Re: Cold/virus update and Humira Toni

[Guest guest]

Toni:

I'm sorry to hear that you are so ill right now. The

Advair diskus is a steroid, although not as strong as

taking Prednisone, and it will provide steroid relief

for your lungs, but you need to be on it for longer

than two weeks, IMO. I take it daily for my asthma,

twice a day, and have for the last few years, and was

told when I began taking it that it would take at

least two weeks to begin feeling the beneficial

effects, and then taking it daily would keep the

steroid effect ongoing in my lungs. It does not help

with my joints, unfortunately! I have added Prednisone

when I am in a severe flare, or have lung problems,

and maybe you do need to do a short course of

Prednisone or Medrol, IMO.

I never use my Enbrel when I am ill, or even starting

a cold, simply because I know my immune system is

already compromised, why further complicate the issue

by continuing to inject more immune suppressant while

I need my body to fight off an illness? Just my 2

cents worth.

It's great that you are actually getting your labs

done at least! Hope that you are feeling better soon

-

Kathe in CA

--- aclavern33@... wrote:

> Last night I started feeling really bad. I was

> coughing until it hurt and I

> felt stuff rubbing and gurgling in my chest. So

> today I made an appnt to

> see my doc.

>

> This is what he found. I did indeed have some sort

> of viral illness...which

> as passed. Now the terrible cough is caused by a

> post viral lung syndrome.

> This is when your body's immune system kicks in to

> fight the virus but

> forgets to turn off after the virus is gone. So my

> body was dumping lots of fluid

> and white blood cells into my lungs to try and

> fight something that is not

> there. The doc said if you could look at the

> surface of my lungs they would

> look like that have a bad sun burn rash. This left

> untreated can continue for

> 12 weeks or more until my immune system gets the

> hint to stop!

>

> So the treatment is like a person with asthma. He

> gave me a shot of

> kenalog, advair discus for the next two weeks,

> tessalon perles for cough, double my

> dose of claritin for allergies.

>

> He said the rest of my problems was plain ole texas

> allergies.

>

> I asked him if he felt my RA had any hand in this.

> He statement was he has

> seen this in plenty of people that do not have

> auto-immune disease but in my

> case yes my RA has an affect. I asked him if I

> should have NOT stopped my

> Humira and his response was that he was not familiar

> with the med to make a

> determination on that one.

>

> So this is the way I see it. If my immune system

> was under good control I

> probably would not have this....or at least it would

> not be this bad. So I

> will try to call my rheummy tomorrow to see if I can

> start my Humira this

> weekend. I hope I can get through because my

> rheummy is out of the office this

> week due to a conference. I am also going to ask

> him about a steriod burst as

> well to try and quiet down some of this lung

> inflammation. I can feel my

> lungs rubbing together!

>

> I had never heard of this kind of thing. But this

> is as bad if not worst as

> when I had drug induced pneumonitis from

> Methotrexate.

>

> My doc was also kind enough to order my labs which I

> have needed for over

> six months and not be able to get done due to

> insurance issues. So my rheummy

> will be glad to have them when I go for my appnt

> next month.

>

> The doc I saw was also a new doc to me. My old

> family practice doc refuses

> to do labs for any outside doc...so he will not do

> the labs my rheummy

> orders. I was shocked!!! I asked so what do you do

> when you refer a patient to a

> specialist and the specialist writes for labs. She

> told me you need to go to

> an independent lab and get them down...then ask

> them to send a copy to us

> for your chart.

>

> I explained to her that if I do not have labs done

> during a doctors visit

> that my insurance makes me pay a large deductible

> and then they only pay 50% of

> the test. She said sorry..I guess you will have to

> pay for it.

>

> So though the drive 30 miles to this doc is not fun.

> At least they have a

> Full radiology department and lab and if I go for a

> doc appnt my new doc does

> not mind ordering the tests for my rheummy. This

> doc was even nice enough to

> give me samples so I did not have to by the

> Advair...which is VERY expensive!

>

> Toni

>

>

> [Non-text portions of this message have been

> removed]

>

>

Kathe

" To ride a horse is to borrow freedom. "

__________________________________________________

[Guest guest]

Kathe,

Thanks for the kind words. So far the Advair, Kenalog injection and

tesselon perles I have started are beginning to work. My virus is

long gone!!! But my body has not gotten the message...its the auto-

immune part. It is working overtime. Apparently with cytokine storm

if you do not get the immune system to stop this it can KILL you!!!

So I called my rheummy today and he said I can start Humira whenever

I feel ready too. I tried to ask him through a silly nurse about

this cytokine storm but his response was since my PCP is treating me

call him!!! IDIOT!

I was given the same info to stop TNF-inhibitors when sick so your

immune system can respond...but with cytokine storm the problem is

that you immune system is OVER responding...causing serious

inflammation, tons of mucous production which in turn can clog the

small airways and result in respiratory failure.

