I think that you will find improvement after sovaldi/olysio. Before these new DAAs were approved once decompensated cirrhosis set in, the conventional wisdom of the time, believed that transplant was the only route for survival, especially since interferon increases liver dysfunction. But now much new data has arrived from decompensated cirrhotics who have been cleared of the HCV virus. The fibrosis/cirrhosis starts to clear and thus also the portal vein hypertension. I would imagine that such would be your situation, as you are highly motivated. See this link for the research.
Since we're talking here briefly about the possibility of cirrhosis regression, here's a post left by one of our members Matt, recently. If you use the search function on fibrosis regression, you'll find a lot of very good data.
Great information and good food for the hope. My appointment with my hepatologist is tomorrow and I intend to discuss this subject with him then.
Thanks Don, Isis, Tig and Matt!
Dzdayscomin said
Oct 6, 2014
Jeanno wrote:
I am thinking about this. I checked with pharmacy and they okay Benedryl for rash and itching. They recommended I call my specialist which I did and waiting to hear back. I have never had the "normal" response to medications and do not really take any. So, I just don't know. The only supplements I am taking now 'Vit c, Omega with, cal with D3, Alive multi vitiman and all of these at low dosages and I have been on them prior and the pharmacy gave me a pass on all of them.
When you said you had nothing in the way of side effects directly related to the meds are you talking about side effects you have that you had prior?
And is the pain medication masking the side effects?
Just curious. I did not have this upper quadrant pain prior even taking supplements and that is how I have treated for 8 years while waiting and kept liver enzymes normal and CAT scanned showed no cirrhosis. So, I am just trying to just trust and believe. My feisty trusted PAC will guide me in the right direction.
Take Care and Be Well
What I mean is I had joint and muscle pain prior to taking S/O for 12 weeks, and I still have those ....
I have a very seriously damaged liver for having the disease for 31+ yrs of which 28+ was unknown to me and i loved drinking beer !
I was referring to the supplements you write about in your blog ....from what I have been told by a pretty good care team, is about the only thing they recommend is a B12 vitamin
here is why
What happens if I don't get enough vitamin B12?
Vitamin B12 deficiency causes tiredness, weakness, constipation, loss of appetite, weight loss, and megaloblastic anemia. Nerve problems, such as numbness and tingling in the hands and feet, can also occur. Other symptoms of vitamin B12 deficiency include problems with balance, depression, confusion, dementia, poor memory, and soreness of the mouth or tongue. Vitamin B12 deficiency can damage the nervous system even in people who don't have anemia, so it is important to treat a deficiency as soon as possible.
Tig said
Oct 6, 2014
Hey Mike,
Since we're talking here briefly about the possibility of cirrhosis regression, here's a post left by one of our members Matt, recently. If you use the search function on fibrosis regression, you'll find a lot of very good data.
I would also recommend another anti histamine for your itching called Zyrtec (Certrizine). It worked far better for me than Benadryl and it also spares you the drowsiness often associated with Benadryl. If you're using the heated castor packs on your abdomen, be cautious. That heat is frequently enough to spur the development of the PI rash.
Tig
Isiscat2011 said
Oct 6, 2014
Hi Jeanno:
The rash and itching are well documented side effects of protease inhibitors. Olysio is a second generation protease inhibitor. During the Olysio FDA hearings the drug manufacturers submitted studies that showed the photosensitivity and skin problems tend to be worst during the first 30 days and dissipates thereafter for most people.
Ask doc for some topical hydrocortisone cream. Don't scratch! Cut your nails and wear cotton gloves to bed if need be. Obviously, if the rash is severe or covering a substantial percentage of your body, show it to your doc right away.
The liver area pain may just indicate lots of activity going on right now in that region. I wouldn't worry about moderate pain too much. If it is severe or lasts for more than a few days contact your doc.
I would nix the supplements while on tx and the fewer other oral meds you can get by with the better during tx. Why take the chance they could interfer with tx?
Good luck with your tx. :)
Isiscat2011 said
Oct 6, 2014
Hey Mike:
Did you see this?
ET wrote:
Turnsit,
I think that you will find improvement after sovaldi/olysio. Before these new DAAs were approved once decompensated cirrhosis set in, the conventional wisdom of the time, believed that transplant was the only route for survival, especially since interferon increases liver dysfunction. But now much new data has arrived from decompensated cirrhotics who have been cleared of the HCV virus. The fibrosis/cirrhosis starts to clear and thus also the portal vein hypertension. I would imagine that such would be your situation, as you are highly motivated. See this link for the research.
I had some side effects with S/O but most went away the last month of tx. The worst sfx I experienced was sore muscles and joints, and itchy, red eyes. There were days I had headaches that were pretty intense too. I found drinking three cups of coffee really helped for some reason?
The sore joints and the fact I stayed sore for a long time after exercising was the worst of it and I'm still dealing with that but I consider these meds a great option to the alternatives. Hopefully your body gets use to the meds quick. Oh, remember to drink plenty of water.
Good Luck
-Rob
Jeanno said
Oct 6, 2014
I am thinking about this. I checked with pharmacy and they okay Benedryl for rash and itching. They recommended I call my specialist which I did and waiting to hear back. I have never had the "normal" response to medications and do not really take any. So, I just don't know. The only supplements I am taking now 'Vit c, Omega with, cal with D3, Alive multi vitiman and all of these at low dosages and I have been on them prior and the pharmacy gave me a pass on all of them.
When you said you had nothing in the way of side effects directly related to the meds are you talking about side effects you have that you had prior?
And is the pain medication masking the side effects?
Just curious. I did not have this upper quadrant pain prior even taking supplements and that is how I have treated for 8 years while waiting and kept liver enzymes normal and CAT scanned showed no cirrhosis. So, I am just trying to just trust and believe. My feisty trusted PAC will guide me in the right direction.
Take Care and Be Well
Dzdayscomin said
Oct 6, 2014
May want to stop all the supplements before attributing it to your HCV cure medicines.
I didn't take anything but the 2 meds, my pain meds and a good healthy diet for the 12 weeks, and had nothing in the way of sx I'm able to directly attribute to the S/O combo.
