Hi everyone......Update, Volume 2

Step away from the guns, you guys!

So here's another example of the weirdness that makes it so hard to draw conclusions on cause & effect without a good set of reliable data:

I completed VX dosing Saunday last. There were times during the 12 weeks when the itch was torture, but any rash I had was extremely minor in comparison to what has been described in several thread recently. In fact, my rash looks and acts a lot like solar dermatitis, which I have had once before during a long ocean sail.

So, two days after stopping the VX, some strange things have happened:
- The rash has become more widespread and angry looking
- The itch in no longer controllable by the tricks that worked a week ago - Aveeno shower wash & moisturizer, etc.
- Sleep is a problem. The itching keeps me awake most of the night. Slathering on the Benadryl topical lotion calms it for a short time. Despite taking a combination of 20mg Ambien and two Benadryl tabs, I'm up and stalking the house all night. Maybe 45 minute snatches of sleep, then repeat. Not sleeping during the day either. I'm in the rubber room if this goes on much longer.

Regarding documented cases of acute rash in the VX study, all I can say is that there has not been a case in my study group. This info from the study coordinator. I'm with Jim on the dangers of drawing conclusions based on inconclusive data. Nothing personal, and not in any way to diminish the suffering we've all read about here. Its just not enough to implicate a specific cause IMHO.

[Kalio1]

Maybe you should see the doc right away in case it follows the same course as PDS and mremeet and keeps progressing.

[couldn't think of a nickname]

Are you finished all meds, or are you still on IFN and riba?

I hope you feel better soon.

[APKhaos]

K: I'm trying to bust down my dermo's door as we speak. I'll take anything he thinks will help.

C: 12 weeks of VX + SOC [180ug Peg & 1200 Riba/12 hrs], followed by 0, 12, or 24 weeks of SOC depending on which Arm of the trial you are in.

[couldn't think of a nickname]

yes, but I guess I was asking if you were still going to be dosed (are being dosed) SOC or if you were totally finished.
If you can't say, or don't feel comfortable, no problem, you don't have to.

[APKhaos]

Sorry, I was less than clear. I'm still on SOC, just don't yet know for how long.

Anyone in the 12 weeks VX+Peg+Riba then all stop will be unblinded around week 10. The other Arms are unblinded around week 20. We get the full VL lab results for the entire period when unblinded. Before then, nobody knows - not even the trial coordinators. All the VL labs are being monitored by a separate and independent lab / hepetologist.

[willows]

Well, the rash has not affected your good sense, my hat off to you for being so balanced in this random environment of testing, blind studies, etc.  I'm worshiping at your feet right now, because when one steps back, way back, and looks, we are just in the beginning of the arc of PI's and how they will affect the virus, so your advice is like a deep, calming breath.

My vote is that rash or not, PI's will kick the **** out of the virus.  Hope you get better soon and I never had a gun, but I did threaten the puter with the HUGE carving knife I was choppin carrots with.  Thanks for the calm.

Willow

[jmjm530]

Sorry about the skin problems and thanks for the balanced post.

Of course show it to your doctor, but have you seen a derm yet? My chest itched like craaazy later in tx and ten days on a mid-strength steroid (Cutivate) did the trick. I've also read with bad riba itching they give you a Kenalog shot or something like that. Don't suffer, see a derm right away if you haven't. You might also run this stuff by the derm, it helped sooth my itching a lot:
http://www.aaaskindoctor.com/balthertarba.html

A few other tips that helped me.

1) Substitute Cetaphil Gentle Cleanser for Soap -- face and body.
2) Shower luke warm, not hot or cold.
3) Wear loose cotton clothes, preferably white. If impractical try a white silk long john under garments.
4) Use a gentle laundry detergent with perfumes, etc and double-rinse.
5) Stop any non-prescribed OTC products you are currently using until you see the doctor, including moisturizers.  They often can make the situation worse rather than helping.
6) Try not to read too many more VX-950 skin reaction threads. I'm not on any of the treatment drugs and I'm starting to itch already :)

Be well. Feel better soon.

-- Jim

[jmjm530]

Not going to engage in tit for tat although your post has tempted me.

CTON and myself have offered our opinions, as you and others have offered theirs. Hopefully folks will make up their own minds without you categorizing both sides of the issue -- the intent of my posts -- or trying to characterize me or what I think about people here.

I don't have to remind you that I was one of the strongest advocates for you to see Dr. Jacobsen, when you were reluctant to. I have always viewed him as one of the top hep's in the country and still do.

However, I put two of my doctors on that same pedastal, and the fact they may not agree with Dr. J. on an issue you allude to -- alcohol maybe? -- does not mean I'm changing any of my opinions. No one is the "Final Word" on Hep C -- not your Dr. J, not any doctor.

Apparently, you have decided to make this personal. Be my guest, but this is my last post on this issue to you.

Be well,

-- Jim

[Morgaina]

What does SOC mean. I've been trying to figure it out but with no luck.
I've just had my first sun-burn like rash 3 mo. post tx!!

[couldn't think of a nickname]

SOC = standard of care, meaning IFN and riba, of course.

