Itching/Rash Hell

[researchmonkey326]

Well, it has come to this for me.  I really don't have a question, just commenting that this sx really sux.  I have tried everything that anyone has suggested except Atarax and Benadryl which are not allowed in my study.  I started a Medrol Pack last night so hopefully it will calm things down.  It is mostly in my scalp which is tormenting me and tempting me to tear my hair out or shave my head.  I did not get the losing weight sx which I would have preferred.  I'm still open to any suggestions that I haven't tried as I suppose once I am off the steroids, the itch will return.

Otherwise, doing okay. One reduced dose of INF and then back up to normal dose the week after because my neutrophils rebounded.  Now on weekly bloodletting which is not great when one has no veins.  Keeping the prize in sight through all of this, though, and looking forward to seeing another UND at Week 12.
Debra

[copyman]

If you want relief take my advice and ask your primary doc to prescribe atarax.

[researchmonkey326]

Oh, Sherri, you guys too?  You are the third person in this trial in the last day or so to tell me the itchy scalp and rash are getting them too.  One is considering dropping out because of it.  My hair was thin to begin with but worse now.  All that rubbing/scratching has made it worse.  The itch is definitely my worst sx right now.  My hgb is still over 12 although I have had some dips in WBC and neutrophils. I did shot # 12 tonight - UND at week 8.

[sherritaylor12]

Hello it is Sherri here, both my husband and I are on the same study.  We take shot 16 Wed. both UND (me at week 4, him at week 12).  Having terrible rash!!!! all over but now in head and ears and neck.  Even worse I am loosing all my hair.  I have always had long red hair and have donated to locks of love five times (wish I had one of those wigs now).  Went Friday and got my hair cut very short but it is still falling out by the handful.
They are allowing me to take benedryl on this study as well as, zertic, so be sure and ask again about the benedryl. It does seem to help.
My husband hgb is now 10 and he is experiencing severe shortness of breath and fatigue.  My hgb has gone up to 10.5 this week so am better in that respect.
I am glad you sx are not as bad although the itch is madening. Let me know how you are doing.
Sherri

[neptune235]

Two words:  topical steroids!

I had crazy scalp itch last time, and "Scalpicin" over the counter would knock it out pretty quickly, although I had to dose several times a day.

For other skin areas, i used a prescription preparation called Pramasone 2.5 Cream -- it's a stronger corticosteroid (2.5% vs. 1% like the OTC brands) plus a topical anesthetic called pramoxine.

Good luck!

[researchmonkey326]

Screaming 48- Don't forget that I added steroids to the formula so we now have roid-riba-rash-rage!  

IMstacie - yes, mental, is the perfect word! I thought about the lamisil but now will try it.  The other thing I'm thinking is maybe the whole thing is yeast based and yogurt would help.  I had an ear infection once that just would not be cured.  Ended up to be yeast originated and antibiotics and everything else was making it worse

This will be the 4th day on the steroid pack and the head is not driving me completely nuts but still itchy.  The rash that I have elsewhere really does not itch except a few places randomly.  It is ugly but I don't care about that and I got the face redness pretty much gone.  My research coordinator asked me yesterday if I was going to be able to make it another three months.  I do feel like I have some challenges and it is not easy but I am still functional, working my normal 10-12 hour days, looking more than presentable at work, my energy level is decent and really, it could be worse.  When I read about people that can barely get out of bed, have terrible muscle and joint pain, turn anemic, I know that most of us are going to have some sx and we just need to hang in there if we possibly can.  This forum really does help because not only do I get advice and ideas but also know that others understand how crappy one can feel even when it's not that bad.  The ones that have gone before us through 48-72 weeks of SOC and fought to get to that UND just to relapse, turn around and try treatment again remind me how lucky I am to have a 24 week trial that seems to be working.  So yes, I can make it -  with a little help.
Thanks, all.
Debra

[IMstacie]

Mental is definitely the word for that horrible rash.  I had it bad and thick on every place but my hands, feet, & face.  I used lamisil on my head - same ingredient used for althletes foot is in this cream and does the trick.  It has to be lamisil.  Nothing seemed to work on my skin.  the only relief I got was temporary from Curel healing lotion.  good luck to you.

[Mary4now]

:You may want to try Argan oil, it has a huge amount of vitamin E and is used for the whole body, nails, hair.  look online at a moroccan spice store.
good luck

[screaming48]

I am truly sorry you feel so bad, but I did have to laugh at Now excuse me while I go smash something, omg I do that with PMS will hate to see it with sx and pms I will need a padded cell.

[Mary4now]

so sorry you have such nasty sx's.  Hopefully you can end the treatment sooner and that these sides subside.  
good luck
Mary

[researchmonkey326]

The coal tar shampoo has not worked for me either and that's what that smells like!.  I am at the end of the third day of steroid pack and am roided out -hate this feeling -numbing myself into a stupor sounds attractive right about now.  The scalp is just now starting to feel relief but what happens after the roids are out of me?  I suspect it will start all over.  I am going to ask about the Clobex- thanks for the hint.  And anyone that has experienced the torture of the devil's scalp itch, understands the gun in the mouth half-joke.  Now excuse me while I go smash something.