The one thing would be maybe joint pain, but I had that before tx too.
Jeanno said
Oct 6, 2014
I am very glad I found this thread. I am day 7 into sol/olysio treatment. At first I thought it was going to be a walk in the park. I can handle it all, but I have developed the awful itching and swelling and pain in upper right quadrant. So, not exactly a walk in the park, but this thread answered so many questions. I am going call pharmacy just to confirm it's okay for me to take benedryl and I have been putting castor oil packs with heat on my liver and this seems to help.
Pressing on and being optimistic even tho I just don't feel like I am here. I thought I was feeling better but it truly is ups and downs. Some days I got it, some days I don't. LOL
Here's to a totally healthy tomorrow.
Turnsit said
May 22, 2014
Hi,
thank you for this info, my doctor suggested the idea too that if I clear, they may be able to take care of me without a transplant. I would believe if that happens that miracles fell on me like stars! I would love that! I could have a dog again and I might be able to foster care a child on the island who's mother does not want her, interferes with her drug addictions! I would be beyond thrilled! Thanks for sharing...
ET said
May 22, 2014
Turnsit,
I think that you will find improvement after sovaldi/olysio. Before these new DAAs were approved once decompensated cirrhosis set in, the conventional wisdom of the time, believed that transplant was the only route for survival, especially since interferon increases liver dysfunction. But now much new data has arrived from decompensated cirrhotics who have been cleared of the HCV virus. The fibrosis/cirrhosis starts to clear and thus also the portal vein hypertension. I would imagine that such would be your situation, as you are highly motivated. See this link for the research.
On solvali and olysio. Just began week 2. I did pegayis and interforn riba in 2004 for a year but no success. I was to ill for another tx until this one came out. I am 1 a or b, can't recall right now. I am 62, contracted this in 1971 did not find out till 2003. I live alone and love it, I hoop dance on the beach for 2 and 4 hours when off tx and cycle hours plus I swim alone in the Pacific here in the surf mecca of the world. No, I am not a person who experiences much fear in life, it has to be on top of me or it does not register, it gets in my way of living. I love cycling at night. I do not fear the next bleed out if there is ever one, we live, we die but of course I want to live. I am female, I find people can be trusted. I live like that, sure there are insane people out in the world, I could be put in the trunk of a car, I know this but still I am the only female out here in the country and woods along the Pacific that is cycling, the others are men. Our female cyclists live on the other shores not the north one, they have bike lines, I must ride the shoulder and the road but I cycle well so the traffic sees I respect their space and only need a little. As you can hear my focus in life is day to day living not the virus, not dying from it. I just lived thru major projectile vomiting of blood, two transfusions at two different hospitals in 24 hours plus an endoscopy that was just torture afterwards, have another coming up Tuesday, hoping for the best. I think you need an 8 for the transplant list and I am an 11 or was before the bleed out. This is an island, there are not many transplants here. I do not feel mental and physical stress unless I am not cycling or hoop dancing. I stay busy all the time doing something. I am a very happy person. I do not have physical drawbacks from endurance exercise, I have them without it. I have twice healed myself of ascites, just did it again, my doc never wanted a needle draw nor did I. I keep a very sane diet, 400 mg of sodium, organic foods, two ounces only of chicken or wild pacific salmon and a bit of organic beef. Thats my story. I thought I did a little bio but maybe not, wanted to post an image on it but just do not see how yet and I am fairly tech savvy. Try not to worry about my cycling at night, I worked 2 decades in a darkroom as a photographer and teacher and yes I see well in almost no light, thats why. Lived alone in nyc for a decade so I am just not fearful of being out at night. I just do not want to be hit or be on a downhill hill fly at 35 miles an hour but I keep flying anyway down hill, I just focus and believe in my ability, lots of chance in life for anything and everything. if a person is a fearful cyclist it should be given up, fear is the enemy for a cyclist. Nice chatting to people in the same boat. I am thrilled with the new treatments, we will see people healed especially the youth! Just fabulous. Honest,y, i can not tell I am on TX drugs at all! Riba was a nightmare!
-- Edited by Turnsit on Thursday 22nd of May 2014 11:07:05 PM
Tig said
May 22, 2014
Hi Turnsit,
I'm glad the cycling helps you with the discomfort. I'm sure a lot of the relief comes from the endorphin surge the extreme cycling produces. Are you decompensated? Do you know what your MELD scores are? You mentioned having had a recent problem with varicial bleeding. Are you concerned with your extreme night cycling, that you could experience another ruptured vessel? I would be cautious, especially doing it by yourself, at night. You can lose a lot of volume, quite quickly from ruptured varacies. I'm glad you're able to continue with such an aggressive training program, just keep the potential drawbacks from such a physical demand on your circulatory system. Hopefully you've got a good control over the portal hypertension. I wish you continued good luck. By the way, I haven't read what type of treatment regimen you're currently on. Are you on treatment or have you tried in the past? If you can share that history with us, it helps us when replying to your posts. Most of us will add a short bio in our signature line so it's always available with each post left. I look forward to talking more about this in the future! Good luck...
Tig
Turnsit said
May 22, 2014
Yay happy for you!
aloha
Turnsit said
May 22, 2014
My numbers are almost low enough to be put on transplant list, i have never been plagued with the itching, I believe it is because I am a cyclist. I am pumping blood and oxygen thru my cirrhosis...if I do not cycle, I feel really ill, depressed, exhausted, weak, lethargic is the state of my liver Without endurance exercise. Got in 2 hours of cycling on the ocean hwy. in pitch black last night. One day at a time!
-- Edited by Turnsit on Thursday 22nd of May 2014 07:42:17 PM
ET said
May 22, 2014
All good info. The list of *possible* side effects of Olysio and Sovaldi are long, but not severe. Much depends upon the degree of fibrosis, and/or whether the cirrhosis is compensated or decompensated. Many of us are going into treatment with elevated bilirubin levels and the resulting itching even before start of Tx. No doubt there are other factors. Olysio is known to temporarily elevate the bilirubin in many cases; but post tx it goes back down. Patients taking simeprevir (olysio) may experience transient and increases in serum bilirubin levels that are typically mild in severity and not associated with elevated hepatic aminotransferase levels. I have only 3 days more on this 12 week treatment, but the itching is still severe; but I started Tx with moderate itching. Still UND at week 10. Yay!
