Re: Checking in!

[Guest guest]

,

The cruise sounds wonderful!!

Glad you were approved for Xolair and the cancer is gone!

Did you tell me earlier that you were seeing Dr. Fanta today? How did it go?

I saw my doctor last week and the Xolair is working for me. I can stop

taking the pred " when I feel ready " . So I have been doing every other day

until the 3rd when I get my next shot. Then I will stop altogether. This was

the best Christmas present I got!

Christmas was very good here. I love seeing my nieces and nephews open thier

gifts. They get so excited, especially the little ones.

My sisters and I gave my Dad and his friend a 4 day trip to DC in April. He

is very excited about. I used some of my frequent flyer miles to get his

ticket for nothing which made the trip affordable for us.

I love cooking stores and got a gift certificate to Crate and Barrel. I am

looking forward to picking out my stuff.

I've been an vacation this week whcih has been nice. I am renovating my

Dad's house to move back in with him. I am adding a new kitchen, I love to

cook! So we went to Boston Kitchen to see about a design and pick out

cabinets and granite for the counter tops. We go back Tuesday to see thw

design they came up with. Today I took a niece and nephew to Lowell for

another niece's birthday party. They range in ages from 9 to 3 anf play very

well together.

Let me know what Dr. Fanta says and when you are getting your first shot. It

took 3 months (shots) for me to notice a difference, my doctor says he

noticed a difference after the first shot. I am breathing better than when I

come home from the hospital and having IV steriods! Some people it has taken

up to 6 months before they notice a difference. Just be patient with it.

I wish you a very Happy, healthy, asthma-free New Years!

Cathie

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

From: Currier [mailto:redsoxkitten@...]

Sent: Thursday, December 30, 2004 5:22 PM

Xolair_users

Subject: [ ] Checking in!

Hi all!

I just wanted to check in with you as I haven't done so in a while now.

Good news! I got approved for Xolair!

Bad news... I don't know yet if I can take it! I have to discuss it with

my

asthma doc because of my recent troubles with cervical cancer. Which, I'm

happy to report (GREAT NEWS!!!) was completely removed with minor surgery!

I'm doing ok as far as URI's or flare ups. I got sick this past week (the

entire HOUSEHOLD did, PLUS my mom and sister!) but it didn't cause any

lung

trouble! HOORAY!

Christmas seemed to go off without a hitch, and I'm looking forward to the

cruise that I'm taking at the end of January. On the 23rd I head to Ft.

Lauderdale, and then on to Miami... I'll be gone for a week on a Royal

Carribian cruise ship docking in two of the Bahama islands and Key West.

We

ll have one final night on South Beach in Miami before heading home. I

can

t wait to breathe some different... WARM... non pollinated air!

Hope this finds everyone well!

Love and Hugs ~

[Guest guest]

hi jennifer,

its terrific to hear you've come so far on the xolair!!!! isn't it an amazing

feeling to get your life back?!?!?!!

congratulations again jennifer! i hope to hear more success stories soon!!

heather

Currier <redsoxkitten@...> wrote:

Hello everyone!

I thought I'd send in an update, as I recently had my six month Xolair

review.

My doctor and I discussed the changes that I've noticed since I began

treatment. I'm not as perfect as I'd prayed for, but I am healthy enough to

finally start weaning off of prednisone! I've been on 60mg/day for almost

two years, and I've been on some dose of it daily for seven years now. He's

going to schedule a bone density test, to see how much if any damage has

been done there. Once I get down to 30mg/day he's going to be doing

frequent bloodwork and carefully stepping down in order to re-awaken my

adrenal glands. And the best part is, he said that he thinks I'm finally

stable enough to begin allergy shots!

I've attempted allergy shots twice in my life. Once in my teens and once

about five years ago. Both times, I had horribly bad systemic reactions to

incredibly small doses. Both doctors kept diluting the doses, and I kept

reacting. Finally, they threw up their hands and said that it just wasn't

reasonable for me to continue. Now, with six months of Xolair in my system,

my doctor thinks it is reasonable and safe to begin with extremely small

doses and work my way up. He's convinced that I absolutely NEED the

immunotherapy in order to get my life back and be capable of working again

someday.

