Hep C Discussion Forum

Huey · Guru

RE: 2 weeks into sovaldi and olysio with a side effect question.

Marypetrecz · Senior Member

Thanks so much mallani. You are spot on.....im actually glad that's all it is.....I know it's very fixable and the pain will be gone, it's been very difficult. Outside of the side pain, I feel fantastic.....so alls going to be good, I confess to being afraid of being taken off these meds. I waited way too long to call my doctor out of fear. I'm so close to being rid of this dis ease and having my life back, I didn't want to jeopardize any thing,

thanks so much for the support.....ths is a great group of people and I feel humbled by the stories and experiences of the people here......

mallani · Guru

Hi Mary,

Your biopsy puts you at A3,F3. So, you have moderate inflammation and fibrosis, but are not cirrhotic. You have no reason to have portal hypertension.

Your CT report is vague, except for the 'markedly distended gallbladder with a dilated common bile duct...'. That almost certainly means a small gallstone blocking the bile duct. That will certainly cause pain. As you have found out, it should be removed. Best of luck and hopefully the surgeon can remove it via a laparoscope. The mild liver enlargement with fatty change is very common in chronic hepC. I also wouldn't worry a spleen that was 'mildly enlarged', and 'subtle inflammatory changes around the liver tip' means nothing.

You'll feel better once the gall-bladder is out. Cheers.

Marypetrecz · Senior Member

I have to get an ER CT....probably tomorrow, I don't know anything about this either. If I'm not in immenet danger,,,,,I will try and wait until monday. I can take pain killers to get through Friday and the venue has rooms....like hotel rooms across the parking lot,,,,,so I can rest in between,,,,I won't know anything else until tomorrow,,,,,but this really sucks,,,,I've been waiting for this wedding and it'll be grand and all the families,,,,, my hubby's,,,,who I love,,,,my family and my new family...and my x's family that I don't see very much any more,,,,,,.I'm so upset over this....

the good news it'll be over and the pain gone,,,,and my viral load blood work is due next Tuesday.....hoping it's all good,..I'm worried about surgery with the meds....scheez....I'm am living murphys law,

Isiscat2011 · Guru

Marypetrecz wrote:
The news is I have to have the gall bladder removed, they said tomorrow,,,I said no, my sons wedding is Friday night,,,,,300+ guests, 260$ a plate....my entire family...I'll get the lecture tomorrow from the docs.....this really sucks....I am so bummed.

Oh man, that sucks. Are you going to be ok for the wedding?

I don't know anything about gall bladder removals; mine is still in tact. I'm assuming it is safe to wait??

Marypetrecz · Senior Member

The news is I have to have the gall bladder removed, they said tomorrow,,,I said no, my sons wedding is Friday night,,,,,300+ guests, 260$ a plate....my entire family...I'll get the lecture tomorrow from the docs.....this really sucks....I am so bummed.

Marypetrecz · Senior Member

My typing is so bad and sp ck is changing all the words, so I thought I'd try a picture,

thanks mallani!

-- Edited by Marypetrecz on Wednesday 4th of June 2014 12:52:15 PM

Marypetrecz · Senior Member

Thank you Mallani.

biopsey......4-1-14. Score 5/16

a. Peri portal or periseptal interface hepatitis (peacemeal necrosis) mild/ moderate (focal, most portal areas) 2

b. Confluent necrosis. Absent. 0

c. Focal (spotty) lytic necrosis, apoptosis I and fcoal inflammation one focus or less of per 10x objective. 1

d. Portal inflammation moderate, some or all portal areas. 2

modified history activity staging: score 4/6

fibrous expansion of portal areas with a marked bridging (portal-portal (p-p) as well as portal-9 central (p-c). 4

mallani · Guru

Hi Mary,

An unusual CT report gets me started. An enlarged spleen is obvious but inflammation of the spleen and liver tip is not something you diagnose from a CT. Enlarged spleen in a patient with chronic HepC usually means portal hypertension. Have you ever had a biopsy or Fibroscan to determine your liver fibrosis? 'No peri-hepatic ascites' means no fluid surrounding the liver. Why would they mention that?

Diverticular disease may cause pain so that may be your answer. If your LFT's are normal, you do not have liver inflammation, so your pain is not coming from your liver. I presume you don't have gallstones. Post the whole report if you'd like an opinion. Cheers.

suziq · Senior Member

I did the Merck trial. They did NOT list side or abdominal pain as side effects. I had an ultrasound (because of pain) during treatment to check for gallstones. NOT the problem. Don't want to rain on anyone's parade, but I still have some abdominal pains at 20 weeks post treatment. Seems my digestive system has not recovered from the meds. Just bought some pro-biotics to see if that helps. NO antacids or stomach aids allowed during treatment. But, compared to what people have said about treatment with interferon, it is minor, a lot shorter and I have been UND since week4. Think we were all led to believe that the new meds were virtually side effect free--Not always the case.

