RibaRash Fix Advice and Other Posts

[NYgirl]

I have had the WORST possible case of RibaRash for MONTHS.  Nothing could get rid of it and I was literally ripping my skin off.  My sides are now so scarred from the itching which I even did in my sleep!

For Christmas my 17 yo daughter went out and bought me every single itch relief thing on the market.  It was cute, I have tried them all now.

Anyway - I finally tried one product and now

ALL OF MY RIBARASH IS COMPLETELY GONE IN ONLY THREE DAYS!  

I just had to come in here and let you know it worked for me and I pray to God it would work for those of you with this chickenpox itching scratching nightmare of RibaRash!

GOLD BOND MEDICATED TRIPLE ACTION RELIEF FOR DRY AND ITCHY SKIN BODY LOTION.  It's a green bottle with a red top.  

I showered and then put on a good coat of this stuff and almost immediately the itching stopped which was nice.

BUT NOW THREE DAYS LATER IT IS COMPLETELY GONE! MY SIDES AND LEGS AND ARMS AND BACK ARE CLEAR OF THOSE HORRIBLE LITTLE WELTS!

The other lotions I used were just not as RICH and THICK as this stuff and in only three days.........EVERY SINGLE ONE IS TOTALLY GONE.

I hope to GOD it works for any of you out there. I've been using Aveeno lotion and oatmeal bath and hydrocortizone but that made it better but didn't get RID of it.

I REALLY BELIEVE THAT MOISTURIZING AND HYDRATING YOUR SKIN IS THE KEY AND THIS STUFF WORKED WHERE NOTHING ELSE DID!

Debby

[NYgirl]

For some reason other "liquids" do NOT equate to water.  I was drinking a lot of tea at one point and feeling very bad. Once I upped the REAL BOTTLED water (try not to drink tap water unless it's filtered) I immediately felt right again.

for some reason it's the thing we need.  I'd rather it be iced tea but what can you do it WORKS.

[NYgirl]

Yay for you you've made it!!!!!!!!

Now you see how it can be.  DOABLE!  While it's not bowl of cherries and ice cream on top...as a mommy Kalio is right we've already been there and done that!

How many times has your child had the flu at the same time as you...yet you get up and hold their hand and change their blankets after they throw up etc etc and we make it through that.

Sometimes being a mommy is such an extra blessing and this is one of those times.

I am so glad you are hanging tough.  It's downhill from now on...but make SURE to get the weekly CBCs and watch out for that anemia PLEASE!

Debby

[amommy]

thanks for your message.  things have gone downhill fast around here.  It is still bearable, but the chills and shaking are crazy.  I am about to go take a nap while my girl sleeps.  Here's hoping this is my worst week!  Not sure how i'll do if EVERY week is like this.... :(  Don't mean to be a downer, just need to vent.

[amommy]

You are so incredibly sweet!  This just brightened my day.  You sure know how to make someone feel cared for.  :)

All in all, it wasn't a terrible night.  Exactly 4 hours after the shot, I had the chills like crazy.  My hubby got me every single blanket and piece of clothing that we own and piled it on.  After 2 hours and another dose of ibuprofen, it went away and I fell back to sleep.  Woke up when my daughter did at 730 am and was ROASTING HOT!  Hubby got up with her and I went back to sleep for a couple of hours.  Woke up feeling ok.  I am VERY achey, but I can handle that, and nauseous which is very similar to the 9 months of morning sickness I endured when pregnant :)  All in all, I realize fully that the worst may be yet to come, but I am certainly counting my blessings this morning!
Wishing each one of you a wonderful day today!  

[strator]

Mornin' mam,
As you start your first full day of tx...

Know
You are strengthened-you're a bundle of love and love is strength.

Know
It's all new - like the child you're raising you also have the opportunity to change and grow.

Know
Within 24 hrs you will be experienced. Each days experience will help you the next day.

Know
When you share the load it is not only lighter for you, but also lighter for us.

Know
We are thinking of you today just as you were in our thoughts through the night.

Mornin' mam,
Us

[NYgirl]

I love my Gold Bond.  Another day and no new rash anywhere.  It's like just killed them somehow! I LOVE LOVE LOVE NOT ITCHING AND SCRATCHING ANYMORE! WOO HOO!

Jim I can't believe it's almost over for you you are SO CLOSE it's within REACH!  HALLELUJAH!!!!!  ;-)

Legs are totally stiff lately but probably because I've done NOTHING but lay in bed for the past few days. The BEST vacation I've ever had from work!

:)

The Nurse Practitioner had me take riba in the am on the first day and pm.  So I took three in the morning (when it wouldn't hurt if they made me a little speedy) and two with dinner.  Since I eat more fat with dinner THAT would probably be more logical - but considering in the SLEEP factor (thank God for Ambien at least I fall asleep now even though I later wake a few times) I think taking the most in the morning is best.

But that's only if you have to take a 3/2 combo of the Ribas.

