Vertex rash v.s. Ribavirin rash; sun exposure - I'm itching like crazy!

[miked]

I'm on week 11 or Prove 3.  I could really use some advice from people who have experieced tx rashes; both SOC and Vertex rash.

About two weeks ago I started itching but no rash.  At first the Gold Bond kept the itching away.

We own a large property and over last weekend I put on sun block 50, but with the 95 degree heat I still wore shorts and short sleeve t-shirt.  Applied sunblock 50 about every hour.

I've developed a rash on my forearms and mainly lower legs.  My ears, face and scalp (thinning hair because of tx) itch but no noticible rash yet.  It doesn't look like the VX rash photos I saw posted here (I think Mremeet posted it).  This rash is contained to where I've been exposed to the sun and looks exactly like poision ivy.

Initially my doc prescribed Atarax, Doxepin (both antihistimines; the latter makes you sleep) and 2.5 cortizone topical cream.  It's not working and I have a call into them to either see me TODAY or refer me to a local dermatologist.

Two questions for you guys:

1.) Because the rash is limited to where I've been exposed to the sun do you you agree with my opinion that it's not VX rash (at least the traditional VX rash)?
2.) Does anyone have any suggestions of drugs and/or topical prescription creams that was effective; so I can ask when my doc or nurse calls back?

Any help is appreciated.

Mike

[VXman]

Please keep us updated - I'm glad you're not as angry (that is the rash). I like your description. Hope it continues to clear up for you.

[mremeet]

I had the full blown VX rash, so I feel for ya believe me. Fortunately my rash meltdown took place in the cooler months, so I didn't have the summer heat and sunshine aggravating the problem. The rash you describe does not sound like the dreaded full blown VX rash, although I've since learned there are lesser variants too.  As has already been suggested, whatever you do just stay out of the sun under any and all circumstances. And if you must go out for whatever reason make sure you're dressed up like an elderly Katherine Hepburn. I just accepted that I had to be a cave dweller for pretty much the whole treatment, there was no getting around it for me.

As far as your question about "systemic steroids", I think what your doctor was talking about is prednisone. Prednisone is an internal steroidal medication (taken in pill form) that is commonly used to control bad allergies like chronic asthma, rashes and serious autoimmune disorders (where the body's immune system actually attacks itself). But prednisone is an immunosuppressant and it can be dicey medication to take over a prolonged period of time (it can have a lot of bad side effects). It's also contraindicated in those with an active HCV infection (or under combo treatment) because it suppresses the immune system. Prednisone has been shown to significantly increase viral loads in those with HCV due to its immunosuppressive effects. You normally would not want to take it during anti-viral drug therapy for the same reason - prednisone would lessen or dilute the immunostimulating effects of SOC, which is precisely what you do NOT want to do, especially in the earlier phase of treatment. There's also another systemic steroid that I know of called solumedrol, which is a powerful steroid administered intravenously. Solumedrol is usually only used in extreme cases where a potentially life threatening situation requires immediate and dramatic relief (for instance, someone brought into the ER with a bad allergic reaction to a bee sting might be given solumedrol).

But, if you really need steroids, they can be taken without necessarily destroying your ability to complete a successful course of anti-viral treatment. I was popping prednisone like candy from a pez dispenser for weeks and weeks and then finally capped it all off with a big jolt of IV solumedrol to finally get my VX rash under control. I thought for sure it would have destroyed my chances of remaining UND during that timeframe. But I would find out later that I remained UND during my entire steroidal junket and throughout the remaining course of my treatment (now 7 weeks post tx). So as you can see, although the steroids are certainly to be avoided if you can help it, it is possible to take a good amount of them and still emerge with an UND status intact. Not sure if I'm going to get my SVR, but hopefully they didn't put the kibosh on that either.

Anyway, based on what you describe, I seriously doubt you need internal steroids. Total abstinence from the sun, potent antihistamines (like atarax), moisturizing creams, and some steroidal lotions (like clobex) should set you straight. Hope you're feeling better soon - enjoy the rest of your trip to SVRsville.

[miked]

Wow...thanks for all of your help.  

My doc is on vacation and called yesterday afternoon.  Based on information I gathered here we discussed many of the option you guys suggested and decided to try a script for Lidex and the Balnetar Bath Oil. This doc is great because he knows I ask the community what's working for any particular problem and isn't offended by suggestions.

I couldn't find the Balnetar Bath Oil at three drug store but my pharmacist said that T/Gel shampoo with 4% is very simiilar stuff so I used it in the shower.

This morning the rash is not as "angry" and doesn't itch all that bad.  If this soesn't work my doc said the next step would be "systemic steroids".  Does anyone have any experience with these?

I just hope it continues to work because yesterday I was a basket case.

