bouts of itching

[Mister beagle bailey]

First would like to say hi to all my friends and hope that you all have a Happy Holiday.  This is a joyous time of year for many but there are some who are alone and sick and having a hard time dealing with the holidays.  I hope we all remember them as we celebrate this season of hope and joy.

Well my question is, I have been 6 months post tx and get bouts of itching all over my body.  I have tried may meds but nothing helps.  While treating I didn't have this problem, I was itch free. Is anyone else suffering that is post tx?

Beagle

[worrywartwife]

You may have tried this-I put a vaporizer by my husband's bed and it helped a lot with his itching. He also crawls into a warm tub weekly and after a long soak we pour in some bath oil or mineral oil to seal in moisture, then put on the green & red gold bond cream and then some 100% cotton long johns to let him "absorb" all that. I also double rinse his clothes and sheets in the wash. He is 18/24 and his itching is pretty well controlled with this protocol. Best Wishes, JoAnn

[GrandOak]

In short, yes!

A month and a half post tx now and I get frequent bouts of itching, mainly on calves, ankles, and feet although I've had milder episodes elsewhere on my body.  Sometimes it is associated with some mild swelling of one of my ankles.

However I also experienced this towards the end of tx, but then again my VL was increasing then, leading to my being yanked from tx as a nonresponder, which I pray is not related.

[Pdilly]

Well hello there I was just going to email NYGIRL or JMJM to see of anyone had heard from you and poof...here you are.  Glad you checked in.  I have not experienced to many of the itches yet.  I now have a small spray bottle of baby oil in the shower and lightly spray myself after I dry off.  I am drinking usually the 10 - 12 cups of water a day.  Somedays I do allow my self a diet coke but alot of times I don't even finish it.  I guess I just wanted a sip or two.  
Hope you have a wonderful Holiday.

Pat

[FlGuy]

Hi Val. TX is going ok. It's a familiar path and knowing what to expect is an advantage.  Switching from PegIntron to Pegasys seems to have made a positive difference. Some seem to tolerate one better than the other. Kids are well, exam week so it gets a little tense - me being on riba is not a calming influence.  I'm glad to hear that you are coming 'out of it' and I hope you continue to feel progressively better.  Enjoy the holiday Val.

[NYgirl]

Girl how you doing?????????  I was just talking about you the other day - saying how you helped save treatment for me!

Do you know - I didn't look until later on (I'd never noticed) that you dosage of the peg was double mine? I had taken both of them and it wasn't until after that I noticed that my box only said 80 on it - the two you sent were 150 hahahahahaha!  I freaked out when the new boxes came in and didn't say 150 on them, I thought they made a mistake!

I'd prefer MORE rather than LESS - luckily...the sides didn't double too!  :)

I figure I got a little peg bump during those two weeks.

Isn't that a hoot? I'm so glad I didn't know or I would have been all "oh I'm DYING the sides are so BAD" what a hypochondriac I really am!

;)

So glad to see your name post today!

My little lifesaver how have you been?

[APKhaos]

Get a referral to a good dermatolgist. There are several distinctly different skin conditions that the tx drugs can kick off, all under the general heading of unbearable rash and itch.

A dermo can identify and treat what you have. FWIW, my rash adn itch were truly the worst SX of the entire treatment. I suffered with it for months, until my wife literally made an emergency appt with the dermo. He identified the rash, prescribed a topical steroid to clear the rash and a strong antihistimine tab to control the allergic reaction. The problem was completely cleared in 10 days. Blessed relief!!

[MrsOckert]

Oh Gawd, Debbie!!  I didn't even think about the difference in dosages.  I'm glad you didn't have any increased sides.  Man, I'dve felt sooooo bad.

You actually could have gotten 4 doses out of them.  If you had injected half the dose and stored the rest in the fridge.  

But you like flirting on the edge of over dosing, dont'cha????  :)

Gotta go....back later

[sfbaygirl]

Maybe you just have a few flea bites? My critters are getting ticks. Those are nasty things. I have itches without a rash at times, on tx, I use that gold bond and it helps. Is it worse than that? I can't imagine having an awful rash like the vertex one. It would drive me batty (er?) Hope you're doing well!

[Mister beagle bailey]

hi there, I used the gold bond durning tx and had no rash.  Have been off tx 6 months now and about 6 weeks ago I started itching but no rash.  It comes and goes but I will see about ticks on my next vet visit.  LOL

How are you doing and what's new with you?

Beagle

[sfbaygirl]

Had a consult with the goofsters dr. He is recommending I extend for 60 weeks....Thread below on my consult. A bit crazy, but when all is said and done, I sure don't want to relapse b/c I didnt' go long enough...Spent a few days in the city shopping for me, forget gifts for others! I ordered all those online. It is nice to get out of the house once in a while. The crispy, clear weather has been great. Rain a comining....Good to hear from you!

[Mister beagle bailey]

Good for you, shopping for your self.  I'll be in southern Cal the first week of Jan and can't wait.  I wish I was able to treat longer then the 24 weeks I did.  But with my thalassemia it was not doable.  So how long will you do tx?

Beagle

[jmjm530]

Glad you're getting some relief but be very careful of using Cutivate on the face for longer than a two-week course. Like other topical steroids, it can not only cause thinning of the skin but steroid rosacea which trust me you don't want to get. If he hasn't suggested it already, you might want to ask your derm about switchihg to Elidel Creme once the eruption subsides a bit. Elidel is not a steroid, comes with a black label warning but most derms prescribe it liberally, even for young children. Curious, did you ever get a diagnosis from the derm? Last stop your doc didn't think it was psoriasis and we were guessing here maybe seb derm, contact/allergic dermatitis, or some combination.

