Harvoni/Itching

[McGirl555]

Hi All.

Today will be my 3rd day of Harvoni. Believe me, I'm not complaining, but I'm wondering why the itch has gotten SO bad. It's day and night instead of mostly at night. Very intense. I have a script for Cholestyramine and taking Prilosec 6 hours before or Harvoni. Have not tried the Cholestyramine yet, I will today.

For those of you who had itching before treatment and increased itching while tx, did the itching stop and how long did it take?

I thought it was bad prior to Harvoni. I had no idea it could reach this level and this is just the third day.

Thanks.

[hepc4Sandi]

Hopefully you are not allergic to the Harvoni. If you google allergic to Harvoni you will see that hives is a possible dangerous allergic needing immediate attention. Itching is not listed as a possible Sx. If you start having your tongue swell up, go to the er! Not trying to scare you, but you do need to contact your doctor asap, that is my opinion. If you were on Ribavirin, I would say try baby oil, or Gold Bond lotion. Let us know how it goes. ~~Sandi

[flyinlynn]

So sorry about the reaction you are having. Have you tried Aveno oatmeal bath. I have read that also helps itching.

About the Prilosec when I read the prescribing information sheet it says if you take Prilosec to take it at the same time as Harvoni. Taking Prilosec hours before Harvoni lowere your stomach acid levels. The  ledipasvir in Harvoni needs an acid environment to be able to dissolve and be absorbed. By taking Prilosec 6 hours before Harvoni you would be significantly lowering the ledipasvir in your system and thus the effectiveness of the medication.

So hoping you can continue treatment. Is it possible for you to take the new AbbVie medicine that may be a consideration if it is not counter indicated for you.

Good luck
Lynn

[flyinlynn]

Just pulled up the exact information regarding Harvoni and proton pump inhibitors like Prilosec:

"Proton-pump inhibitor doses comparable to omeprazole 20 mg or lower can be administered simultaneously with HARVONI under fasted conditions."

Just wanted to get this out there as it is so important about the issues with acid reducing meds and absorption of ledipasvir.

[McGirl555]

Thanks All.

I've tried everything in the last two years. Aveeno, Epsom Salts, oil in the bath, seriously everything. The first year, I would stay up all night Googling causes and treatments because I couldn't sleep.

The only thing that keeps me from itching is not eating. If I eat and don't take Prilosec or digestive enzymes, I will itch. Presently using Sarna and Gold Bond.

Sandi, it's not an anaphylaxis type of reaction. That is immediate and very scary. I bit into a Brazil nut two Christmases ago and that happened. Luckily, I spit it out. My brain felt like it was itching and my tongue and throat started to swell.

It's the generalized itching x 1000. No hives. The Harvoni could be stirring up the eczema. I'll call the doctor on Monday.

Thanks Flyinlynn. My insert says 4 hours before or after. It also says itching is a side effect. Lots of conflicting information. So, I think what you're saying is 20 mg or lower is okay if you are fasting?

A glass of wine with meals has always helped digestion, but I wouldn't dare touch it with Harvoni. I'm relying on Yogi Ginger Tea.

[McGirl555]

Me again. Lynn, what was your source on "Proton-pump inhibitor?" I'd like to find it and gather up all the information I can so that I can make a decision with my doctor based on facts. What you've quoted makes sense to me.

I'll try to get through to a Gilead nurse, call my doctor and a pharmacist and an old anesthesiologist friend and gather all information I can.

If I can control the itching, I can get through 12 weeks.

I think, even though the Gilead drugs have been around for a while, they are still in the infant stage and that's why there is so much conflicting information.

Flyinlinn, have you ever thought of a career in research ;-).

[flyinlynn]

The four hour before or after applies only to antacids like tums or Rolaids etc not Prilosec. Prilosec is not an antacid it is a proton pump inhibitor called Omeprazole.

My doctor advised me if at all possible to not take Prilosec so if I can't sleep due to heartburn I take a Tums which by then is 9 hours after I took Harvoni. I have a hiatal hernia and GERD so believe me I miss Prilosec.

Here is the link to the full prescribing information sheet see table 3 sheet 5 about tums, famotidine and Prilosec

http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

Also copy pasted here

Antacids (e.g., aluminum and magnesium hydroxide)

It is recommended to separate antacid and HARVONI administration by 4 hours.

H2-receptor antagonistsc (e.g., famotidine)

H2-receptor antagonists may be administered simultaneously with or 12 hours apart from HARVONI at a dose that does not exceed doses comparable to famotidine 40 mg twice daily.

Proton-pump inhibitorsc (e.g., omeprazole)

Proton-pump inhibitor doses comparable to omeprazole 20 mg or lower can be administered simultaneously with HARVONI under fasted conditions.

