SEVERE rash people. plz read...

[elpasolady]

I'm wondering ....for those of you that unfortunately developed a real severe rash, to the point of almost having to stop treatment. OR, if anyone out there acutally had to stop treatment for a rash.....how quickly was the onset of the severity?  Was it  gradual, or did it become severe in a matter of a few days?

I will tell you why I want to know...I am trying to have grace towards my doctor, but I'm disappointed in that she has not returned my call for 2 days now.  I was told to call her about the rash I am developing, by you all, and also by the INCIVEK nurse.  So i did, yesterday morning.  I told her office staff that it was not an emergency but that I was letting her know, as I realize it is a commen sx of this drug.
BUT....here's the thing...( there is always 'the thing" right?)  I realize that I am not her top priority, but considering that I am her FIRST naive patient, and more importantly her FIRST incivek patient, you would think she would have a little more interest in me and how this rash is doing.  Right? I mean, it IS the most serious side effect of this drug.  Or, am i being unreasonable?  Obviously if I had gotten worse  I would have called again, but I still think she should have called by now, just to assess me over the phone.  IMHO  I  was told it is important to nip it in the bud before it gets out of control.
That is why I want to know how quickly these serious rashes can come about.  I want ammunition in case I decide to "talk' to her.
Thanks....Debbie

[elpasolady]

Thanks for the insight.  I never really thought of the RIBA rash, because all anyone ever talks about when on triple therapy is the INCIVEK rash.  We just assume it is from that. Pretty much everyone who is getting rashes on triple, blame it on Incivek.

Not everyone  in the trials on telaprevir got real bad rashes, some were mild.

I wonder if there really is an accuate way to tell the difference, OR, if it really even matters.

Stay safe this weekend!  I hope things turn out well for you where you live, and everywhere, for that matter!

[nygirl7]

You probably at this point only have the riba rash not the incivek rash - the incivek rash is not easily tolerated while a light case of the riba rash certainly is.

It seems much more likely that is what you have after only 2 weeks on treatment.

[elpasolady]

Magnum- I actually wanted to take the Incivekm mainly because at that time I really wasn't sure i would be one to get the rash and didn't figure I would be one of the severe cases. My rash is more of an annoyance right now than a 'pain' and it seems to be getting better.
The main reason though, was that you only took it for 12 weeks, then done!  In my mind, it was less time on 3 drugs, therefore less sides, overall.
One poster said ( I think it was 'workingdog" , that he would much rather have the rash, anyday, over the anemia.  He has had both.
I figure, I may have a rash, but I still have energy and feel totally normal.  I just got back from the gym doing 40 minutes of cardio.  I have never been anemic, but from what I understand, it is HORRIBLE...can't do anything.
I guess I need to hope I become anemic for a greater SVR chance. ,
But, did not want two drugs that can have that side effect, if that makes sense.
If my rash stays like it is, then I will be glad I made this decision.
Take care- Debbie

[Magnum]

I posted several times before either drug was released that Incivek has the horrible rash and Victrelis has the Anemia factor. That's why my doctor has me on Victrelis. You can fix the Anemia with Procrit, but you can't fix the rash (at least not without great difficulty and agony for the patient). Makes me wonder if the pharmaceutical company isn't giving "bonuses" for every prescription filled...

[elpasolady]

Thanks for all the good words and advice.  
I did soak in Aveeno and it didn't do much.  I am doing pretty well at the moment.  I am staying cool and it helps.

I want to apologize to anyone, especially you,  Dointime, that misunderstood, thinking I had a severe rash.  I wanted to get the attention of those that DID have a severe rash in the past to ask them how quickly the severity came about. I wanted to make a point to my doctor, if needed. That is why I said , Severe rash people, please read.  I did say in my opening post, that it was not an emergency. Perhaps you missed that, Dointime.  Anyway, in no way, was I trying to call "wolf".  That's not my style.  I thought I had made that clear, but apparently not.  Again, my apologies.
Have a good sleep , all.
Debbie

[hepman]

it's amazing wen i did tx i did not have a nuff hands to hold al the new places that   heart hot showers ? cold sowers tall come powder my hair grew back streaked for a few years do not listen to the dentist in tell ?6months after your tx mine went back solid in my head glad i didn't let them pull my teeth i walked around with a cat held like a suit case dragging a big blanket  like lines on Charley brown i hear tx might of ben tuffer back then, now it's smaller dose less time its probably just the same it ***** stay strong we are all fighting the dragon. ..remember lafter is gods hand on a troubled world

[CaughtOffGuard]

Have you tried soaking in Aveeno?

[his3707]

If I knew what I know now I would have left the office on day 1 with a handful of prescriptions.   If you break out in a rash redeem this one, if you have blood problems redeem this one,   ETC ETC.  Of course that is what my fantasy world would be.  

[streamline569]

PS I just asked today for a new cortisone prescription and my PC Doc gave me something better then I was using, so he says, I'm waiting for it to get to the pharmacy tomorrow. I let you know what ii is and if it does work better then the what I'm using now. Although I don't have the rash to badly, just here and there, but it would probably be worse if I haven't been using the creme.

