Harvoni - Legs, Feet Swelling - edema

[Peterc89]

I am 73 with Hep C for 30 years. I started Harvoni on 6/19/2015.  By day 10 my lower legs, ankles and feet started swelling and it has gotten worse ever day up to and including today at day 17.
Has anybody else had this problem?  Messages are in to GI doctor and heart doctor as I had a heart attack 15 years ago and have several stents in heart and iliac artery so I have some circulatory problems, but nothing like this leg swelling before.

Any suggestions for what to do besides sit around all day with my feet elevated.

[sabre]

Hi Peter,

If you have not done so already, have your blood pressure checked. Harvoni has been known to raise BP and this can contribute to fluid retention. I had high BP before treatment, but it shot up considerably during my 12 weeks.

Any swelling should be addressed by your MD as swelling in the chest around your lungs and heart can be dangerous. I'd make a call in the AM if I were you. edit: i see you already have calls into your doctors.

Best wishes.

[Peterc89]

Dear Sabre,

Thank you so much.  BP is normal so we will see what the doctors have to say tomorrow.

[Lynn K]

Hi Peter

How is your liver do you have cirrhosis? About 6 months after I was diagnosed with cirrhosis I started having lower leg swelling called edema or sometimes pitting edema because you can press with a finger and it stays indented for a period of time.

Edema can either be heart or liver related as well as other causes.

http://www.webmd.com/heart-disease/heart-failure/edema-overview

I have been taking a diuretic since 2008 spironolactone to treat my edema. You should definitely discuss with your doctor

Good luck
Lynn

[Peterc89]

Dear Lynn

Thanks for you response and info.  Not diagnosed as Cirrhosis, but Fibrosure test result of 0.72 F3-F4 indicates perhaps the beginning of cirrhosis and the Ultrasound scan should some cirrhotic indications.  Seeing Heart specialist in regards to circulatory issues on Friday.  GI guy is lame and just referred me to the Primary Care Physician.  I know it is not up to a GI specialist to deal with swelling feet,  but I cannot believe this has nothing to do with Harvoni since I just started it 3 weeks ago.

[Lynn K]

Yeah I dunno my swelling came on suddenly.

I was camping and had twisted an ankle a bit so decided to buy some Converse high tops for extra support. When I was in the shoe store chatting with the clerk about my swollen ankle she noticed the other was almost equally swollen. This was 7 months after I was diagnosed with "early" cirrhosis on biopsy.

Hope they figure it out for you soon

Good Luck

[Peterc89]

Feet still swelling.  Arterial Flow study to be scheduled and talking to docs re diuretic, but after 3 weeks of treatment with Harvoni  Hep C virus undetectable, so all of a sudden don't care about swollen feet.  First zero count in 30 years.

[sabre]

Peter,

Congratulations on being undetected! You're on your way, my friend.

Good luck with the swelling. I've had it, and while it isn't painful, it is uncomfortable and generally annoying. Mine was attributed to kidney disease/high BP. Some days, I'd be 8 - 10 lbs heavier at night than I was in the morning.

Thankfully, since treatment ended, so has my swelling.

[Peterc89]

Dear Sabre,

Wait, you didn't tell me you had swelling.  Tell me more.  Was it during treatment with Harvoni?  Or what treatment?  Were yo prescribed a diuretic? Or anything?

[Philadelphia]

Congratulations Peterc! What wonderful news.

[sabre]

Hi Peter,

I had fairly severe pitting edema in my feet, ankles, and at one point, in my legs up to my waist. This all began in November 2014 prior to the Harvoni treatment. I attributed it to long hours spent in an office chair because I was working day and night on a project for a couple of months.

I blew it off until January of 2015 and went in to my MD. My BP was in the 168/94 range and he prescribed a diuretic to try and reduce the swelling and BP. It helped initially, but then the swelling came back, albeit, to a lesser degree.

He also did a urine test which revealed that I was losing a lot of protein so he referred me to a nephrologist. After a series of blood tests, more urine tests, and an ultrasound, I was diagnosed with stage 3 chronic kidney disease. It was the nephrologist that suspected that the hepC may be affecting my kidneys and recommended that I follow up on that with my hepatologist.

The protein in my urine was a qualifying factor for approval through my insurance for Harvoni. I had swelling for most of my treatment even while taking a diuretic and BP medication, although it seemed to diminish over the 12 weeks. About two weeks after EOT, the swelling was basically gone and has not been a problem since.

Did they run any kidney function tests on you? My situation happened very quickly, that's why I ask.

Be well and good luck with the edema.

