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PROVERS - Need advice from Prove patients with rash and itchy problems; appointment in AM
by miked, May 31, 2007 12:00AM
Yesterday I reported that I had a mild itching around my arms, shoulders, back and legs but that it was manageable.
By 11:00 in the AM this turned into the worst itching that I have ever felt, worse than the worse case of poison ivy or oak. There is absolutely no preserntation of a rash though, just the severe itching..
My doc is great and he gave me a script for atarax during the day and doxepin at night because it causes teriedness. I still itch a bit but much better today.
Tommorrow AM I have an appointmnent with the study nurse and I believe the doc will be there because this problem seems to really concern him.
What am I facing here? Will they give me a script to manage the itch, take me off the study, ???
Also have any of you Provers had similar circumstances and how were they resolved? Are there medications or ointments that can arrest this itchng issue?
Please let me know what you know.
Thanks,
Mike
P.S., over the weekend I did spend much of the timeion the garden with sunny days. Is this a factor?
By 11:00 in the AM this turned into the worst itching that I have ever felt, worse than the worse case of poison ivy or oak. There is absolutely no preserntation of a rash though, just the severe itching..
My doc is great and he gave me a script for atarax during the day and doxepin at night because it causes teriedness. I still itch a bit but much better today.
Tommorrow AM I have an appointmnent with the study nurse and I believe the doc will be there because this problem seems to really concern him.
What am I facing here? Will they give me a script to manage the itch, take me off the study, ???
Also have any of you Provers had similar circumstances and how were they resolved? Are there medications or ointments that can arrest this itchng issue?
Please let me know what you know.
Thanks,
Mike
P.S., over the weekend I did spend much of the timeion the garden with sunny days. Is this a factor?
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Hehheheh!!!!!!!!
The rest of my cats wont play with him anynore then......Uh oh........
HA!
Truly hope you feel better...........
Second, there appears to be more than one skin reaction to the VX + SOC therapy. The worst of these is truly serious, has caused subjects to drop out of the trial, and requires focused treatment. Sounds like you have something less than that, but its still a hellish thing to deal with.
My dermotologist just happened to have gone through SOC some years back. He took one look at my rash, and nailed it! The treatment he prescribed was Lidex cream [Fluocinonide, a Class 2 steroid - the second strongest class of topical steroids] twice a day, and zertec 10mg [antihistamine to attack the allergic reaction]. It really worked. Within a few days I was able to sleep soundly for the first time in 6 weeks.
Not saying "worked for me so it will work for you", which is a nonsense, but there ARE treatments that can really help.
FWIW, the rash cleared completely in 10 days or so. It popped up again in a very reduced form a week or so before the end of dosing. I had some Lidex left, which cleared it up in no time at all.
Good luck with your clinic visit. Please let us know how they are treating the rash.
Without belaboring in too much detail just yet, bottom line is that mine and pds' (another prove 1 participant in my group) VX induced rash was horrible and resulted in (a) an early discontinuation of the study drug and (b) an extensive immunosuppressive therapy with prednisone and solumedrol (a powerful IV steroid) to control the rash (in addition to antihistamines and steroidal creams). But since that time, we've also seen prove 2 participants that reported early symptoms of a nasty rash which "seemed" (i.e. no proof) like it could have been a VX related rash, but it largely resolved itself after they started taking an antihistamine commonly available/used in the UK (don't recall what it's called, or if it's similar to what we have in the US). To my knowledge none of the prove 2'ers reporting the rash problems had to discontinue the VX early because of the rash - although I do know that one women within the London group did develop the horrible rash and had to leave the study altogether early (she was never online here though).
Bottomline is that there appears to be a variation in the VX type rash, not all variances of it are devastatingly debilitating. I think the real a$$ kicking versions of it hit maybe 1 in 10 or so. Plus, to my knowledge the treatment drugs can make your skin photosensitive, so if you've been out in the sun extensively as the summer's coming on, that may very well have something to do with your itching. Are the itchy parts the same areas that were exposed to the sun? I'd lay low and use lots of suncreen, long sleeve shirts, hats and stay in the shade as much as possible. Plus the atarax should help, in my worst moments I would take 3 or 4 of those pills to get myself to the point of being able to sleep. I was told they're relatively liver friendly and non habit forming. I never developed a habit/addiction from them (haven't had any in months and dont miss it), so I wouldn't be afraid to use them if you need them.
Hope you're feeling better, you do NOT want to the full VX rash monte rash. But if it looks like it's coming on, drop us a line here and I'll give you a detailed summary of what eventually worked for me to get rid of it.
Susan
I have been able to work this week and was fine. It's been so nice to get back to my old routine.
I had gotten the typical Riba rash on my chest about 3 or 4 weeks ago. It's just now getting better. Just in time for me to go back on the Riba.
I am struggling with nausea but the Zofran takes care of that real quick like!!! It's a miracle drug. Thank goodness they allow that!!
I have not been in the sun at all but my skin feels like I have a sunburn. Every couple days or so I get a tiny little dot...smaller than a blemish...that is very itchy. It then developes about 1/2 dollar size red welt surrounding it. They disappear the next day. I've had them on my thigh, back, chest, etc. Very strange.
I have no idea if I'm getting the real thing or not because all of my symptoms can be attributed to other things also...anemia, riba, etc.
Oh.....and one more thing.....a little embarassing.....I had a couple days there that I had extremely painful bowel movements...would writhe in pain for about 15 minutes after.....let's just say razor blades and leave it at that. That has subsided.....Thank God!!!!