Cytokine storm is something that everyone with auto-immune disease

should be concerned about. It happens more in us than in anyone

else. This is also what kills people who get flu...it is also the

cause of death from Avian Flu!!!! With Avain flu the reaction is so

severe and swift that it suffocates people!

People with flu all seem to think that they need to strengthen there

immune systems...well in fact if you get cytokine storm you need to

weaken it before it kills you!!!

As far as the length of time of steriods...well that is what he feels

should do it with the large injection of steriods he gave me. I was

kinda curious on that one too. But he said if I am not better give

him a call back. I have a regular appnt with my rheummy mid April

and if I am still feeling back I shall address the steriod issue

then..cause I can't get anything done over the phone...My rheummy

suddenly seems very annoyed with me!

The good thing is the old clinic that I have decided to go back to

will have a new rheummy in July...so not long to tough it out with

the one I have. And to think I thought he was a real good doc! ack!

Also the cytokine storm has brought to light that sad to say I guess

I really do have RA. I was really holding out for a misdiagnosis. LOL

Toni

>

> > Last night I started feeling really bad. I was

> > coughing until it hurt and I

> > felt stuff rubbing and gurgling in my chest. So

> > today I made an appnt to

> > see my doc.

> >

> > This is what he found. I did indeed have some sort

> > of viral illness...which

> > as passed. Now the terrible cough is caused by a

> > post viral lung syndrome.

> > This is when your body's immune system kicks in to

> > fight the virus but

> > forgets to turn off after the virus is gone. So my

> > body was dumping lots of fluid

> > and white blood cells into my lungs to try and

> > fight something that is not

> > there. The doc said if you could look at the

> > surface of my lungs they would

> > look like that have a bad sun burn rash. This left

> > untreated can continue for

> > 12 weeks or more until my immune system gets the

> > hint to stop!

> >

> > So the treatment is like a person with asthma. He

> > gave me a shot of

> > kenalog, advair discus for the next two weeks,

> > tessalon perles for cough, double my

> > dose of claritin for allergies.

> >

> > He said the rest of my problems was plain ole texas

> > allergies.

> >

> > I asked him if he felt my RA had any hand in this.

> > He statement was he has

> > seen this in plenty of people that do not have

> > auto-immune disease but in my

> > case yes my RA has an affect. I asked him if I

> > should have NOT stopped my

> > Humira and his response was that he was not familiar

> > with the med to make a

> > determination on that one.

> >

> > So this is the way I see it. If my immune system

> > was under good control I

> > probably would not have this....or at least it would

> > not be this bad. So I

> > will try to call my rheummy tomorrow to see if I can

> > start my Humira this

> > weekend. I hope I can get through because my

> > rheummy is out of the office this

> > week due to a conference. I am also going to ask

> > him about a steriod burst as

> > well to try and quiet down some of this lung

> > inflammation. I can feel my

> > lungs rubbing together!

> >

> > I had never heard of this kind of thing. But this

> > is as bad if not worst as

> > when I had drug induced pneumonitis from

> > Methotrexate.

> >

> > My doc was also kind enough to order my labs which I

> > have needed for over

> > six months and not be able to get done due to

> > insurance issues. So my rheummy

> > will be glad to have them when I go for my appnt

> > next month.

> >

> > The doc I saw was also a new doc to me. My old

> > family practice doc refuses

> > to do labs for any outside doc...so he will not do

> > the labs my rheummy

> > orders. I was shocked!!! I asked so what do you do

> > when you refer a patient to a

> > specialist and the specialist writes for labs. She

> > told me you need to go to

> > an independent lab and get them down...then ask

> > them to send a copy to us

> > for your chart.

> >

> > I explained to her that if I do not have labs done

> > during a doctors visit

> > that my insurance makes me pay a large deductible

> > and then they only pay 50% of

> > the test. She said sorry..I guess you will have to

> > pay for it.

> >

> > So though the drive 30 miles to this doc is not fun.

> > At least they have a

> > Full radiology department and lab and if I go for a

> > doc appnt my new doc does

> > not mind ordering the tests for my rheummy. This

> > doc was even nice enough to

> > give me samples so I did not have to by the

> > Advair...which is VERY expensive!

> >

> > Toni

> >

> >

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

> > removed]

> >

> >

>

>

> Kathe

>

> " To ride a horse is to borrow freedom. "

>

>

>

> __________________________________________________

>

[Guest guest]

Toni:

Don't we all wish it were not so that we have these

dang diseases. Thanks for the info on cytokine storm,

very interesting and something that I had not read

about before. I guess that is why a post recently on

the Avian flu (can't remember if it was RA or Fibro

group) said that those on anti-TNF inhibitors were

actually better off. Hope I understood that right.