My doc also made me promise to avoid sun exposure at all cost for the rest of tx; to be like Dracula.  I told him I'm OK with Dracula but won't do the Michael Jackson routine with the guy following him around with an umbrella :-)

Thanks,

Mike

[orphanedhawk]

I live on a large peice of property and love the sun. I limited my walks to earlier in the day or at sunset. I agree with the others, stay out of it as much as possible.Sunblock isn't enough but I put it on my hands, face and feet, since I love sandals.  I just finished tx but I am still keeping my arms covered and a brimmed hat on my head. Wear loose, soft natural fiber clothes. Kill those nasty tags inside your shirts or  wear them inside out.
  For the itching, take cool showers, stick to products with natural ingredients and no fragrance. My nurse suggests Aveeno products. It may be hard in the summer, but bath as infrequently as possible. I always itched more after my shower.         Good luck

[grammajen]

I wish I could have some suggestions for you but once the rash got going on my body nothing could ease the pain until I stopped taking the medication.  The rash cleared within 12 days - the amount of time it took for the ribavirin to clear my system.  Like Mary55, I was becoming anxious due to a lack of sleep, the growing rash and swelling that was affecting my whole body to the point where I was almost psychotic and couldn't think straight.  In hindsight, if I could have gotten my anxiety under control and got some answers to my questions, maybe I could have continued the treatment to the end as it was only 6 more weeks.  But being an anxious person to start with and not knowing or trusting the process, I bailed.  Since then I have read a lot about people's similar experiences with the rash I had.  Now I need to trust the process as it unfolds whether the virus cleared or not.  Hope you find the answers you need.

[mary55]

My rash started in week 5 with blood spots all over my lower half of my legs. It has traveled throught my body including my face, After 12 weeks I became delerious. I took myself off the pills a week ago and now doing heavy doses of Prednisone.The good news is that I got a call from the hospital this morning to say that I needed to come back for more blood work in two weeks. If the virus was detectable then I would not be going back. But now that I have been asked to go back, it looks like I'm undetectable. This is amazing news considering I'm in the C group. Lets pray that it works and I could be one day SRV. Be careful of that rash, it's nasty stuff.

[VXman]

Sorry for the long website path for information in purchasing "Balnetar": however, it is available through Amazon.com.

Either copy and paste the path or type in "Balnetar" in the Amazon search box:

http://www.amazon.com/Balnetar-Therapeutic-Tar-Bath-bottle/dp/B0000Y3EYU/ref=pd_bbs_sr_1/103-2962416-5970206?ie=UTF8&s=hpc&qid=1184892762&sr=8-1

This is great as an additive to the bath. Read a good book and listen to a little Pink Floyd.

[susan400]

Mike,

NYGirl is right, I did have the VX rash.   I never had a rash during all my other treatments, when I was not on the VX and I was on the Riba, so I KNOW it was the VX and not the Riba.  My rash was very aggravated by everywhere that the sun hit me.  I ordered sunscreen protective clothes online and also wore sunscreen underneath those.  I also wore long sleeves and long pants and a wide brimmed hat.  I limited my sun exposure times to early morning and early evening and stayed inside during the hottest times of the day.  My rash was SO bad on my arms and lower legs.  I had it in other places but nowhere near as bad as those areas where the sun hit and the other areas did not blister up and itch like where the sun hit me.  I had rashed welts on my skin i.e. HIVES.    You absolutely need to stay out of the sun when you are on the VX.    I know that I know that I know that in me this was not a Riba issue as I was in Group C and was not on Riba when this occurred.  Now that I'm off of all my treatment, I can go in and out of my building and ride in my car w/o long sleeves and long pants (T-shirt and shorts) and I do not have the rash.  Most definitely a VX + Sun issue.

Susan

[jmjm530]

He's most probably talking about Balnetar Bath Oil.
http://tinyurl.com/2t7659

It's a good product that will help with itching and perhaps some healing. I used it for my psoriasis on treatment. One bit of advice. Besides the odor (really not that bad) the stuff really stains the bathtub, big time unless you judiciously scrub the tub after each use. Also, I would not use it in a "hot" bath as suggested, but again in luke warm water. Hot or cold water is generally more irritating to inflamed skin. Also, after soaking in the stuff, you do not rinse it off.

All the best,

-- Jim

[HappyDeb]

SELF TANNING PRODUCTS ARE MAKING ME LOOK HEALTHY. JERGENS HAS BOTH FOR FACE AND BODY WITH MOISTERIZER. I USUALLY PUT ON SPF 30 FIRST. I AM GETTING THE RIBBA @ INFN. RASH ON MY ARMS , HANDS @ CHEST. THE POWDERWD GOLD BOND SEEMS TO HELP ME DURING TESE HOT AND HUMID SUMMER DAYS. I LIKE TO REALLY PUT IT ON HEAVY ON THE AREAS THAT REALLY ITCH , AT NIGHT. IT SEEMS THAT I AM ITCHING MYSELF AT NIGHT WHEN I AM SLEEPING AND MAKING THE LITTLE BUMPS BLEED.SO, WHEN I PUT IT ON AT NIGHT I HAVE A GREAT SLEEP. I LIVE IN FLORIDA AND HAVE OUTDOOR ACTIVITIES I LIKE TO DO LIKE RIDING MY HORSE, BUT KNOW DO IT AT 7:30 AT NIGHT UNDER THE ARENA LIGHTS. AND FISHING ON OUR FLATS BOAT WHITCH IS A CHALLANGE  FOR ME AT THIS TIME , SO I PUT ON LONG CANVAS FISHING PANTS AND LONG COTTON SLEEVES A HAT AND LOTS OF SPF LOTION AND NOW TRY TO GO OUT TO FISH WITH MY HUSBAND AROUND 5:30 , 6:00 P.M.. I ONLY HAVE 47 MORE WEEKS OF THIS . LMAO !!!!!!!!!! GOOD LUCK WITH YOUR RASH AND MAY YOU HAVE A SPEEDY RECOVERY.