Barnacle said
May 20, 2014
I took bendryl for itching and sleeping problems and cortisone cream for the riba rash. Now I sleep like a baby and hardly itch at all since the TX has seemed to given my liver a big break. So many of the hep c related issues have gone away or reduced at only 2/3rds through Tx
Turnsit said
May 19, 2014
I use Tiger Balm, its campor, it really helps but yes it can keep me awake some nights especially if I don't cycle. Good luck.
Turnsit said
May 19, 2014
I have this and I believe its from too much protein plus I also feel it is due to difficulty elimimating. I also have a lot of cirrhosis and it is likely to be connevted to that, extreme exercise makes it disappear, I cycle 7 ir 15 miles at night in the country alone and afterwards its gone which I believe is related to the fact that I have pumped oxygen and blood so hard that I've caused my liver to breathe and circulate blood. Works every time for me. That is also the site of the gall bladder and certainly my disease is progressed enough to cause it to hurt. There is only so much I can do, I have had this for 41 years, much is just tolerated at this point. I would love to kill this virus finally. I have bad portal hypertension and varacies in my esogphaus from it, ai just had a major gusher of a bleed out a month ago, I live alone too, age 62, hang in there, we can live a long time yet.
Hackdad7725 said
May 19, 2014
Hi Everyone
I get my viral load test results tomorrow, so I'm sure with the insomnia I'm suffering from, my anxiety level will keep me up waiting for the phone call from my Dr. tomorrow ! The only side effect that I have beside the insomnia has been a pretty constant right side pain under my rib cage. My last two ultrasounds over the past 6 months said everything was normal. Does anyone else have this problem, it gets worse throughout the day. I'm still so excited to rid myself of this demon !! Day 33 Sovaldi/Olysio, with normal liver function tests for the first time in 13 years !!!
Best Wishes to All !!!
Mark
ET said
May 19, 2014
Thanks folks. These shares and tips do help, and even moreso when I am feeling down. The NAC and Lipoic Acid didn't really help much this time around.; but I'm game for the zinc oxide. 6 more days and I will complete the 12 week Olysio/Sovaldi tx. I can barely wait.
Turnsit said
May 19, 2014
Bless you too! I have had it 41 years. I was even an alcoholic my entire life then diagnosed in 2002 and went on tx and have never drank again, I get everything I need from endurance exercise...
NMgal said
May 19, 2014
Sounds familiar. I got HCV, 1b, in 1983 from transf. Did riba/interfron in 2004. stopped at 3 months. You will be a great role model! Thanks so much for the encouragement! Bless your heart.
Turnsit said
May 19, 2014
Yes this is why i moved here for endurance exercise all year round, it has saved my mind, spirit and body. I am on Solvaldi and Olysio. I take Solvaldi mornings then Olysio nights. Thank you. Best wishes...aloha
jimbob said
May 19, 2014
Turnsit--
Thank you for posting your experience with zinc oxide, I'm sure it can help a number of people.
I am happy to hear you are doing so well on treatment. What meds are you taking?
Living in Hawaii can't hurt....
jimbob
Turnsit said
May 19, 2014
Good god luck! You will hike again. I have had this for 41 years. I so hope to at least be virus free, tried riba and interferon, ypthis is a piece of cake for me and what a surprise, riba was a nightmare. My scores are almost low enough for a transplant list. I had a massive bleed out a month ago from bleeding varices. Be brave and strong!
NMgal said
May 19, 2014
I just got my last (3rd) refill and have 2 more days to complete 8 weeks. My 4 wk labs were Virus undetectable and liver #s normal range. My side effects have been insomnia, headaches, itching, lots of fatigue, nausea in a.m. after taking meds. Promethazine fixes the nausea anytime. I'm using my Xanax RX nightly at bedtime and no problem sleeping now. Dr said to use Tylenol ES for headaches. FYI, I have symptoms of a sinus infection, but using natural cures for that. I'm waiting out the fatigue, but miss hiking with friends. When finished with tx, is a full detox cleanse OK? Anyone tried? Herbal and organic, naturally. Thanks for all the support and helpful information!
Turnsit said
May 19, 2014
Am fine. Just wanted to let folks know about zinc, am cycling 15 miles on shore hwy. n hawaii and its great fun, feeling fantastic!
jimbob said
May 19, 2014
Hi Turnsit and welcome to the forum. You may want to go to the "New Members " area and introduce yourself. Im sure you will get many more replies there.
jimbob
Turnsit said
May 19, 2014
I am using zinc oxide topically for any place that even starts to itch, stops it within one minute. I can't even tell I am on treatment, I am cycling 15 miles some nights along the shore highway and it is no problem. I am 62 and have had this since 1971, hoping to kill it, interferon riba did not work for me.
Turnsit said
May 19, 2014
I was having that itching problem, zinc oxide has stopped it, if I begin to itch, I apply some immediately, works like a charm for me...
ET said
May 17, 2014
Omnamahshivaya
Thanks. Since my liver isn't doing 100% and with the increase of chemical residues due to the new meds, you reminded me about resuuming NAC, N-acetyl cysteine (an antioxidant and glutathione precursor that protects against A beta neurotoxicity. I just began with the addition of Alpha Lipoic Acid, and so far the itching has been reduced. Regarding both. The Physicians Desk Reference reports no known contraindications and no reports of overdosage; however it is always wise to check with your physician. I was playing safe previously (no supplements), but now I feel that I must do something. There are other herbs that act as detoxifiers and I suspect that toxic residues are interfeing with muscle, skin, and/or neural function; albeit I have a very sick liver.
A general question for everyone who has finished the regimen, are there specific symptomatic reliefs besides the psychological effect of knowing that you have obtained UND SVR?
