Hi everyone, just wanted to give you all an update

Hello, I hope everyone is doing well.  FLguy you started, huh - the 13th?  You got all your ducks in a row before starting treatment but the big questions is, did you get your painting done?

My hubby does his last shot Sat. night.  I can barely believe it - it seems to have flown by....course not from his perspective.  All in all, he's lost some weight, some hair, definitely some time from work but, overall, he did well with the treatment.  Got some "riba-rash" of course, I think the standard old dry skin kind.  Never developed "riba rage", mood swings, depression and his reaction from shots were like clockwork.  He did them Sat pm and was exhausted and sick on Sunday, a little better on Monday and by Tuesday, he was feeling better. He was undedected at week 4 and hasn't had any viral breakthrough since last test in Sept.  He is a 2b with stage 1 liver damage.  He's been on Procrit since approx. the third month of tx.

Now, for me.  As of yesterday, my study doctor officially took me off of the vertex-950/placebo.  I made it to day 68 out of 85.  I gave it my very best shot but the rash made it impossible for me to continue.  

Just a brief update, you guys may remember, I came down with the "CONFLUENT" rash over 90% of my body, yada, yada... about 2 months ago.  I hobbled along with it, trying Gold Bond, oatmeal baths, etc. for a few weeks.  By the time, I actually went to my derm, she called my study nurse and said I had to completely stop all meds....that I was having an extreme allergic reaction, that the rash had spread (was confluent) over 90% of my body.

[NYgirl]

OH PD - 90% I didn't realize it had spread that far! Did they have ANY idea now that you've stopped the Vertex how long it might take to clear up?  I know how dreadful it has been for you. I am so sorry.

Can you treat again later with regular Interferon/Riba or Infergen/Riba instead?

[FlGuy]

Good to hear from you.  Moved my start to 10/27.  Finished all the planned painting and am now into 'bonus painting'
See the 10/16 thread 'Skin Part 2' - a great thread about the rash of rashes the vx crash test dummies have experienced.
I was thinking the other day, during rash topics, about how fortunate you were and how it was that Mr. PDS who was slogging through combo tx.  What a difference a couple of months make!  Glad to hear he's almost done and still standing, if wobbly.  The two of you together must have been a sad sight

So, all meds discontinued - even soc?  What's next?  Since you're communicating you must be feeling better.  Hope it continues.

[Sally01]

I am happy for your husband. Now that the therapy is over for both of you you can look at life in a whole new perspective.  For a while at least.  Yeahh.  As for your need to stop early, that's too bad.  I understand how miserable the skin thing can be.  It's like nothing else matters.  If my calculations are correct and you finished 68 of 85 days then thats 80%.  Does the 80% rule apply to the meds you were taking?  If so maybe you will be healed.  Let us know and enjoy your time in the "normal"

[painterlady13]

Hi hon, so sorry to hear that you had to go off TX.  Hopefully you had enough TX to become SVR.  Also from what I have heard that shortly after stopping TX the rash goes away.  sure hope so for your sake.  I also have rash but not that bad yet. But on all rescue drugs.  My 90 days of regular peg/riba is in 9 days.  I am about 1/4 the way thru TX and pray that I can finish. although I was UND at 6 weeks.  Doc says they wont do another PCR till I go back to Pitt which will be week 22.  

I wish you and your hubby the very best. And SVR to you both.
Take care
Nicki

[couldn't think of a nickname]

I am sorry you had to go through that, and stop.

Did they determine which caused your allergic reaction?

[mremeet]

I don't think PDS has discontinued all meds, just the VX part. I'm pretty sure she's continuing on with the peg and riba like me. Right PDS? I hope you haven't stopped altogether, please give us an update!

[couldn't think of a nickname]

"By the time, I actually went to my derm, she called my study nurse and said I had to completely stop all meds....that I was having an extreme allergic reaction"

I read it as the other 2 as well. If you are taking 3, and having an allergic reaction, you wouldn't know which one necessarily, especially if you never treated before. I guess I just answered my own question above as well.

Again, I wish they had put in a 3 month monotherapy control arm in these. Otherwise, it is too easy to speculate. I guess fairly speaking, there is a 33% chance it is any of those 3.