[streamline569]

I get the feeling that some doctors who treat hep c just want to deal with the blood problems and all the other stuff is not really their expertise. They would rather you go to another doctor for what they consider the simple stuff. I sat down with my Primary Care doctor before I started and asked him if he would be there for me to help me do what ever I had to to get through. He seemed thrilled that I asked him and he is always there for me immediately if I need a prescription. Of course my hep doc knows everything I'm taking and using. I just don't get to talk to the hep doc often, he's always tooooo busy. So I keep the simple thing away from him.

[dointime]

"Just to be clear, presently my rash is tolerable.  This isn't about needing her to call in order to get a presription for relief.....although if she does call, I will ask for one."

Well I have to say that I now feel I got suckered into answering this post.  I did get the impression that you had what you suspected was a 'severe' rash and you were in real trouble.  Maybe because of the word 'Severe' in the title.  If I chimed in on every post about a rash I would be here 24/7 writing about my experience, so I only do so when I feel there is really trouble and I can make a difference.  I'd go easy about crying wolf if I were you.  You may really need to some day.

dointime    

          

[elpasolady]

UPDATE:  OK, my Dr. has been redeemed.  She called me and apologized for taking so long to get back to me. Very crazy week so far, her PA is out this week, their new electronic records/ messaging system is causes some delays in when she gets her messages, etc.
Bottom line, we talked, she asked me to send her a pic of my rash  through the phone, and she gave me her personal cell number...her idea. She said she wants to get any urgent messages I may need to get to her ASAP.
I knew there was a reason I liked her, despite her lack of triple therapy experience. :)
Peace!

[oceanblue701]

I was on standard treatment but very scared of rash due to childhood eczema. I used lots of moisturizing creams and hydrocortisone 1%cream all over DAILY to try to avoid dry skin which i know usually precedes eczema and psoriasis. I got a rash at the end of treatment but it didn't stay and wasn't dry. It is my experience that hot sun and sweating without jumping into a pool or the beach immediately is a sure way to spread rashes. I could not be out in the heat and sun during treatment , it just made me feel lousy.

Regarding the Dr. not calling you back, it is imperative that you get information to and from your physician in a timely manner. You have to make sure you do so that so nothing gets so bad that it stalls your treatment.. .

My doctor's staff were great but still never emailed her about something important in my treatment which she was upset about when she found out. I also requested the on call Dr. get my own Dr. when i had another problem and that worked out.
I always felt nervous when i called but tried to remember how distracted people can get when they are in a busy medical practice. The Dr. may have so many patients (and this goes for the staff too) that you need to say always "This is me and i have hepatitis c and am on treatment, a side effect is worsening and i am very concerned about it". Please have my doctor telephone me at soon as possible. They will remember you quickly as you remind them who you are.
IN ANY PRACTICE, you would be considered a high risk or top tier patient who they are closely watching and you should be carefully managed.
If you do not feel this is the case, get out of there and find someone else. I am sorry for going on but i feel very strongly about this. I hope your rash will improve quickly with treatment.

[nygirl7]

It doesn't matter if you are the first naive person that your doctor treats they certainly should be able to get on the phone and ascertain the correct answeres from Vertex if they don't know them because they didn't learn about it first.

Honestly I don't even believe doctors who don't know the answers to the basic questions should be allowed to prescribe a drug that they dont know about, let alone teach their patients about BEFORE they start.

[flcyclist]

The combination of heat/sun/sweating is something to avoid if you're trying to avoid a flare up of the rash.  I don't think the lack of sunscreen would make a big difference considering the time of day.  If during your early morning ride you're sweating and getting overheated, I'd back off until you get this under control.  I've limited my outings to early on Sat/Sun, but it still causes my rash to flare a bit, but it's manageable.   Going during the week in addition to this would be aggravating the rash too much.  Also, be sure to avoid hot showers.  OTC hydrocortisone creams are working to keep things under control for me now.  

[elpasolady]

I forgot...
Susan, thanks for the description of what a severe rash looks like. ( you poor thing, that sounds like HELL)  Too bad you were pulled.

[frijole]

Hey El Paso --

If you can't get resolve from your doctor do find a dermatologist.  If you do, I suggest giving her the insert from the INcevik just in case she is not on top of it.  I did hear a mixed message from you too.  I know you don't want to be3 a bother, but if you want a call-bak be firm.

Starting from Midland on Friday
frijole

[elpasolady]

Thanks for all your input.
First. off, this office is really good about relaying messages.  It is all done by computer, instantly as we speak.  I have requested for her to call me on a couple of other occasions and it took her a couple of days to get back to me.  However those calls were before treatment.
I did basically tell them I was calling to inform, I told her that it was covering a good portion of my body and the girl told me that she would have Dr call me, and put that in the message.  I guess my feeling is that since Incivek is brand new to her, how would she know how bad it is unless she checks in with me?  Or, just to see if I need some relief, even if it is not severe.  This is a learning process for her as well.  If it were me, and I had a patient such as myself, I think I would be all over it.  But that's just me.