ET said
May 16, 2014
It's good to hear that I am not alone on this ride. Thanks for the info. I will try the OTC benedryl, certizine, calamine, and/or caladryl. Previously, hot showers were the only relief, but I will try the opposite. Yes, I have to stay out of the sun, as I immediately become brown and then red. Also the skin seems to be much more sensitive to heat than before the treatment.
The muscle spasms are less when I reduce the diuretics (taking minimum 10 mg lasix and 25 mg spironlactone/day).
I will report back.
Be well
Omnamahshivaya said
May 16, 2014
I'm on Solvaldi/Olysio too (over two weeks now) and I'm relieved that the meds are working but YES...
I cry often for no apparent reason. Feel more emotional. And even with an occasional ambient, I wake up every hour. And then I'm exhausted all day.
I've had itchy skin a bit, but have been avoiding the 100 degree heat wave with umbrellas, hats, glasses.
I told my doctor I've been crying a lot but he didn't say anything. It probably is a side effect - maybe part of the cleansing process.
Our bodies, even if the side effects are mild compared to what people had to endure before with Interferon, are still being
detoxified of a toxin (Hep C) with a toxin (medicine). I'm sure after the virus and meds are long out of our system, we'll all feel balanced and aligned again... not to mention relieved and ecstatic!!!!!!!!!!!
OMJ
Tig said
May 16, 2014
Hi Don,
Welcome to the forum! Sorry to hear about your problems with itching. I was hoping that we could get away from such trouble when Ribavirin was removed from the equation. Seems Olysio is also proving to be a problem for some. I have to ask, are you avoiding too much exposure to sunlight? It is well documented to cause sun sensitivity, so avoid it like the plague and cover up and use appropriate SPF sun blocking lotions if you must go out. The typical OTC treatments for itching might help. My first bit of advice is to not scratch. That alone will make it worse. Oral antihistamines like Benadryl or Zyrtec (Certrizine) will be beneficial too. I would also try calamine or caladryl lotion. A zinc or oatmeal based lotion might also provide some relief. Avoid taking hot showers and limit shower taking to every other or every two days. Water can aggravate an already aggravated rash. With that said, are you hydrating properly? Be sure you're getting enough fluids. You mentioned being on diuretics. If true, you need to be certain you're replacing fluids adequately.
3 more weeks and all of this will be a memory! Keep up the fight, you've almost got this one in the bag. Do keep in touch and let us know how you progress and if you need any more ideas for your itching. We're here to help! Good luck....
Tig
Groupergetter said
May 16, 2014
Hi Don, welcome to the forum. You and I have the same start date on the Sovaldi/Olysio. 10 days but who's counting? I'm ready for blast off.
I have some itching and rash on my left arm but it may be caused by auto-immune issues. Early on I had headaches and insomnia and still do occasionally. I have noticed some improvement in the muscular problems in my legs. (Drink lots of water) My vl was 16 at day 25. Most of my other labs are normal. My platelet count is in the normal range but hoping it may further increase. Now if my fatigue and brain fog will only get better. Hoping we all reach SVR, and a more healthy and wholesome life. Be well.
ET said
May 16, 2014
Hi. I am happy to see the success rates being reported. I started Sovaldi/Olysio on March 3, 2014 and have 10 days left to complete my 12 week regimen. Labs showed consistent VL UND at 4 weeks to present. I am very happy with that; however the bilirubin is still very high (3.2 total) etc, etc. My problem is that the severe itching (like small glass shards) is becoming almost intolerable. It is constant on my upper back and sides and abdomen, but often appears on arms, legs, etc. When it is at its worse, iI also experience a sharp prickly pain that seems to occur from inside the abdomen. I just need to get through these next ten days, hopefully. Any suggestions?
Also the Olysio and the diruretics appear to be making my muscle cramps even more severe. Any suggestions? I can handle the crying bouts and overwhelming fatigue; but the cramps and itching have been ... pretty rough. Thanks.
Don
GT1B -- Cirrhosis - HCV for 45 years --
patiently_waiting said
May 13, 2014
Tig56 wrote:
Hey PW,
Just wanted to thank you for the AASLD link. I hadn't seen that one before and it's an excellent bit of information! I've amassed quite a library of HCV bookmarks and this will fit into the library nicely! Now all I have to figure out is a system for instant recall. That's going to be the fun part!
Tig
You're quite welcome, Tig, although I think it was more of a reminder than a new link for you. I'm pretty sure you posted this a while back in the news section. You share so much information with us you just forgot about this one. :)
Tig said
May 13, 2014
Hey PW,
Just wanted to thank you for the AASLD link. I hadn't seen that one before and it's an excellent bit of information! I've amassed quite a library of HCV bookmarks and this will fit into the library nicely! Now all I have to figure out is a system for instant recall. That's going to be the fun part!
Tig
patiently_waiting said
May 13, 2014
xainwu wrote:
I thought Sovaldi/Olysio was off-label (not FDA approved). How are you able to get it?
Hi Xainwu,
Just to add to what Peter already told you which is spot on, the Sovaldi/Olysio combo is the current AASLD recommendation for some patients. Those who are treatment naive or are relapsers and who are intolerant to interferon are one example of patients for whom this combo is recommended. Their guidelines are posted here. Ability to wait for other meds coming soon is also a consideration as Peter mentioned.
Peter M said
May 13, 2014
Hi Xainwu,
Off label drugs can be prescribed and paid for by insurance if it can be demonstrated that there is a medical necessity that can only be met by that particular drug (or in this case, drug combo). For Sovaldi and Olysio the medical necessity usually involves advanced liver disease and interferon intolerance. It isn't easy to get approval, but as you can see on this board, there are people who have successfully been prescribed this combo. I'm on Medicare and because of my cirrhosis (advanced liver disease) and history of severe depression (interferon intolerance) I was able to get it.
Because of the cost and the hassle, most doctors are waiting for the Gillead One pill Sovaldi and Ledipasvir coming (hopefully) at the end of this year. That combo also has a high cure rate and minimal side effects. There will hopefully be less cost also, especially if some of the other company's drugs are approved at the same time.