[GrandOak]

Glad to hear about hubby, sorry to hear about you and the rash.  Any ideas the source of the allergic reaction (i.e. whether it was the riba or the placebo)?

Being in the control group means you did receive the Peg/Riba right?  So in other words, you simply under went standard treatment, but received a placebo instead of the actual VX950, correct?

Hopefully your reaction was to the placebo so that you can try Std tx in the event you can't wait for new meds to hit market.

[prettydamscared]

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.  For me, it was not an option to continue with it.  My primary care, then my derm and finally my study doctor all concurred that if the prescribed prednisone (sp?) didn't work, I had to come off vertex and riba immediately.  Study doctor felt I could continue with peg.  Well, the prednisone did work.  My derm prescribed a 20 day taper and the rash was nothing but a bad memory by the time I got to the very end of my taper schedule.  So, I was able to continue with peg, vertex and riba for those 20 days while I was taking prednisone.  

Here's the rub.  When I got to the taper portion that calls for 10 mg of prednisone (that's the very end of the prescription) the "dreaded rash" came back.  That was on Saturday evening around 8:00 pm.  It came back suddenly and with a vengeance.

Briefly, here's how it works.  I took 40 mg for 5 days, 30 mgs for 5 days, 20 mgs for 5 days and lastly 10 mgs. for 5 days.  The prednisone seemed to be able to keep rash under control until I got down to 10 mgs.  Please understand I'm calling this a rash for lack of a better word.  It's not really a rash.  It's bumps that eventually run together on your body so that you have basically one huge, red, burning, itching, bleeding lump on your body from head to toe.  Ohhhhh, and then it goes inside those cavities.  I wouldn't wish it on my worse enemy but it's gone now.

Anyway, back to my story.  I immediately came off of the riba and vertex.  By Monday, after discontuining those 2 drugs, rash was gone again.  Tuesday, I started back taking 1000 mgs of riba and, so far, have had no problems.  As I said in the beginning, my study doctor does not think this is related to peg or riba.  He has unblinded me so he knows that I am receiving vertex as opposed to placebo. In this situation, it did become necessary to get special permission from the monitor even before the completion of the study to have me unblinded, but I still don't know which group I'm in, just that I'm receiving vertex.

pln told me yesterday that there's a whole lot of discussion below about rash, vertex, etc.  I haven't read any of that recently, will try to do so today.  I am simply relaying my personal experience.  No conclusions being drawn about the efficacy, safety, or how prominent this rash is in folks taking vertex.  What is a fact is that it does exist.  Both mremeet and myself have experienced the same rash.  We are in the same study and obviously have the same doctor. I think there are 8 people in our study.  We have both relayed to him that it's ok to discuss with the other our medical conditions so we basically talk rather freely about the "rash".  I think it may have been helpful to our study doc to have two people in his study with the same experience, i.e., for all of you out there who may say "how do you know you have the same rash".  Bascially, symptoms identical, and doc took us both off the vertex and told us in his opinion, it was unrelated to the other drugs that we're taking.  Additionally, mremeet met with a derm in our study center who told him it was a pro-tease inhibitor rash.  

They'll definitely figure it out, either we're taking massive dosages, taking vertex for too long, or some such problem.   Perhaps it's somehow a combination of the vertex with the other drugs but I have no doubt that they'll come up with something to countermand the effect of this "rash".  So, for anyone anxiously awaiting the release of a P.I. my money is betting on the fact that they'll get this figured out.  Too much at stake not to, right?  

I'm gonna go lie down and come back later.  I have some questions to ask you guys.

Char

[mremeet]

Yes her derm originally told her to stop all meds because her rash was so severe and threatening to her health. And since they didn't know what was causing it, it was simply recommended to "stop everything". But they didn't stop everything and she continued on with pred therapy (successfully) like me for several weeks after that. And I haven't heard the latest from her concerning what the doctors think may have caused it. Obviously in my case (based on our previous "chats" lol), my doctors and I think the VX was the offender. Although that's still to be determined as I roll off of the pred and fully return to just peg/riba with no immunosuppressants. I haven't heard the latest from PDS, but I suspect the doctor thinks the VX is the offender in her too (just guessing though). But I guess we should just wait and see what she says about it. Too bad, it sounds like me and her are just some kind of rare, unfortunate statistical rash cluster. Just our luck!