I hope it doesn't sound like I'm complaining. I am just stating the facts as I have experienced them. Even with all the trouble I've had...I wouldn't give up my spot in this trial for all the money in the world :-)
Way different than the riba rash.
Mike I wish you all the luck - get to the derm if whatever the study nurse says doesn't help. Fast!
Pam
Sorry to hear you are flagging. We both also were, coming up to just 12 weeks on Prove2, never mind 41. I think it must be a feature of getting near to the finish line.
We've had many talks about how long we think the VX people really need to carry on with SOC. The best we can come up with from the known study data is the 36 week rule from the Drusano study, which says to go 36 weeks after you get to UND for a 90% shot at SVR. So at 41 weeks you'd have that covered. It's such a dilemma for the early Prove people to make an informed decision about when to stop tx seeing that we don't yet have the hard data from the Prove studies on what works.
Here's the link to Drusano:-
http://www.journals.uchicago.edu/JID/journal/issues/v189n6/31190/31190.html
Wishing you all the best
dointime
labrat - I've been wondering about you from time to time. Everytime I get out of breath, or feel really cranky, or call in sick, or have an itch attack, or have a mental meltdown, I think to myself "labrat wouldn't do this, she'd just go run a marathon or something, so how come I can't do the same?" ;-) I just have to admit I'm not as tough as you are, and whoever that older irish dude is that's running full marathons whilst knee deep in anemia laden treatment (what was his name??). I admire your grit and resilience, amazed by it really. You guys are from hearty stock to be sure, I just don't know you do it. And yeah, it would suck royal goat nads (sorry for the rudeness!) if I end up losing my SVR after stopping 6 weeks shy of my full 48. But at this point I'm prepared to accept failure if it happens. It wont be easy and I know I'll be devastated, but that's life and I'll just have to get right with it if it happens. Plus if I do relapse I probably have enough liver left to last another 5-10 years if I take care of myself. I'll take another bite from the apple with another PI like SCH503034 or equivalent when I'm ready. Anyway, thanks for the kind and encouraging words, we're all in this fight together no matter what happens. Your resilience and tenacity are something to behold, please keep us updated with how you're doing and I'll do the same.
dointime - Hey miss dointime, I deeply apologize about not getting back to you or hungry. I just got so burned out I basically fell off the map, although I am going to respond to your letter (hungry's ended up in the spam folder, but I caught it and will also answer his). I've been having emotional and cognitive strife lately, so I'm really sorry about being so rude as to not answer emails for awhile. And thanks for the drusano reference, I'm aware of it and have considered it as a part of my decision to stop early. Odds are I've got my SVR at this point, but then again with my peculiar situation with all the steroids and early VX cessation and reduced riba (been on 800mg for a long time now), hard to really figure what I might need to reliably get an SVR. Oh well, my shot is scheduled to be taken this very evening and I'm not going to take it. I haven't taken any ribavirin either today. I can't believe this actually might be happening, I'm stopping! I feel so strange, these pills, and side effects, and struggles have been cosuming my existence for nearly a year now...and now just like this it's going to be over?? So weird, what a long efffed up journey it's been. I cried earlier when I heard an old song I love on the radio (My Bloody Valentine's "Soon"). And I'm not the crying type, I haven't really cried since I was a boy...well there was that time when I crashed by dirt bike and smacked my privates on the gas tank - that made me cry too. But you know what I mean. ;-)
Anyway, how have YOU been? How is the riba settling in with you? Tolerating it ok so far? Rash? Itch? Anemia? Psychotic anger? lol Any luck and you'll be like labrat our perfect specimen, no sides, running marathons and happily escorting old ladies across the street. DAMN HER!!! ;-) (j/k labrat!) And above all, how are your PCR's?? Please tell me it's working, although I'm pretty confident it'll put you into UND land especially with your very low starting VL. And how's hungry doing? I assume he's grinding along, but otherwise ok and still UND? I think he's about got his SVR in the bag, just a matter of how much insurance he wants to buy by treating longer. Ok, take care, I'll drop you a line soon. In the meantime keep up the good fight!
So good to hear from you. I was worrying that things might have got a little tough with you. Dointime and I have been missing the great advice that you and some your fellow Prove One-ers provided while we were going through Prove2. Your particular saga has been an inspiration and your advice incredibly useful. In fact, I'd go so far as to say that the quality of this site has suffered since you stopped posting. Seems that Prove 3 folks are not using the site the same way. Judging from many of the comments, looks like Vertex finally succeeded in scaring everyone off. Seems like a fundamental mistake to me. There's just too many pitfalls in this thing for folks to stay on separate islands.
Anyway warm greetings and congratulations on reaching the end of your program and very best wishes for your upcoming amble "out of the woods"
I'm in week 22 of 39 following Drusano rule and, as Dointime said, struggling to find the right way to guage treatment length. After being excommunicated for not stopping all meds after week 12 of triple therapy in accordance with the Vertex dictate, I don't see a lot of intelligence about optimal duration of treatment for us triple therapy lab rats. So I just go on, day by day, like everyone else, soaking up whatever intelligence is out there. I don't look ahead too much - 17 weeks seems an awful lot of time to go. On the brighter side, 22 weeks seems like a long way to have come!
Hope to hear more from you
Now that you've made your command decision - I will respectfully butt out and keep my fingers crossed for you and SVR. Based on the Drusano study and by other Prove-1-ers - you've probably already licked it! SO here's to SVR - and equally important - to getting back to your normal self again. Please let us know how it works out. Good luck mremeet!