[mremeet]

We were allowed to take atarax during the Telaprevir trial. It's a fairly benign drug, as drugs go. I took atarax by the handful at one point to control my itching. But honestly, I didn't think atarax was that much better than benadryl. The main objective was to drug myself so I was basically in a stupor and was numbed to everything. Benadryls were pretty good for that all by themselves.

But insane scalp itch? I was prescribed a lotion and shampoo called Clobex. Clobex is a potent prescription steroidal lotion that really helped with itchy hot spots on my skin. I scratched the eyebrows right off my face and most of the hair on my scalp too. And then the itch traveled into my ear canals. I'd put a small amount of clobex on a Q-tip and dab it inside my ears to calm the furious itching. Probably not supposed to do that, but hey - it beats a gun in the mouth. Haha, sick joke, but only half kidding.

I also tried coal tar shampoo for severe psoriasis (can't remember name offhand) but it didn't really work for me, plus it made my hair smell like railroad ties. Anyway, I'd look into some of the Clobex; it should help with the worst stuff.

[copyman]

Ask your regular doctor to write a scrip for Atarax and don't tell anyone. This is your life and you have every right to not suffer. It will not harm the study in anyway. FYI, I was in a Telaprevir study and I was allowed Atarax. If it could harm you or cause the study data to be tainted they wouldn't have given it to me. For some reason this new study is very strict. Don't worry they will never test for it. Damn I'll even send you some if you want.

[screaming48]

crap I'm so sorry bout the rash! But glad about the und. Hang in there thinking good thoughts!

[researchmonkey326]

Like Will said - not Telap but Gilead trial - Tegobuvir and one unnamed drug (GS-9256) along with SOC assuming I am getting study drugs.
The gold bond has worked best on the skin - it really does give me relief.  Also, I am taking Zyrtec which is allowed and has kept the hives at bay.
No auto-immunes although I have a few markers for them - been thoroughly tested though and nothing shows thankfully.
I'm going to try that paste of oatmeal bath treatment on my head.  I've already tried every kind of shampoo available otc for dandruff, psoriasis, dermatitis, etc.
I will have shot #12 coming up and if all continues as is, I am on track for 24 weeks total treatment so halfway there.
I've heard the rash from the Telap and Boce is really rough but at least if you aren't in a study, you can take the drugs - atarax and benadryl.  That might make all the difference.
Thanks all for your kind advice and thoughts.  Back to Dr. tomorrow for more bloodletting - hoping the ANC is still up so no more dosage reductions.  I've managed to avoid the neupogen too.

[JAY0914]

im 4 weeks into Telap trial...having dry patches skin here and there but lotion makes them go away....i have crazy itching when i wake up from sleep in the middle of night...its all over and pretty intense....the hot shower thing will make the itch go crazy, feels good at the time but after the shower...OMG....got to stay on benedrl every 4 hours of the the nightime to keep from going crazy...during the day not a problem...weird

[SusieS2010]

LIke Charm said, be careful of the showers. Hot water causes histamines to be released and they really make the itch much worse. I hope you feel better soon. There is nothing as bad as an itch from a drug.

[willbb]

Hi frijole   Debra is not on Tela..she is in the Gilead trial .  Just thought i would chime in.  :0

Will

[frijole]

I hit the wrong button - didn't mean to submit already.  I am trying to draw my own conclusions on who will get the rash and who won't but there is no way to tell, from everything I have read.  I am sorry you are one of the victims.  If you are on week 12 does that mean you are almost done with the telaprevir?

frijole

[frijole]

I presume you are on telaprevir.  Did you have any kind of autoimmune issues before you treated?  psoriasis,  crohns, celiac, graves, thyroid issues, lupus, rheumatoid arthritis,

[mremeet]

What drugs are you taking? Are you on Telaprevir + IFN + riba?

[charm27]

Fantasic new on your UND. You must feel wonderful about that. I had itching all thru tx but did not have a rash.  I also have a severe case of hair loss which the doctor gave it a name but I forgot. The itching was temporarily relieved by Gold Bond Cream. I had no rash. Water made it worse for me...I wasnt able to shower everyday because of it...had to shower every other day..that was a task in itself being I was so weak.

I scratched by head constantly it was filled with flakes  on my head...my arms and legs was covered in gold bond for 55 weeks. Not easy.

I hope you get relief.
Charm :)

[NorthIdaho54]

First, congrats on your UND. I'm very sorry about the nightmare rash though, I also had the rash migrate to my scalp during tx and I know that it can be unbearable at times.

Not sure if you've tryed this or not, but I got some relief from making a paste out of a package of Oatmeal bath treatment, applying to wet hair/scalp and leaving it in for 10/15 minutes.

I also cut my nails down so I wouldn't do more damage to my scalp for those times I couldn't help but scratch and limited shampooing to 2x a week.

Hope you find what works best for you!

-Rhonda

[nygirl7]

I'm sorry Debra that it's that bad. i only had the regular rash and it made me mental, the only thing that helped me was the Gold Bond but I am sure my rash was much less than yours and mine was on my trunk not my head.  It's going to sound really silly but did you try using that shampoo for dandruff maybe it has something it in that moistens the scalp. That is how I always thought it worked anyway.

I'm sorry I can't be of any more help I nkow it's hard try and stick it out day by day and just let those UNDs add up like gold coins.

Deborah

2 Debs :)