New to the group!

[Guest guest]

--- In , " akohli87450 " <akohli87450@y...>

wrote:

> Hi guys,

>

> I am new to the group. So I would like to introduce myself. I have

> had asthma all my life, well as long as i can remember. I have been

> on every steroid that you can imagine and off it also lol! I am

only

> 31. I take predizone, pulmicort, combinet, singulair, bextra. My

> problem in the

> last 5 years has been rib cage pains (chest tightness). The

singulair

> has controlled my wheezing and the combinet helps me with the short

> of breath. I am not too sure if the pulmicort works, but it seems

to.

> My wife who is a pharmacist, says it is in " my mind " when I don't

> take my medication and start to panic.

>

> I started taking xolair late last october. My IGE level varied from

> 700 to 1300. So the doctor started me on the highest level every 2

> weeks. At first it was great. As soon as I took my first injection,

i

> felt better in a few hours. I would feel better for the first week

> and then at the end of the two weeks, I felt that as if I was

gasping

> for the next injection. I never really felt any major side affects

> early on. Once in a while for a whole day I would feel naucious for

> the whole day.

>

> Then in december, i started to get serious headaches and backaches.

I

> did not know what it was. I went to the doctor and he tested my

blood

> pressure. It was 155/101. I felt as if i was going to explode

inside.

> He quickly put me on Atacand and i seem to feel better now. He told

> me that my history should over the last year i used to

occassionally

> get high blood pressure but nothing serious. Then almost

immediately,

> I seemed to have developed it. Early on, I got extremely nervous

and

> scared and thought it was the Xolair. But he told me that he has

not

> heard of or knows of any side effects of Xolair. Does anyone else

> feel this way?

>

> I have been on Xolair now for almost 6 months. Whilst on Xolair, I

> eliminated my predizone completly, i reduced my combinet to 1 puff

a

> day (from 2 puffs upto 4 times daily). I tried to eliminate the

> singulair and pulmicort. But my wheezing came back alot.

>

> Then I got nervous with the Xolair recently because of the high

blood

> pressure. My wife found out, that is a rare condition called

> Pulminory Hypertension. Which basically means asthamatics who

suffer

> from high blood pressure. Here we go again lol! Nothing to do with

> Xolair though.

>

> Well, I spoke to my doctor and he suggested coming off the Xolair.

> That was 4 weeks ago. Since then, the number of puffs i take from

> combivent have gone up, and also the pulmicort. Last sunday I took

> the prednizone again, which really got me depressed.

>

> I am now considering of going back on the Xolair again. The blood

> pressure has not changed.

>

> I would really appreciate feeback from this group to see how they

> feel, if they feel the same after taking Xolair?

>

> Doug - I just want to say thank you for starting this group. I have

> searched the net for a long time, and this is the only group I have

> found.

You are most welcome and also a big WELCOME to the group.

Thank you for sharing your story. You have found the ONLY place on

the net for people on Xolair.

Doug

[Guest guest]

Hi Doug,

thanks for the invite. I thought i would join the group with a bang

Anyways, has anyone ever gone off Xolair and then come off it?

Also, does anyone feel that when they take the injenction that after

2 weeks they are gasping for the next dose?

Doug, how long did you take the injection before you felt the effect

or started to feel the effects?

[Guest guest]

On the 10th I sent the message below to the group, but it did show-

up!!! Don't know what I did wrong!?

I was diagnosed with RA about 9 months ago. Rheumatologist started

me on 15mgs of Methotraxate in combination with prednisone and this

worked for me.

About 1 month ago I went completely off the prednisone but the pain

started again. Two days ago I called rheumy and he placed me back on

prednisone but the pain hasn't gone away. I can't remember , but may

take awhile for it to take effect. Are any of you on this

combination of meds?. All my joints are effected by this: shoulders,

elbows, wrists, fingers, knees, ankles, feet. The bottom of my feet

are getting calluses and it's very painful to walk.

I also suffer with neck & back pain..an x-ray of the back showed a

couple of the disks are degenerating. Rheumy said back problems have

nothing to do with RA!.

