Aa
A
A
A
Close
Hepatitis C Community
13.4k Members
Avatar universal

Just curious why Im non responder?

Am I the only non responder after 8 weeks taking Olysio/sovaldi on this list? I know there are some who have cleared then relapsed. The only things I took while tx was vitamin D, and a multi. I have GERD and a touch of Barretts esophagus and take an occasional nexium. I also take a teaspoon of psyllium a day(3-4 hrs away from the meds) for regularity.Drank lots and lots of water. And lastly a few Activias now and then. Anyone spot a problem with this little protocol? Does age play a part?. Im 68. Weight 165 lbs. When they tell you theres a 90 plus success rate and you fail it makes a person feel like maybe they did something wrong .Blood test at 2 weeks was very close but no cigar.I was breezing through tx too. Most of my numbers normalized. WBC's went back up. alt/ast normalized.
.I cant drink coffee because of the acid. green tea the same. So I cant inhibit replication in that manner.  I am fairly healthy, strong heart, good cholesterol, no high blood pressure or any other issues. Family history is good. Please, any suggestions for next time(God willing there is one) Thanks to the person(Poooh8 I think) who sent kind words and a link. Very helpful! Lifted my spirits and gave some hope.
Thanks Bob
29 Responses
475555 tn?1469304339
Very sorry to hear that S+O didn't cure you.

I think we are all very interested in experiences like yours, so can you tell me, please, exactly what you mean by non-responder? What was your viral load at 8 weeks, and how big a drop was it, if any, from your pre-Tx VL? Or was it that the virus was detectable at 8 weeks so your MD decided that you should stop treatment?

You'll have another shot, and a better one, with the soon-to-be-approved S+L.

Mike
683231 tn?1467323017
Hi
I released after 12 weeks but those of us who are the most difficult to treat the primary reasons are GT 1a and cirrhosis. I searched for answers as to what I could have done "wrong" but I believe there was nothing either of us could have done differently we just have the tough bugs. Also for people with hep c GT1a with cirrhosis the stat was more like 86% but the group size was 8 patients so not entirely surprising the stats don't have the same results in a larger population. I think I remember some thing like a 10% point drop from clinical trials to the general patient population is not uncommon.

Don't beat yourself up better things are coming soon
Lynn
Avatar universal
Doesn't it say on the instructions that come with your meds that you should not take a multi with this medicine? Yes it does. And it is not suited for Nexium or Prilosec. Check the print out that came with your prescription. IT says definitely no milk thistle.
475555 tn?1469304339
Can you point me to where it says not to take multivitamins on therapy?

Thanks.
683231 tn?1467323017
Hi Keeping on

Where are you seeing Nexium and Prilosec? I could not find that info and I am sure many of us need that information. The only thing I saw about vitimins was to discuss with your doctor do you have a reference for that as well?

I have not personally seen ref to either multi vitimins or anything about Nexium, Prilosec. I did see no St Johns Wort for both Sovaldi and Olysio and no Milk thistle but that was only listed for Olysio.

And anyway the OP did not say he took milk thistle just a multi vitimin and occasional Nexium along with some fiber and activia yogurt which has probiotics that some say are also good for the liver.

And at this point doesn't help saltavar to tell him to read the instructions. I still don't see anything he did that could have effected his treatment except maybe next go around check with his doctor about the vitimins and Nexium.

Although I personally abstained from my multi of course the best course would always to check with your doctor as the instructions recommend.

On the site for Olysio the list is long but I did not see multi vitimins or Prilosec just the milk thistle.

I did find this at site for Sovaldi

https://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/sovaldi/sovaldi_patient_pi.pdf

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Other medicines may affect how SOVALDI works.
Especially tell your healthcare provider if you take any of the following medicines:
 carbamazepine (Carbatrol®, Epitol®, Equetro®, Tegretol®)
 oxcarbazepine (Trileptal®, Oxtellar XRTM)
 phenytoin (Dilantin®, Phenytek®)
 phenobarbital (Luminal®)
 rifabutin (Mycobutin®)
 rifampin (Rifadin®, Rifamate®, Rifater®, Rimactane®)
 rifapentine (Priftin®)
 St. John’s wort (Hypericum perforatum) or a product that contains St. John’s wort
 tipranavir (Aptivus®)

All my best to all
Lynn
683231 tn?1467323017
Ok answered my own question about vitamins at drugs.com but still haven't found Nexium

http://www.drugs.com/cdi/olysio.html

Many prescription and nonprescription medicines (eg, used for anxiety, asthma or other lung or breathing problems, blood thinning, cancer, depression or other mental or mood problems, erectile dysfunction, high blood pressure, high cholesterol, HIV, immune system suppression, infections, inflammation, irregular heartbeat or other heart problems, nausea and vomiting, PAH, seizures, sleep, stomach or bowel problems), multivitamin products, and herbal or dietary supplements because they may interact with Olysio. Ask your doctor or pharmacist if you are unsure if any of your medicines may interact with Olysio.
Avatar universal
Drugs that are potent intestinal P-gp inducers (e.g., rifampin, St. John’s wort) may alter the concentrations of Sofosbuvir (Sovaldi).