[Kalio1]

Standard Of Care = SOC



this thread is giving me a rash!

[mikesimon]

Someone asked "You mean Jm isn't the arbiter of correct information??"
On that issue I am not prepared to opine but as to who is the arbiter elegantiarum I'd like to throw my name into the hat.
Mike

[Upbeat]

Hum
    Strange on this vx-950 rash. Never a mention of it in the past trials. I wonder if it might be the combo of vx-950 and riba combined?

                                                        Ron

[Kalio1]

Maybe duration is the issue, previously the duration was 28 days and these guys are taking it much longer. Also the rash didn't appear for any of them until they had passed the 28 day mark.
Time will tell.

[NYgirl]

Also we never had any of the people In a trial on the forum to tell us about it - perhaps adding the riba combo did something to cause some sort of chemical reaction.  Don't know, nobody does but if it is a 10th of the population in the trial or so that can't be good.

Nobody knows and as the person above said time will tell.

But it sounds horrible and I'm very sorry that those brave enough to attempt the trials have had to go through it, whether it is the vertex or germs from the Man on the Moon.  It's never come up before and it doesn't sound like something I could personally have handled.

[FlGuy]

Maybe 'a man of weath AND taste'

[jmjm530]

Mike: But as to who is the arbiter elegantiarum I'd like to throw my name into the hat.
----------------------
Sometimes I think that's a very small hat around here :)

[mikesimon]

Assuming that VX-950 is the offending agent I still don't understand all the consternation. If, in fact, 2 of 29 dropped out due to skin problems that's unfortunate but I don't see it as remarkable. I would suspect that somewhere around 8% of the general population is sensitive/allergic to penicillin. Did anyone actually think that the PIs would be perfect. Some people presumably (for the sake of discussion) will be unable to tolerate VX-950 as some people are unable to tolerate combo therapy of Riba/Peg. But, for many it works and hopefully so too will VX-950. Mike

[NYgirl]

From what I read - I don't remember the others saying that their rash itched AT ALL and it was more like a bad sunburn.  The itching sounds like it is due to the Ribavirin more than anything.

So my question - is your hemo alright?  I've always wondered (note wondered) if the hemo/rash were in some way connected because at the times my rash was the WORST is also when my hemo was the lowest.

Did you try using something numbing like hydrocortizone lotion?  That even helped my kids with chicken pox so it might be a temporary relief for you.

I don't know if it makes any sense at all but is a question.

[couldn't think of a nickname]

Thanks, I was thinking originally you were finished, and that would have really seemed strange.

[jmjm530]

Mike: Assuming that VX-950 is the offending agent I still don't understand all the consternation. If, in fact, 2 of 29 dropped out due to skin problems that's unfortunate but I don't see it as remarkable.
---------------------------------
Mike,

Where the h*ll have you been all day long. LOL. I think you've summarized this *very* well -- at least what I've been trying to say all day. And as CTON says, why is it that the folks who object to preliminary 28-day viral eradication data seem all unglued by very preliminary side effect data? To the penecillin thing -- I believe allergic reactions to antibiotics are a very common admission to the ER.

Be well,

-- Jim

[NYgirl]

3 out of 4 on the board had to drop the vertex from tx it was so unbearable so I choose to look at THEM and agree with THEM and THEIR doctors that it is related.

It's not the same ribarash so I don't know why you can credit them with posting LEGITIMATE COMPLAINTS to their problems.  Why don't their opinions/feelings count? They would KNOW if this was little itchy bumps or not. You would NOT know that. They keep saying it is a completely different horrific problem more like a terrible sunburn look and it does not itch.

Excuse me for disagreeing with you 100% Jim but why don't you just let it go for now knowing that 90% of us think one way and you and CTON the other.

Just let it go and stop bringing it up.  We all know that NOTHING on Gods earth can ever change your mind - not even Dr. Jacobson who was once supposed to be the "final word" that we would "all go with" in that other disagreement. Funny you agreed to that UNTIL he said something contrary to YOUR opinion.

And yes I did read the other thread, in fact posted on it, but after reading things that didn't make any sense at all for so long I sort of blocked it out of my mind.

I think the others here DESERVE to be taken seriously and DESERVE to have their problem/complaint treated like adults, like they know what THEY are talking about and I just do NOT understand why you keep sayign they are wrong without really knowing.

Just let it go. Please.  Enough already.

Advice on how to cure the itch for APK is one thing but reposting yet another thread where you insist you are right and everybody else is an idiot because you know better is t.i.r.e.d.

Give them legitimacy on THEIR problems and what THEIR doctors have said whether you agree or not.

[couldn't think of a nickname]

Part of pds' post. It did itch.

"Just to be clear, YES it itched. I know a lot of us have been there with the itching so I'm not gonna go into a big long thing. Just suffice it to say that it itched inside my ears, nose, all cavities except mouth. It itched so much I would have given up my first born child for relief."

[couldn't think of a nickname]

That is so true. No one actually knows what the magic number is. It always requires some pioneers to push the envelope.
It is possible the triple combo could have been only 10 weeks and it would work, but odds I think are obviously higher the longer you treat, which you are by staying on soc.

