Re: Dick? Sheila? Anyone? Steroid Withdrawal?

February 9, 2011

Hi everyone!

I have a question about the symptoms I've been having for the last 3 weeks

or so. As much as I've tried to dismay it thinking the symptoms will go

away, they've only gotten worse!

I had a really bad flare around Christmas and although I've been on

steroids DAILY for the last 3 years, in December I had a high dose of IV

solumedrol. I've been tapering slowly since then. I'm down to 9mg per day...

5mg

in the am and 4 in the pm.

My symptoms in the last 3 weeks are: EXTREME fatigue. To the point of

not wanting to get out of bed, sluggish movements, etc. TERRIBLE headache.

So bad that I've taken 4,000 mg of Tylenol per day to try to get rid of it.

Severe Nausea. Muscle aches and joint pain. I have 3 herniated discs

in my lower spine but while on high doses of steroids I felt no pain. Now

the pain comes back with a vengeance! Of course I have the moon face and

stomach fat from the 3 years of steroid use but now I'm hardly eating for a

lack of appetite and I'm not losing weight. My blood pressure is high, my

pulse is extremely high (104-127)... and my blood sugar is extremely low.

(50's-60's). Now on top of all of these physical symptoms, I'm having

major issues with depression, lack of interest in anything, disorientation and

confusion and terrible mood swings.

I know you guys aren't doctors but you're all so well informed and you've

been through this. I just put a call into my specialist to see what he

thinks might be going on. I know my body and although I've been to hell and

back recently, I'm definitely feeling worse and not better. Are these signs

of Cushings? Is it just steroid withdrawal? Did any of you who weaned

off of prednisone experience any of this?

I should be excited... my first dose of Xolair is on friday... but I'm

completely numb to anything exciting as I can barely function at this point.

Thanks, as always, for your help!

xoxo,

In a message dated 2/8/2011 3:00:20 P.M. Eastern Standard Time,

sheilabiss@... writes:

All the best. I am very excited for you.

Sent from my BlackBerryÂ® smartphone

-----Original Message-----

From: _heartabrasions@..._ (mailto:heartabrasions@...)

Sender: _ _

(mailto: )

Date: Tue, 8 Feb 2011 12:18:01

<_ _ (mailto: ) >

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(mailto: )

Subject: Re: [ ] Re: Angioedema, Urticaria, Delayed Pressure

Angioedema/Xolair

Hi Diane and Addy,

I have Urticaria, Angioedema, Delayed Pressure Angioedema and mild Asthma.

My IgE levels are through the roof but I don't have severe asthma. I was

approved for Xolair and I start my injections on friday.

If it weren't for this group, I would have spent many nights alone

fighting

this disease. I also would not have found out about Xolair had it not

been for you guys! I'm praying it works for me because so many of you have

had good results.

My promise to you all is this: I will keep you informed weekly on my

progress, what medications I'm taking, what I will be able to wean off of

and

any side effects that may occur.

I hope that my experience will prove to help anyone out there suffering

from this disease. Many times we all have felt alone in this disease....

there isn't much help out there and family and friends sometimes (although

they

probably won't tell us) get discouraged and disheartened by our diseases.

I always feel guilty for even complaining anymore. You have all been my

rock. I hope that I can return some of the help you have all given to me.

Thanks to Doug, Addy, Jeanne and to all the others out there who

continually send good thoughts, send us links, fill us with knowledge and

for

creating this group. Finally, I'm not alone anymore

For Diane.... My angioedema lasts quite significantly longer than 45

minutes. Usually 24 hours. It's quite scary when it's in my mouth or

throat.

The ONLY thing to help me at that point is high IV doses of steroids

and/or

an EPI pen. Your son has an EPI pen, doesn't he? I'm praying the Xolair

takes away the Urticaria AND the angioedema as well for me. Both are very

debilitating. He is not alone in his suffering! I hope that the Xolair

soon kicks in and gives him the cure he needs! Some people have gotten

results immediately and some have seen remission results after 3 or 4

months of

injections. I'm guessing each of us are so different, the results have to

be different as well. Think positive thoughts... and never, ever give up!

My best to each of you!!

In a message dated 2/8/2011 10:37:07 A.M. Eastern Standard Time,

_anagnos19@..._ (mailto:anagnos19@...) writes:

Thank you. Please keep me informed if you hear of anyone having Angioedema

and asthma and their results while taking the Xolair.Much appreciated!

