Infections

[Guest guest]

Tania:  I think it's fair to say that the immunosuppressants do cause our immune

systems to stop fighting diseases, other than the auto-immune one that we're

taking them for.  That's what they're designed to do:  suppress an immune system

that's - in effect - gone haywire and is out of control.  Fighting our bodies

instead of helping them, as they should.  Most doctors will tell you to call

them the minute you show signs of an infection and will take you off the drug

temporarily.  If you are to have surgery or go thru any procedure that could

lead to infection, you will likely be taken off your drug of choice anywhere

from a week to 2 months before the procedure - depending on the doctor and the

seriousness of the procedure.  It is typically not something to become

obsessively worried about.  My internist has 12 patients on Enbrel and only one

has ever faced a life threatening situation; it was resolved by taking her off

the drug,

hospitalizing and treating her infection until the problem was resolved.  The

patient chose to return to Enbrel.

The " good " results of all three drugs vary from person to person.  I was put on

Enbrel six months after my symptoms started.  But that time, I was in bad shape,

hurt all over and had trouble just getting up the stairs to go to bed at night. 

Literally had to crawl up a few nights.  And my feet and legs were swollen

beyond belief.  The first shot made an immediate, significant

and overnight difference in the level of that swelling but the pain relief came

so slowly that it was barely noticeable on a day to day basis until suddenly

after about a month I realized that I didn't hurt as much any more.  But the end

of two months, I was nearly back to my old self and by the end of three, I was

back to normal - and have remained that way for 18 months.  I've gone off the

drug for a few weeks for minor eye surgery twice with no resumption in symptoms;

and over the past 2 weeks I've been off it again because of severe chest

congestion/bronchitis. 

Again, no resumption in symptoms, though I'm right now on an 8 day course of

prednisone to clear up my lungs. 

Hope this is helpful.  Each of us reacts differently to the 3 drugs you

mentioned (and there are others).  For some, it's MTX (which I never tried - my

doc wanted to go straight to Enbrel).  For some it's Enbrel or Humira or

Remicade and one may work better than another for any given person.  There is no

single magic bullet that seens to work for everyone. 

 Joanna Hoelscher

[Guest guest]

Tania,

 

Way back when I was put on methotrexate I got pneumonia, had to stop that. then

I was put on cytoxen and I had a relapse of the pneumonia even thought I had a

five year shot. Then they put me on Cellcept and Enbrel and that made me sick

with a sinus infection, so none of the meds have worked for me and I am not

going back to being miserable again. I am taking antibiotics to get well now, it

will be a long haul but I have been sick for three years and it may take me that

long to get well..

Take care, talk to your doctor if things don't get well with your medication, if

you take meds that make you even sicker then you are already it's not worth it.

 

Regards,

Eva

[Guest guest]

Hi,

I can tell you the good results for me are no inflammation. When I first had PA

in 1999 I wasn't diagnosed yet. I had one inflamed finger. By 2001 I had 3

inflamed fingers. I tried Sulfasalazine which never worked. I chose to have

babies before I tried any other medication. I just kind of suffered through the

pain. By 2005 two of my joints in my fingers were fused naturally because of

the PA - Therefore I had no joints. The pain was severe and I had 3 joints

replaced in my fingers. The doctor thought it would eliminate my immune system

attacking these fingers and ease the pain it worked.

All I can say is that I regret not giving Enbrel a try, because I think that the

destruction wouldn't have happened, but I chose to have my 2 wonderful boys and

take care of me later - no regrets - just want you to know that Enbrel works.

I suffered horribly last April when my psoriatic arthritis came back with a

vengeance. I not only had pain in my left hand my right fingers were swollen,

my knees were swollen, I couldn't lift my arm. Just the pain of bending my legs

was horrific. This lasted for a few months until I could get into the RA. Well

I had a few months to decide what kind of treatment I would pursue now that I

was not going to have any more babies. My RA was very good about telling me

about my options and about all the possibilities I could get other diseases and

the possible side effects.

Enbrel sounded like the best option. After my insurance approved it I started

it as soon as I could.

So what I can say about good results is that the next morning I woke up pain

free. The quality of life for me right now is absolutely 100%. I feel like a

35 year old and not like an 80 year old.