[APKhaos]

That's a good news/bad news thing if ever there was one!

Great to hear that your husband made it to the finish line with such positive labs. Must give you both a terrific sense of it all having been worthwhile. Won't be long before the residual drugs are oout of his system, by which time his new-found bright eyed and bushy tailed energy might be chasing you around the table like old times :-)

You have certainly had a rough ride with that mega rash. I know your were trying to make the last week of VX-950 dosing, but your dermo made a gutsy call. Hopefully, the rash will begin to resolve quickly. Please keep up posted on that.

Like others, I'm not clear on whether you stopped all TX meds, or only the VX950. If it was just the 950, then you probably have the benefit of the full dosing schedule. The study design allows a +/- two day window on completing the VX dosing, so given it was your last week, you only lost a couple of days. Hopefully, you got 99% of the benefit. Please let us know if you are staying in the trial and continuing SOC.

There are a bunch of people here rooting for you, grrl!

[couldn't think of a nickname]

How long did it take for the rash to show up initially?

If it doesn't come back, it could be the 950. If it does, then it could be riba. That could still be possible since the riba was only reintroduced a couple of days ago. Just trying to look at all possibilities.
My initial thought was, that if an immunosuppressant was helping the rash, the IFN is what really ramps up the immune system, but maybe not.

[prettydamscared]

Just want to be clear, I an not off treatment.  I never stopped peg, stopped riba just long enough to determine that wasn't the offending agent, and am currently still on the riba and peg.  And, even though I'm off vertex, I am still in the study.

My second post is sort of a continuation of my saga so it helps clear up some of those questions.

[FlGuy]

A while back, maybe months, you mentioned that there were concurrent 'tox studies' going on, which was an FDA requirement.  I had the impression that these were animal studies.  In your experience in tracking such things, are the results of those tests ever revealed?  And, what kind of animals are used?, if they are animals..

[prettydamscared]

Hi, I'm glad to hear you made it through.  Congratulations.  We're moving along here right...getting the possibility of the the groups narrowed down, right?  You know you're not in Group D, which I think personally is a good thing.  Let's hope for B or C.

I think you have me mixed up with pln.  I did NOT make it through to the last week.  I made it through day 68 and part of 69 and then study doc took me off of vertex ONLY.  I'm still on soc.

Char

[couldn't think of a nickname]

They were 6 month tox. studies on 2 species, and I believe it was dog and rat. The question was asked about monkeys, but it sounded like they were given guidance to do those 2 species. A while back, this was a prominent question. They needed the 6 month animal studies before they could do the longer trials in treatment refratory patients. That study should be done, or nearly so. This is why non-responders weren't tested yet. That would be a trial where any possibility of rash might be easier to track, because those people would know if they had it before. But, the possibility always exists to an outside factor anyway.
For example, yesterday my stomach felt like ****. I told my wife that if I were on treatment, the way it felt, I would have blamed it on treatment. But I am not treating.

Those results aren't that easy to find, but I imagine they must be published somewhere. It is assumed they are successful when the start the next part based on them.

I have read in the past, that when tested at higher doses, (healthy volunteers I think) it was still well-tolerated. I don't know how long that was done, but it had to be no less than 14 days I would imagine.

[prettydamscared]

Grankoak, No, I was not on placebo.  I have been unblinded and was definitely gettting the vertex 950.  The problem with my post is I posted the original comment which only allows you the 1650 words.  Before I finished the remainder of my post, a lot of folks are misunderstanding my original post.

Bottom line, study doc took me off VERTEX 950 ONLY because after careful observation and determining that I am receiving the vertex, he determined that was the offending agent.

I am still on treatment and only had to be off of riba for a few days.  After vertex got out of my system, (24 hours), my symptoms abated.  Other than feeling like the normal dog pooh, rash is GONE.

[prettydamscared]

My understanding is the same as yours that the peg ramps up the immune system but I'm not postiive about that.

It took about a month and a half for rash to show up.  Later, I'll check that to tell you exactly.  I can tell by when I wrote a check to derm's office and I know it was about 3 weeks prior to that.