                                                                        DEBBIE

[miked]

Are you talking about something like a T-Gel shampoo?

[VXman]

I understand your frustration, particularly since you obviously want to get this under control so that you don't jeprodize your participation in the trial. I'm in the trial too and made some hikes in the sierra mountains. I thought I was protected with a wide brim dorky hat, etc...My nurse explained to me that it was the interferon that made me more vulnerable to the sun.

Here's what I did to sooth the skin and help heal: I used a liquid bath additive that is very dark in color. It actually has tar in it. You pour it in the hot bath at the spout as it is filling. It doesn't smell that great: however, you will receive a tremendous relief. It is originally designed for people with skin disorders such as eczema and the like. I'm at work so I don't have the name of the product. It is OTC. Just ask the pharmacist and they'll point you in the right direction. Please try it, I'm glad I did

[JodyLynn]

I have a tanning bed, does this mean i should sell it when i start treatments? lol

[jmjm530]

Elocon Cream is a mid-strength steroid (the ointment is potent-strength) and should be used carefully, ideally under the supervision of a dermatologist, and no more than as directed. Also, absolutely do not use it on your face unless under the direct supervision of a dermatologist. Re moisturizers and soaps, I found the Cetaphil products very good, with the Cream Moisturizer, the mildest. Also try using only loose-fitting all-cotton clothing (white preferably) washed in a mild, non-perfumed detergent. Bathing should be in lukewarm (not hot or cold) water, and for as brief as possible, followed by the moisturizer. Towel dry very gently.

-- Jim

[jmjm530]

Mike, first you either have to stay out of the sun as completely as possible and/or cover-up as much as possible -- large brim hat, shades, long pants and long sleeve shirt and face mask if you don't mind scaring the children and dogs. Sun Block simply doesn't cut it for enough of us, regardless of how many "SPF" the bottle says, which btw can be VERY misleading based on some recent reports that point out some rays may be unaffected by many of the products. One of the best is the "Blue Lizard" line with Blue Lizard Baby being a good one as it has less chemicals. Still, use with but not as a substitute for covering up. One rule of thumb is that if you hold a fabric up to the sun and can see the sun, then it's not going to protect you 100% from the rays. This website has some sun clothing that may be of interest: http://tinyurl.com/2s7aya  On a personal note, I was unable to tolerate the sun for much of treatment and for many months after. As to what to do re your current rash, going to a derm is the right decision, but even the derm's may underplay the sun issue as most are not familiar with riba/telaprevir, etc.

All the best,

-- Jim

[dointime]

I've had both the VX and the riba rash.  The riba rash was worse on my sun-exposed skin.  With the VX there was no difference, it was horrible everywhere.

The only thing I found which worked was Elocon cream (mometasone furoate 0.1%).  I apply a derm moisturiser like Aveeno first, then the cream on top so that I can spread it thinly.  I do all the afftected areas once a day and the bad bits twice.  Also use a bath emolient and a soap substitute called Dermol 500.  Also never expose any skin to sun or bright light, no matter how hot.  You should find that 95% of the current rash has stopped bothering you within 1-3 days, but I my case new bits kept flaring up in different places making it a long drawn out affair which isn't over yet - but I'm winning.  

I think the riba must have a cumulative photosensitizing effect on some people's skin so that what was OK last week might not be OK this week.  I seriously underestimated this side effect and paid for it.    

Good luck.        

[nygirl7]

Susan400 had the same problem as you when she had sun exposure.  I've not taken VX and only had the dread ribarash (which is how i discoverd the gold bond...out of sheer desperation I tried every single medicine that was anti-itch in the pharmacy, literally).

I dobelieve Susan (who's takenEVERY treatment known to man for HCV now including Inf, consensus Ifn, vertex....) felt that it had a lot to do with sun exposure (remember you know even with CLOTHES on sun supposedly does get through) aggravating the Vx-rash.

Hopefully she'll come on and tell you.

I don't have any words of wisdom - I Just wanted to say sorry, this just sounds DREADFUL and I really feel for you.

(PS I tried treating my rash like it was chicken pox cause that is what mine felt like...might as well get some potholders out and tape them to your hands like on Friends)