Re: Managing infections on immunosuppresive therapies

[Guest guest]

I had the same problem and even developed asthma while on arava, prednisone and

enbrel.. then switched from enbrel to humira. A few months ago I had to go in

for

a hysterectomy and went off all meds. No more upper RI's or sinus infections

and no

more wheezing. Now my arthritis is bothering but I am not wheezing or

congested..go figure.

Joy

Marie Miley- <mrussell@...> wrote:

I am certain that I cannot be the only person having this problem... I have

had RA for 6+ years and currently am on enbrel twice weekly and 5 mg prednisone

daily- this barely manages my symptoms, but if I can remain on the Enbrel

consistently I do okay.

However, I have had chronic sinus infections for 20+ years with a history of two

sinus surgeries. Presently I have infections in both ears, my sinuses, and,

(despite having a lifelong history of having perfect teeth & being very careful

about my oral hygiene) my gums seem to have become terribly infected as well. I

have also had several white ulcers on my tongue for the past two weeks- as soon

as I get one to clear up, another pops up nearby. My internist put me on

antibiotics and a steroid taper and told me to see my dentist as she doesn't do

teeth (despite the obvious relationship of my gum infection to my

immunosuppression).

I use a daily sinus wash, do my oral hygiene exactly as directed, change

toothbrushes once a month (and soak it in hydrogen peroxide between uses), and

wash my hands religiously. I stay away from people who are sick. Nonetheless, I

seem to be a magnet for infections...

Due to the infections, I have been off of Enbrel for over two weeks and now am

in a very bad flare for which I will be contacting my Rheumy tomorrow. Due to

the severity of the recent infections, I am afraid to re-start my Enbrel-

restarting too soon last fall led to a bout with severe bronchitis that took

almost three months to recover from.

This is a continuing cycle for me- it feels very much like the old

" Whack-a-Mole " game. How do other folks manage this, short of living in a

bubble?

Always sick, always tired, and always in pain.

~Marie

[Guest guest]

Marie,

I kept having issues with infections; was off work for 2 months after being

hospitalized.  After a threat of going back into the hospital, I decided I was

done with MTX & Enbrel.  I studied the Road Back site & book & have started

antibiotic therapy.  I am fortunate to live not far from one of the most

respected docs who use this.  Hope it works, but I am releived to not have the

threat of serious infections because of medicine that is supposed to help!!  I

decided the benefits to me were not worth the risks.

Good luck to you!

Judy

From: Marie Miley- <mrussell@...>

Subject: [ ] Managing infections on immunosuppresive therapies

Date: Sunday, April 26, 2009, 1:48 PM

I am certain that I cannot be the only person having this problem... I have had

RA for 6+ years and currently am on enbrel twice weekly and 5 mg prednisone

daily- this barely manages my symptoms, but if I can remain on the Enbrel

consistently I do okay.

However, I have had chronic sinus infections for 20+ years with a history of two

sinus surgeries. Presently I have infections in both ears, my sinuses, and,

(despite having a lifelong history of having perfect teeth & being very careful

about my oral hygiene) my gums seem to have become terribly infected as well. I

have also had several white ulcers on my tongue for the past two weeks- as soon

as I get one to clear up, another pops up nearby. My internist put me on

antibiotics and a steroid taper and told me to see my dentist as she doesn't do

teeth (despite the obvious relationship of my gum infection to my

immunosuppression) .

I use a daily sinus wash, do my oral hygiene exactly as directed, change

toothbrushes once a month (and soak it in hydrogen peroxide between uses), and

wash my hands religiously. I stay away from people who are sick. Nonetheless, I

seem to be a magnet for infections.. .

Due to the infections, I have been off of Enbrel for over two weeks and now am

in a very bad flare for which I will be contacting my Rheumy tomorrow. Due to

the severity of the recent infections, I am afraid to re-start my Enbrel-

restarting too soon last fall led to a bout with severe bronchitis that took

almost three months to recover from.

This is a continuing cycle for me- it feels very much like the old

" Whack-a-Mole " game. How do other folks manage this, short of living in a

bubble?

Always sick, always tired, and always in pain.

~Marie

[Guest guest]

Marie, I asked the same thing last week! Stan told me to laminate myself.

Really, it's looking like a good option.

G

[Guest guest]

It is looking like a good option I'm think about doing it myselfm at least until

this flu emergency subsides.

Stan

Marie, I asked the same thing last week! Stan told me to laminate myself.

Really, it's looking like a good option.

G

[Guest guest]

I do have sinus infections, once in awhile. Also, having problems with

my teeth,(sjogren's), and its very frustrating. That is about it for me

though. I'm on mtx and humira, so I take folic to help the mtx side

effects.

Your having a lot of issues, I'm so sorry. You are doing so much to

help your problems, but it seems like nothing is working. I know you

must be tired of it all.

I would talk to my rheumy, and see what is best for you. Have you

thought about trying another RA med, that might work better?

Keep us posted, hope you can get some help soon, and feel better, Tawny

--- In , " Marie Miley- " <mrussell@...>

wrote:

>

> I am certain that I cannot be the only person having this problem... I

have had RA for 6+ years and currently am on enbrel twice weekly and 5

mg prednisone daily- this barely manages my symptoms, but if I can

remain on the Enbrel consistently I do okay.

>

> However, I have had chronic sinus infections for 20+ years with a

history of two sinus surgeries. Presently I have infections in both

ears, my sinuses, and, (despite having a lifelong history of having

perfect teeth & being very careful about my oral hygiene) my gums seem

to have become terribly infected as well. I have also had several white

ulcers on my tongue for the past two weeks- as soon as I get one to

clear up, another pops up nearby. My internist put me on antibiotics and

a steroid taper and told me to see my dentist as she doesn't do teeth

(despite the obvious relationship of my gum infection to my

immunosuppression).

>

> I use a daily sinus wash, do my oral hygiene exactly as directed,

change toothbrushes once a month (and soak it in hydrogen peroxide

between uses), and wash my hands religiously. I stay away from people

who are sick. Nonetheless, I seem to be a magnet for infections...

>

> Due to the infections, I have been off of Enbrel for over two weeks

and now am in a very bad flare for which I will be contacting my Rheumy

tomorrow. Due to the severity of the recent infections, I am afraid to

re-start my Enbrel- restarting too soon last fall led to a bout with

severe bronchitis that took almost three months to recover from.

>

> This is a continuing cycle for me- it feels very much like the old

" Whack-a-Mole " game. How do other folks manage this, short of living in

a bubble?

>

> Always sick, always tired, and always in pain.

> ~Marie

>

>

[Guest guest]

have you considered rinsing with a 3% food grade h peroxide solution?

you can get 35% at your health food store then put a t in 1/2 c water.

the 3% stuff in drug store is full of chemicals. my hygenist recommended

that as it kills off the bacteria. i do it after brushing b/f i go to

sleep. important to not put anything in your mouth for 10 mins after

doing it.

monique