[couldn't think of a nickname]

That is puzzling that it took that long to show up, yet that fast to get rid of. As you mentioned, 950 is excreted from the body quickly, which is actually a criticism of it. IFN and riba, on the other hand, I think are supposed to accumulate and build up in the system.
Back to 950, that's why dosing is so high (excreted quickly), and that's why the next gen of drugs will be better. That's also why they have experimented with boosting it with Ritonavir, as it could cut down dosing to once or twice per day.
It has been said that protease inhibitors for HCV do re-enable the immune system that the virus suppressed, but that would happen quickly.
On another note, the skin is the largest organ in the body. It is said that when you detox, the skin is one of the first places you'll see it (besides feeling crummy). I have experienced that when I have used apple cider vinegar at first, or other herbs. In THOSE cases though, they say it is a good thing as your body is getting rid of toxins. I would not draw that parallel to your situation though. It is just a comment on skin and detoxing.

[jmjm530]

Pretty,

So very sorry things turned out so badly. Like the others, I'm a little unclear how much Peg and Riba you missed and if you're continuing with them and for how long. I do hope you are able to get back on at least Peg and Riba and finish the course of treatment.

Yes, we had quite a discussion in the thread "Skin 2" below on the VX trial and skin issues. I'll try and summarize as best I can but the thread and comments contained speak for themself.

In summary, it appears from what has been reported anecdotally so far, that other than your situation, we had one member (MreMeet) who stopped VX-950 4 weeks early due to rash/reaction, and 26 other participants who either had no rash, or nothing considered severe, and therefore no stoppages. I'm only guessing, but I would imagine that the same reaction/drop out rate might be found in a similar population of those taking only Peg and Riba.

Of course, this doesn't minimimize what happened to you or MreMeet, but does suggest that no one should jump to any conclusions regarding serious skin problems and VX-950 at this point, in fact if any conclusion would be drawn it would be the opposite. Soon enough, all the data will be made available and we will have all the facts, including SVR data which should start streaming in as soon as six months from now.

-- Jim

[Kalio1]

Your statement "if it does come back then it is the riba"  is completely bogus IMO.


The reason they worry about the rash returning, regardless of the offending agent, is that the prednisone suppresses it and sends it to the nerve endings, as you taper off the prednisone, you can have what is known as a "rebound reaction" as the steroids are reduced and the rash comes roaring back because it isn't really "gone" the prednisone is just suppressing it. They then restart the prednisone and try to re taper again and hopefully it will have resolved or burntout by then. That is why mremmeet was strongly warning others to watch out for it getting worse or returning.

I had a "confluent" allergic reaction rash from a different offending agent that sounds a lot like the horror they are experiencing ( which can be very dangerous health wise, this is no "rash" situation these guys are dealing with, it is a systemic issue with 90% of their bodies involved!)when I tapered off the prednisone as instructed it came roaring back with a vengence, they restarted prednisone, ran it for a longer course, tapered it again and that time it worked. I realize the offending agents are different but the treatment sounds exactly the same.


You are so completely unwilling to look at the reality of this situation and admit that Vertex is likely the offending agent, verified by their study doctors and study dermatologists no less that it makes you look like you can't accept the obvious and you will convolute any scenario to try to defend your position that it is riba. There is nothing I hve ever seen showing riba causing this tpe of reaction.

Like PDS said so well, It doesn't spell the end for VX at all, it is a problem that has to be worked out.

I challenge you to show ONE case of riba rash or SOC related skin situation that even approaches this type of situation and post it here. You are so convinced it must be the riba because you personally are afraid of Riba that you are blind to what seems obvious to many of us.
These kind folks come here to give us info on VX that we all are dying to hear, your constant fingers in your ears position isn't very helpful. They are giving us the FACTS, not debating points. They are going thru hell and still find the time to share with us so let's try not to keep telling them they are wrong, they don't have to justify anything they are just reporting the facts as they are happening to them.
It is becoming more and more obvious that VX is the culprit in both of these cases. I think it is also pretty clear that the DURATION or DOSAGE of VX is at issue particularly since the 28 day group did not see this problem. We will see if in time this reash develops in other participants that started their trial later on.

Denying the problem does not help towards a solution.
Accepting it, analysing it and making a plan to try to solve the problem is more productive.

[Kalio1]

Their own study dotors told them the offending agent is VX950. I hardly think that is "jumping to conclusions"

[GrandOak]

Thanks, I did see your continuation later and better understood what you couldn't put in the original post.  When you said vx-950/placebo in original post I mistook that for the 950 trial and they your were unblinded and known to be in placebo control group.