[Peterc89]

Dear Sabre,

Thanks for the full detail.  That is what I wanted to know.  Mine is not pitting edema and cardiologist does not think it is heart related and yes they did blood work including kidney and that is fine.  Only thing is a slightly elevated BNP which I am told may have something to do with heart condition or cirrhosis or hypertension.   I am F3-F4 on the Fibrosure test but not diagnosed as cirrhosis.  Cardiologist says the swelling is not significant enough to indicate a problem with the heart. So they are scheduling an arterial flow study to look at circulation issues in my legs. BP is always normal.

I looked up BNP and it only talks about it being an indicator of a heart condition and being only slightly elevated, not likely to be significant.

The part I was interested in is when you said it went away after treatment.  Doctor is of course thinking it has nothing to do with Harvoni, but since it started on day 10 of Harvoni I of course think it does.  Not important really, but... And I finally got the cardiologist to agree to deal with this condition as she was dismissing it as not a cardiology issue and therefore not her arena, and GI was saying it should be the cardiologist.  We don't seem to have a vascular disease department here at Cheshire Medical Center in Keene NH.  I suggested going to Dartmouth in Lebanon and then the cardiologist stepped back up, so we shall see.  Probably need a diuretic, but will of course wait for the arterial flow study.  So thanks for the input and I will be able to tolerate this better knowing that it will probably dissipate after stopping treatment in 9 more weeks.

All in all my issues seem small compared to your kidney problem so onward I go.
Thank you.

[laudalady]

I'm six months post Harvoni treatment and initially started the therapy in January of 2015.  In March, three months into treatment I was treated for plantar fasciitis and had several cortisone shots in my left foot.  In June, I developed a red, burning rash on my right foot. It continued to spread and soon both feet were red and inflamed and very painful.  I've seen 3 podiatrist, dermatologist, infectious disease specialist, ER physicians, herpetologist, and 2 hepatologist.  None of the doctors have any idea what is going on with my feet!  The redness has disappeared and come back but my feet remain inflamed and very painful.  I'm wondering if anybody had used a corticosteroid while taking Harvoni.  Any input would be greatly appreciated.
Marsha

[Kayfabe]

Hello, my name is Alana and I finished my 8 week Harvoni treatment 3 weeks ago. I had Hep C, under 500,000 viral load. No liver damage, no heart issues, no BP issues during. I had horrible side effects some of them mental even, some physical, and the one I noticed most was edema in both legs, feet, fingers and and all over inflammation that caused my skin to feel almost bruised beneath the surface. For example if I were to press on my skin, it would be tender to the pressure, even light pressure. Well these effects have not stopped in the 3 weeks after. My edema is still here, I never had retention prior to Harvoni. It cannot be from my liver, or BP since those are ok. I had constant kidney checks too all the way thru 8 weeks, and no kidney troubles. I was given Lasix my final 2 weeks. It caused such an extreme effect in my body that I had to urinate every 10 minutes, no exaggeration, so I could not function and was forced to discontinue it. Something caused my whole body to start retaining too much water and that had to have been Harvoni. It never went away. I gained weight taking it too, but I blame the excess weight on water, because I can see that is what it is. As of today, 21 days later, my Hep C has gone and has stayed gone so far. I am still having side effects, edema, as well as this overfull feeling after just eating a tiny amount of food, in upper abdomen, bloating excess gas, and still also tenderness in every fatty area, such as buttox, upper inner thighs, back of arms etc. I am at a loss, no clue what to do. I am happy to be cured of Hep C, but unhappy with all the new issues I never experienced before. It could be BP in your case. It could be another issue such as past heart problems. In my case, I have never had a heart issue, had no liver damage when starting, and no BP problems before or during. I am 40 years old, female, had Hep C a very long time, not sure exactly. Very low viral counts in spite of length of infection, and no symptoms of Hep C in my life, yet. I have lung issues, severe asthma and take Combivent, Advair for that.My lung issues have never caused these type of issues either before. Harvoni did not effect my breathing. I just have no answer but really need some myself as well.

[Lynn K]

Hi Alana and welcome to the forum

So sorry to hear of your problems with edema what have your doctors said about what they think is the cause? Have they done any additional testing to try to determine?

One suggestion is if you could try to reduce your salt intake that in itself may help. That is the first method for those of us with cirrhosis even before being prescribed a durietic.

Maybe they could try a milder diuretic? I have been taking Spironolactone for over 8 years now to help with my edema and mild ascites. The ascites seem to have improved now that my hep c is cured.

Good luck