Good luck to all of you still on treatment. See you in SVR land.

SuziQ

-- Edited by suziq on Wednesday 4th of June 2014 03:36:42 AM

Isiscat2011 · Guru

Healthy Smoothie Drinks to the rescue:

http://www.healthysmoothiehq.com/reduce-inflammation-smoothies

Marypetrecz · Senior Member

Thanks isiscat......I love my little bullet,,,,,and am always looking for good recipes, the chicken soup sounds heavenly, I'm going to check my freezer....

Isiscat2011 · Guru

I was hoping you'd be all better by now, Mary, but I guess these things take time to work out. I'm so sorry you are suffering. I think what that means is that you have lots of inflammation in your tummy area, but no fluid buildup, which is good. Hopefully Mallani will be by to offer a better translation.

Just rest and drink plenty of fluids. If you can get down some type of nutritious blender drink or a little chicken soup that would be good too. Hang in there.

Marypetrecz · Senior Member

Ok , just got back from the hospital and a cat scan. I have inflammation and enlarging of the spleen and inflammatory changes surrounding the inferior liver tip suggesting hepatitis.....duh.....no definitive peri hepatic ascites...what ever that means. my doc and I will go over it tomorrow, I also have diverticulosis of the sigmoid colon.

Ok ok that's enough to have me doubling in pain...but I guess it's fixable,....so alls good with me right now. At least I know what's going on now,

Marypetrecz · Senior Member

Yeah! Fantastic! I'm just finishing week 3......so next week is my first viral load. I did have to go to the hospital for the side pain and they ran every test known to man and alls good, they couldn't find a reason for the pain......that's not good.....but they said my liver functions are normal......I am tickled over that.....I have an appt with my family doc today, if I he can't figure anything out,I I guess it's back to the hospital. I've been on bed rest and am taking oxycodone acetaminophen and the pain is still pretty intense, any suggestions would be appreciated.....I'm drinking lots of water.....I've lost my appetite but am eating things like jello.....even that's hard to get down.

Barnacle · Senior Member

Marypetrecz wrote:
I see that your first viral load was on May 1st.......so how did it come out? My first one is june 14th. Thanks barnacle. I don't know how to explore these threads.....I'm a dinosaur....lol

Yes thanks for reminding me I better update my sig line. UND at week 4 just had my second VL taken today

I'll keep you posted..

Marypetrecz · Senior Member

I see that your first viral load was on May 1st.......so how did it come out? My first one is june 14th. Thanks barnacle. I don't know how to explore these threads.....I'm a dinosaur....lol

Marypetrecz · Senior Member

Thank you barnacle. I am sorry you hd the pains....but am glad to know I'm not alone with this. I'm also glad to hear it I went away.......hoping mine does too...

Marypetrecz · Senior Member

Thanks isiscat. I was so worried about being taken off the drugs that I wited to long to complain....I should of gone earlier.

I don't have a fever, my lungs are great....this is kinda a mystery....but I am resting, outside of this pain, I feel fantastic,,,,clear head, toms of energy, sleeping well,,,,,

o well, this is another week....and life goes on,.....hoping this pain completely goes away.

Isiscat2011 · Guru

Marypetrecz wrote:
I was so afraid they would tell me I had to go off the meds,,...but i was told that's the very last thing that would happen,....no one wants me off the meds. Whew....

I'm glad they reassured you about that. I don't think we will be seeing many tx discontinuations due to sx on the all oral combos due to their improved safety profile and shorter tx time.

On the Incivek combo there were protocols for discontinuation when side effects became too risky such as vision impairment, extreme rash, systemic and idiosyncratic adverse events. People were very frightened to go to their doctors fearing tx discontinuation but in most cases their dosages could be adjusted or they were able to take rescue drugs. Also, most patients were seen by additional specialists (dermatologists, ophthalmologists, etc.) before tx discontinuation occurred. Discontinuation isn't something doctors rushed into even back then.