I'm glad to say that I'm finally sleeping through almost every single night

without needing my nebulizer, and while I still need albuterol every single

day, I'm finding that one or two quick puffs of an inhaler is sufficient as

opposed to sitting through a full nebulizer treatment each and every time.

That's such a major stride for me! I'm able to leave the house with just an

inhaler in my purse instead of packing my neb into the trunk. I can finally

sleep with my oxygen tank in the corner of the room instead of right next to

the bed! Such welcome changes! I'm only needing Albuterol once or twice

per day as opposed to the literally countless times of my past.

I've been hospital stay and ER visit free since MAY, and that is a HUGE

accomplishment for me. I mean HUGE! True, that stay in May was 6 days in

Intensive Care, but to have made it this long without another major flare up

is nothing short of miraculous.

I've told my doctor about this group and how much help it has been to me.

He was thrilled to hear that such a thing existed and offers his praise to

Doug for founding it and to all the others who offer sound advice and

calming words! He said that it was a wonderful idea and was truly thankful

that I had a place to voice my story and hear how others are faring!

So I'll add my thanks and praise to his, and let you know that I'm thrilled

to be a part of this group and a Xolair patient! I hope everyone continues

to have positive progress!

~

Haverhill, MA

[Guest guest]

-

Thanks so much for posting your progress! I am glad that you are

doing so well. I know it's been a slow go - your story gives hope

to those who are taking longer to see improvement on Xolair or who

have farther to go.

Take care,

Addy

>

> Hello everyone!

>

> I thought I'd send in an update, as I recently had my six month

Xolair

> review.

>

> My doctor and I discussed the changes that I've noticed since I

began

> treatment. I'm not as perfect as I'd prayed for, but I am healthy

enough to

> finally start weaning off of prednisone! I've been on 60mg/day

for almost

> two years, and I've been on some dose of it daily for seven years

now. He's

> going to schedule a bone density test, to see how much if any

damage has

> been done there. Once I get down to 30mg/day he's going to be

doing

> frequent bloodwork and carefully stepping down in order to re-

awaken my

> adrenal glands. And the best part is, he said that he thinks I'm

finally

> stable enough to begin allergy shots!

>

> I've attempted allergy shots twice in my life. Once in my teens

and once

> about five years ago. Both times, I had horribly bad systemic

reactions to

> incredibly small doses. Both doctors kept diluting the doses, and

I kept

> reacting. Finally, they threw up their hands and said that it

just wasn't

> reasonable for me to continue. Now, with six months of Xolair in

my system,

> my doctor thinks it is reasonable and safe to begin with extremely

small

> doses and work my way up. He's convinced that I absolutely NEED

the

> immunotherapy in order to get my life back and be capable of

working again

> someday.

>

> I'm glad to say that I'm finally sleeping through almost every

single night

> without needing my nebulizer, and while I still need albuterol

every single

> day, I'm finding that one or two quick puffs of an inhaler is

sufficient as

> opposed to sitting through a full nebulizer treatment each and

every time.

> That's such a major stride for me! I'm able to leave the house

with just an

> inhaler in my purse instead of packing my neb into the trunk. I

can finally

> sleep with my oxygen tank in the corner of the room instead of

right next to

> the bed! Such welcome changes! I'm only needing Albuterol once

or twice

> per day as opposed to the literally countless times of my past.

>

> I've been hospital stay and ER visit free since MAY, and that is a

HUGE

> accomplishment for me. I mean HUGE! True, that stay in May was 6

days in

> Intensive Care, but to have made it this long without another

major flare up

> is nothing short of miraculous.

>

> I've told my doctor about this group and how much help it has been

to me.

> He was thrilled to hear that such a thing existed and offers his

praise to

> Doug for founding it and to all the others who offer sound advice

and

> calming words! He said that it was a wonderful idea and was truly

thankful

> that I had a place to voice my story and hear how others are

faring!

>

> So I'll add my thanks and praise to his, and let you know that I'm

thrilled

> to be a part of this group and a Xolair patient! I hope everyone

continues

> to have positive progress!