Co-administration of OLYSIO with drugs that are moderate or strong inducers or inhibitors of CYP3A may significantly affect the plasma concentrations of simeprevir. The potential for drug-drug interactions must be considered prior to and during treatment.

Here's a link to List of some Inducers and Inhibitors.
https://liferaftgroup.org/long-list-of-inhibitors-and-inducers-of-cyp3a4-and-cyp2d6/

Omeprazole (Prilosec) is a P-gp inhibitor.

Esomeprazole (Nexium) inhibits gastric acid secretion. Therefore, esomeprazole may interfere with the absorption of drugs where gastric pH is an important determinant of bioavailability.
683231 tn?1467323017
My only question then, is as so many people take nexium or Prilosec why not just say nexium or Prilosec. The listed the specific names of many others.
And as you said P-gp inducers but then you said omeprazole is a P-gp inhibitor so as I read that it is not the same thing.

Yes as nexium inhibits gastric acid secretion I could see why one would think that but I don't see where they have said no to and in fact I did see on the drugs.com site it did say no drug interaction for omepresol and Olysio.

1747881 tn?1546175878
here are the lists severe and moderate by brand names,  their not on it

http://www.drugs.com/drug-interactions/simeprevir,olysio-index.html?filter=3&generic_only=

http://www.drugs.com/drug-interactions/simeprevir,olysio-index.html?filter=2&generic_only=
Avatar universal

check the directions that came with your prescription.
683231 tn?1467323017
Here are the links to the pdf's for the prescribing info for both Sovaldi and Olysio the inserts that were in the prescription

https://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/sovaldi/sovaldi_patient_pi.pdf

http://www.olysio.com/shared/product/olysio/prescribing-information.pdf
Avatar universal
I'm not a doctor but in my research I found that taking those types of pills are reactive to the treatment. I was looking for me because I am supposed to take omaprezole for varices. Are they called NAID's? I am not taking them. I'm taking anything but the treatment medicine. Nada nothing.
We just can't be sure of reactions to other pills so I'm not taking any chances.

I was also thinking that perhaps drinking too much water could flush the system of the needed tx medicine. That wouldn't be good. Daily sipping is better especially in the first weeks of tx I found.
But if I lay off salt I'm not needing any omaprezole. Never-the-less they may be the culprit in not clearing the virus. Is it a beta blocker?

Read directions. It may be on the directions that comes with the tx scripts. I can't remember where I saw it.

In the end it could all be weight based and a thread for a poll would be good. Do women cure more often than men etc.

As for the sun issue with the tx S/O... it's the HEAT and not so much the sun. Besides, sensitivity went away at week 3 or 4 for me. It was the first week I had to be careful is all. The first week was an adjustment taking the pills and the parasites were fighting for their life this time. I could feel it at week 3. They put up a fight just like I am putting up a fight.

I had a PCP nurse practitioner tell me just before tx to not take ANYTHING. Skip it all until treatment ends. They know more than a lot of docs.

I feel for those who haven't reached SVR. Don't give up.
Avatar universal
I'll recheck the directions for S/O when I can because I don't remember now.
The pharmacist did say the sun shouldn't bother me and it didn't. I can call the pharmacy and see what they say but don't count on a good answer with the one I got about the sun.......I did have to be careful of everything the first week.

