Creepy skin itches and heat on Triple Therapy - Any suggestions

[Happyhungry]

Beginning week 11/12 on PROVE2 triple therapy. Any advice appreciated on skin crawlies and overwhelming body heat. Only have 14 days to go till unblinding and realize I have to tough it out.  Still, if anyone has found some way to reduce body heat and constant itching - would welcome advice. I'm talking megaheat so you cant wear anything even though you are simultaneously shivering and your head boils, your eyes ache, you're dry as a bone all the time but nothing seems to hydrate - even though drinking water constantly and showering often. Goes on all the time but worst at night, so no chance of sleeping

[ladybug52]

I'm not in a trial, I'm on SOC, shot 15 will be this Friday. My hot flashes, night sweats and no-see-em itchy spots just keep getting worse. I drink fliuds all day long, hydrate with moisturizer and continue to wake up with dried out eyes and tongue. I scratch spots raw, but the skin is not dry. I get armpit itches, pelvic itching, scalp, stomach, arms, feet and elbows. My legs so far are not effected. I hope someones has some advice, I was going to ask about this today also!
Good luck, misery is suppose to love company, but I am sorry any one else has to put up with this.

[APKhaos]

We feel your pain, man! Most of us have felt it, or similar.

There are several types of rash that can cause torturous itching. If you can, see a dermatologist. My rash was diagnosed as atopic dermatitis, which is an allergic reaction caused by one or more of the tx drugs. One of our truly special posters, Hepatitis Researcher, posted here that the VX-950 molecule has some characteristics that could cause complications with allergic reaction, which was consistent with mu diagnosis.

Some topical corticosteroid cream cleared the rash and stopped the itch in around five days. Blessed relief.

Others in Prove 1 have had much more serious rash issues, some of which caused some subjects to drop out of the trial. Sounds like you are on the home stretch, so try the dermo first up.

[nygirl7]

it is a very common problem while even on combo treatment.  I did find that in time it did diminish.  Keeping my skin COVERED in moisturizer (I found that Gold Bond Medicated Triple Threat Anti Itch was the one that really stayed on the longest so it worked the best) helped a LOT with the itchies.

Unfortunately, I never found any "cure" for the night sweats and heat flashes kind of problems.

I think it's just something we have to tough it out over.

[ladybug52]

Could u see a rash? I itch and there's nothing there, except redness after clawing my skin to death. I itch on my stomach which I have always heard is associated with liver disease. Been using the gold bond forever on your recommendation, can't figure out why it's suddenly getiing worse.

[nygirl7]

You know half of the time I couldn't see ANYTHING at all but all of a sudden I too would be just ripping at my skin it itched so bad.  Then it would be too late to look cause I'd look down and see ripped skin and blood.

I still have what I guess are scars on both of my hips that look like HUGE BLACK bruises.  I guess where my pants rubbed (I think it was actually the rubber band in my underwear) it was a cause of making it worse or something.

I also tried using the same stuff that we'd use on a kid with poison ivy or something that stuff (GOD why can't I remember the word right now...I guess brain fog afterwards IS a possibility!) ah hydrocortizone full strength .1 for the times it got atrocious.  Topical cream so it didn't cure it but it did help the itching for a little while.  Novacaine for the skin ;)

Have you seen a derm doctor? When I got the rash on my face nothing could have helped it - I kept trying and trying and it got worse and worse and it turned out to actually be a condition caused by the IFN...so the Gold Bond and other moisturizers NEVER would have worked.

Oh doy! Duh! Why didn't I just ask sooner!  I just was too lazy and tired to want to go to another doctor you know? But it was WORTH IT! :)

God it's horrible isn't it?  It's simply maddening.  I still have some bad spots even today but generally it seems to be finally abating.

God Bug you are such a wonderful person you don't deserve this AT ALL.

I hope to God that somebody can help you find some relief - and soon!

Debby

[3txsofar]

Evening primrose oil helped me with the rash when on IFN and RBV.  You cqan buy capsules in most health food or vitamin stores.

Keeping up the fluids was also critical.  I noticed that if I didn't get my full 2 litres the rash would be worse.