[amommy]

Two riba down the hatch and I'm still alive! lol Talk to me in a few hours after the shot and we'll reassess.  So far so good! :)

[amommy]

since i've been giving you my play by play, just thought I'd share that the first shot is DONE!  Now, my hubby and I are here just waiting.  After taking the Riba, I was EXHAUSTED, could hardly keep my eyes open. No idea if it was from the Riba, or just coincidence.  I was kind of hoping it would give me enough energy to clean my house tonight! lol  
I'm sure I'll be back in the morning.  Feeling rather attached to this place right about now! :)  Thanks to everyone!

[amommy]

since i've been giving you my play by play, just thought I'd share that the first shot is DONE!  Now, my hubby and I are here just waiting.  After taking the Riba, I was EXHAUSTED, could hardly keep my eyes open. No idea if it was from the Riba, or just coincidence.  I was kind of hoping it would give me enough energy to clean my house tonight! lol  
I'm sure I'll be back in the morning.  Feeling rather attached to this place right about now! :)  Thanks to everyone!

[GoofyDad]

FIRE IN THE HOLE!

Welcome aboard the ship of fools!

[bobbyullc]

THANKS A MILLION. MY RASH WAS TERRIBLE AND AFTER TWO DAYS OF GOLD BOND IT HAS IMPROVED A LOAD. I DID HAVE TROUBLE FINDING IT THOUGH AS IT WAS IN THE COSMETICS SECTION NOT THE MEDICATIONS SECTION. THE DESCRIPTION SAVED THE DAY.
BOBBY

[beamishboy]

don't worry...be happy-keep us posted& GoodLuck w/ the side effects(sx)  eat something w/ riba & drink water,water,water......

[friole]

nygirl - think I will get some of that to add to my "collection."  I even got hand creme from my employees because I had been complaining so much.  I also like the really thick stuff.Right now I have on "Miracle Hand Repari" with 60% aloe and it feels good.

ammommy -- so tonight is the night.  Good luck.  I picked up my meds from the pharmacy on a Friday night, popped my Riba at dinner, and took my shot at 8:30.  I had no reactions from the shot, and, in fact, had incredible energy on Saturday.. I hope your first day is like mine.

Rocker -- we all did that-- worry about the sides like crazy right before the first shot.   It doesn't matter.  Your sides will be all yours and different from everyone else's.  I virtually had no sides for the first 12 weeks.  Then came the Ribarash and the hair loss.  Things are going fairly smoothly now, and my hope for you is that they will go smoothly too.  ONly 8 days to go.

frijole

[GoofyDad]

In your case, not sure why it was prescribed,

I remember now, that dropping platelets was part of the equation: reduced chance of stomcach bleeding. That was before my endoscopy, which Doc said was perfect. So maybe I can stop the aciphlex as you suggest. I'll check.

The other thing is if you do have reflux, coffee is one of the prime irritants

Well so be it! I'm not keen on trying to wake up with neither heloglobin nor caffein. One t'other, please.

some suggest raising the head of your bed a foot or so with something like cinderblocks.

Good idea. I'll hook it onto one end of the ceiling swing. Thanks.

[jmjm530]

Regarding the timing -- I was told I could take Aciphex anywhere from ten minutes to thirty minutes before a meal. With Nexium, it's more like 30 minutes to one hour before a meal with the package insert saying 1 hour. That said, I doubt if being a little late with the food is the issue. I'd bet on pouring the coffee down your reclining throat first. Remember, food goes down partially via gravity. The more upright your torso is when digestion starts, the easier for your system. The Europeans have something called 500 steps, I think, and that means a moderate slow walk after eating. This can also help by moving things along/down so to speak. The worst thing to do of course is eat while lying in bed and then go to sleep.

After re-reading your post, maybe you're not ready to taper off yet since you seem to be displaying some classic reflux/hearbutn symptons -- it's a real judgement call. No one really knows the long-term effects of PPIs but I'm sure it's nothing positive. LOL. I've also read there can be some re-bound afterwards but that is debatable.

-- Jim

[jmjm530]

Generally, a PPI like Aciphex or Nexium is prescribed because of either overt symptons of reflux like heartburn or less obvious symptons like a sore throat, trouble swallowing, etc., as diagnosed by an ENT doctor. In your case, not sure why it was prescribed, and yes, many docs don't like people to stay on it indefinitely if you don't need to, although in my case I've been on it for 8 months and still counting.

If it really wasn't necessary to start with then the Aciphex itself may be causing some of your symptons and you should consider coming off it to find out. That's pretty much how the docs tell anyway -- put you on -- taper you off and see what happens.

Aciphex shouldn't cause hearburn but it can cause burping/belching, etc. because it reduces the digestive acid production.

Aciphex was one of the first PPI's I started with and I had a lot of burping. Later switched to Nexium and the burping almost disappeared.

The other thing is if you do have reflux, coffee is one of the prime irritants as well as chocolate and tomato sauce. Lying down within two hours of eating will also make your reflux act up. Stress is another factor.

Dr. Jim :) suggests cutting down to one Aciphex every other day for a week, then to once every three days, etc. until you're taking no Aciphex.