[couldn't think of a nickname]

I am tired of your attacks. I am trying give all sides until facts are known. You conveniently leave out the part where I mention if it doesn't come back, then it could be the 950.

But if it does come back, and there is no 950, why would it be 950?
She is off prednisone. There is no rash since she stopped both riba and 950. She just recently restarted riba.

I ACKNOWLEDGED IN AN ABOVE POST IT COULD BE 950! CAN YOU READ, OR ARE YOU INTENT ON JUST ATTACKING ME?

I am sick and tired of your attacks, your criticism, and your attitude towards me.

[jmjm530]

As I mentioned in another thread, I think you're overreacting. Only two people out of 29 had to stop VX-950 short of the 12-week dosing period. In MreMeet's case, it was 4 weeks short and in Pretty's case it was 2 weeks short. The other 27 participants either had no rash or nothing considered severe. None of them dropped out because of skin problems. Is this reaction/drop out rate any worse than we've seen all along with Peg and riba?

As to your statement that we've never seen such severe reactions before with ribavirin, I disagree. I've read of people dropping out over at J&F's both because of riba (and I believe Peg as well) because of a severe drug reaction.

This is not to say that VX-950 wasn't the culprit in either Mre's or Pretty's case. It appears it may, but certainly nothing conclusive. But even it it was, why hold VX-950 up to a more severe standard than Peg and Riba? It seems that our little anecdotal study group is doing pretty good statistically in that regard. Let's wait unitl we HAVE ALL THE FACTS before jumping to conclusions and suggesting what has or has not to be done.

-- Jim

[couldn't think of a nickname]

Another point you deceptively twist on. I am afraid of riba because I have thalassemia and have stated that many times.
I would appreciate it if you would not put words in my mouth, as you are so good at.

Stop speaking for me.

[jmjm530]

Kalio: I challenge you to show ONE case of riba rash or SOC related skin situation that even approaches this type of situation and post it here.
--------------------------------------------

This is by no means the only instance of people being pulled off treatment from riba, but you asked for one and I have other stuff to do today to look for more:

From J&F:

"2nd week in TX-I developed" Hot Burning Needle " sinsations on my Chest,Thighs,Back and Inner Arms. It would intensify to being unbearable,when i came in contact with WATER. I never actually itched,no red marks etc. Just a very Hot pin pricks that would move around my Body. After a shower it was so bad. I had to put ice packs 5 and 6 at a time all over my body.If I sweat they appeared again. Nothing topical worked: Aveeno soaps and Cremes,Cetahil soap and cremes, Benedryl,Atarax, Doxepin. I've been showering only twice aweek and it is Horrible, Waterless soaps don't work either.The Allergist says I'm Allergic to the Ribavirin,My Doc says the same thing. I took my first Blood work after Tx 5. The Doc says stop Ribavirin Immediately for 5 or 6 days so he can look at the Blood work...What happens from there I don't know..."

http://forums.delphiforums.com/friendship7/messages/?msg=22134.1

[FlGuy]

Trying to do my best initation of GrandOak and his sluething...
I think the start order was APK (mid July), PLN (late July), PDS (early Aug), Mr E (early-mid Aug), You (early Sept) - not sure about Travel Mom.  I think you said you already had that 'sunburn' thing and that when you started the nurse has mentioned 'skin sesnitivity' which was before PDS and Mr E 'erupted'. So, it sounds like 'skin stuff' may not be real rare in the participants.  Reading how devastating the situations became for Mr. E and PDS - be aware to changing conditions and responsive early.

[jmjm530]

Only 2 out of 29 participants appear to be complaining of what might be termed severe skin issues. How different is this from what we've read about for a long time from those on normal combo tx and skin issues. Personally, I was a real mess, and never took VX-950. Many, many more examples then me.

[Kalio1]

Im speaking about an experience like their, tht involved IV drugs having to be administered and courses of prednisone. I have looked far and wide and I cant come up with one case of riba rash that fits that. That is what I am talking about. I can't find a case of "confluent" riba rash either.
If you find one, please post it.

[Kalio1]

I mean an actual documented case, not antecdoctal stories.