>

> ~

> Haverhill, MA

>

>

[Guest guest]

I want to be on the list of people not wanting to have asthma

anymore! Also, I want to be on the list of people who've never had a

sinus headache!!!!!! Last Saturday I thought I was going to be in bed

FOREVER.

Hang in there with the slow pred tapers, folks. You need to be

careful and give your adrenal glands all the time they need to

recover. You will still have plenty of time to enjoy your pred-free

life, because you will have twice as much energy to enjoy it!

Take care, all,

Addy

[Guest guest]

-

It can be very difficult to wean off pred. My main symptom was

terrible fatigue. I would be fine and then all of a sudden this

wall of fatigue would wash over me and stay on top of me for hours.

Pred was also masking early signs of oncoming arthritis - for me,

aches in my right hand and foot. This runs in my family, so I'm not

surprised to see it popping up and I'm only in my late 30s.

I hate allergy shots. But we all have to try them don't we? It may

be that Xolair will keep you from having bad reactions, I don't know

about that one.

Again, I'm so glad you are getting control of your life back. I

hope the dexascan results aren't too bad. Be sure to let us know

how things go.

Addy

>

> Sorry I'm so long in responding to these posts, but things got

hectic around

> here. My daughter's birthday is Jan 18 and mine is Jan 19, so

there was a

> ton of chaos, surrounded by cleaning house for a slumber party and

family

> party for her.

>

> Thank you so much for your kind words and encouragement Addy. I

truly could

> not have gotten this far without all of you!

>

> Coming off of the prednisone is really scary. I'm experiencing

horrifying

> mood shifts despite being on an antidepressant and anti-anxiety

meds. I

> seem to have no appetite, almost constant nausea and bowel trouble

as well.

> I have to remind myself to eat three meals a day and sometimes

have to take

> a phenergan before hand so that my meals won't come back up on me

if the

> nausea is bad. I'm also going through terrible muscle and joint

aches.

> Seems like every time I drop the dose 24-48 hours later I wake up

so sore I

> feel like I've gotten the flu. Even my SKIN seems to hurt some

days!

>

> My bone density test will be scheduled at my next Xolair

appointment

> (Tuesday) and I'm dying to know the results. I had terrible

kidney and

> bladder trouble as a child and had chronic UTI's. I had surgery

when I was

> five to correct a birth defect, but my family and doctors were

always

> pushing cranberry juice and water on me, so I know I didn't drink

as much

> milk or get the calcium I should have as a child. Add the

steroids to that,

> both pred and solu-medrol in all those hospital stays and it

equals " YIKES "

> in my mind!

>

> I am also a bit nervous about the allergy shots. I'm hoping the

Xolair

> saves me on that one. I've tried immunotherapy twice before in my

life.

> Once at age 14 and once again at age 24. (I just turned 30 last

week) Both

> times they had to stop because I was having systemic reactions to

incredibly

> small doses of the allergens. But, my doc thinks it's worth a go

and he

> said that there are different serums out there and it's possible

that the

> base caused the reactions to be worse.

>

> So.... one day at a time, and I'm just going to continue being

thankful for

> each day my neb goes unused!

>

> Thanks again for all of your support!

>

> ~

>

> -------Original Message-------

>

> From: pyle456

> Date: 01/20/06 19:33:27

>

> Subject: [ ] Re: Checking in!

>

> -

>

> I LOVED reading every bit of your letter. I am so happy for you.

> You have made HUGE gains. Thank you for checking in and letting

us

> know how you have progressed!

>

> I, too, had really terrible symptoms coming of prednisone.

Because

> I had been doing short term tapers, I didn't expect it to be that

> bad. But 2 tapers per month for well over a year is still a lot

of

> pred.

>

> Absolutely get a bone density test. I got my first one at 36 and

> already had bone loss. If I have any more loss show up, I'll have

> to start bone-building meds regardless of whether or not I've hit

> menopause.

>

> Congratulations on sticking with it and even more so on starting

to

> get your life back.

>

> Addy

>

> FYI - I never did great on allergy shots. Absolutely worth a try,

> but you may not notice any difference. On the other hand, they

may

> be very helpful to you.

>

>