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Medical Forum / Diseases and Disorders / Arthritis / May 2006

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Update & a question or two...

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Newsgroup Spambuster - 30 Apr 2006 09:08 GMT
Hi Gang,

Well, just got home from the hospital yet again!!!

Had to go back in because I really never got back to my baseline from
when I was in in late march.   After a month of multiple rounds of
antibiotics and jumps up in the steroids, I still was having troubles
with my breathing and had multiple infections going on despite the
continuous antibiotics.   So, got readmitted for both IV antibiotics and
IV steroids.

Had a sinus CT done, and as usual, my sinuses are a total mess and
infected.  Seems as though the constantly changing weather we are having
here in michigan this year and the alergens in he air are really beating
me down hard this spring!

Also had a nasty ear infection going on which ended up rupturing the
eardrum.   ENT says expect some hearing loss and will have to wait to
see if eardrum will heal on its own or if surgery will be needed to
repair it.  In the mean time, the ear has developed a most annoying high
pitched squeal that crops up intermittently throughout the day.

Chest x-ray showed beginnings of pneumonia, so am now home, but still on
an additional 10 days of 2 different IV antibiotics.   Each antibiotic
is done 2x a day, so have a visiting nurse coming in to help with the IV
stuff and a picc line in for now.   The antibiotics are new ones to me,
one is vancomycin and the other is cepheme.   Anyone heard of either of
these or had any experience with either of these?

Any of you have any experience with ruptured ear drums before???   If
so, did yours heal on its own?   Did you have the high pitched squealing
at all?   Did you experience any hearing loss, and if so, was it
permanent or just temporary?

While I was in the hospital, my RD's office called and left me a message
about the orencia.   I am responsible for the first $1000.00 each year
if I go with the orencia, wihich is a bit more than I can afford, so
they also left me the number of a foundation to call that often helps
people secure additional financial support for stuff like this.   So,
will not start the orencia until I can see if I can come up with some
additional help in paying for it!

In the mean time, I am off of my enbrel yet again and my RA is NOT happy
and letting me know it loud and clear, with my hands and wrists
screaming the loudest!!!

In the big scheme of things, all of this is not really all that big of a
deal, but I must say, I am a bit exhausted and a bit discouraged at this
point.   Sigh, I need a couple of strawberry margaritias!!!  Pass the
blender please.......LOL!!!

I'm so sorry that I haven't been around much or posting much, but please
know, dear friends, that I sill think of all of you and pray for you all
the time.  Always praying that you all are doing better, finding your
magic bullets, and living more productive, happy, & pain-free lives.

Blessings to each of you and continued prayers for many a pain-free day
for all of you!!!

Hugs,

Donna G
spodosaurus - 30 Apr 2006 09:25 GMT
> Also had a nasty ear infection going on which ended up rupturing the
> eardrum.   ENT says expect some hearing loss and will have to wait to
> see if eardrum will heal on its own or if surgery will be needed to
> repair it.  In the mean time, the ear has developed a most annoying high
> pitched squeal that crops up intermittently throughout the day.

> Any of you have any experience with ruptured ear drums before???

Yes, through violence though, not infection

>   If
> so, did yours heal on its own?  

yes, but it can still be problematic. No further ruptures, but I am
EXTREMELY careful cleaning it, even after so many years.

> Did you have the high pitched squealing
> at all?  

Loud noises cause static. Even loud conversations around me, say at a
dinner party. If I join in the conversation with a raised voice, it
happens faster. Watching terminator III in the theatre set it off a lot!
:-) It sounds like static from the radio and it's very unpleasant when
it gets tripped.

> Did you experience any hearing loss, and if so, was it
> permanent or just temporary?

Only at one extreme, and it is just a dip in my normal curve. It is
permanent, though it can only be detected using sophisticated testing.

The static sounds, though, get progressively worse each year.

Regards,

Ari

Signature

spammage trappage: remove the underscores to reply

I'm going to die rather sooner than I'd like. I tried to protect my
neighbours from crime, and became the victim of it. Complications in
hospital following this resulted in a serious illness. I now need a bone
marrow transplant. Many people around the world are waiting for a marrow
transplant, too. Please volunteer to be a marrow donor:
http://www.abmdr.org.au/
http://www.marrow.org/

DeeTee and Bob Taggart - 30 Apr 2006 11:35 GMT
We have a friend in Maryland who has been in and out of the hospital, too,
with the pneumonia and other associated breathing problems. She was just
finally diagnosed with Legionaires Disease. YOU BE CAREFUL!! Make sure your
doctors stay on top of this one, kiddo.
We are going back to Maryland for a week this coming month to visit with
her. As soon as she's out of the hospital this time, they're moving to
Kentucky to get away from the high polution of the DC area they live in.  I
can't wait to see her even if I have to wear a mask to do it.

You take care of yourself, Donna.....we love you.