Barnacle · Senior Member

I have also experienced small sharp pains under my right rib cage since starting treatment but I figures that was just from the drugs working and it is so much better than the bloated football under the ribs that nagged at me for years and wend away shortly after starting treatment

Marypetrecz · Senior Member

Thanks isiscat. I do feel better knowing everything is good. stupid that it's just inflammation.....and overdoing things....oh well, life is great and all this will pass.....and I'll be cured.......I was actually afraid to go, I was so afraid they would tell me I had to go off the meds,,...but i was told that's the very last thing that would happen,....no one wants me off the meds. Whew....

Isiscat2011 · Guru

That is good news, Marypetrecz. Hopefully, this gives you peace of mind and a way to reduce or eliminate the pain. Inflammation can cause terrible pain.

Marypetrecz · Senior Member

Ok, just got back from the hospital. The pain in my side was getting unbearable. They did every test know to man and I passed with flying colors....including normal liver functions,,,,,,normal liver functions.....i love saying that....

so it is believed that I had inflammation and was stressed and that is waht was causing the pains. I was told that even thought there aren't nerves in the liver, it is encased in a membrane like thing that is loaded with nerves....and can be very painful if there is inflammation. I had a terrible case of acid reflux and they think the inflammation is from that and the fact that I feel so good, I've been over doing things,

so bed rest for a few days....then a slower schedule and behaving.......ugh....who wants to behave when feeling great? I'm sleeping like a baby...better than I've slept in decades...

rest sucks.....

Marypetrecz · Senior Member

I just got a call from my doctor's assistant. She asked if I had this pain before I started the meds. I told her yes. She said she's heard that before form people and thinks it will subside as the meds keep working. If it doesn't to let her know, but it's better all ready. I do have an ache but it's very tolerable, I told her overall I feel great, my energy level is high and she was surprised and pleased. She said she expected it to go up but not this fast. I I was a very high energy person before this disease knocked me down. I told her my theory of having a war in my liver...and that I'm rooting for the good guys....she laughed and said yes, that's exactly what's happening,

she asked about other side effects.....I told her I'm sleeping better than I have in decades and the only other problem is the light sensitivity, my eyes get so tired on bright days.

we changed my appt until I have my 4 week blood work . We talked about the importance of staying on the meds for the full three months, she said that if I go off and relapse, my body may of built resistance to the meds and they might not work a second time,,,,,whew, that's scary huh?

So alls good......I'm a happy camper.

kurt · Member

I've found that wearing SPF shirts and hats helped greatly with me. It's the fishing clothing. I sweat severely when wearing heavy sunblock and it burns my eyes. I get the side pain on occasion even after 8 weeks on treatment. Best of luck, Kurt

Marypetrecz · Senior Member

Thanks tig56. I didn't know you couldn't "feel" your liver....so I guess it's surrounding,,..but it still hurts.....I will up my fluid and try to slow down my work load.....I will also increase my fiber. I do have those problems...but not to bad....I don't think I'll need explosives,,,,,lol

I was at a horse show yesterday To watch friends.......in the shade.....but still bright and it got really hot and humid,,,,,it wasn't good...I hit the air conditioning in the car and that settled me back to normal. I learned.....no more shows until I'm all clear,,,,,the sunblock makes my skin sweaty....the clothes....well...it was just too hot....

So, how long until the muscle cramping went away?

thanks again,,,,,

-- Edited by Marypetrecz on Tuesday 27th of May 2014 10:24:11 PM

-- Edited by Marypetrecz on Tuesday 27th of May 2014 10:38:59 PM

Tig · Admin

Hi Mary,

I didn't get the chance to welcome you to the forum, so welcome! I'm glad you're here. I've felt the same discomfort in the RUQ and thought my liver was hurting too. It's true that the liver doesn't have pain receptors, but it's hard to believe at times. The pain is generally muscular or transmitting from areas that do have pain receptors, like bones, other tissues, etc. I have to ask, as this was a big problem for me, are you having any problems with constipation or gas? There were a few times I felt like I was going to need plastic explosives to break things loose! I thought I was hydrating enough and what I thought was enough didn't quite cover my needs. 2-3 liters of water per day, along with a high fiber diet, kept things moving well and I noticed a big difference in the RUQ pain levels. The recommendations of applying heat are well founded and using moist heat can even add improvements to that.

Sounds like you're keeping the sfx at bay, at that seems to be a common statement from others on that excellent combination. After reading what you have on your plate, with the horses and other animal responsibilities, it's fortunate that fatigue isn't one of your problems! Just don't overdue, it's easy to try an do too much. Be very cautious with your sun exposure, even with proper coverage and SPF lotions, you can still just get too much exposure. Be very careful with your eyes and always wear proper UV eye protection and limit your time out during the mid day sun. I wish you continued good luck and hope to hear more good news as you progress with tx!

