Mike's Sovaldi + Olysio Treatment Log

This is day 5 of week 4. Almost 1/3 complete.

As you may have read, Mike's VL was <15 this past Monday...so he/we are quite optimistic.

He has seen essentially no sides to complain about, but...there seems to be something going on.

We are uncertain what specifically may be the problem and it started BEFORE treatment, but may be a combination of things.

He started having skin problems about 3 months ago. Several different kinds of skin problems.

He has odd blotches on his scalp. The make little scabs. It is red and quite ugly, but it is all under his hair and he is not losing any of the hair, so it is not unsightly. On his face or arms it would be hard. The doc gave him a liquid to drop on every day -- clobetesol.

He has a rash on his arms and legs that is different that the head thing. It is splotchy, not itchy. They gave him a cream that does nothing called Triamcinalone.

A different looking rash took over his groin and private parts and they have him mix the Triamcinalone with Econazole Nitrate, half and half. That seems less angry and has really pulled back from the top part of his leg. It isn't itchy either but is not splotchy...it is like a big bed of red.

Then he has a horrible rash on his rectum and large external hemeroids. The doc gave him anusol supositories and I guess anyone could get that. But the rash part would not go away and is sooo very painful. They gave him Desoximetasone. WE have to buy it retail as it isn't on his forumulary, but of all the creams and potions, it seems to be doing the best job.

And now he has a horrible sore on his bottom lip...like a fever blister but big and it doesnt settle down. They gave him acylovie ointment for that.

He is a walking dermotological pharmacy!

This is his achilles heel. We knew going in when you read the sides, that Mike was vulnerable to skin stuff. He has been hospitalized after TP with crazy reaction to Rapamune (since changed). He had mouth sores the size of tonsils.

He has many precancerous spots frozen every two months. He has had 2 Mohs surgeries for squamous cell carcinoma. He has had MANY basil cell spots! He had to use chemo cream around his hair line a year ago.

So, I am worried. We called the TP center today, have a dermo appointment next week.

He takes Myfortic for antirjectin which has skin stuff, and the treatment drugs.

Well...mostly he is fine.

Best,
Mama Lama

Labs tomorrow. Dermo on Tuesday. Hep on Thursday. Crazy week. Mike is still feeling great, though he is a walking dermatological mess. Will post when we have more information. Sending extra good thought for sustained viral response to all our fellow treatment buddies. Hugs, ML

Can someone tell me the name of the Olysio/Sovaldi Study that they are on? IS it all the same study, across the country? And what are they testing for - side effects or are they just doing a larger study because the previous one was very small?

Is anyone experiencing any side effect of this combo?

Also - it is kind of "funny" that they have been trying to add interferon or at least riboviran to the mix and it is making the results come out worse than with just these two. I think someones pocket book is effected and they have so much invested in those two awful drugs.

There are studies out there. But, as of early this year, they hve been prescribing Sovaldi with Ribavirin or Sovaldi with Olysio.

In Canada some of the patients are also taking Interferon I think, not totally sure.

Our insurance is approvig Sovaldi with Olysio for 1a non responders, with compensated liver disease and high fibrosis, who are considered interferon intolerant.

Mike is not on a trial, he has a regular prescription for this combo.

Some others here have other genotypes and different regimens.

@ Herbal Woman: as you are new, welcome. It would be good for you to start your own thread. Maybe Herbal Woman starting Sovaldi and Olysio May 5th. and then post how you are doing.

I popped all the treatment folks to the top this morning so that they were easy to find. Hope we find you here very soon.

Best,
Mama Lama

MamaLama, sorry to hear of some of the sides Mike has been having as they sound uncomfortable and I hope he gets some relief soon. You guys are almost 1/3rd done and already having positive results so lets hope the side effects subside and Mike can come out on top swinging.

Can't wait to hear the results from tomorrows check up. Actually, I think the ribavirin caused most of my rashes and sores. But then, the Hep C was gone by the time I finished taking ribavirin.

Day Day 32

Labs in from March 31st, week 4..and no April Fools...Viral Load < 15 UNDETECTED

His AST/ALT is 20/27. WOW. CBC number slightly low, but no lower than pre-treatment. Platelets in normal range for first time in YEARS.

Very happy happy dance at our house.

They are concerned about his many rashes. Head, torso, groin, rectum...all look a bit different! Dermo gave him 4 different potions I mentioned in an earlier post.

It started before treatment, so Doc thinks it isn't the Olysio.

New Theory: Last August, he had a liver biopsy. It showed some issues...which were unclear to them...was it damage from Hep C OR organ rejection? In response to that they added Cellcept 250 twice a day to his regimen. He is on prograf .5mg AM ad 1.0mg PM. Then, for a reason I can't recall, they increased that to 500mg twice some months ago. Then, when the rashes started they changed from Cellcept to Myfortic 100 mg twice a day. No improvement in rashes. No change in anything.

New regimen: With the Hep C undetected, he can't have more Hep C problems with liver. So, they are taking him off the Myfortic. If his LFTs go up, it will mean there is some rejection going on, and they'll have to go back to Cellcept or Myfortic. But for now, it is an experiment. Let's see if the rashes resolve.

He doesn't go back until late May to TP clinic. Woo Hoo.

Hugs to all in Dragon Slaying Land.

Carol and Mike too

Great News!! Here is to hoping everything stays normal and the rashes resolve.

Wow! And, Wow!! Isn't that the best feeling when you see that viral load at < 15 ? Next is SVR. It will come, and it was very emotional for us. Very. Mama...you deserve a medal. Mike is lucky to have ya! Big hugs

This is great news!

Hi MamaLama,

How is Mike doing? Have the rashes subsided? How's he doing being off the Myfortic?
So happy to read that treatment is going well for Mike! Absolutely amazing!!!

WD

That's absolutely amazing! Mike is a fighter and so are you! I enjoy reading stories like this :)

Happy Re-Birthday Mike!!





Kathy and Dennis
DDMom