Re: Cold/virus update and Humira

[Guest guest]

My rheumatologist said that it was very important to stop Humira as soon as I felt any kind of cold/flu symptoms or got an infection of any kind (like a cut which won't heal). The humira makes colds/flu and infections much worse and makes it difficult to heal. He said I shouldn't start the humira again until I was symptom free. I got a cold this year (my first in 2 years) and it was awful. I was much sicker than in previous colds and it lasted much longer than usual. I missed two doses of humira and my joints definitely noticed.

It was good you stopped your humira and I would not start again until you're rheumy says it's okay or until you feel much better.

The problem, as you alluded, is that many of the drugs we take for our RA suppress our immune system. So we're more susceptible to illness. Then we have to stop those drugs until the illness is over or we'll suffer even worse consequences. Of course, our joints feel bad when we stop our RA drugs so we're just plain miserable.

I hope you feel better soon!

PS - I too suffer from allergies and I really have to pay attention to figure out if my sympoms are allergy related or something worse.

On 3/15/06, aclavern33@... <aclavern33@...> wrote:

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.

[Guest guest]

Well, this lung problem is made worst by my run away immune system.

So I guess I will have to wait to hear from the rheummy to see if I

go back on it now will it help my lungs heal faster.

This is really horrible. The doc said its like my lungs are covered

with a bad sunburn...my body is just churning out tons of white blood

cells and immune stuff that I do not need cuase the virus is gone.

I hope that my doc has some answers to slowing this attack down so I

can get back to normal.

Toni

> >

> > *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.*

> >

>

[Guest guest]

Dear Toni- This sounds like a cytokine storm of the lung. filling them up with fluid and white blood cells. I think taking your biologic will help there, keeping it in check since it is a TNF binding biologic drug. Atleast in theory thats what the new avian flu will do. It makes your bodys immune system overactive causing inflammation and fluid build up in the lungs. In your case, your body is already overactive and it makes it even worse. I do hope you feel better soon. Fluid in the lungs is very serious especially for someone with an auto immune disorder. Any doctor who wont order tests in your best interest because you are seeing someone outside his office does not have your best interests at heart. My PCP always orders tests or works with my endocrinologist and RD to keep everyone in the loop. Your medical team has to be just that, a team, keeping you at the forefront, and not let insurance or other issues interfere. Please keep us posted. Hugs, Deborah

On 3/16/06, aclavern33@... <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

[Guest guest]

You asked about a steroid burst. You got one with the Kenalog shot. The Advair also has steroid in it. Both should help your lungs immensely.

On Thu, 16 Mar 2006 06:53:21 -0000 "Ms radar" <aclavern33@...> writes:

Well, this lung problem is made worst by my run away immune system. So I guess I will have to wait to hear from the rheummy to see if I go back on it now will it help my lungs heal faster. This is really horrible. The doc said its like my lungs are covered with a bad sunburn...my body is just churning out tons of white blood cells and immune stuff that I do not need cuase the virus is gone. I hope that my doc has some answers to slowing this attack down so I can get back to normal.Toni> >> > *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.*> >>

"Have no fear for what tomorrow may bring. The same loving God who cares for you today will take care of you tomorrow and every day. God will either shield you from suffering or give you unfailing strength to bear it. Be at peace, then, and put aside all anxious thoughts and imaginations."-St Francis DeSales

[Guest guest]

Same here. I had a horrible cold in Dec/Jan. Had to go off of humira then my gp gave me amoxicillan and I had to go off of mtx. It was the first time in over 10 years I had to go off of mtx. I'm just now getting back to somewhat normal . I've learned tho, that not all doctors will agree...

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Maggie

-----Original Message-----From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ]On Behalf Of KraussSent: Thursday, March 16, 2006 1:42 AMRheumatoid Arthritis Subject: Re: Cold/virus update and Humira

My rheumatologist said that it was very important to stop Humira as soon as I felt any kind of cold/flu symptoms or got an infection of any kind (like a cut which won't heal). The humira makes colds/flu and infections much worse and makes it difficult to heal. He said I shouldn't start the humira again until I was symptom free. I got a cold this year (my first in 2 years) and it was awful. I was much sicker than in previous colds and it lasted much longer than usual. I missed two doses of humira and my joints definitely noticed.

[Guest guest]

Deborah,

You are right!! I could not remember what the doc had said. I felt

so bad when I got there. I barely dragged myself into the office. I

had to drive 30 miles to get there, stand in line to check in for

another 15 mins...so I was pretty worn out by the time I saw the

doc. I was also coughing so bad I just knew any moment I was either

going to throw up or have a lung flying across the room.

This Doc that I saw today is Family Practice but he is very through,

patient and good. I like him. So I decided to keep him as my doc.

The drive is a bit much...but I think will be worth it. He called

the post vial thing cytokine storm...

I called my rheummy today and I am now waiting for a return call from

him. I am hoping he says start Humira immediately. I think also I

am not getting enough of a response and need to go to weekly. Even

though the shots burn like acid they do help! I want to make sure

all of this is documented in my chart for SSDI application.