3 days ago I ended up at the ER with the strangest feeling in my

throat (not sore from a cold) it felt as if the cartilage or the

mechanics of the throat itself were collapsing. After an EKG and X-

ray I was told to see an ENT - I have an appointment this afternoon.

March 8th of 2005 I had surgery for the removal of a brain tumor

(benign). I'll be 54 next month..I've always been very active, but

for the last three years my world has been falling apart very

rapidly!!!

Any of you experience the throat thing? For me that was so so scary.

Any comments/suggestions are appreciated

My best to all

[Guest guest]

What is he going to do about your voicebox and trachea ? How did he determine the problem?

I have a problem with my throat too, with RA and Sjogren's and it is not figured out yet, but not bad enough to go to emergency. Just a constant annoyance with sore throat - feels like a desert - hot, dry and inflamed.

Annette

On 3/13/06, leonfii <leonfii@...> wrote:

My messages came through. Must have done something wrong at my end. I have two different email addresses in outlook. I need to just stick to a particular one when sending messages to the group. My name is Filinta AKA . Thank you for the information you gave me on RA and medications. I saw ENT for the throat problem and was told I have arthritis on the voice box and trachea. I have an appointment with Rheumatologist March 24th and hope to talk about maybe adding / adjusting or changing meds. What is a biologic?My best to you.

[Guest guest]

Biologics are a new class of drugs that

target specific components of the immune system that are involved in the

inflammatory process. Instead of being relatively simple molecules like

most RA medications they are complex proteins. If they are given orally

the body identifies them as food so they get digested and do nothing to help

our RA. They are either given by injection or IV. The most common

three are Remicade, Humira, and Enbrel and all of them act on the TNF part of

the immune system (whatever that is). Remicade is given by IV and after a

couple of loading doses is nominally given every 8 weeks but some people get it

every 4 weeks. It is also adjusted in amount depending on the patient’s

reaction. Humira and Enbrel act on the same part of the immune system but

in different ways, and they are given by injection. Humira is given

nominally every two weeks and Enbrel may nominally be given either every week

or twice a week, but either may be adjusted to be more frequent if

needed. Another of the older biologics in Kineret that is a daily

injection and it acts on t he IL-1 or something like that. On average it

is less effective than the TNF drugs but for some it is the only effective

medication. A newer one that is so new it is only in limited production

is Abatacept also called Orencia. It is given by IV, I think every t two

weeks and it acts on a different part of the IL immune system. The most

recently approved one is Rituxin (Rituximab) and that acts on the B Cell

component of the immune system and is given by IV. I have read that after

the first couple of infusions another one might not be needed for as long as

six months but I don’t know what the normal dose schedule is for that

one.

All of the biologics are quite expensive

and most people can’t get them unless they have help paying for

them. My Remicade costs a full price of over $50.000 a year but I only pay

a small fraction of that. God bless.

From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ] On Behalf Of leonfii

Sent: Monday, March 13, 2006 5:34

PM

Rheumatoid Arthritis

Subject:

Re: New to the group!

My messages came through. Must have done something wrong at my

end.

I have two different email addresses in

outlook. I need to just

stick to a particular one when sending messages to

the group. My name

is Filinta AKA .

Thank you for the information you gave me on RA

and medications.

I saw ENT for the throat problem and was told I

have arthritis on the

voice box and trachea.

I have an appointment with Rheumatologist March

24th and hope to talk

about maybe adding / adjusting or changing

meds. What is a biologic?

My best to you.

[Guest guest]

I am really glad you guys brought up the issue with your throat. I always have a sore throat. Its been going on for months. I was starting to think I am losing it! I am interested in what the docs say about that. RhondaAnnette <anetto@...> wrote: What is he going to do about your voicebox and trachea ? How did he determine the problem? I have a problem with my throat too, with RA and Sjogren's and it is not figured out yet, but not bad enough to go to emergency. Just a constant annoyance with sore throat - feels like a desert - hot, dry and inflamed. Annette On 3/13/06, leonfii <leonfii@...> wrote: My messages came through. Must have done something wrong at my end. I have two different email addresses in outlook. I need to just stick to a particular one when sending messages to the group. My name is Filinta AKA . Thank you for the information you gave me on RA and medications. I saw ENT for the throat problem and was told I have arthritis on the voice box and trachea. I have an appointment with Rheumatologist March 24th and hope to talk about maybe adding / adjusting or changing meds. What is a biologic?My best to you.

