Re: joint pain and fatigue

[Guest guest]

I went to my PCP this afternoon. He put in a call to Nova Factor to find

out more information on joint pain/arthritis and Xolair. They will get back to

him. For the time being he gave me shot - don't remember what it was since

I was in so much pain at the time. The shot has helped and I am not in pain

for the first time in a month. He also gave me Ultram to see if it will help

with the pain.

I have been on Xolair for over 3 years now. Getting off of it is just not

an option for me. If it is the Xolair that is causing problems then I do hope

they can continue with something to help the pain. After being able to

breathe and experience life as almost a normal person -- I don't want to have

any

problems!

Suzanne

************************************** See what's free at http://www.aol.com.

[Guest guest]

It would be great to be able to give you an answer - I'm following

this thread eagerly for an explanation and suggestions too!

As I've posted before, my 3 months on Xolair seem to have brought

about more joint pain and overall achyness. In all fairness, I

definitely had arthritis well before Xolair was invented and was

diagnosed w/mild fibromyalgia. Arthritis really runs in my family.

I take Celebrex 200 mgs. twice a day but feel that in the last few

months it has become less effective. It could very well be a

coincidence but I still think I feel something more painful since

starting Xolair.

I called my pulmo - talked to her assistant - and know that if I

really complain about Xolair causing joint pain I will be taken off

Xolair. Since it takes a year for IgE levels to return to " normal " I

can only guess how long it will take for joint pain to improve if

ever. Therefore, I'd really like better maintenace of the

arthritis. Still struggling to get a rheumy - last one did nothing -

and the best ones in town are not on my insurance. I've also been

tested for Lupus & Sjorens & rheumatoid arthritis (a couple years

ago) and all were negative except for slight elevation in skeletal

muscle titer.

I find that water exercise helps - indoor heated pool - but can't

spend THAT much time in the water! Also, low iron levels make it

worse. Sometimes Vit B therapy can help with some types of pain but

not sure arthritis is one of them.

I was really hoping that my arthritis (which is another poorly

understood and managed autoimmune disease) would improve on Xolair

(even though Xolair is not at all promoted for arthritis) but that

hasn't happened yet. My legs felt like rubber this morning and it

seemed like it took a lot just to shower and get dressed. I had

pains on my left side - some perhaps from stress as pcp was no help.

I did skip Advair last night and slept w/o waking up gasping which is

pretty good. At the same time, this is the time of year that I have

less trouble because I stay in the air conditioning which " cleans "

the air.

Tomorrow I have mri of lumbar spine - already know I have

degeneration there - curious if it's gotten worse. I've thought

about acupuncture - especially in hip - but not sure where to find a

reputable and safe acupuncturist.

Guess there's something unique about some of us that they just don't

know yet! Keep us posted!

>

> Over the past month I have been experiencing a lot of new

symptoms. I

> started having joint pain (my whole body) and it has continually

become much worse.

> The pain has been so bad that it makes it difficult/impossible to

work - I

> am a sign language interpreter. I have also been experiencing a

lot of

> fatigue.

>

> I was surprised when I read that others were having joint pain as

well. The

> Rheumatologist was checking for Sjogren's and Lupus. All the tests

so far

> have been inconclusive. I didn't realize the possibility of it

being a side

> effect of Xolair. I will be calling my PCP tomorrow. I don't

think the

> Rheumatologist has any clue about Xolair.

>

> I went back and checked all the postings regarding joint pain. Has

anyone

> found any type of relief from the pain? I have been using

Ibuprofen and

> Excedrin but they only dull the pain - I don't get total relief

from it. I really

> can't go off of Xolair because it has made a night and day

difference in me. I

> went from not being able to walk across the living room to working

and

> traveling and living life to the fullest.

>

> I appreciate any information.

> Suzanne

>

>

>

> ************************************** See what's free at

http://www.aol.com.

>

>

>

[Guest guest]

I had a few thoughts. Out of those of us who

experience joint pain,how many of us in here are no

longer taking Steroids ?! Maybe we need to take

another poll.

Remember that the oral steroids we've been taking are

used to reduce the inflammation in our lungs. AND

Prednisone and it's derivatives are anti-inflammatory

for joint pain and helps reducing spinal column

inflammation!...yet it ironically causes swelling in

other regions of our body. (Don't miss that Moon

face!) Also you have to remember that most people

who are on steroids tend to be a bit

" wired " /hyperactive. (One reason why they say to NOT

drink/eat anything with caffeine in it when you are

on steroids!)

If you no longer taking steroids

SO...if we are no longer taking the anti inflammatory,

the other parts of our body that could have been

inflamed are now suffering from inflammations!!!