[3txsofar]

The mayo clinic is seemingly supportive of evening primrose for skin conditions.

http://www.mayoclinic.com/health/evening-primrose-oil/NS_patient-Primrose

[mremeet]

Wow sorry to hear this, because I know exactly how you feel - it SUCKS. There was no easy fix for me, I'm still struggling along with itchy dry skin. But here's what I would recommend:

1) Only use the mildest soaps and shampoos during your shower. Also try to shower as infrequently as possible, and keep the temperature of the water as cool as you can take. Frequent long hot showers will dry your skin out and make you ITCH. Also, you don't have to wash your hair every day, try just a few times a week to let some of your natural oils build up and protect and soothe your scalp. (hygienically speaking, this won't be your finest hour...but if it helps reduce the itch, who cares?? ;-)

2) As soon as you get out of the shower quickly pat yourself dry (don't aggressively rub with the towel), and then slather a very mild (no alcohol or fragrances) moisturing cream over everything. Make sure to apply the lotion before your skin dries out, it must be done very quickly after getting out of the shower. This seals in the moisture thats been temporarily hydrated into your skin during the shower. Reapply the moisturizing lotion again in the evening (some people even apply it three times a a day).

3) There are steroidal topical lotions/creams that can really help with rash and itch. I've been sparingly using Clobex, which is a strong steroidal lotion. Clobex also makes a shampoo which you apply to your scalp and let it stay on there for 15 minutes before showering (I leave it on for 30-45 minutes though). These two things can really help manage the itch and rash, but heed the warnings concerning usage (do not put it on your face, groin or armpits).

4) Here in the states we have a powerful prescription antihistamine called Atarax (also called vistirile or something like that). It's commonly prescribed to HCV patients (especially those treating), as it's relatively liver friendly and non-habit forming. Atarax also has an anti-anxiety effect to it. If you take enough of it, it will settle you down and help with the itch. It will make you tired, but that can work in your favor when you want to get some sleep. I didn't like feeling tired all the time, but it sure beat feeling the full fury of THE ITCH. It worked pretty good at taking the edge off, see if you can get it where you're at (or whatever the equivalent is in the UK). I also use benadryl alot too (an OTC antihistamine), it's good before bed because it makes me sleepy and also helps take a little off the edge of the itch. (makes you ragged out in the morning though)

5) Prednisone would probably really help with the rash and itch, it had the power to turn off a powerful drug allergy (caused by the VX). But unfortunately it's an immunosuppressant, so you'd want to avoid it if at all possible (especially since you're only doing 12 weeks of treatment).

6) Lastly I noticed that if the room temperature I'm in just barely goes above a certain temperature, I feel that insanely itchy prickly heat sensation kick up out of the blue. I turn down the heat and crack the door open (now that's it's cold outside), and the cool air really helps to settle my skin back down. Drinking hot coffee and tea (or nearly any hot beverage) also seems to exacerbate the itch. I've found it's important to keep my body temp cool as much as possible to help subdue the prickly heat thing from getting out of hand.

Otherwise I'd suggest talking to jim. He's our resident "skinologist", and is very knowledgeable about all the ins and outs of skin conditions and treatments for them.

Anyway, hope you're feeling better soon, believe me I know exactly what you're going through. Just count your lucky stars you get to stop in 2 weeks, you'll be there soon enough. Hang in there, you're gonna make it!

[jmjm530]

Good skin care points above and I'll try to add a few without repeating too much. Like Mre suggests, treat your skin like you would a little baby. Be soft, gentle and don't use anything harsh. Instead of soap try Cetaphil mild liquid Cleanser. It can be used with and without water and sometimes water itself can be irritating and ironically drying.

For laundry use non-perfumed detergents or gentle soaps for babies. Rinse twice. Best to have loose cotton of silk garmets next to skin. White preferably. Every time I put something synthetic next to my skin I started itching. Still happens sometimes today, one year post.

As to topicals, often less is more. Many OTC products, contain just too many irritants for very sensitive skin. I was told to use Cetaphil Cream Moisturizer and even with that not too often. This is even gentler than the Cetaphil Lotion which I now use. Shower in luke warm water, pat dry gently, never rub.

Alternative remedies that you might try by introducing SLOWLY are tea soaks using soft cotton wash cloths soaked in a solution of luke warm Roobios Tea and Water. You can buy Roobios tea at most health food stores or under the name "African Red Bush Tea" at Starbucks although Starbucks add some stuff. Roobios is also fine to drink and has no caffeine. You could also try same with Camomille Tea. But again, less can be more, so experiment by adding things slowly and not overdoing. Lastly, see a good derm if you can find one. Lots of us, including myself, have found them difficult to work with but often quite necessary. I went through six or seven on treatment.