[flyinlynn]

More on Prilosec

http://www.pdrhealth.com/drugs/prilosec

Excerpt:
Home » Drugs A - Z » Prilosec

Prilosec
Generic Name: Omeprazole

What is this medication and its most common uses?

Prilosec is a medicine known as a proton pump inhibitor (PPI) that is used to treat stomach and duodenal ulcers (ulcers in the upper intestine), heartburn and symptoms associated with gastroesophageal reflux disease (GERD) and to treat and maintain healing of erosive esophagitis (inflammation and ulceration of the esophagus [the tube that connects your mouth and stomach]).

[flyinlynn]

So basically you can take Prilosec on an empty stomach at the same time as Harvoni that is the only way to take Prilosec. I am guessing here but I think am empty stomach is no food for 4 hours maybe take both together when you wake up and then don't eat right away?

That is why I am not taking Prilosec I have failed so mant treatments I don't want to risk it and will live with the heartburn.

Hope you feel better soon
Best wishes
Lynn

[Rbeth]

Hi,

So many things cause eczema, which I'm sure you know; auto immune, digestive disorders, some Tx's or meds in general, HCL over or under production, Traditional Chinese Med (TCM) reports too much "heat" & etc...

Just curious, have you been drinking Yogi Ginger tea for awhile and/ or upped it w/ harvoni for gastric issues? I ask because ginger, while an amazing herb(root) can be too "hot" for liver conditions, causing pruritus & can > or < HCL. Also wonder if you might have IgE response allergy to ginger( prob not) or IgG/IgA sensitivity.?esp IgG which, if sensitiv, can cause gastro & profuse itching.  I just recently had a comp panel done by Genova Labs & surprisingly ginger, garlic, asparagus :(, fennel,peppermint & chocolate :'( sniff., lol,  were high IgG for me so it occurred to me is this even a possibility for you when I read your post?!?

Blessings~ Randy

[Stronglady14]

My Dr. told me not to take Prilosec cause you don't have enough stomach juices the let the med work. They told me I can take Pepcid with no problems. He said to get the 10mg and take every 12hrs. HE said I can even take same time as the med. I was undetected at 7 wks. My last pill will be Jan, 24th. I don't think I would've reached svr if I didn't take the Pepcid.

[McGirl555]

Hi Everyone. So much great information here. Thanks.

Well, I called and spoke to a nurse at Gilead and then I called the pharmacy where the HARVONI came from and spoke to a pharmacist. Both told me the same thing that the Gilead literature says: Take HARVONI at the same time you take the Prilosec. This is supported in the link that flyinlynn provided.

My P.A. is on vacation, but she returned a message through her M.A.: Prilosec is not for itching (I know that), take Benadryl and if you have to take Prilosec, take it 8 hours apart from HARVONI. This is in direct opposition to the literature. I've taken Benadryl, hydroxyzine, you name it. I don't think she's looking at the gut/itch thing. She's not a gastroenterologist, but she helped me get the HARVONI and I love her for that.

Rbeth. Thanks for that information and YES, I noticed I had one tea bag left this morning. I have leaky gut along with an ulcer and who knows what. I'm cash pay at this point and won't be able to really go into all the digestive stuff until I have insurance.

Garlic (and I miss it) kills me, however, for a person with a healthy digestive system, it's supposed to be great stuff even though it comes from the deadly nightshade family. There are opposing views on garlic.

I lived in Italy for many, many years, until 2007. I ate a Mediterranean diet for years. So fresh you had to shop every day. When you go to buy produce and the lady takes you to her garden to pick it, well...not a bad thing.

I know that certain wines with certain foods really aid digestion. Italians drink tons of wine, but not to get drunk. An older gentleman saw me drinking ice water with a meal at a restaurant and he said "your heart will explode if you keep doing that. Drink cool, sparkling water only after the meal. Always wine with the meal." Since I've never been healthier than when I lived there, I tend to believe him. My heart has never exploded though. They also eat salad at the end of a meal, not before.

I really never thought about the heat of some roots. I put beet root in a green drink and it burned and had a peppery flavor.

So, my last resort is going online to one of those ask a gastroenterologist sites. Still trying to figure this out. I'm not discounting what doctors say, however, I've had to be my own health advocate for so long.

Stronglady14, that gives me some hope. I will definitely look into Pepcid. From what I've read, not a lot, it is not contraindicated.

I sometimes wonder if Gilead has instructed doctors to tell patients to stay from any type of acid reducer or proton inhibitor just to be sure.

Thanks again for all the information. Stronglady14, knowing that you took Pepcid and reached SVR is great. Just knowing that you reached SVR is fabulous!

I have to make this work.