-- Jim

[MrsOckert]

How are sides going this time?  Easier cause you know what to expect or harder because you've already done it once?  How are the kids doing?

BB - sorry to hear of your itching.  I'm 4 months post and all of my symptoms seem to have cleared up.  Got my energy back.  No skin problems.  Had to increase thyroid meds up to 175 but that seems to be helping.  

I would second NYgirl and suggest a visit to a derm.  It does seem to be warranted.  

NYGirl - how goes it, sweetie?  Are you getting by okay?  I think about you often.

[Mister beagle bailey]

And Jim- Hi guys how are you guys doing?  The itching I'm having comes and goes and it started about 6 weeks ago but no RASH.  Saw the doc and he thinks it's a post tx sx and has know idea how to treat it.  LOL  Maybe I need to see a vet????

Beagle

[APKhaos]

Its a good Christmas for a few of us, at least.

Finally got the VL data from the start of the trial up to week 20. VL went from 28,400,000 on the day of first dosing to UND is just over 2 weeks. Stayed UND since. Just two more shots to go until the end of my 24 week TX.

What surprised me most was the way my family and close friends reacted. They were far more worried about all this than I had realized. I guess we can underestimate how much this Tx deal effects those around us. Its already a very happy holiday season around here:-)

Celebrate your UND, man. The itch will pass. Be strong, healthy, and happy as a clam!

[Mister beagle bailey]

Glad to hear your UND  and that your on your way to SVR.
In my case I was UND till 2 months post tx and then relapsed,  It was a surprise to my drs. too, as I'm a 2B with a starting VL of 317,000.  I'm going to wait till something kinda comes along before retreating as I have thalassemia and the riba does a number on me.

Merry Christmas

Beagle

[cajunlady]

Oh my, it is so nice to see you surface again, been awhile.  I am 1 month post and I do get some itching.  I think it has to do with the weather and (guilty as charged) not enough water intake.
I would see a derm doc, see what he/she has to say.  Mine comes and goes too.  Mine are worst with the Santa Ana winds blowing, there is no humidity when they blow.
Hope you get some relief for that.

HOPING YOU AND YOUR FAMILY A WONDERFUL HOLIDAY SEASON!!!!!!!!

CRAZY CAJUN

[susan400]

I was at the derm on Tues. about the post-tx itching.  No rash.  She did a skin biop to be safe.  She prescribed me the Allegra.  She wants to see me back on the 29th to go over the path and to see a copy of my labs, which I picked up today.  She was wanting to know what my Thyroid level turned out to be and if I started on the right dose and to see what the rest of them showed, like the LFT's.  My LFT's weren't THAT bad all things considered with being a non-responder and all.  Still under a 100 on both the AST and ALT, but not in the normal range.  AST = 91 and the
ALT = 83. With me only taking 1/2 a dose of the lower dose Synthroid, my thyroid is pretty normal range at 2.62.  My sodium stays consistently low, as does my chloride.  My doctor got on to me about drinking too much water.  I CAN'T WIN!!  Could that cause my itching?  Fasting glucose was 102, still falling in acceptable range even if it's on the higher end of normal (according to the Intern. med. doctor).  All things considered my labs aren't terrible.  No explanation for the itching other than stopping tx.  There's no rash.  No soap or shampoo changes.  

Susan

[bobbyullc]

try a bath once in a while....enjoy nyc.

[friole]

oops -i mean beagle

I have been off treatment for 4 months and all the tx itching stopped after about 2-3 months.  Now I have been having itching again, but I am pretty sure it is just the dry heat of winter doing it.  Do you get dry heat of winter down there in sunny FL?

Glad you are doing okay.  What are your plans - made any yet?
I haven't - am waiting a few months to decide what direction to take from here.

frijole

[susan400]

In Fla. where I'm at, it's been TOO warm for the heat, so dry heat isn't it for me.  I'm still running my A/C.

Susan

[mremeet]

I've been dealing with rashes during my treatment and have a bit of experience with it at this point. Bottomline is if the rash isn't caused by a fungus or something unrelated to "post-tx syndrome", and it is a psoriasis-like AI type reaction, then a steroidal lotion will almost certainly help alleviate the itching. When you put this stuff on you can feel it working, your skin starts to tingle and even burn a little in some cases. But it does its magic like nothing else, and quickly too. You don't want to use it unless you really need it, but when you need it...you NEED it.

As others have pointed out there are precautions for the use of steroidal lotions, and you only want to use the minimal strength and duration as required. Your liver doctor should know about and approve of its use and your prescribing derm should know you have HCV. Also, I take atarax which is a pretty potent antihistamine that might also help. It's commonly prescribed to HCV patients, as far as I know it's fairly safe. It does make you tired and is considered a mild anti-anxiety med too. But that can work in your favor when you're trying to sleep.

[Mister beagle bailey]

Thanks guys, now I know I'm not alone.  Tghe docs can't figure it out either. LOL What else is new!!

Canjun, I'll be in your area the first week of Jan viisting our son as he just bought a new house.

The area in Fl I live in doesn't have dry air.  I'm starting to believe that it's one of the post sxs that will in time  leave for good, I hope.  It appears that there are many here with the same  problem.

So how is everyone doing?  Any thing new ?

Beagle

By the way, I did have a flea dip and that didn't help.  LOL

[FlGuy]

It's good to see you surface every once in a while.  Have you kept up your tx water drinking habits?  Maybe increase the intake a bit. With our dry season here, and the warm weather, it's almost easier to become less hydrated this time of year.  Keep the Beagle Bowl topped off and visit it often. Hope you continue to do well. I'm in week 8, only 38 to go.  What's happening with the move?