Hope you feel better soon,

-- Jim

[Willy50]

Happy;  From what I heard you may not have an actual "rash" where the skin is broken or disturbed but you may be pre-rash.  All the suggestions MREmeet offered are good and will help but some of the issues caused by interferon, ribiviren and the new unknown Teleprevir may not be cured with these.  However, if you follow them they may help mitigate increased damage.  Some people also report that "scratching" with a soft brush helps keep the damage to a minimum.

You might consult with a doctor on a few of these issues;  a dermatologist may offer some relief from symptoms.  If you can keep the issues from developing you may have greater success than attempting to treat a rash after it has "bloomed"

If you are having excessive "heat" issues are you monitoring your temp thru the heat and simultaneous chills?  Are you making this known to the hospital/clinic and asking for suggestions?  Although many sleep or pain aids are not liver friendly you might find that something analogous to Tylenol PM may; help you sleep, reduce fever (if that is related to the chilling) and possibly reduce the itching (either the sensation or the actual scratching of your skin even as you may be sleeping).  Sometimes you have to balance less than liver friendly drugs against keeping sides down and maintaining a degree of comfort while on TX.  A sleep aid may be merited.

You might also invest in a fan while you sleep and they also make portable fans.  Keeping a source of very cold water or ice with you as you travel may also help.  A spray bottle (that mists) in conjunction with your portable fan may also provide temporary relief and increased cooling.

I hope that the dropping of TVR helps with this issue in 2 weeks.  

Make sure that if you consider the potential toxicity of any drugs (sleep, pain, derm, heat) you add to your regimen.  Some sites list evening primrose as a substance to be counter-indicated if you have liver disease.  On the other hand if it helps but is only marginally counter-indicated it may just be worth it to get you through the next few weeks.  (keep in mind the symptoms may not just end at week 2)

http://www.medicinenet.com/evening_primrose_oil-oral/article.htm

best,
willy

[Happyhungry]

Thanks very much for the very detailed tips.  I think I learned quite a bit.  Was doing lots of stuff wrong.  Much appreciated as ever.

[miked]

Johnson and Johnson baby oil shower gel felt great on my rashy spots.  

[prettydamscared]

Wow, what you are describing is exactly what I had on triple combo therapy.  The creepy crawly feeling seems to be universal during the vertex phase of the trial.  My study nurse told me the other day that a woman that doesn't even own a computer, so she certainly didn't hear that expression on line, desribed it as exactly that.  Also, you're one of the few peope that i've heard describe the feeling of being hot all over.  My skin was hot like I had a terrible sunburn all over my body.  Caused chills, and fever.

Mremeet and others gave you excellent suggestions.  Try and stay away from anything with fragrance.  I used big tubs of Aquafore although it makes your skin so oily.  Just know that slowly, very slowly upon completing the vertex portion of the combo, your skin will return to a bearable stage. it's still pretty awful and I'm dreading spring coming cuz these arms and legs aren't gonna be exposed to the light of day, but MUCH better than when I was on the vertex.

I got a prescription from my derm which had to be compounded.  It was simply cetaphil and clobetsasol creme.  You can get it at Walgreen's or probably anywhere.  Really seemed to help.

Good luck, Charlotte

[3txsofar]

I hope some of the suggestions above help you.  One I didn't see mentioned is the heating of your house.  Most people can get very dry skin this time of year simply from all of the hot air flowing from the heating system.  It might help if you are in a cold part of the countryto turn off the heating system and bear the cold.

Also, just to clarify, you said you were on triple combo therapy and that it would be unblinded soon.  Are you then on a placebo controlled study and you may or may not be getting VX950?

[nick m]

hi
missed you today but look forward to seeing you in 2 weeks time for the unblinding. This is a minor and possibly ineffectual suggestion in view of the severity of your symptoms but peppermint tea and peppermint oil capsules do seem to alleviate body heat and they're acceptable within the trial. Like you i'm counting down these last days (and trying not to speculate on the outcome). At least no-one's dropped out of our group. All my bloods are fine and i'm just weary all the time, arms buzzing intermittently like nettle rash heart labouring lungs pounding just doing the stairs today to the trials centre (4th floor). we just spent 3 days in Venice and i had to keep sitting on benches to recover while my wife wandered round the shops. Now i know how dirk bogarde felt. best wishes nick m