I doubt very much that either joint pain or fatigue

is a side effect from being on Xolair, but a side

effect from NOT being on the asthma medications you

were on BEFORE or when you first started taking

Xolair.

--- SuzFisher@... wrote:

> Over the past month I have been experiencing a lot

> of new symptoms. I

> started having joint pain (my whole body) and it has

> continually become much worse.

> The pain has been so bad that it makes it

> difficult/impossible to work - I

> am a sign language interpreter. I have also been

> experiencing a lot of

> fatigue.

>

> I was surprised when I read that others were having

> joint pain as well. The

> Rheumatologist was checking for Sjogren's and Lupus.

> All the tests so far

> have been inconclusive. I didn't realize the

> possibility of it being a side

> effect of Xolair. I will be calling my PCP

> tomorrow. I don't think the

> Rheumatologist has any clue about Xolair.

>

> I went back and checked all the postings regarding

> joint pain. Has anyone

> found any type of relief from the pain? I have been

> using Ibuprofen and

> Excedrin but they only dull the pain - I don't get

> total relief from it. I really

> can't go off of Xolair because it has made a night

> and day difference in me. I

> went from not being able to walk across the living

> room to working and

> traveling and living life to the fullest.

>

> I appreciate any information.

> Suzanne

>

>

>

> ************************************** See what's

> free at http://www.aol.com.

>

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

____

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[Guest guest]

I have been going through a lot this afternoon. I had to rush to the dr's

office because I had a bad reaction to the Ultram. He gave me a shot of

Depo-Medrol to see if that would help with the reaction and with the joint

pain.

Even with the medications for pain yesterday I have been having a lot of pain

last night and today.

I have been doing really good on not being on steroids lately. I agree

with you that steroids mask other symptoms but I have not been on steroids in a

while so I don't think that is the case. But who knows!

The dr's have no idea what is going on right now. I have two dr's

researching trying to find out what type of problem I have. While I am very

frustrated I really appreciate their diligence on trying to figure it all out.

They

say that it may or may not be the Xolair. At least Nova-Factor is looking

into it as well.

************************************** See what's free at http://www.aol.com.

[Guest guest]

Yer right, KK. I have a fair amount of finger arthritis, and when I'm on higher

doses of pred. is disappears, but when I'm on my regular maintenance dosage of 8

mg. per day, the fingers stiffen up. That's why I drink so much - I figure if

my fingers are going to be stiff, the rest of me might as well be too.

Ohldepharte a.k.a. Terry

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

From: K K

Sent: Friday, June 22, 2007 9:08 AM

Subject: Re: [ ] joint pain and fatigue

I had a few thoughts. Out of those of us who

experience joint pain,how many of us in here are no

longer taking Steroids ?! Maybe we need to take

another poll.

Remember that the oral steroids we've been taking are

used to reduce the inflammation in our lungs. AND

Prednisone and it's derivatives are anti-inflammatory

for joint pain and helps reducing spinal column

inflammation!...yet it ironically causes swelling in

other regions of our body. (Don't miss that Moon

face!) Also you have to remember that most people

who are on steroids tend to be a bit

" wired " /hyperactive. (One reason why they say to NOT

drink/eat anything with caffeine in it when you are

on steroids!)

If you no longer taking steroids

SO...if we are no longer taking the anti inflammatory,

the other parts of our body that could have been

inflamed are now suffering from inflammations!!!

I doubt very much that either joint pain or fatigue

is a side effect from being on Xolair, but a side

effect from NOT being on the asthma medications you

were on BEFORE or when you first started taking

Xolair.

--- SuzFisher@... wrote:

> Over the past month I have been experiencing a lot

> of new symptoms. I

> started having joint pain (my whole body) and it has

> continually become much worse.

> The pain has been so bad that it makes it

> difficult/impossible to work - I

> am a sign language interpreter. I have also been

> experiencing a lot of

> fatigue.

>

> I was surprised when I read that others were having

> joint pain as well. The

> Rheumatologist was checking for Sjogren's and Lupus.

> All the tests so far

> have been inconclusive. I didn't realize the

> possibility of it being a side

> effect of Xolair. I will be calling my PCP

> tomorrow. I don't think the

> Rheumatologist has any clue about Xolair.

>

> I went back and checked all the postings regarding

> joint pain. Has anyone

> found any type of relief from the pain? I have been

> using Ibuprofen and

> Excedrin but they only dull the pain - I don't get

> total relief from it. I really

> can't go off of Xolair because it has made a night

> and day difference in me. I

> went from not being able to walk across the living

> room to working and

> traveling and living life to the fullest.