[couldn't think of a nickname]

http://www.thebody.com/Forums/AIDS/Hepatitis/Current/Q171746.html
neck to ankles rash above from riba.

http://ndt.oxfordjournals.org/cgi/reprint/14/6/1558
read page 2.

http://www.personalmd.com/drgdb/1279.htm
severe rash occurs due to allergic reaction in the above.

Ooops, you CHALLENGED me to find 1. It took me 3 minutes to find those.

[jmjm530]

I just posted one. IV's are given all the time in the ER, for hydrating, drug administration, whatever. Once the line is in, they use it for drugs if necessary. When I went to the ER for anemia, the first thing they did was insert an IV line for fluids. When I complained of nausea, they asked if I wanted some anti-nausea meds IV or in pill form. I had an infection once in the hospital and they put antibiotics thorugh the IV line. You're jumping to all kinds of conclusions without a medical background or even complete information what is going on.

You asked NiceGuy not to be "the boy who cried wolf" in another thread. I think you're doing the same thing with a lot more potential harm. Why don't we wait until we have ALL THE FACTS AND DATA before jumping to conclusions about a promising drug in early trial.

[NYgirl]

ARE YOU ON LINE - IF SO i NEED TO GET AN EMAIL TO YOU SOMEHOW SO LET ME KNOW.

[Kalio1]

I just explained to you WHY 950 could still be the offending agent even if they had stopped taking it.

I did not attack YOU,  I spoke to your constant avoidance of admitting that VX950 could be the offending agent causing this situation for them both. Now if their rash comes back I suppose you will then claim that it isn't VX950 without considering that the prednisone can cause rebound reactions when it is tapered and the original offending agent would in FACT still be the cause.

Are you going to threaten to leave the forum yet AGAIN?

[jmjm530]

Kalio: mean an actual documented case, not antecdoctal stories.
------------------------
LOL. Thanks for the gift. You're basing your statments on two anecdotal accounts from members here, yet you want a "documented" case????? Actually, there are documented cases of allergic reactions to riba. Where is your "documented" case of a similar reaction to VX-950. J&F's posters have the same credibility as those here do IMO.

Anyway, DOCUMENTED case:

http://tinyurl.com/ynd9zx

[FlGuy]

Actually, it's at least 4 that made mention of 'skin stuff' regardless of severity. And if it's 4, it's probably statistically significant.  Like soc, if something is possible a patient should be aware and be ready to take prudent action.  It's really no different that the warnings and cautions that we give to people daily who are starting soc on the subject of low hgb, possible anemia and 'rescue drugs'.  I'm not pointing at riba or vx, I'm saying skin stuff is possible and if it's serious skin stuff react appropriately.

[Kalio1]

It's this name at cox dot net.

[jmjm530]

I used "severity" as a cut-off point, because riba in and of itself causes skin problems in what seems like at least 20% of those who post here, and I think that is a VERY conservative figure. Only two out of the 29 in our little anecdotal VX-950 group had what they reported as a "severe" reaction warranting their being taken off the drug before the full course. I'm not at all trying to say that VX may not be the offender or to miminimize the anecdotal accounts. What I do object to is that some (not you) are trying to connect some very dubious dots without anything near like all the facts.

-- Jim

[Kalio1]

you say


"and 26 other participants who either had no rash, or nothing considered severe, and therefore no stoppages"


how in the world could you possibly know this?

[jmjm530]

Maybe the dots are dubious, but the way they are connecting them certainly is :)

Be well,

-- Jim

[NYgirl]

"Their own study dotors told them the offending agent is VX950. I hardly think that is "jumping to conclusions"  "

We have four members in here on Vertex that I know of who post in here and THREE now have had the sunburn rash problem on the vertex.  It certainly ISNT the Riba, as PDS even had to stop temporarily to make sure.

One other didn't but may be on placebo (face it somebody has to be).

This rash is NOT the riba rash that we complain of at all - it sounds like a brand new rash that I'm VERY glad I did not get (and as you know I had BAD BAD riba rash in the beginning)

Jim, Why do you simply refuse to believe that it might be the Vertex?  Quite honestly you seem lately to want to just refute what other people are saying for the sake of it or something.  Nobody knows anything for SURE which is the reason for trials but...it certainly SEEMS as it is the vertex so why not just say so?

