Just starting to understand

[nelh]

Hi all

Going to offload see if it helps. On week 8 tx on trial also telepriver/placebo.Previously coping ok expereincing fatigue, irritation (mental and anal) but managing. Geno type 1 not sure with regards to blood levesl (new to this) know hg around 10 ish

Havent slept past two nights, ithch every where, wont stop, all I do is itch, itch itch all night. Wanted to cry but just couldn't, really frustrating tried all creams even read posts and tracked down on Aveenoo. prescribed
citrizine 10 mg
eurax

Have a rash also over and legs (mostly on arms) Small bumps, varying in size, when itch can get bigger at times, then red, can flare up, can scratch till they bleed, at times arms feel hot. Learning the massage tecnique, works well (NO) Had rash since first week , but past two nightsh the itch has not allowed me to sleep past two day's, day and night, night and day.
Have another slightly differnt rash on side of hip seems it is more redder, but small bumps also. Doesnt itch as much. the itching is just every where (varies). Not slept for two days
Just had to get that out guys.

  thanks !!!!

Back to docs today, given a different antihistamine piriton mg x 4 daily and betamethasome for the rash. Walked to Dr was thinking due to the (anal itching) walking little faster, had to laugh.
Give this a go, if it where to continue,was thinking "I cant go on". I get hope reading your expereinces has kept me going. Maybe on the drug, week 12 just after new year.

Sorry if this sound a bit all ove the place, sleep deprevation. Take my shot tonight( learning the lingo) hope this helps
( I am that crazy) HAAAAA
Thankyou all and wish you all well

God Bless

Nelh (ithch)

[nelh]

Hi all

Thankyou all for the support and goog advice. Just tool off some ice packs there,eased the heat for a while. Still itching, but see some slight relief.

Spoke with Nurse today who arranged an appointment with the dermatologist, who was fantastic.
prescribed some Elecon and Hydroxyzine.

Looking forward to taking it this evening : ) zzzzzzz Hopefully.

Seems the rash and itching has slightly eased, she said it may not go for around two weeks. Just wasnt a few hours sleep.

Thankyou all for the advice again. if I hadn't stumbled across this forum and read some of you guys expereince I may have thrown in the toweL. I an so grateful, health care here is free and I appeaciate been given the opportunity.
Learming a lot which I hope to pass on to freinds that aren't aware about making an informed  choice about treatment.

thanks again

Nelh

[Isobella]

Sorry to hear you're still awake and itching.  

Sometimes I find heat makes everything worse.  I have gone so far as to use small ice packs on the worst areas of itching.  It will help ease the inflammation if nothing else.  I also keep my house really cool-especially at night.  

Good luck....keep us posted.

Isobella

[epiphiny]

Perhaps you could get some strong sedative antihistamines to help with the itch and also with sleeping?

I use Phenergan here in NZ, which we buy over the counter.  As you are in Scotland, I wonder if you might have the same product?  The active ingredient is promethazine hydrochloride.  

I used to itch terribly in the beginning and those were the only things that helped me, and they also helped me get enough sleep.

You really need to keep up with your sleep to ease the sides and keep the fluid intake up!

All the best

Epi :)

[nelh]

thanks!!
you keep me hanging in there, third night no sleep at all, due to itching

Nel

[Isobella]

I have to agree....the schedule of the triple therapy was hard because it had me staying up too late and waking up too early.  (honestly...one or the other, please, lol!)

I never got really bad with the rash because benedryl helped-especially at night because it also made me sleepy.  Now I take atarax-only my scalp itches now- because it doesnt dry me out like the benedryl.  Aveeno baths in tepid water and loads of lotion have kept everything at bay and my skin only mildly alligator like. I don't wash my hair often anymore and have a deep conditioning treatment once every week or 2.

That irritation drove me crazy for the first 12 weeks....it came on suddenly with the first dose and left just as suddenly after I stopped triple therapy--so I hope its days are numbered for you as well. Yes, walking was almost as much fun as driving. lol!

Hopefully things will get better for you in 4 weeks when you are on only the peg and the riba with no placebo/trial drug.

Wish you the best,

Isobella

[Fl_Gator]

hang in there...you said you are in week 8...don't worry it gets better after the triple therapy is over...then you only have to take the riba. You don't have to take the riba at any particular time of day as long as you are getting the doses spaced adequately apart.

I took a suggestion from another member and took the riba with breakfast and then at dinner.

For me...before tx I would go to bed between 8:00 and 9:00 pm and wake around 5:am...the triple therapy part of the trial really disrupted my normal sleep pattern. I was exhausted and that makes everything harder. You only have 4 weeks left and you will get some relief very soon.

As far as the itching...I didn't have the rash...but I did itch and found relief in  a nice shea butter cream...sometimes there isn't much you can do about it...but that may also get better after the triple therapy is over.


Gator

[nelh]

Hi

Betamethasone is a cream, use sparingly. Not sleeping due to the itch, just wont stop. Your right, the telepriver rash is pretty bad, but other side effect's can be itching/ rash. Thinking it may be the riba can go crazy wondering just not sure, thinking its this and that, maybe something I ate haa.
Just want the itching to stop, keeping me awake there all the time day and night.
Nurse said my bloods are fine.

See how I go

thankyou.

Marcia
Will try the coconut oil

Nelh

[sunshine585]

I wasn't on telaprivir, but my rash was as bad as your's sounds. I had it head to toe, fortunately, my face wasn'ttoo bad, also had hives. I totally understand how you feel! I used to use a hairbrush and scatch til I bled, (try not to do that). The various things I did were: Goldbond anti itch in the green bottle
         cool cloth   Benadryl antihistimine which I couldn't take during the day as I had dizziness. The rashes and hives came and went throughout tx, but I found after a few months, the flareups weren't always as bad. I used Aveeno bath too. I hope you find something to take the edge off, good luck to you.

[lapis]

Well, you know that I have most of the side effects you have, except for the rash.  I do have the itching, and little bumps which pop up here and there, but so far no true rash.  You may know that the Telaprevir rash is pretty notorious, though not everyone gets it.  If your new regimen doesn't include the Telaprevir, your rash should start improving on its own.  Don't know how long this takes, probably different for everyone.

Is your betamethasone prescription a cream or a pill?  This drug is a steroid, not sure if you're familiar with it.  If it's a pill, your rash may be better very very soon.  If a cream, it still should give you more relief than what you've been using.

Did you talk to your caregivers about the sleep deprivation?  I'm not familiar with piriton, but generally antihistamines do have the effect of drowsiness.  If you continue to have such difficulty sleeping, it might be good to ask for a medicine to help with sleep.  I'm sure I'd be going a little nuts if I'd gone for 2 days without sleep!

Keep me posted, friend.

[Marcia2202]

I'm so sorry that you have such a hard time. I think you got the real deal though, with those sides you are mentioning.

Have you tried using virgin coconut oil with the itches, it has been helping a lot of ppl. Especially with the wiggles, the itching which makes you walk faster...

I don't know what to suggest concerning sleep deprivation, as I never had that problem.

I'm wishing you all the best... People will chime in soon, there are a few who have been on the Tela trial.