Tig

Marypetrecz · Senior Member

Ok so I'm not crazy.....sorry for anyone going thru this terrible disease,.....but this a comfort having all of yu here. This is a great forum and I love the casual conversations, I will try the bandage heating pad isiscat.....sounds like a good thing,

overall I feel great. Except for the liver ache......no itchy skin....I sleep really well,,,my energy level is fantastic.....and I feel sharp and friendly....not avoiding people...because I was tired......my eyes get tired from light.....so overall I am so thrilled.

i guess I have to temper my energy and not do so much. I live on a farm with 6 neglicted horses and ponies,,,,,,,I love grooming and training.....and everyday I muck and feed and turn out,,,,,and it's so nice to feel like I can do more.....I walked up a hill yesterday tht hurt me every time I walked up it,,,,.reallly steep nd reallly long,,,,and for the first time ever, it didn't hurt to wlk up....I was fine when I got to the top.....I guess we don't realize how much this disease affects us....

thnks again....great group!

Isiscat2011 · Guru

ET wrote:
Congratulations to the Pharmasset microbiologists and biochemists that developed Sovaldi It's been a life saver for so many.
___________________________________________________________________________________________________________
Exactly!

patiently_waiting · Senior Member

ET wrote:
Although the standard response from docs is that the liver has no sensory nerves or that you cannot feel your liver, is contrary to my own experience.

Yeah, I heard that one too. I have a hard time believing it since I felt like I was punched in the gut each time I got a liver biopsy. Not sure how that can be explained if there's no nerves there.

Isiscat2011 · Guru

Hi Mary: Just wanted to share some information about heating pads with you, because I know heat can really help with inflammation and muscular pain, which is probably what you are experiencing.

There are portable heating pads called "Thermacare" that you can buy at most drugstores. They come in various shapes and sizes. Most stay on via a gentle adhesive; there are also very large ones that be wrapped around your body. They stay warm for about 8 hours and come in handy if you don't want to spend all day lying down. Best regards.

ET · Member

Hi Mary,

I just finished a 12 wk regimen (sovaldi/olysio) after 40 plus years of hcv and decompensated cirrhosis (meld 12). I found that there is a wide range of differing experiences while taking the se DAAs. Those with low fibrosis seem not to experience many side affects, while those with high fibrosis/cirrhosis seem to experience more symptoms. The good news is that the HCV becomes cleared in the end. So hang in there!

Although the standard response from docs is that the liver has no sensory nerves or that you cannot feel your liver, is contrary to my own experience. I can feel not only pressure around it and its effects upon surrounding tissues, but also sharp pains inside, sensitivity to deep finger pressure, and other sensory input. Docs are well meaning, but rarely have direct experience. When our experiences contradict their previously held beliefs, they tend to dismiss it.I also have experienced sharp shooting pains from the liver area, but then again I had them even before treatment. My main discomfort has been excruciating muscle cramps (partially due to low albumin) and extremely heightened itching (possibly due to high bilirubin) and detoxification). The olysio definitely has photosensitivity effects, but you already know that.

Congratulations to the Pharmasset microbiologists and biochemists that developed Sovaldi It's been a life saver for so many.

Best success!

Don

Marypetrecz · Senior Member

I just talked to my doctors nurse. She said she's never had anyone ask about this....but something is going on With the meds the hep and my liver. She suggested Tylenol and a heating pad.......I think I should listen to my husband and relax with a heating pad when the war starts raging,,,,,lol.....I will lie down, relax with a heating pad and cheer on the miracle drugs,,,,,if it gets worse or more frequent, I'm supposed to call her again.

so am I totally weird or has anyone had this happen to them?

Marypetrecz · Senior Member

I started experiencing terrible side stickers in my liver.....they just about knock me to my knees....I get the extreme pain when I change positions ....when I stand and lie down or roll on my side.....I also have an ache in my liver and sometimes I find my self walking bent over from the ache.... I feel like I have a war going on in my liver......and the good Guys will win....I'm hoping this is just a battle and will go away When these wonderful drugs beat the bad hep c.

has anyone else had this issue? Will it go away? I have my first bloodwork tomorrow.....and a call in to my doctors nurse,,,,,,just wondering?.....

outside of this, I have no side effects.....I sleep well, I feel great...more alert, more energy. I do drink more water and stay inside avoiding the sun.....my eyes feel strained but I'm sure it's the light bothering,,,,,

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