>

> I appreciate any information.

> Suzanne

>

>

>

> ************************************** See what's

> free at http://www.aol.com.

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________________

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[Guest guest]

When you go next..have them run a quick thyroid test on you! My son is

tested every six months because most of the meds hes been on for his asthma can

cause the thyroid to go wacky..it can also mess with your blood sugars... If

either of them are off..You can get joint pain!!!

Good luck

Ginger

************************************** See what's free at http://www.aol.com.

[Guest guest]

LOL!!!

speaking of drinking....

I must have been half in the bag when I wrote that

message, because there is a sentence in there that

makes no sense what so ever!. " If you no longer

taking steroids " ...and that was it. WTH?! I know

there was some other point that I wanted to make, but

obviously I lost it.

--- Terry <onabeach@...> wrote:

> Yer right, KK. I have a fair amount of finger

> arthritis, and when I'm on higher doses of pred. is

> disappears, but when I'm on my regular maintenance

> dosage of 8 mg. per day, the fingers stiffen up.

> That's why I drink so much - I figure if my fingers

> are going to be stiff, the rest of me might as well

> be too.

>

> Ohldepharte a.k.a. Terry

>

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

> From: K K

>

> Sent: Friday, June 22, 2007 9:08 AM

> Subject: Re: [ ] joint pain and fatigue

>

>

> I had a few thoughts. Out of those of us who

> experience joint pain,how many of us in here are

> no

> longer taking Steroids ?! Maybe we need to take

> another poll.

>

> Remember that the oral steroids we've been taking

> are

> used to reduce the inflammation in our lungs. AND

> Prednisone and it's derivatives are

> anti-inflammatory

> for joint pain and helps reducing spinal column

> inflammation!...yet it ironically causes swelling

> in

> other regions of our body. (Don't miss that Moon

> face!) Also you have to remember that most people

> who are on steroids tend to be a bit

> " wired " /hyperactive. (One reason why they say to

> NOT

> drink/eat anything with caffeine in it when you

> are

> on steroids!)

>

> If you no longer taking steroids

>

>

> SO...if we are no longer taking the anti

> inflammatory,

> the other parts of our body that could have been

> inflamed are now suffering from inflammations!!!

>

> I doubt very much that either joint pain or

> fatigue

> is a side effect from being on Xolair, but a side

> effect from NOT being on the asthma medications

> you

> were on BEFORE or when you first started taking

> Xolair.

>

> --- SuzFisher@... wrote:

>

> > Over the past month I have been experiencing a

> lot

> > of new symptoms. I

> > started having joint pain (my whole body) and it

> has

> > continually become much worse.

> > The pain has been so bad that it makes it

> > difficult/impossible to work - I

> > am a sign language interpreter. I have also been

> > experiencing a lot of

> > fatigue.

> >

> > I was surprised when I read that others were

> having

> > joint pain as well. The

> > Rheumatologist was checking for Sjogren's and

> Lupus.

> > All the tests so far

> > have been inconclusive. I didn't realize the

> > possibility of it being a side

> > effect of Xolair. I will be calling my PCP

> > tomorrow. I don't think the

> > Rheumatologist has any clue about Xolair.

> >

> > I went back and checked all the postings

> regarding

> > joint pain. Has anyone

> > found any type of relief from the pain? I have

> been

> > using Ibuprofen and

> > Excedrin but they only dull the pain - I don't

> get

> > total relief from it. I really

> > can't go off of Xolair because it has made a

> night

> > and day difference in me. I

> > went from not being able to walk across the

> living

> > room to working and

> > traveling and living life to the fullest.

> >

> > I appreciate any information.

> > Suzanne

> >

> >

> >

> > ************************************** See

> what's

> > free at http://www.aol.com.

> >

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

>

>

__________________________________________________________

> Luggage? GPS? Comic books?

> Check out fitting gifts for grads at Search

>

>

http://search./search?fr=oni_on_mail & p=graduation+gifts & cs=bz

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

____

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[Guest guest]

grneyyedlady - I agree with you completely and you describe what is

probably going on for most folks very well. We have had some rather

extensive discussions on this point in the past on this message

board. In my mind, there is no question that patients who can come

down on or off their steroids during Xolair treatment are simply

losing the relief from arthritis and other aches and pains that they

were experiencing with chfonic steroid treatment. With or without

Xolair, if the steroid treatments are diminished or stopped, the

joint pains and other body aches may return with a vengenance.