-- Edited by Peter M on Tuesday 13th of May 2014 06:50:45 PM
-- Edited by Peter M on Tuesday 13th of May 2014 08:42:05 PM
xainwu said
May 13, 2014
I thought Sovaldi/Olysio was off-label (not FDA approved). How are you able to get it?
Peter M said
Apr 23, 2014
Hi All,
I'm on day 12 of S/O. So far minimal sx..just some dry skin that is helped with coconut oil after my morning shower. I take a LOT of melatonin (21mg) and 500 mg of 5htp and I sleep very well. I have had cirrhosis about ten years and think I have had the virus about 45 years or so. I'm scared I won't clear but am 1b and the COSMOS phase II final results are encouraging.
You can read more at my blog http://hepcstories.wordpress.com where I talk about what supplements I have taken and post at least every other day about how my treatment is going.
I have medicare Part D and thanks to my pharmacist and a foundation I have no copay. I just hope they continue paying thotughout the entire twelve weeks!
-Peter
Gracie said
Apr 22, 2014
Barnacle... I took Reactine extra strength. Worked better than Benedryl and never made me sleepy. Try that one.
Tig said
Apr 22, 2014
If Benadryl fails you, try Zyrtec (Certrizine). Thats what my specialty pharmacy sent me for the Riba itching. Certrizine is the generic name and can be purchased OTC at any store or pharmacy. It works without the drowsiness too.
Tig
Barnacle said
Apr 22, 2014
Benedryl has worked for me in the past I asked the doc for something stronger but found myself tripping over everything in the morning. Back to Benedryl I guess. There are no visual signs of rash just this nagging itch. Been depressed too but lots of changes in my life not helping that.
Can't complain, treatment could be a lot worse.
Caryn said
Apr 22, 2014
So these are the side effects that I have been experiencing lately. I would appreciate if anyone else on S/O/R could let me know if they are experiencing any of this or if I have just come down with something. It is so hard to tell! I have of course not been sleeping well, wake up with headaches, feeling nauseous, and I feel like I am just ill. My body has been achy and I feel hot, but I took my temp this morning and do not have a fever. I feel hot inside. Anyone else experiencing this? Also, I am feeling a little depressed. That could be a result of feeling like crap and not getting any sleep. I am ready to just blame the meds for all of this, but we do have to be careful in case there is an underlying illness like a sinus infection or something like that.
Caryn said
Apr 22, 2014
Barnacle wrote:
Good morning everyone. It's been a long itchy night
-- Edited by Barnacle on Tuesday 22nd of April 2014 01:56:04 PM
Are you taking anything for this? I know benedryl was approved by the specialty pharmacy nurse. She specifically said "use benedryl if you have problems with itching." Check with your doc of course. I have had a small amount of itching due to small bumps, I guess its a riba rash. It is not out of control, but definitely there. I just want to sleep and sleep and sleep!!!
Barnacle said
Apr 22, 2014
Good morning everyone. It's been a long itchy night
-- Edited by Barnacle on Tuesday 22nd of April 2014 01:56:04 PM
Caryn said
Apr 21, 2014
No trouble going to sleep, but impossible to nap and sleep past 5 Am. Today it was 4. I never feel refreshed and always tired.
Great information and good food for the hope. My appointment with my hepatologist is tomorrow and I intend to discuss this subject with him then.
Thanks Don, Isis, Tig and Matt!
What I mean is I had joint and muscle pain prior to taking S/O for 12 weeks, and I still have those ....
I have a very seriously damaged liver for having the disease for 31+ yrs of which 28+ was unknown to me and i loved drinking beer !
I was referring to the supplements you write about in your blog ....from what I have been told by a pretty good care team, is about the only thing they recommend is a B12 vitamin
here is why
What happens if I don't get enough vitamin B12?
Vitamin B12 deficiency causes tiredness, weakness, constipation, loss of appetite, weight loss, and megaloblastic anemia. Nerve problems, such as numbness and tingling in the hands and feet, can also occur. Other symptoms of vitamin B12 deficiency include problems with balance, depression, confusion, dementia, poor memory, and soreness of the mouth or tongue. Vitamin B12 deficiency can damage the nervous system even in people who don't have anemia, so it is important to treat a deficiency as soon as possible.
Hey Mike,
Since we're talking here briefly about the possibility of cirrhosis regression, here's a post left by one of our members Matt, recently. If you use the search function on fibrosis regression, you'll find a lot of very good data.
Hi Jeanno:
The rash and itching are well documented side effects of protease inhibitors. Olysio is a second generation protease inhibitor. During the Olysio FDA hearings the drug manufacturers submitted studies that showed the photosensitivity and skin problems tend to be worst during the first 30 days and dissipates thereafter for most people.
Ask doc for some topical hydrocortisone cream. Don't scratch! Cut your nails and wear cotton gloves to bed if need be. Obviously, if the rash is severe or covering a substantial percentage of your body, show it to your doc right away.
The liver area pain may just indicate lots of activity going on right now in that region. I wouldn't worry about moderate pain too much. If it is severe or lasts for more than a few days contact your doc.
I would nix the supplements while on tx and the fewer other oral meds you can get by with the better during tx. Why take the chance they could interfer with tx?
Good luck with your tx. :)
Jeanno,
I had some side effects with S/O but most went away the last month of tx. The worst sfx I experienced was sore muscles and joints, and itchy, red eyes. There were days I had headaches that were pretty intense too. I found drinking three cups of coffee really helped for some reason?
The sore joints and the fact I stayed sore for a long time after exercising was the worst of it and I'm still dealing with that but I consider these meds a great option to the alternatives. Hopefully your body gets use to the meds quick. Oh, remember to drink plenty of water.
Good Luck
-Rob
I am thinking about this. I checked with pharmacy and they okay Benedryl for rash and itching. They recommended I call my specialist which I did and waiting to hear back. I have never had the "normal" response to medications and do not really take any. So, I just don't know. The only supplements I am taking now 'Vit c, Omega with, cal with D3, Alive multi vitiman and all of these at low dosages and I have been on them prior and the pharmacy gave me a pass on all of them.
When you said you had nothing in the way of side effects directly related to the meds are you talking about side effects you have that you had prior?