IDK...maybe I'm just being too sensitive, but isn't everything all about ME right now. LOL!
I already am a bit leary about her lack of HCV experience and how she will handle issues should they arise.  Her lack of response in this case did not boost my confidence in her. I pretty  much look to all of you for the best medical advice.  Sad,  huh?  We just don't have a  lot of Dr choices where I live.
Just to be clear, presently my rash is tolerable.  This isn't about needing her to call in order to get a presription for relief.....although if she does call, I will ask for one.

Also one more question.. ( sorry , i tend to get wordy...I will work on that..  He he)  
On day two and three of tx, I rode my bicycle in the morning btw 7:30 and 8:30 am without sunscreen, not thinking cuz it was so early.  Do you  think that may have caused this rash to flare up?
I also can not stand the thought of being in the sun right now and the heat does make it worse, even if I am not in the sun.  Can't wait for cooler temps.  we are curren't at record breaking highs righ now.  UGH
Have a great day all..... Be well

[susan400]

Like Dointime, I too, got a severe rash on the Telaprevir on week 2.  And it also was alarming to me.  I was in Prove 3, Group C (the no Riba group), so I knew that it was the Telaprevir (now Incevik) and not Riba.  My arms and chest and neck all looked like I had been dumped into a vat of boiling water.  Blisters, hives, extreme redness and ITCHING.  The creams did little to soothe me, but since I was in a trial, they were limited (at least in Prove 3) to what they would allow.  It ended up not mattering alot because I was bumped off the trial on week 5, based on my week 4-not having enough of a viral load drop.  I was not bumped because of the rash.   Susan400

[flcyclist]

Debbie,
I agree with Trish about hearing a mixed message.   It sounds like you were just informing the doctor about your rash and the staff answering the phone will relay that information as you request.  However, if you need either the nurse or doctor to call you back,  you'll need to request that.  If you did request that and they haven't responded in 2 days, that's not a good sign.  Sometimes the office staff is not the best in communicating messages to the doctor and the doctor is sometimes unaware of the patients attempts to relay these concerns.  

I've had some of these issue with my GI, who has since straightened out some of the communication problems.  He explained that HCV patients are special due to the type of medications they are on and the challenging side effects.  You can still be graceful, but you may need to be very persistant in insisting on getting a call back before the end of the day.   If your doctor doesn't deal with these rashes frequently, hopefully he'll refer you to a dermatologist before it gets to the point of keeping you awake at night.   Best of luck.

[Trish77]

"  I told her office staff that it was not an emergency but that I was letting her know, as I realize it is a commen sx of this drug. "

Maybe it's the verbiage.  If you're just letting her know as an fyi thing and it's not an emergency, are you asking her to call you back....or just letting her know?  Are you actually requesting her input on anything or asking for her advice on how to treat the rash..or just letting her know?   Are you concerned at all?  You might need to be more clear as to what you would like from her.  

[dointime]

I got the rash in a Vertex trial.  To answer your questions, mine stared after 2 weeks of inkivek and was immediately severe, no moderate stage.  I am shocked that your doc would not make it her top priority to give you a callback the same day with prescription drugs to try and control the rash.  Make no mistake about it, this rash can be a showstopper.

You are the only one who can assess how severe your rash is, but I can tell you that my rash was very alarming.  I was very scared at the time because I was never sure how much worse it was going to get, it seemed to change so fast.  

I got through it in the end with the use of Elocon cream, but it was touch and go.  I'd have to say to you - don't hang about.  Knock that doc's door down and tell her to write the prescription or get the dermatologist ASAP!!!!

dointime.    

[crossroadsec]

I guzzled water all day. Took a child's dose of benedryl.  It's all I can ever take cuz ivealways had severe drug allergies. So I'm up after an hour. Grrr. Took a Xanax. I have to be up at 5:30 for work.... I did get out for a lil walk. Heat index 104. I'm jus praying it is Incivik n I only have 5 weeks to go.. I kinda tool over ur post Debbie. Can't wait to hear what ur dr says. I don't have any blisters. Just itching n stinging. Yawn, karen

[curiouslady1]

This is interesting Karen.  I frequently have golfer's vasculitis when walking in the heat of the day.  It goes away in a day or two  and helps to put my legs up and maybe is a little sore but not too bad.  It goes away faster with a little bit of steroid cream.  It appears usually on the inner lower leg above the ankles and can look awful.  I don't think heat is good for you when undergoing chemotherapies.  I know that some chemos, like for mh patients make heat absolutely intolerable.  I am not dosing yet.  I will start a trial on Thursday which may or may not include Ribaviron.  But I do have lichen planus and this makes me have itchy skin in the winter.  Dry skin I think makes most skin conditions worse.  I guess I will have as much water as I can during treatment.