting he had even been given the "real" deal, wondering if had had been given placebo!!, as he could detect NO sides at all!

It's a good day - day one done for you - that first pill down the hatch!smile C.

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
Cheddy


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Congratulations on the new start.  I have to say, things are changing so quickly with new treatments that I am at a loss for information.  I do know that you it's great to put one foot in front of the other to eradicate this virus.  Best of luck and please keep us up to date.



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GT2a, VL 681,500, Less than F1, Treatment Naive

12 wks Sovaldi/Ribavirin, SOT 2/25/16, EOT 5/17/16

UND at 2,4,8 and 12 wks during treatment but ribavirin crazy.

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 
CandaceV


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Thank you...I'll post updates.
Shadowfax wrote:

Congrats on the starting of this medication.

This is a good news day. Please keep us posted as to how he is doing!

Best regards to both of you.

 

SF

 



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CandaceV


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We unfortunately didn't get Rx boxes...just a pill bottle shipped inside a foam "cooler", but we did get quite a bit of information from the gastro yesterday, I'll go through that tomorrow.
Canuck wrote:

I believe your right Pabilto, our particular trial "instructions" were very specific about food intake, and I do believe it WAS due to our trials containing the (additional to Epclusa) the NS3/4A "vox" (formerly called GS-9857).

I have been finding bits of info, here and there, about Epclusa (general contradindications info and such) but can't seem to get that one posted, it's in a "slide or photo-like format"! But we can keep trying, to get as much info posted about our sof/vel (Epclusa) AND "vox", as it seems we will soon be in more and more good company of lucky folk who will also be digesting Epclusa! Yay!

You and I did not have the "box" she came in (for "market" Epclusa) as our info came from our sof/vel/vox trial instruction sources only - but surely (now), Gilead's marketing/packaging/contraindications/instruction sheets (that come with the prescription boxes) is out there and will be soon be more easily post-able.

C.

 



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CandaceV


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Thanks, Tess.  I promise to post updates.  There are actual people here who've had treatment and it's so helpful.  Thanks to them too.
MommaT wrote:

Thank you Canuck and Candace!

I forgot to say how happy I am that your husband got the Epclusa

and has the support of people on this site!

I really hope that you do Keep us Posted as

to how he is doing with the Medication! I am all ears! lol

I am learning new things all the time and it helps!

Tess

 



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CandaceV


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He's expecting to feel bad for a while, but gastro swears it will be "pretty much nothing".  I'll check the info we got from him about food, but his RN educator said there was no food restrictions...but I will double-check, thank you.
Pablito wrote:

I'm so happy for him.  His viral load will undergo a 3 log drop (i.e. from 2.1 million to 21000) after just one dose!

There maybe some mild flu-like/fatigue side effects for the first week and then he'll feel much better.

Re food, I was actually on sof/vel/vox (i.e. Eclupsa plus another drug) and the recommendation may have been for the 3rd drug, vox; so check the patient info sheet and see what it says...Canuck can you advise on this?

Pablo

 



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Shadowfax


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Congrats on the starting of this medication.

This is a good news day. Please keep us posted as to how he is doing!

Best regards to both of you.

 

SF



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65 yo, GT1A, , Cirrhosis, F-Scan F4 33.5, TX Naive Harvoni 12 wks

SOT 2/9/16 / ALT 187 AST 114 VL 2.3M.    POSTS

EOT 5/2/16  ALT 35/ AST/25  platlets 126 C/B VL UND

EOT +12 7/26/16  ALT 25 /AST 22/ ALP 83  platlets 129 C/B VL UND

EOT + 24 10/18/16 ALT 27/ AST 20/ ALP 71 platlets 153 C UND

 * SVR *
Canuck


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MommaT,

YOU have all our support too!!

Hang in there, we will all try to help you get this figured out, as best we can. C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
Canuck


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I believe you're right Pabilto, our particular trial "instructions" were very specific about food intake, and I do believe it WAS due to our trials containing the (additional to Epclusa) the NS3/4A "vox" (formerly called GS-9857).

I have been finding bits of info, here and there, about Epclusa (general contradindications info and such) but can't seem to get that one posted, it's in a "slide or photo-like format"! But we can keep trying, to get as much info posted about our sof/vel (Epclusa) AND "vox", as it seems we will soon be in more and more good company of lucky folk who will also be digesting Epclusa! Yay!

You and I did not have the "box" she came in (for "market" Epclusa) as our info came from our sof/vel/vox trial instruction sources only - but surely (now), Gilead's marketing/packaging/contraindications/instruction sheets (that come with the prescription boxes) is out there and will be soon be more easily post-able.

C.