And is the pain medication masking the side effects?
Just curious. I did not have this upper quadrant pain prior even taking supplements and that is how I have treated for 8 years while waiting and kept liver enzymes normal and CAT scanned showed no cirrhosis. So, I am just trying to just trust and believe. My feisty trusted PAC will guide me in the right direction.
Take Care and Be Well
May want to stop all the supplements before attributing it to your HCV cure medicines.
I didn't take anything but the 2 meds, my pain meds and a good healthy diet for the 12 weeks, and had nothing in the way of sx I'm able to directly attribute to the S/O combo.
The one thing would be maybe joint pain, but I had that before tx too.
Pressing on and being optimistic even tho I just don't feel like I am here. I thought I was feeling better but it truly is ups and downs. Some days I got it, some days I don't. LOL
Here's to a totally healthy tomorrow.
Hi,
thank you for this info, my doctor suggested the idea too that if I clear, they may be able to take care of me without a transplant. I would believe if that happens that miracles fell on me like stars! I would love that! I could have a dog again and I might be able to foster care a child on the island who's mother does not want her, interferes with her drug addictions! I would be beyond thrilled! Thanks for sharing...
Turnsit,
I think that you will find improvement after sovaldi/olysio. Before these new DAAs were approved once decompensated cirrhosis set in, the conventional wisdom of the time, believed that transplant was the only route for survival, especially since interferon increases liver dysfunction. But now much new data has arrived from decompensated cirrhotics who have been cleared of the HCV virus. The fibrosis/cirrhosis starts to clear and thus also the portal vein hypertension. I would imagine that such would be your situation, as you are highly motivated. See this link for the research.
http://www.natap.org/2013/HBV/062313_01.htm
Best success!
Don
On solvali and olysio. Just began week 2. I did pegayis and interforn riba in 2004 for a year but no success. I was to ill for another tx until this one came out. I am 1 a or b, can't recall right now. I am 62, contracted this in 1971 did not find out till 2003. I live alone and love it, I hoop dance on the beach for 2 and 4 hours when off tx and cycle hours plus I swim alone in the Pacific here in the surf mecca of the world. No, I am not a person who experiences much fear in life, it has to be on top of me or it does not register, it gets in my way of living. I love cycling at night. I do not fear the next bleed out if there is ever one, we live, we die but of course I want to live. I am female, I find people can be trusted. I live like that, sure there are insane people out in the world, I could be put in the trunk of a car, I know this but still I am the only female out here in the country and woods along the Pacific that is cycling, the others are men. Our female cyclists live on the other shores not the north one, they have bike lines, I must ride the shoulder and the road but I cycle well so the traffic sees I respect their space and only need a little. As you can hear my focus in life is day to day living not the virus, not dying from it. I just lived thru major projectile vomiting of blood, two transfusions at two different hospitals in 24 hours plus an endoscopy that was just torture afterwards, have another coming up Tuesday, hoping for the best. I think you need an 8 for the transplant list and I am an 11 or was before the bleed out. This is an island, there are not many transplants here. I do not feel mental and physical stress unless I am not cycling or hoop dancing. I stay busy all the time doing something. I am a very happy person. I do not have physical drawbacks from endurance exercise, I have them without it. I have twice healed myself of ascites, just did it again, my doc never wanted a needle draw nor did I. I keep a very sane diet, 400 mg of sodium, organic foods, two ounces only of chicken or wild pacific salmon and a bit of organic beef. Thats my story. I thought I did a little bio but maybe not, wanted to post an image on it but just do not see how yet and I am fairly tech savvy. Try not to worry about my cycling at night, I worked 2 decades in a darkroom as a photographer and teacher and yes I see well in almost no light, thats why. Lived alone in nyc for a decade so I am just not fearful of being out at night. I just do not want to be hit or be on a downhill hill fly at 35 miles an hour but I keep flying anyway down hill, I just focus and believe in my ability, lots of chance in life for anything and everything. if a person is a fearful cyclist it should be given up, fear is the enemy for a cyclist. Nice chatting to people in the same boat. I am thrilled with the new treatments, we will see people healed especially the youth! Just fabulous. Honest,y, i can not tell I am on TX drugs at all! Riba was a nightmare!
-- Edited by Turnsit on Thursday 22nd of May 2014 11:07:05 PM
Hi Turnsit,
I'm glad the cycling helps you with the discomfort. I'm sure a lot of the relief comes from the endorphin surge the extreme cycling produces. Are you decompensated? Do you know what your MELD scores are? You mentioned having had a recent problem with varicial bleeding. Are you concerned with your extreme night cycling, that you could experience another ruptured vessel? I would be cautious, especially doing it by yourself, at night. You can lose a lot of volume, quite quickly from ruptured varacies. I'm glad you're able to continue with such an aggressive training program, just keep the potential drawbacks from such a physical demand on your circulatory system. Hopefully you've got a good control over the portal hypertension. I wish you continued good luck. By the way, I haven't read what type of treatment regimen you're currently on. Are you on treatment or have you tried in the past? If you can share that history with us, it helps us when replying to your posts. Most of us will add a short bio in our signature line so it's always available with each post left. I look forward to talking more about this in the future! Good luck...
Tig
Yay happy for you!
aloha
My numbers are almost low enough to be put on transplant list, i have never been plagued with the itching, I believe it is because I am a cyclist. I am pumping blood and oxygen thru my cirrhosis...if I do not cycle, I feel really ill, depressed, exhausted, weak, lethargic is the state of my liver Without endurance exercise. Got in 2 hours of cycling on the ocean hwy. in pitch black last night. One day at a time!
-- Edited by Turnsit on Thursday 22nd of May 2014 07:42:17 PM
All good info. The list of *possible* side effects of Olysio and Sovaldi are long, but not severe. Much depends upon the degree of fibrosis, and/or whether the cirrhosis is compensated or decompensated. Many of us are going into treatment with elevated bilirubin levels and the resulting itching even before start of Tx. No doubt there are other factors. Olysio is known to temporarily elevate the bilirubin in many cases; but post tx it goes back down. Patients taking simeprevir (olysio) may experience transient and increases in serum bilirubin levels that are typically mild in severity and not associated with elevated hepatic aminotransferase levels. I have only 3 days more on this 12 week treatment, but the itching is still severe; but I started Tx with moderate itching. Still UND at week 10. Yay!