I hope, too, that your new rheumy will be more

compassionate toward you - the old one sounds like he

is a bit burnt out. Hang in there - and hope you feel

better soon. Keep us updated -

Kathe in CA

--- Ms radar <aclavern33@...> wrote:

> Kathe,

> Thanks for the kind words. So far the Advair,

> Kenalog injection and

> tesselon perles I have started are beginning to

> work. My virus is

> long gone!!! But my body has not gotten the

> message...its the auto-

> immune part. It is working overtime. Apparently

> with cytokine storm

> if you do not get the immune system to stop this it

> can KILL you!!!

>

> So I called my rheummy today and he said I can start

> Humira whenever

> I feel ready too. I tried to ask him through a

> silly nurse about

> this cytokine storm but his response was since my

> PCP is treating me

> call him!!! IDIOT!

>

> I was given the same info to stop TNF-inhibitors

> when sick so your

> immune system can respond...but with cytokine storm

> the problem is

> that you immune system is OVER responding...causing

> serious

> inflammation, tons of mucous production which in

> turn can clog the

> small airways and result in respiratory failure.

>

> Cytokine storm is something that everyone with

> auto-immune disease

> should be concerned about. It happens more in us

> than in anyone

> else. This is also what kills people who get

> flu...it is also the

> cause of death from Avian Flu!!!! With Avain flu

> the reaction is so

> severe and swift that it suffocates people!

>

> People with flu all seem to think that they need to

> strengthen there

> immune systems...well in fact if you get cytokine

> storm you need to

> weaken it before it kills you!!!

>

> As far as the length of time of steriods...well that

> is what he feels

> should do it with the large injection of steriods he

> gave me. I was

> kinda curious on that one too. But he said if I am

> not better give

> him a call back. I have a regular appnt with my

> rheummy mid April

> and if I am still feeling back I shall address the

> steriod issue

> then..cause I can't get anything done over the

> phone...My rheummy

> suddenly seems very annoyed with me!

>

> The good thing is the old clinic that I have decided

> to go back to

> will have a new rheummy in July...so not long to

> tough it out with

> the one I have. And to think I thought he was a

> real good doc! ack!

>

> Also the cytokine storm has brought to light that

> sad to say I guess

> I really do have RA. I was really holding out for a

> misdiagnosis. LOL

>

> Toni

>

> > > >

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

> > > removed]

> > >

> > >

> >

> >

> > Kathe

> >

> > " To ride a horse is to borrow freedom. "

> >

> >

> >

> > __________________________________________________

> >

[Guest guest]

Kathe,

yes I posted the Article on Avian flu. Someone on another group I am

a member posted and it was so interesting I thought I would post it

here.

Toni

>

> > Kathe,

> > Thanks for the kind words. So far the Advair,

> > Kenalog injection and

> > tesselon perles I have started are beginning to

> > work. My virus is

> > long gone!!! But my body has not gotten the

> > message...its the auto-

> > immune part. It is working overtime. Apparently

> > with cytokine storm

> > if you do not get the immune system to stop this it

> > can KILL you!!!

> >

> > So I called my rheummy today and he said I can start

> > Humira whenever

> > I feel ready too. I tried to ask him through a

> > silly nurse about

> > this cytokine storm but his response was since my

> > PCP is treating me

> > call him!!! IDIOT!

> >

> > I was given the same info to stop TNF-inhibitors

> > when sick so your

> > immune system can respond...but with cytokine storm

> > the problem is

> > that you immune system is OVER responding...causing

> > serious

> > inflammation, tons of mucous production which in

> > turn can clog the

> > small airways and result in respiratory failure.

> >

> > Cytokine storm is something that everyone with

> > auto-immune disease

> > should be concerned about. It happens more in us

> > than in anyone

> > else. This is also what kills people who get

> > flu...it is also the

> > cause of death from Avian Flu!!!! With Avain flu

> > the reaction is so

> > severe and swift that it suffocates people!

> >

> > People with flu all seem to think that they need to

> > strengthen there

> > immune systems...well in fact if you get cytokine

> > storm you need to

> > weaken it before it kills you!!!

> >

> > As far as the length of time of steriods...well that

> > is what he feels

> > should do it with the large injection of steriods he

> > gave me. I was

> > kinda curious on that one too. But he said if I am

> > not better give

> > him a call back. I have a regular appnt with my

> > rheummy mid April

> > and if I am still feeling back I shall address the

> > steriod issue

> > then..cause I can't get anything done over the

> > phone...My rheummy

> > suddenly seems very annoyed with me!

> >

> > The good thing is the old clinic that I have decided

> > to go back to

> > will have a new rheummy in July...so not long to

> > tough it out with

> > the one I have. And to think I thought he was a

> > real good doc! ack!

> >

> > Also the cytokine storm has brought to light that

> > sad to say I guess

> > I really do have RA. I was really holding out for a

> > misdiagnosis. LOL

> >

> > Toni

> >

> > > > >

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

> > > > removed]

> > > >

> > > >

> > >

> > >

> > > Kathe

> > >

> > > " To ride a horse is to borrow freedom. "

> > >

> > >

> > >

> > > __________________________________________________

> > >