It would be nice if there was one medicine that helped all of us, but there

isn't. I hope you find a miracle in one of the drugs that are offered to you.

Someone on this group made a difference when I was making the decision, so I am

grateful for this site.

Rita

[Guest guest]

HI TANIA,

I had infection in one of my teeth. The dentist tried to clean it. I took a lot

of antibiotics. The infection moved to three other teeth. At least 5 times I

went to the dentist to get a painful cleaning procedure. Finally, the dentist

had to remove 4 teeth in order to stop the damage. All that time I did not

connect between that infection and the Enbrel. Later on I read the information

about Humira, Remicade and Enbrel. All of them can cause tooth infections. It

was amazing. When I consulted my rheumy, he told me that there is no connection.

Only later on when i read the information letter I saw that he was just a layer,

or lazy, or ignorant, or whatever. The balance for me: 4 less teeth. 4

transplant of tooth. Tons of suffering. I stopped Enbrel. I shall not, even,

look at it, again

ARIE

[Guest guest]

Hi Tania,

I've been on Enbrel for almost two years now. I'm one of those cases

where it worked quickly and effectively. I've actually had less

frequent and severe sinus infections since going on Enbrel. My most

severe infection was 5 years ago pre-Enbrel (bronchitis, pneumonia,

etc.) which is what I think triggered my PA to begin with, given all

the corticosteroids that they prescribed to me back then and how my

body went haywire after several months of a corticosteroid-based

nasal spray.

I've only had to forego my weekly Enbrel injections twice in the past

two years--once because of some dental surgery (I had to take

antibiotics as a prophylactic measure to prevent infection), and most

recently this past holiday season because I contracted that awful

cold/sore throat bug that seemed to plagued EVERYONE this season. My

recovery period was no longer or less than any other friend or

colleague that contracted the same virus.

It's all a case-by-case basis. But, that's my story.

Hope this is a bit helpful.

--Vera

[Guest guest]

Thanks. I'm kind of wondering what to do since my fingers have been

having arthritis pains. I have psoriasis but 12 years ago I had two

iodine radiation treatments for a thyroid disorder. After this

treatment I immediately felt my fingers getting bad. Over the years

it's getting worse and I am now 36. So I have no idea if I should

start treatment for PA or if it's related to something else having to

do with my iodine treatments?

" Tania " <taniaess1@...>

[Guest guest]

Hi,

I read about what a difficult time some people are having raising

kids when they had such a crippling condition.

I can understand it even though I do not have kids.

What I'm not sure of is whether your doctor is telling you that PA and

psoriasis is passed on through families ????

And do you plan on having the kids tested for PA as some people

writing in have teens with pain and crippling?

I believe dr should make people aware of the odds of their kids

having similar problems. A dr told me when I was a teen that

psoriasis came from my parents and that there is not cure, you can

only try to control the outbreaks.

Has any one heard different than this or is this really true?

SD

[Guest guest]

I also have knee problems sometimes...I forgot.

" Tania " <taniaess1@...>

--- In , " Tania " <taniaess1@...>

<<Thanks. I'm kind of wondering what to do since my fingers have been

having arthritis pains.>>

[Guest guest]

I have had good results with Humira. I've been on it about 2 years.

It has helped my joints a lot and my skin a little. I have not even

had a cold until just last month. It was mild, but I did delay my

Humira shot by a few days to be sure it would not get worse.

People who are prone to catch colds and infections anyway should avoid

crowds and young children (if possible) while taking any immun0-

suppressant drugs. They should also do everything possible to keep

their general health level good - healthy diet, exercise, wash hands

frequently, etc.

" S. Zorzi " <szorzi_1999@...>

[Guest guest]

Tania, the only way to know for sure is to see a rheumatologist. They

are best qualified to diagnose PA. Ask your dermatologist to refer you

to a rheumy.

" S. Zorzi " <szorzi_1999@...>

[Guest guest]

I'm now treating for babesia and bartonella as well as Lyme...I believe

parasitic and bacterial infections are an underlying problem for most of us...It

takes different abx for different infections. And it takes a LONG time to get

the heavy loads down...I suspect we may have many viruses as well...Is one the

" smoking gun " over the other. Think it's too early to tell.