I use Tiger Balm, its campor, it really helps but yes it can keep me awake some nights especially if I don't cycle. Good luck.
I have this and I believe its from too much protein plus I also feel it is due to difficulty elimimating. I also have a lot of cirrhosis and it is likely to be connevted to that, extreme exercise makes it disappear, I cycle 7 ir 15 miles at night in the country alone and afterwards its gone which I believe is related to the fact that I have pumped oxygen and blood so hard that I've caused my liver to breathe and circulate blood. Works every time for me. That is also the site of the gall bladder and certainly my disease is progressed enough to cause it to hurt. There is only so much I can do, I have had this for 41 years, much is just tolerated at this point. I would love to kill this virus finally. I have bad portal hypertension and varacies in my esogphaus from it, ai just had a major gusher of a bleed out a month ago, I live alone too, age 62, hang in there, we can live a long time yet.
Hi Everyone
I get my viral load test results tomorrow, so I'm sure with the insomnia I'm suffering from, my anxiety level will keep me up waiting for the phone call from my Dr. tomorrow ! The only side effect that I have beside the insomnia has been a pretty constant right side pain under my rib cage. My last two ultrasounds over the past 6 months said everything was normal. Does anyone else have this problem, it gets worse throughout the day. I'm still so excited to rid myself of this demon !! Day 33 Sovaldi/Olysio, with normal liver function tests for the first time in 13 years !!!
Best Wishes to All !!!
Mark
Thanks folks. These shares and tips do help, and even moreso when I am feeling down. The NAC and Lipoic Acid didn't really help much this time around.; but I'm game for the zinc oxide. 6 more days and I will complete the 12 week Olysio/Sovaldi tx. I can barely wait.
Bless you too! I have had it 41 years. I was even an alcoholic my entire life then diagnosed in 2002 and went on tx and have never drank again, I get everything I need from endurance exercise...
Yes this is why i moved here for endurance exercise all year round, it has saved my mind, spirit and body. I am on Solvaldi and Olysio. I take Solvaldi mornings then Olysio nights. Thank you. Best wishes...aloha
Thank you for posting your experience with zinc oxide, I'm sure it can help a number of people.
I am happy to hear you are doing so well on treatment. What meds are you taking?
Living in Hawaii can't hurt....
jimbob
Good god luck! You will hike again. I have had this for 41 years. I so hope to at least be virus free, tried riba and interferon, ypthis is a piece of cake for me and what a surprise, riba was a nightmare. My scores are almost low enough for a transplant list. I had a massive bleed out a month ago from bleeding varices. Be brave and strong!
Am fine. Just wanted to let folks know about zinc, am cycling 15 miles on shore hwy. n hawaii and its great fun, feeling fantastic!
jimbob
I am using zinc oxide topically for any place that even starts to itch, stops it within one minute. I can't even tell I am on treatment, I am cycling 15 miles some nights along the shore highway and it is no problem. I am 62 and have had this since 1971, hoping to kill it, interferon riba did not work for me.
I was having that itching problem, zinc oxide has stopped it, if I begin to itch, I apply some immediately, works like a charm for me...
Omnamahshivaya
Thanks. Since my liver isn't doing 100% and with the increase of chemical residues due to the new meds, you reminded me about resuuming NAC, N-acetyl cysteine (an antioxidant and glutathione precursor that protects against A beta neurotoxicity. I just began with the addition of Alpha Lipoic Acid, and so far the itching has been reduced. Regarding both. The Physicians Desk Reference reports no known contraindications and no reports of overdosage; however it is always wise to check with your physician. I was playing safe previously (no supplements), but now I feel that I must do something. There are other herbs that act as detoxifiers and I suspect that toxic residues are interfeing with muscle, skin, and/or neural function; albeit I have a very sick liver.
A general question for everyone who has finished the regimen, are there specific symptomatic reliefs besides the psychological effect of knowing that you have obtained UND SVR?
It's good to hear that I am not alone on this ride. Thanks for the info. I will try the OTC benedryl, certizine, calamine, and/or caladryl. Previously, hot showers were the only relief, but I will try the opposite. Yes, I have to stay out of the sun, as I immediately become brown and then red. Also the skin seems to be much more sensitive to heat than before the treatment.
The muscle spasms are less when I reduce the diuretics (taking minimum 10 mg lasix and 25 mg spironlactone/day).
I will report back.
Be well
I'm on Solvaldi/Olysio too (over two weeks now) and I'm relieved that the meds are working but YES...
I cry often for no apparent reason. Feel more emotional. And even with an occasional ambient, I wake up every hour. And then I'm exhausted all day.
I've had itchy skin a bit, but have been avoiding the 100 degree heat wave with umbrellas, hats, glasses.
I told my doctor I've been crying a lot but he didn't say anything. It probably is a side effect - maybe part of the cleansing process.
Our bodies, even if the side effects are mild compared to what people had to endure before with Interferon, are still being
detoxified of a toxin (Hep C) with a toxin (medicine). I'm sure after the virus and meds are long out of our system, we'll all feel balanced and aligned again... not to mention relieved and ecstatic!!!!!!!!!!!
OMJ
Hi Don,
Welcome to the forum! Sorry to hear about your problems with itching. I was hoping that we could get away from such trouble when Ribavirin was removed from the equation. Seems Olysio is also proving to be a problem for some. I have to ask, are you avoiding too much exposure to sunlight? It is well documented to cause sun sensitivity, so avoid it like the plague and cover up and use appropriate SPF sun blocking lotions if you must go out. The typical OTC treatments for itching might help. My first bit of advice is to not scratch. That alone will make it worse. Oral antihistamines like Benadryl or Zyrtec (Certrizine) will be beneficial too. I would also try calamine or caladryl lotion. A zinc or oatmeal based lotion might also provide some relief. Avoid taking hot showers and limit shower taking to every other or every two days. Water can aggravate an already aggravated rash. With that said, are you hydrating properly? Be sure you're getting enough fluids. You mentioned being on diuretics. If true, you need to be certain you're replacing fluids adequately.