What I'm not clear on is that there seem to be a few members of this

board who were not previously on steroids prior to staring on

Xolair. However, during Xolair treatment they develop new joint and

other pains and wonder if they are due to Xolair. At least some of

these folks perhaps would have developed those symptoms even if they

weren't on Xolair. Only time, further testing and analysis will

determine whether some indeed develop these symptoms as a side

effect of Xolair rather than just coincidentally while they're on

Xolair.

About the swelling in arthritic joints vs. the facial and total body

swelling due to steroids - these types of swelling have different

mechanisms. The autoimmune swelling in joints is due to the immune

system gone haywire and revving up inflammatory reactions where

there would be none in a person without, for example, rheumatoid

arthritis or lupus. Steroids quiet the immune responses and

therefore reduce this tpe of swelling. Yes, steroids do produce

different types of swelling in the body (including the " moon face " )

but that is due to the side effect of changed water and salt balance

in the body, producing extra fluid in the soft tissues. It is not

inflammatory in origin.

Hope this helps -

Fran

>

> > Over the past month I have been experiencing a lot

> > of new symptoms. I

> > started having joint pain (my whole body) and it has

> > continually become much worse.

> > The pain has been so bad that it makes it

> > difficult/impossible to work - I

> > am a sign language interpreter. I have also been

> > experiencing a lot of

> > fatigue.

> >

> > I was surprised when I read that others were having

> > joint pain as well. The

> > Rheumatologist was checking for Sjogren's and Lupus.

> > All the tests so far

> > have been inconclusive. I didn't realize the

> > possibility of it being a side

> > effect of Xolair. I will be calling my PCP

> > tomorrow. I don't think the

> > Rheumatologist has any clue about Xolair.

> >

> > I went back and checked all the postings regarding

> > joint pain. Has anyone

> > found any type of relief from the pain? I have been

> > using Ibuprofen and

> > Excedrin but they only dull the pain - I don't get

> > total relief from it. I really

> > can't go off of Xolair because it has made a night

> > and day difference in me. I

> > went from not being able to walk across the living

> > room to working and

> > traveling and living life to the fullest.

> >

> > I appreciate any information.

> > Suzanne

> >

> >

> >

> > ************************************** See what's

> > free at http://www.aol.com.

> >

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

>

>

>

_____________________________________________________________________

_______________

> Luggage? GPS? Comic books?

> Check out fitting gifts for grads at Search

> http://search./search?

fr=oni_on_mail & p=graduation+gifts & cs=bz

>

[Guest guest]

I'd just like to make a comment here about your hope that Xolair

might help your arthritis as well as your asthma. I don't want to

ever take hope away, but I do think it's important to have realistic

expecations so you don't end up disappointed and disenheartened.

Although both asthma and arthritis feature inflammation, the basis

for the the inflammation is completely different. In allergic

asthma, the antibody class IgE reacts to allergens in the

environment and this reaction starts an immune cascade of damaging

events. Xolair prevents the onslet of this cascade by inactivating

the IgE.

In autoimmune arthritis, the immune system attacks normal joints,

also in an immune cascade but one that does not involve IgE at all.

So there is no step in which Xolair can block the onset of the

destructive cascade. However, there is always hope - perhaps

eventually someone will develop an antibody or other immune molecule

that can interfere similarly in autoimmune arthritis. Hope I haven't

bummed you out about this but I thought you would want to understand

the possibilities more clearly.

Fran

> >

> > Over the past month I have been experiencing a lot of new

> symptoms. I

> > started having joint pain (my whole body) and it has continually

> become much worse.

> > The pain has been so bad that it makes it difficult/impossible

to

> work - I

> > am a sign language interpreter. I have also been experiencing a

> lot of

> > fatigue.

> >

> > I was surprised when I read that others were having joint pain

as

> well. The

> > Rheumatologist was checking for Sjogren's and Lupus. All the

tests

> so far

> > have been inconclusive. I didn't realize the possibility of it

> being a side

> > effect of Xolair. I will be calling my PCP tomorrow. I don't

> think the

> > Rheumatologist has any clue about Xolair.

> >

> > I went back and checked all the postings regarding joint pain.

Has

> anyone

> > found any type of relief from the pain? I have been using

> Ibuprofen and

> > Excedrin but they only dull the pain - I don't get total relief

> from it. I really

> > can't go off of Xolair because it has made a night and day

> difference in me. I

> > went from not being able to walk across the living room to

working

> and

> > traveling and living life to the fullest.

> >

> > I appreciate any information.

> > Suzanne

> >

> >

> >

> > ************************************** See what's free at

> http://www.aol.com.

> >

> >

> >