Diane

--- _In_ _

(mailto:In_ ) _

(mailto:_ _

(mailto: ) )

, " pyle456 " <jamcculloch2@...> wrote:

>

> We've had some group members with allergic skin conditions report

substantial improvement in those symptoms with Xolair, but I don't know if

any of

them have angioedema specifically. I hope that Xolair will help your son!

>

> Addy

> Group Co-owner

>

> --- _In_ _

(mailto:In_ ) _

(mailto:_ _

(mailto: ) ) , " anagnos19 " <anagnos19@> wrote:

> >

> > My son is 16 years old , has allergic asthma, multiple food,and

environmental allergies and suffers from Ideopathic facial angioedema(lips

and

mouth). He has been suffering with these symptoms for the past3 to 4

years.He

has 2-3 episodes of the angioedema a day along with asthma symptoms daily.

He has been on multiple antihistamines and inhalers without relief. When

an Angioedema episode happens he must take 25- 50mg of benedryland apply

ice

to his lips. Each episode lasts 45 minutes to an hour.Sometimes the

swelling goes into his airway and he then has asthma symptoms. He has been

unable

to attend school due to the frequecncy of his symptoms. He has received

his first injection of Xolair this past January. I was wondering if there

are

any others that have been suffering with angioedema with asthma and have

taken Xolair. Does the Xolair help decrease the Angioedema symptoms as

well

as the Asthma symptoms? How many treatments of Xolair are needed to see

improvem ent with the symptoms?? Any information would be greatful! I

would

like to see my son back in school with friends!!

> > Thank you!

> >

>

February 9, 2011

>

> Hi everyone!

>

> I have a question about the symptoms I've been having for the last 3 weeks

> or so. As much as I've tried to dismay it thinking the symptoms will go

> away, they've only gotten worse!

>

> I had a really bad flare around Christmas and although I've been on

> steroids DAILY for the last 3 years, in December I had a high dose of IV

> solumedrol. I've been tapering slowly since then. I'm down to 9mg per

day... 5mg

> in the am and 4 in the pm.

>

> My symptoms in the last 3 weeks are: EXTREME fatigue. To the point of

> not wanting to get out of bed, sluggish movements, etc. TERRIBLE headache.

> So bad that I've taken 4,000 mg of Tylenol per day to try to get rid of it.

> Severe Nausea. Muscle aches and joint pain. I have 3 herniated discs

> in my lower spine but while on high doses of steroids I felt no pain. Now

> the pain comes back with a vengeance! Of course I have the moon face and

> stomach fat from the 3 years of steroid use but now I'm hardly eating for a

> lack of appetite and I'm not losing weight. My blood pressure is high, my

> pulse is extremely high (104-127)... and my blood sugar is extremely low.

> (50's-60's). Now on top of all of these physical symptoms, I'm having

> major issues with depression, lack of interest in anything, disorientation

and

> confusion and terrible mood swings.

>

> I know you guys aren't doctors but you're all so well informed and you've

> been through this. I just put a call into my specialist to see what he

> thinks might be going on. I know my body and although I've been to hell and

> back recently, I'm definitely feeling worse and not better. Are these signs

> of Cushings? Is it just steroid withdrawal? Did any of you who weaned

> off of prednisone experience any of this?

>

> I should be excited... my first dose of Xolair is on friday... but I'm

> completely numb to anything exciting as I can barely function at this point.

>

> Thanks, as always, for your help!

>

> xoxo,

>

You are right, we are NOT doctors. Just patients looking for answers just like

you In 1968 when they diagnosed me with a fairly rare eye disease I wanted

to be an eye doc but all that biology and math was too much for me.

DO, ask your doctor for advice and share with him/her what you have seen on this

board and let us know what they say.

Sounds like steroid withdrawal to me. Those drugs help us breathe but the side

effects are just plain ol nasty! We call Prednisone " Evil Candy " in this group

sometimes.

After a year of xolair (Sept 2003-August 2004) I was able to completely get off

of prednisone and steroids. I did have some with withdrawals and some GOOD side

effects like weight LOSS

Now that steroids are completely out of my system I am feeling great!

Once the xolair has kicked in and the " roids " are out of your system you will be

able to live a more normal life.

Just to remind you.... It takes some people up to a year or longer to see any

results from xolair. It took me over a year. Patience is the key

Doug

Group founder

February 9, 2011

Not too bad for me.

Sent from my BlackBerry® smartphone

-----Original Message-----

From: " Db " <uca79iii@...>

Sender:

Date: Wed, 09 Feb 2011 18:13:51

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Subject: [ ] Re: Dick? Sheila? Anyone? Steroid Withdrawal?