3 more weeks and all of this will be a memory! Keep up the fight, you've almost got this one in the bag. Do keep in touch and let us know how you progress and if you need any more ideas for your itching. We're here to help! Good luck....
Tig
Hi Don, welcome to the forum. You and I have the same start date on the Sovaldi/Olysio. 10 days but who's counting?
I'm ready for blast off.
I have some itching and rash on my left arm but it may be caused by auto-immune issues. Early on I had headaches and insomnia and still do occasionally. I have noticed some improvement in the muscular problems in my legs. (Drink lots of water) My vl was 16 at day 25. Most of my other labs are normal. My platelet count is in the normal range but hoping it may further increase. Now if my fatigue and brain fog will only get better.
Hoping we all reach SVR, and a more healthy and wholesome life. Be well.
Hi. I am happy to see the success rates being reported. I started Sovaldi/Olysio on March 3, 2014 and have 10 days left to complete my 12 week regimen. Labs showed consistent VL UND at 4 weeks to present. I am very happy with that; however the bilirubin is still very high (3.2 total) etc, etc. My problem is that the severe itching (like small glass shards) is becoming almost intolerable. It is constant on my upper back and sides and abdomen, but often appears on arms, legs, etc. When it is at its worse, iI also experience a sharp prickly pain that seems to occur from inside the abdomen. I just need to get through these next ten days, hopefully. Any suggestions?
Also the Olysio and the diruretics appear to be making my muscle cramps even more severe. Any suggestions? I can handle the crying bouts and overwhelming fatigue; but the cramps and itching have been ... pretty rough. Thanks.
Don
GT1B -- Cirrhosis - HCV for 45 years --
You're quite welcome, Tig, although I think it was more of a reminder than a new link for you. I'm pretty sure you posted this a while back in the news section. You share so much information with us you just forgot about this one. :)
Hey PW,
Just wanted to thank you for the AASLD link. I hadn't seen that one before and it's an excellent bit of information! I've amassed quite a library of HCV bookmarks and this will fit into the library nicely! Now all I have to figure out is a system for instant recall. That's going to be the fun part!
Tig
Hi Xainwu,
Just to add to what Peter already told you which is spot on, the Sovaldi/Olysio combo is the current AASLD recommendation for some patients. Those who are treatment naive or are relapsers and who are intolerant to interferon are one example of patients for whom this combo is recommended. Their guidelines are posted here. Ability to wait for other meds coming soon is also a consideration as Peter mentioned.
Hi Xainwu,
Off label drugs can be prescribed and paid for by insurance if it can be demonstrated that there is a medical necessity that can only be met by that particular drug (or in this case, drug combo). For Sovaldi and Olysio the medical necessity usually involves advanced liver disease and interferon intolerance. It isn't easy to get approval, but as you can see on this board, there are people who have successfully been prescribed this combo. I'm on Medicare and because of my cirrhosis (advanced liver disease) and history of severe depression (interferon intolerance) I was able to get it.
Because of the cost and the hassle, most doctors are waiting for the Gillead One pill Sovaldi and Ledipasvir coming (hopefully) at the end of this year. That combo also has a high cure rate and minimal side effects. There will hopefully be less cost also, especially if some of the other company's drugs are approved at the same time.
-- Edited by Peter M on Tuesday 13th of May 2014 06:50:45 PM
-- Edited by Peter M on Tuesday 13th of May 2014 08:42:05 PM
I thought Sovaldi/Olysio was off-label (not FDA approved). How are you able to get it?
Hi All,
I'm on day 12 of S/O. So far minimal sx..just some dry skin that is helped with coconut oil after my morning shower. I take a LOT of melatonin (21mg) and 500 mg of 5htp and I sleep very well. I have had cirrhosis about ten years and think I have had the virus about 45 years or so. I'm scared I won't clear but am 1b and the COSMOS phase II final results are encouraging.
You can read more at my blog http://hepcstories.wordpress.com where I talk about what supplements I have taken and post at least every other day about how my treatment is going.
I have medicare Part D and thanks to my pharmacist and a foundation I have no copay. I just hope they continue paying thotughout the entire twelve weeks!
-Peter
Barnacle... I took Reactine extra strength. Worked better than Benedryl and never made me sleepy. Try that one.
If Benadryl fails you, try Zyrtec (Certrizine). Thats what my specialty pharmacy sent me for the Riba itching. Certrizine is the generic name and can be purchased OTC at any store or pharmacy. It works without the drowsiness too.
Tig
Benedryl has worked for me in the past I asked the doc for something stronger but found myself tripping over everything in the morning. Back to Benedryl I guess. There are no visual signs of rash just this nagging itch. Been depressed too but lots of changes in my life not helping that.
Can't complain, treatment could be a lot worse.
So these are the side effects that I have been experiencing lately. I would appreciate if anyone else on S/O/R could let me know if they are experiencing any of this or if I have just come down with something. It is so hard to tell! I have of course not been sleeping well, wake up with headaches, feeling nauseous, and I feel like I am just ill. My body has been achy and I feel hot, but I took my temp this morning and do not have a fever. I feel hot inside. Anyone else experiencing this? Also, I am feeling a little depressed. That could be a result of feeling like crap and not getting any sleep. I am ready to just blame the meds for all of this, but we do have to be careful in case there is an underlying illness like a sinus infection or something like that.
Are you taking anything for this? I know benedryl was approved by the specialty pharmacy nurse. She specifically said "use benedryl if you have problems with itching." Check with your doc of course. I have had a small amount of itching due to small bumps, I guess its a riba rash. It is not out of control, but definitely there. I just want to sleep and sleep and sleep!!!
Good morning everyone. It's been a long itchy night
-- Edited by Barnacle on Tuesday 22nd of April 2014 01:56:04 PM
No trouble going to sleep, but impossible to nap and sleep past 5 Am. Today it was 4. I never feel refreshed and always tired.