I got a letter from Unum Provident my LTD provider that they want me

to apply for SSDI and they have some company called Gentx(or

something like that) that helps get you throw the whole process. So

we shall see. I hope they have lawyers that can fight for you. I

applied once before and got turned down. But now with all these

other issues coming up I guess its time to try again.

The PCP thing from the old doc was a shock. The receptionist said

its becuase they do not know what DX code to put it under and

frequently outside docs send incomplete code info...its too much

trouble to track down the doc to get the right info. I told her well

if you are my primary doc then it seems you would know exactly what

code to use? She had now other info and seemed shocked that I threw

that back at her. It would have been nice to use this doc since he

is close to home and has extended office hours during the week plus

had a physicians asssistant in the office with him too. But I guess

convenience does not always turn out to be the best thing.

Since now I am back at the big clinic next to the hospital I have

FULL lab, xray and pharmacy services right in the clinic. This will

save me money because my insurance makes me pay a large deductible,

plus co-insurance if labs and xrays are not done at the time of the

visit. I also got my meds from the pharmacy. They are so fast..it

took about 5 mins verses going to Walmart or grocery store here and

waiting 2-3 hrs!

So even though I still feeling pretty crappy today...at least I know

what I am dealing with and I hope the steriods kick in soon and this

starts to go away.

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*

> >

> >

> >

[Guest guest]

I felt so bad when I got to the office. I barely dragged myself into

the office. I

had to drive 30 miles to get there, stand in line to check in for

another 15 mins...so I was pretty worn out by the time I saw the

doc. I was also coughing so bad I just knew any moment I was either

going to throw up or have a lung flying across the room.

This Doc that I saw today is Family Practice but he is very through,

patient and good. I like him. So I decided to keep him as my doc.

The drive is a bit much...but I think will be worth it. He called

the post vial thing cytokine storm...

I called my rheummy today and I am now waiting for a return call from

him. I am hoping he says start Humira immediately. I think also I

am not getting enough of a response and need to go to weekly. Even

though the shots burn like acid they do help! I want to make sure

all of this is documented in my chart for SSDI application.

I got a letter from Unum Provident my LTD provider that they want me

to apply for SSDI and they have some company called Gentx(or

something like that) that helps get you throw the whole process. So

we shall see. I hope they have lawyers that can fight for you. I

applied once before and got turned down. But now with all these

other issues coming up I guess its time to try again.

The PCP thing from the old doc was a shock. The receptionist said

its becuase they do not know what DX code to put it under and

frequently outside docs send incomplete code info...its too much

trouble to track down the doc to get the right info. I told her well

if you are my primary doc then it seems you would know exactly what

code to use? She had now other info and seemed shocked that I threw

that back at her. It would have been nice to use this doc since he

is close to home and has extended office hours during the week plus

had a physicians asssistant in the office with him too. But I guess

convenience does not always turn out to be the best thing.

Since now I am back at the big clinic next to the hospital I have

FULL lab, xray and pharmacy services right in the clinic. This will

save me money because my insurance makes me pay a large deductible,

plus co-insurance if labs and xrays are not done at the time of the

visit. I also got my meds from the pharmacy. They are so fast..it

took about 5 mins verses going to Walmart or grocery store here and

waiting 2-3 hrs!

So even though I still feeling pretty crappy today...at least I know

what I am dealing with and I hope the steriods kick in soon and this

starts to go away.

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

>

>

>

[Guest guest]

Toni,

You mentioning viral infection made me think why are we having

all the different viruses we now have. I began doing some researching

on viruses and found information I don't like that is if it's true. I read that

some of these viruses are synthetic and made in America. Aids is man

made so they say. Human's didn't catch it from little green monkeys.

I am uncertain if this is true or not but it's on the internet that an organization

sent vials of serum for smallpox laced with Aids to Africa somewhere in

the late '70s. As we know, millions and millions of Africans are dying of Aids

now.....Joyce from Texas

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

From: aclavern33@...

; Rheumatoid Arthritis ; SistahsWithLupus ; Hugs-N-Pain ; Arthritis-Symptom ; Rheumatoid_Exercise_Diet

Sent: Wednesday, March 15, 2006 10:25 PM

Subject: Cold/virus update and Humira

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

[Guest guest]

Toni,

It definately soounds like the drive to the new doc will be well

worth the trip!

>

> Toni,

> You mentioning viral infection made me think why are we having

> all the different viruses we now have. I began doing some

researching

> on viruses and found information I don't like that is if it's

true. I read that

> some of these viruses are synthetic and made in America. Aids is

man

> made so they say. Human's didn't catch it from little green

monkeys.

> I am uncertain if this is true or not but it's on the internet that

an organization

> sent vials of serum for smallpox laced with Aids to Africa

somewhere in

> the late '70s. As we know, millions and millions of Africans are

dying of Aids

> now.....Joyce from Texas

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

> From: aclavern33@...

> ;

Rheumatoid Arthritis ;

SistahsWithLupus ; Hugs-N-Pain ;

Arthritis-Symptom ;

Rheumatoid_Exercise_Diet

> Sent: Wednesday, March 15, 2006 10:25 PM

> Subject: Cold/virus update and Humira

>

>

> 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

>