-- Edited by Canuck on Saturday 6th of August 2016 12:44:40 AM

__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
MommaT


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Thank you Canuck and Candace!

I forgot to say how happy I am that your husband got the Epclusa

and has the support of people on this site!

I really hope that you do Keep us Posted as

to how he is doing with the Medication! I am all ears! lol

I am learning new things all the time and it helps!

Tess



__________________
Pablito


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I'm so happy for him.  His viral load will undergo a 3 log drop (i.e. from 2.1 million to 21000) after just one dose!

There maybe some mild flu-like/fatigue side effects for the first week and then he'll feel much better.

Re food, I was actually on sof/vel/vox (i.e. Eclupsa plus another drug) and the recommendation may have been for the 3rd drug, vox; so check the patient info sheet and see what it says...Canuck can you advise on this?

Pablo



__________________

44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.
CandaceV


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Thanks, Canuck.  Going to look for MommaT's posts.
Canuck wrote:

Welcome to both of you.

Congrats for getting Epclusa! YES, of course, we will undoubtedly be interested in your updates!!

Co-incidentally, see post(s) from "MommaT," just today! C.

 



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Canuck


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Welcome to both of you.

Congrats for getting Epclusa! YES, of course, we will undoubtedly be interested in your updates!!

Co-incidentally, see post(s) from "MommaT," just today! C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
CandaceV


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Thanks, Pablito.  He's taking the first dose in 5 minutes, so he's quickly making something to eat.  He should have no problem drinking more water, he only drinks 2 cups of coffee in the morning, then water until bed.
Pablito wrote:

Congrats Candace and Mr Candace

I've just finished Eclupsa.  UND at EOT+4.

Linuxter is spot on with the water thing.  Take the meds at the same time each day after a meal.  That's how Eclupsa differs from Harvoni....need to eat first.  I didn't once and got nasty cramps.

Best of luck!



-- Edited by Pablito on Friday 5th of August 2016 02:54:00 PM

 



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Pablito


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Congrats Candace and Mr Candace

I've just finished Eclupsa.  UND at EOT+4.

Linuxter is spot on with the water thing.  Take the meds at the same time each day after a meal.  That's how Eclupsa differs from Harvoni....need to eat first.  I didn't once and got nasty cramps.

Best of luck!



-- Edited by Pablito on Friday 5th of August 2016 02:54:00 PM

__________________

44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.
CandaceV


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Thanks for your reply, Linux.  He's off the milk thistle, been off since April.  He takes fish oil and magnesium glycinate (for mild Afib).  His doctor says he can continue with those, at least 4 hours before or after Epclusa.  I have passed on the advice to drink lots of water to him...he's a coffee drinker in the morning, water after until bed, so that shouldn't be hard for him.
Linuxter wrote:

Hi Candace,

Congrats on getting the meds, big step and a relief to you both no doubt.

You mentioned Milk Thistle, I assume he stopped that to take the Epclusa?

Just be sure to let your doctor know of ANY supplements he is taking if any.

Your husband will need to drink LOTS of water while on treatment, 3-4 liters per day.

So glad to hear that he got started, please do keep us posted.

 

Linux

 



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Linuxter


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Hi Candace,

Congrats on getting the meds, big step and a relief to you both no doubt.

You mentioned Milk Thistle, I assume he stopped that to take the Epclusa?

Just be sure to let your doctor know of ANY supplements he is taking if any.

Your husband will need to drink LOTS of water while on treatment, 3-4 liters per day.

So glad to hear that he got started, please do keep us posted.

 

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63yy,HCV,2b,F3-A1, Sof/Riba,12wks Tx   SOT: 1/20/16, HCV-RNA 9,816,581, ALT 56, Hb 14.6

4wk: HCV-RNA <15 Detected, ALT 15, AST 17, Hb 13.6 EOT: 4/12/16, ALT 18 , Hb 12.9176a2f85d05d9c965eafe199f2ba9ba5.jpg SVR Achieved 7/8/16

 
CandaceV


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I'll update his progress if anyone is interested.  The cost was $75,000.  Medicare paid, as well as his secondary policy.  The co-pay was $585, but a Foundation here in Ohio paid it.

Interestingly, his viral load recently dropped from 4.7 million to 2.2 million, with normal liver enzymes.  ALT at one point was 54, now at 28.  He was on milk thistle for 18 months.

He had surgery in May to remove a tumor from his kidney, clear cell renal carcinoma.  It was Grade I, they got it all. 

Anything else you'd like to know, just ask :)  You've been very helpful to me.  Getting him to get tested and seek treatment was a 5 year endeavor.

On edit, he had a Fibroscan result of 1-2.



-- Edited by CandaceV on Friday 5th of August 2016 02:46:48 PM

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