You've NOT been on vertex and have NO IDEA what this MIGHT be but the people who have it and the doctors who are treating it SAY that it is the VERTEX causing it.

What is the big giant mystery that is here?  

And PS Telling niceguy (if he is a real and legit person) that hs it he boy who cried wolf is the NICE and RIGHT thing to do. If he continues to believe every single thing that happens is a bad bad reaction to the meds.....than when something REAL happens NOBODY WILL LISTEN TO HIM.  As an adult of whatever nationality or language - people DO understand basic basic things like that and not to over react and be so damn dramatic all the time.

She did him a FAVOR putting it out like that.

Boy I wish I didn't read this thread but - please OTHER people have opinions and it does NOT make them incorrect just because you always disagree.

[NYgirl]

Thank God...you've got mail. Finally.

I've wanted to ask  you that question there for MONTHS and only just realized I still hadn't!  :)

[couldn't think of a nickname]

You do owe me an apology for twisting my statements and for your continued attitude to me. Sounds like you want me to leave.

[Kalio1]

by documented, I mean the participants here were treated and or hospitalized for those treatments so there is documentation,they aren't just antecdoctal. No riba rash case I have ever heard of involved this dramatic kind of intervention that I can find or that you can provide.

You are quick to blame SOC for your problems, even sleeping 10 hours a night ( which doesn't seem to even count as a problem to me)but when presented with what seems an obvious, documented connection to VX verified by the study doctors no less, you can't see that their trial doctors taking them off of VX and leaving them on SOC indicates it is the VX?


okie dokie

[jmjm530]

Kalio: "and 26 other participants who either had no rash, or nothing considered severe, and therefore no stoppages"
how in the world could you possibly know this?
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Please read my first post in this thread and then the "Skin 2" thread below. As stated, I am basing my statment on anecdotal accounts given by member here, as you are basing your statments on anecdotal accounts given by members here. There is anecdotal evidence that two member had a severe skin reaction to the trial drugs, and anecdotal evidence that 26 other people didn't have a severe reaction. Again, please read my first post, ane d then PLNs, APK's, and Lab Rat's posts in the "Skin 2 thread".

NY: Jim, Why do you simply refuse to believe that it might be the Vertex? Quite honestly you seem lately to want to just refute what other people are saying for the sake of it or something.
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Obviously, you haven't read my posts either in this thread or in the "Skin 2 thread". I AM giving the benefit of the doubt that VX may indeed be the offender. That was not my argument and that was not my point. Please read the entire threads before mischaracterizing my position.  The fact that I don't agree with Kalio's take on this, or your take on a number of issues, doesn't mean I'm refuting things "for the sake of it". Please give me one example and I'll be glad to give you the reason why I beleive or don't believe in a position I've taken.

[Forseegood]

sorry you had to go through this PDS, wishing you the best...I'm very glad that you are low liver damage now at any rate...talk to you soon...

[NYgirl]

If it looks like a duck and quacks like a duck then it's probably the Vertex.

Nothing mystical or magical about it.

It's a reasonable conclusion by people who have HAD ribarash and realize it's NOT the same thing WHATSOVER - it's WAY more debilitating and obviously not the same thing.

I don't think there is any problem connecting the dots here if you use common sense and LOGIC to solve the equation.

[cuteus]

per PDS " I stopped riba just long enough to determine that wasn't the offending agent, and am currently still on the riba and peg."  "Bottom line, study doc took me off VERTEX 950 ONLY because after careful observation and determining that I am receiving the vertex, he determined that was the offending agent."

if the dr is sure, why aren't we?

[couldn't think of a nickname]

I left once, but again, you distort. It is tiring keeping up with your spin.

[jmjm530]

Kalio: You are quick to blame SOC for your problems, even sleeping 10 hours a night ( which doesn't seem to even count as a problem to me)but when presented with what seems an obvious, documented connection to VX verified by the study doctors no less, you can't see that their trial doctors taking them off of VX and leaving them on SOC indicates it is the VX?

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I can't defend what I never said (never said VX did not cause the mentioned problems in 2 out of 29 reports) so I'll leave it up to those interested to make up their own mind. Hopefully, they will wait until more complete trial data is in before jumping to any conclusions. BTW "low blow" on the sleep thing but that seems your modus lately.