[flyinlynn]

Just to add Stronglady14 was taking Pepcid exactly as the prescribing information sheet recommends

Pepcid is in the class of meds called H2-receptor antagonists the generic name is famotidine.

H2-receptor antagonists may be administered simultaneously with or 12 hours apart from HARVONI at a dose that does not exceed doses comparable to famotidine 40 mg twice daily.

Best of luck to all

[flyinlynn]

Hi Stronglady14

I had the same idea for a while and I just want to clairify the meaning of SVR.

SVR is a sustained viral response at some specific time after you take your last dose. So SVR12 is 12 weeks after you have completed treatment not while on treatment. On treatment is only undetected.

With the old interferon treatments they would refer to RVR or rapid viral response meaning the virus had cleared rapidly while in treatment for example RVR 4. That was something they would look for when trying to determine if the patient was likely to be successful on treatment with interferon based meds.

[McGirl555]

Hi Flyinlynn,

Interesting. The whole thing about "with" and "12 hours apart from." I take Prilosec exactly as prescribed. I just don't get the huge discrepancy in directions. I guess there are no patent answers. Searching.

Definitely looking into Pepcid.

Thanks, Lynn.

[flyinlynn]

Yeah my thought on the Prilosec is from the sheet from Gilead. Take prilosec with harvoni on an empty stomach.

Or Pepcid with harvoni and 12 hours later if you are taking two doses of Pepcid a day. If only taking one Pepcid take either at same time with harvoni or 12 hours later which is 12 hours before next dose.

And for antacids like tums or rolaids no closer to harvoni than 4 hours. Either a minimum of 4 hours before you take Harvoni or a minumum wait time of 4 hours after having taken harvoni.

That is what I am getting from the prescribing information sheet from Gilead as approved by the FDA.

[Diane1186]

What is your bilirubin levels?  If high, could be causing the itching.  Ask your doc if you can take benadryl to see if that helps.  Keep your skin well moisturizer and drink lost of water.

[McGirl555]

Hi Diane. No, bilirubin is not high. No jaundice or pale stools, etc. I sincerely think it has much to do with gut issues. If I can make it through the first week or so, I think things will settle down. Have set a date and going for it. What do I have to lose?

Happy New Year, Dragonslayers.

[cakes8267]

McGirl55, are you continuing with the Harvoni?   Your post about your job and the horrible itching sounds unbearable.  I hope you find something to relieve the itching and can finish the treatment.  
cakes

[Dee1956]

Hey there, have you tried the Atarax?  It is a prescription that many of us had to take while on Incivek.  I remember have these itch attacks that were so bad I would jump around the house for hours.  It was awful, even worse for my husband as he wanted to help me but couldn't.

In desperation I would freeze wet wash clothes and place them on places that were itching.  Of course that only works if you have an itch in one place or another.

I hope you can find relief soon.  It was an awful side effect of the Incivek, at least for me

[McGirl555]

Hey there, Slayers.

Hope you are all doing well, and "everyday in everyway getting better and better.

Re-starting HARVONI Wednesday night. I pray, and whomever you pray or intend to, please send one up for me. I'm armed with a host of anti-histamines, etc. There is a definite connection to mastocytosis, histamine intolerance, and HARVONI.

Has anyone noticed that when you call Gilead they are now doing a survey of sides?

Wishing you all NO SIDES and SVR.

[Rbeth]

Hi!

Funny you should mention Gilead surveying SFX.... Haven't spoken to them for two+ weeks ( they were only reiterating med print out) then, but my specialty pharma has asked me & also asked me to compile list for them.... yes Virginia, Harvoni does have sides- some weird & some predicted & some no sides at all & some easily missed but attributable to Harvoni. Cake walk compared to older, I'm sure!!! But, hey, it's killing this tenacious virus, gotta be a little powerful, huh?

I pray, and will definitely pray that you treat with ease :-) onward!!!!!!!
Blessings,
Randy

[McGirl555]

Hi All and thanks Randy. Well, this will be the 4th day of Harvoni. I prepared this time. Still itching, but controlling it with Atarax, Benadryl.

My doctor suggested taking Harvoni at night with Atarax and basically sleeping through it. I took the first dose at 2 PM while a friend was staying with me and now working toward night dosing. So, not too bad.

For those of us with HI or mastocytosis, itching will definitely be a major side effect for most. However, it's worth it.

I know that the main cause of itching is the HI and mastocytosis and I'm sure some liver itch, even though bilirubin is normal. I noticed my stomach burned when I drank Tazo Passion tea last night. So, lots of gut issues. Taking Pepcid, no Prilosec.

Question for those who had "liver itch" or itching from gastro problems. Did successful treatment eliminate the itching? I really don't know if I would have developed the gut issues without HepC. I do know HepC is not helping anything.

So onward and upward. Best to all.