If after two weeks of tapering (that's how long it takes to feel a difference) you start feeling a lot worse, then you probably need to go back on the Aciphex or another PPI for the time being.

In this scenario, you might consider switching to another PPI like Nexium. Each PPI affects people in a different way.

You can also experiment with reducing or stopping coffee and other food irritants. If you have reflux at night, some suggest raising the head of your bed a foot or so with something like cinderblocks. Using a big pillow is actually counter-productive because it will push your neck toward your chest which will make things worse.

On a personal note, recently I tapered off two Nexium a day to one a day but had to go back to two after symptons started appearing after two weeks of taper. I probably won't taper again until after treatment when I feel my body will better be able to
handle things without the Nexium.

Good luck.

-- Jim

[MrsOckert]

I would check with my doctor about when to take your pills.  What I find really interesting is how many doctors do it differently.  I was very emphatically told to do my shot and start the riba the following morning.  Do not start the riba first.  Have no clue why, but followed what they said.

From all the reading I've done the people who have no sides on their first shot seem to be in the minority.  For my experience and many others that I have read keep in mind the FIRST shot will be the WORST. I can tell about my experience AND that it has never repeated itself.

Did the shot at 8:00 pm.  Couldn't feel the needle going on.  Couldn't tell that it really worked.  At 10 I hoped I did it right cause I sure didn't feel anything.  Went to bed.

Woke up at midnight.  Chills and cold so deep into my bones I thought they would break.  Fever of 102.  Horrible headache.  Worst thing I've ever gone thru in my life.  Lasted till 4:30 am and then....just gone...still had the headache till 6:00 pm that night.  Very weak and tired.

Like I said been okay since then.  Never had a shot affect me like that again.  Just keep telling yourself it will never be like that again.

I'll be thinking of you. Valorie

[dutch_boy]

nygirl:  I was so glad to get your advice on the medication for Riba Rash.  I've tried so many things and just gave up on dealing with it as I near completion of my tx.  BUT, I will go out and get what you recommended as towards the end of my tx my skin is just overwhelmed and getting much worse.  As always you have great advice and your care for everyone is wonderful.  Thank you again.  Scott

[GoofyDad]

I was prescribed Aciphlex about 2 weeks into the RIBA - I think just for good measure - or maybe to help with nausea. Anyway - take it I do, about 1/2 hour before breakfast each day. Somedays, it seems I get a gassy stomach, burping up acidy yuckiness, which makes me cough, thus leaking up more of the festering, burning, devil's bile.  

This happens more on weekends, when my schedule is less structured. I'm wondering if acid attack is because I take my pill, then wait more than 1/2 hour to eat. Or that I take my pill then lie down again. Or take my pill with more coffee than I should.

I'm also curious whether the acid attacks are actually caused by some action of the pill - or whether taking the pill incorrectly is the equivalent of skipping it - and I'd be Mr Acid Man everyday if I didn't take the pills.

As I type I think the instructions may had directed me to my Dr before stopping the medication. Does one's body become reliant on the anti-acid?

[jmjm530]

It takes Nexium around 2-weeks to fully activate and vice versa. So you'll know in another week how you're really doing without the Nexium.

Regarding the concept of going off a PPI like Nexium...

The best way it was explained to me -- especially for the type of reflux/GERD I have (LPR) -- is that many of the symptons we have are due to damage of the esophagus/larynx, etc, due to many years of reflux. The PPI then reduces the acid and therefore allows the tissues to heal. Esophageal tissues usually can heal in a month or so, the tissues higher up like the larynx (LPR) can take longer.

In any event, once the tissues heal, that's when you can start backing off the PPI. You'll still have reflux -- most people do as it's a fairly common consequence of digestion -- but because the tissues are no longer raw, there should be fewer or no symptons. Anyway, that's the simple version -- it's actually more complicated and not as understood as you would think even by the med professionals.

-- Jim

[2irish]

i am so glad to hear how much better you are doing.  wanted to ask you about the GERD.  i neglected to fill my rx for nexium and its been almost a week & not too bad.  you said you backed off on your meds a little..can it go away just like that?

[amommy]

I just wanted to thank you all again for your reassuring and kind responses.  I have a call into the doc about when to start the riba today.  I had kind of mentally prepared to take it this afternoon and the shot a few hours after, I'm not sure I can break that thought process at this point!! lol  
You are all so wonderful.  Strator, thanks for the advice.  I plan on doing exactly as you say and getting hugs like crazy from my girl!  Keeping my eye on the prize at this point- just wish it wasn't such a long and potentially torturous process :)

[GoofyDad]

Jim reports: "Right now, just use something at home called the "Total Gym" about twice a week."

Me, I'm watching the Suzanne Summers 'Thigh Master' video these days. We each do what we can.

----------------------------------------------
amommy:  
I was told to be sure to start riba in AM before evening shot. Dunno why - but they made a point of it. Break a leg, sister.

[Moniker]

I'm happy to hear your good news! Your like a light at the end of the tunnel. Gives me hope to see that light.

Bob