[Kalio1]

You mean Jm isn't the arbiter of correct information??
Reading his posts you'd think he was.

He actually said the other day that he just comes on the forum to "correct misinformation"  <eyeroll>



I remember him promising to abide by Dr. J's POV on alcohol too.
Guess he changed his mind when Dr. J said no booze is best.

[mikesimon]

The taste I definitely have but the wealth - well that's subjective and some might say I'm wealthy and yet others might say I'm poor. What a puzzling world we live in! Now, I don't know if I'm rich or poor I but I do have taste because I ate some ricotta cheese purses with a pepper basil cream sauce for lunch and it was absolutely exquisite. Mike

[FlGuy]

I can almost see your pinkie elevated above the rest of your fingers from here!  I was about to reply to your inital comment in this thread that if you're not a practicing lawyer now you should consider mediation.

[jmjm530]

Mike: I ate some ricotta cheese purses with a pepper basil cream sauce for lunch and it was absolutely exquisite
----------------------------------------------
Not at all to minimize your health issues, but every once in a while someone posts to you like you've got one foot in the you know what. Sounds to me that while life may not be pefect, it still has its perks. I won't ask you what you washed the cheese purses down with :)

Be well,

-- Jim

[mikesimon]

I don't think I'd do very well as a mediator here but I sure do appreciate your vote of confidence. I feel confident that I could act as your advocate should the need ever arise so don't hesitate to ask. Mike

[mikesimon]

2 glasses of water and one glass of iced tea. I've got to get my enzymes to a nice place before I start with the wine. I figure by the end of the year. One glass 3 times a day 7 days a week - does that seem like too much? That is moderate, isn't it? Oh by the way, I've had one foot in the ground since 1995 but I just want to live too bad to die. I'm just like everyone else here. Mike

[mikesimon]

I don't know about you but I much prefer elegant crystal stemware. I'm a snob about that stuff. Mike

[couldn't think of a nickname]

Thank you, to you as well. I'm hanging in. I have been wondering how you have been doing. Chellski also, as I haven't seen her in here in a while, but I miss a lot of threads.

[prettydamscared]

Hi again, I'm trying to answer your question and pinpoint exactly when this "rash" started.  According to my medication diary, I believe it started approx. around day 36 of dosing, and by dosing I mean obviously peg, riba and vertex.  It started slowly and didn't become really problematic until approx. 10 days later.  I hope that helps somewhat.

Char

[couldn't think of a nickname]

Thanks,

I hope it can get/stay behind you. It is good that you have good notes, that is essential.

In spite of dropping it early, IIRC, you went undetectable quickly?

Hopefully that will carry through to SVR.

[prettydamscared]

Thanks for the well wishes.  You do recall correctly and I hope you're right.  I'm still on soc and I did take the vertex for 10 weeks so I'm hoping I've got a good shot for svr too.  Actually, as I discussed with study doc, there is no data to suggest at this point that 12 weeks is the "magic bullet." Our study will obviously help make those determinations.  It could turn out that 8 or 10 weeks is the recommended dosage period.  Anything is possible at this point and eventually we'll all be privy to this info.

Have a good night. Char

[couldn't think of a nickname]

We do take everyone seriously, and we do feel badly for them. We just want to see complete analysis. Again, note that Pds' rash did itch, you are posting it didn't.

[GoofyDad]

Hey Mike. I acquired taste on tx too. It was a metal taste, like tomato juice that had been left in an open can too long.

BTW, <a href="http://www.scotlandtoyou.com/products/ctw02.html">this is my pattern</a> in case you're rounding out your X-mas list. Actually, don't bother. I don't get to use them anymore (for better or worse).

[mikesimon]

Those are lovely. I know what you mean. When my tongue is not  embedded in my cheek I too find that I have no use for fine crystal stemware. But, the memory is a fond one. Mike

[can-do-man]

WOW, this is my fine crystal.

http://dixie.com/Portfolio/cups.asp

Hope your both doing ok.

[fishdoc]

Hey, I finally have my line laid (and no, it was not good for me)...and supposedly will have reliable internet...even got "gopher guard" line.....

how you doing,???? I know we're not as good as Dale Ray or Dyce,,, but we'll be right behind em...give or take 6 months!!!

[Kalio1]

Now that's my kind of crystal!

thanks for the yuks. you are hilarious.
Hope you are faring well and getting through ok.

[mikesimon]

Very nice indeed. And it's even nicer to see your name here. How have you been lately? Mike

[Forseegood]

thought you'd have something to say about all this crystal, he he he....

[GoofyDad]

Hey Can, nice to see you! Howzabout an update on your situation and how your doing? Since you're a fan of the dixie cup, <a href="http://www.thesneeze.com/mt-archives/000367.php">you might also be interested in these</a>. Though a 5 gal ice cream tub might work just as well.

Here's a <a href="http://news.bbc.co.uk/1/hi/entertainment/music/3849381.stm"> slightly more upscale vesion</a> for upityy stemware lovers, like our friend Mike.

Be well, can-man!