[Guest guest]

I'm hoping to have some answers in the next couple of weeks. Have an

appointment with my Primary Care Physician Thursday and the

Rheumatologist on March 24th. I'll post then and let you know what I

learn.

My messages came

through. Must have done something wrong at my end.

> I have two different email addresses in outlook. I need to just

> stick to a particular one when sending messages to the group. My

name

> is Filinta AKA .

>

> Thank you for the information you gave me on RA and medications.

>

> I saw ENT for the throat problem and was told I have arthritis on

the

> voice box and trachea.

> I have an appointment with Rheumatologist March 24th and hope to

talk

> about maybe adding / adjusting or changing meds. What is a

biologic?

>

> My best to you.

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi Arta,

Welcome to the club that nobody really wants to be a member of.

For some really good news let me direct you to Zammett's blog.

http://www.glamour.com/lifestyle/blogs/editor

is your age and has CML. She is 4 months pregnant and writes about it

openly. One of our listowners, Amy, is 2 months pregnant. There are many

cases of successful Gleevec mothers.

Zavie

Zavie (age 68)

67 Shoreham Avenue

Ottawa, Canada, dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-202-0204

ID: zaviem

[ ] New to the group!

Hi to everyone,

Im new to this group! I was diagnosed with CML 04/01/07, talking about a

" good " start of a year ...

Im 27 and sometimes I have difficulties admitting to myself that Im a

cancer patient. Most of the time I dont think about it, it makes life

easier. Im on Gleevec 400mg, and after 3 months I really do not have any

side effects, the first month was difficult but now everything is OK.

My Doc wanted to be on the safe side and have a tissue matching with my

only sister and it turned out to be that she is not a match. To make things

even more complicated my doc said that I have inherited a very rare type of

bone marrow from my parents, and my father is deceased and I dont have much

family from my fathers side. Hopefully my dearest mother will be a match.

The only thing that really makes me very sad is the fact that it would be

difficult to have children, I always wanted to have a lot of children ...

IS there someone among you that has had a baby while taking a break from

Gleevec or after a bone marrow translplant? I really would love to hear some

good news on this matter.

May God Bless you all, and May the happiest days of your past be the

saddest days of your future

All the best,

Kaqi 79

---------------------------------

Get your own web address.

Have a HUGE year through Small Business.

[Guest guest]

Hey Kaqi,

I am 31, and living with Gleevec and CML since 10/05. I have a 3 year old son.

I have a lot of troble with gleevec side-effects but I'm alive. I'm glad that

you are ok and that you have found us. I wish you the best and completely

understand your sorrow over pregnancy. The good news is that pregnancy and CML

are not incompatable, you just have to be watched very carefully. Gleevec is,

however, toxic to the fetus so before you decide to try to get pregnant get your

CML under control and speak with your onchologist. Best of luck, hang in there

and if you need someone to talk to I'm here.

:}

[ ] New to the group!

Hi to everyone,

Im new to this group! I was diagnosed with CML 04/01/07, talking about a " good "

start of a year ...

Im 27 and sometimes I have difficulties admitting to myself that Im a cancer

patient. Most of the time I dont think about it, it makes life easier. Im on

Gleevec 400mg, and after 3 months I really do not have any side effects, the

first month was difficult but now everything is OK.

My Doc wanted to be on the safe side and have a tissue matching with my only

sister and it turned out to be that she is not a match. To make things even more

complicated my doc said that I have inherited a very rare type of bone marrow

from my parents, and my father is deceased and I dont have much family from my

fathers side. Hopefully my dearest mother will be a match.

The only thing that really makes me very sad is the fact that it would be

difficult to have children, I always wanted to have a lot of children ...

IS there someone among you that has had a baby while taking a break from Gleevec

or after a bone marrow translplant? I really would love to hear some good news

on this matter.

May God Bless you all, and May the happiest days of your past be the saddest

days of your future

All the best,

Kaqi 79

------------ --------- --------- ---

Get your own web address.

Have a HUGE year through Small Business.