Is everyone changing toothbrushes and razors weekly to not reinfect?
Avatar universal
nexium was not an issue neither was a multi. I  never said I took milk thistle! I took NO herbs or supplements either. I asked the pharmacist team member.
Avatar universal
The pharmacist told me to continue to take a multi AND because my D levels were a little low to take that as well. Again she said the nexium was NOT an issue.
Avatar universal
Did you take it the same time every day? What's your weight/gender  if you don't mind me asking? Did you clear and it came back? Or were you just not responsive to S/O? Sorry I can't remember much lately as I'm sure you mentioned some details prior.
Avatar universal
Whoops I see you are a non responder. It's a mystery.
683231 tn?1467323017
I would suggest you check the prescribing information for Olysio there is a specific warning against sun exposure. The instructions talk about when used with interferon and Ribavirin but it is the Olysio causing the sensitivity

The most common side effects reported in clinical study participants treated with Olysio in combination with peginterferon-alfa and ribavirin were rash (including photosensitivity), itching (pruritis) and nausea. Serious photosensitivity reactions resulting in hospitalization were reported. Patients will be advised to limit sun exposure and to use sun protective measures during treatment with Olysio in combination with peginterferon alfa and ribavirin.

Good luck
Lynn
683231 tn?1467323017
Oh yeah forgot to mention I am a female GT 1a three time null responder with  cirrhosis and I relapsed at 12 weeks post treatment.
317787 tn?1473358451
Hi, I am so sorry.  You did nothing wrong, you did everything you were supposed to do.  Please don't blame yourself.
I think we have a tendency to try to make sense of something that there is not sense to.
When I started Incivek 9/1/2011, there was nothing in the literature about meds I was taking.  Despite listing them to the specialty pharmacy, the doctor, the nurse I ended up have a reaction when I finished the Incivek.
I called Specialty Pharmacy and was told 3 of my meds were now contraindicated or problems had been reported.
When I asked my doctor about it, he was not aware of the reactions, later told me that they did not discover until after I started tx. If not for the Specialty pharmacy I really would have been in trouble.  They seem to have the latest information before the doctors do.

I just wanted to say how sorry I am.  I relapsed with my first tx and was so devastated, thought my life was over.  There was nothing else I could try.  That was why I was so desperate to start the Incivek asap.  In hindsight I guess I should have waited a few months so real time results could get out.

Take Care
Dee
Avatar universal
("And as you said P-gp inducers but then you said omeprazole is a P-gp inhibitor so as I read that it is not the same thing.")

Yes, omeprazole is a P-gp inhibitor and not the same as an inducer.  However, in the insert that comes with the Olysio it states both inducers and inhibitors can affect the bioavailability of the drug.
An inhibitor is not a factor when it comes to Sovaldi but possibly the Olysio.  

Anyway this will soon be a non issue because the newer meds are coming and hopefully the PPI's won't be a problem.   As it is, there is no proof that they are an issue now.  

I pray that the newer meds will be the answer for everyone,  It's human nature to try and figure out why relapse occurs but that is for the researchers to figure out.  The dragon is running out of time...you will reach SVR in the near future.
475555 tn?1469304339
FYI, I called both Gilead and Janssen patient assistance about drug interactions with those I am taking (Lorazapam, multivitamins, vitamin E, ALA, PPC, thistle), and they said to cut out all of them except the multivitamins and the Lorazapam, which are supposed to not cause problems (according to them).

But IMHO, probably safest to cut out everything while on Tx. Nobody really knows what the real-life drug-drug interactions are. There just aren't enough studies.
Avatar universal
As I said  the team pharmacist told me the nexium nor any ppi is an issue!

Neither is psyllium(away from the meds) 3-4 hours.
Avatar universal
You have already answered your own questions according to the data solvaldi has buried in their research. 1a with cirrhosis onset does drop the rate extremely. In fact if you read  the pages and pages.....the cure rates are being generated from the other subtypes. Yet type 1a and 1b make up most of the population in the USA. Something like about 70% have 1a or 1b.
Have an Answer?
Top Hepatitis Answerers
317787 tn?1473358451
DC
683231 tn?1467323017
Auburn, WA
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Answer a few simple questions about your Hep C treatment journey.

Those who qualify may receive up to $100 for their time.
Explore More In Our Hep C Learning Center
image description
Learn about this treatable virus.
image description
Getting tested for this viral infection.
image description
3 key steps to getting on treatment.
image description
4 steps to getting on therapy.
image description
What you need to know about Hep C drugs.
image description
How the drugs might affect you.
image description
These tips may up your chances of a cure.
Popular Resources
For people with Obsessive-Compulsive Disorder (OCD), the COVID-19 pandemic can be particularly challenging.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Here’s how your baby’s growing in your body each week.
These common ADD/ADHD myths could already be hurting your child
This article will tell you more about strength training at home, giving you some options that require little to no equipment.
In You Can Prevent a Stroke, Dr. Joshua Yamamoto and Dr. Kristin Thomas help us understand what we can do to prevent a stroke.