DeeTee

> Hi Gang,
>
[quoted text clipped - 58 lines]
>
> Donna G
DianeW - 30 Apr 2006 20:48 GMT
Donna - Major gentle hugs to you!  You'ver really had a hard tie of
late, haven't you?  When I was in the hospital in Dec I was given both
of those IV abx. They made me very nauseaus and I had to have an
additional drug IV before they gave them. I had the vanco 4 times a day
and the other 2 times a day. I think it was the vanco that caused the
nausea because I had the cepheme.fir my sinus infection last year and
it did not make me ill. Worked great on the infection tho. Just be glad
you have a pic line because the vanco burns your veins bad!  I had one
dose and insisted on on pic line. They couldn't even touch my IV
without it hurting. Not to mention that it's not so good on your veins
general health.  Vanco is hard on your kidneys. My kidney enzymes are
still slightly (1 pt) elevated but the dr said it should return to
normal in about  a year.

Are you being treated by an ID or by an E & T?  I was treated by and
astute Infectious Disease doctor who tested my IGG levels to see if
they were low. He said that people with low IGG are suseptable to upper
respiratory problems and perhaps that was part of my problem too. I had
tossed it up to years of steroids, Enbrel, etc and really didn't think
he would find anything out of the ordinary. So when he asked, "Do you
mind if we run some tests on your immune system?" I said, sure, why
not? know full well they would come back normal or inconslusive like
they had for every other doctor. He ran the standard lupus panel, etc
with the addition of this IGG test.  He also ran the IGA I believe.
Surprise of Surprises, it came back low and I was diagnosed with Common
Variable Immunodeficiency.
http://www.primaryimmune.org/pubs/book_pats/e_ch03.pdf
You can imagine after all these years how surprised I was that
something finally showed up. There are 4 sub-classes of it and while
most people are only deficient in 1 or 2, all four were low for me. One
of the sub-classes cause your body to make auto-antibodies instead of
fighting what they are supposed to. Wow. So as the ID said, the good
news is that it is treatable with Intravenous Gamma Gobulin. Once a
month IV's of IVIG were not enough to bring my numbers up so now I get
it every three weeks. After 6 months my numbers were almost normal and
I haven't had ANY URI issues in over a year. Apparently if you don't
find out about it as a child, it usually shows up in your 50-60's when
your immune system naturally slows down.

So, not that I want to wish another dx on you, you might want to check
this out. My E & T was very negative about this whole idea when I went
back to him after I was treated by the ID. I had been seeing him for
two months before my rheumy sent me to the ID because I had the
infections for 4 months and nothing was helping. When I first saw the E
& T I had asked for IV abx and he pooh-poohed the idea saying that if I
was on oral abx long enough it would work but guess what? We know what
works and doesn't and oral abx just doen't cut it with me anymore.  I
couldn' t believe that faced with proof that the IV and IVIG had helped
he stood there and told me it probably a coincidence. Some kinda ego.

Anyway...Hope you feel better soon. Cyberhugs-DianeW
vickie b. - 30 Apr 2006 22:36 GMT
I've been told that I've lost both eardrums at least twice.  But have
no appreciable hearing loss.  My son lost an eardrum due to infection
at the age of four and it completely healed itself.  He has no hearing
loss.  

The body is a wonderful living thing,

Vickie B.
Newsgroup Spambuster - 03 May 2006 08:29 GMT
Ari and Vickie,

Thanks so much for both of your inputs on the ruptured ear drum issue.
Your posts give me hope that things will take care of themselves and not
leave me in too bad of shape.

Saw my pcp today and he said the ear looks soooooo much better, in terms
of inflammation, then it did a week ago, so I am happy about that!

Hugs,

Donna G
Newsgroup Spambuster - 03 May 2006 08:38 GMT
Diane W.,

thanks so much for all your input and information on the IV meds and the
other stuff.

I initially did start off with a regular IV, and it went bad very
quickly.   In fact, the vanco infiltrated and burned like crazy.   Now
that area is as hard as a rock.   It was the IV tech that insisted they
put in a picc line with the IV meds I was on.   I am thankful to him for
pushing the issue.

I have had mild queasiness with the IV meds, but am haviing an
incredible amount of fluid retention from the meds.   My pcp said it is
likely due to the potent antibiotics and the fact that I am on increased
doses of steroids as well.  I went from 1+ edema on saturday to 4+ edema
by last night.   Can't even get a pair of shoes on my feet because of
the swelling.   PCP is having me start lasix, 40 mg plus some potassium
to cover me.  Hopefully that will pull some of this fluid off of me!
Can't wait to be done with all of this mess.

I see my lung doctor next week and plan to talk with him about the stuff
you mentioned here.   May even print off your post and take it with me
to show him.   I will push for the testing of the IGG and such.   My pcp
is also going to have me get some bloodwork done to check my kidney
function status.

Will let you know if anything shows up.

Hope you are improving and doing better, as you sure have had a rough go
of it as well.

Hugs,

Donna G
DianeW - 03 May 2006 19:38 GMT
I'm glad to hear you are going to talk to your dr about the IGG.
Hopefully, it's nothing but it caught me totally by surprise. I think
the biggest surprise of all was that it was the ONE thing they hadn't
ever tested me for before.

I swelled up like that as well. Had the lasix and potasium. What was
supposed to be two days in the hospital turned into 3 weeks with all
the complecations. Then my PT went way way up and I had to get plasma.
Not a fun time. Hope you continue to improve. Keep us posted. Cyberhugs
DiW
Nann Bell - 04 May 2006 13:00 GMT
Ouch!  Vanc is known for being rough on the veins at any time and having it
infilitrate must be really nasty!  Tahnk goodness the IV tech had the sense
to push for a PICC.

Meanwhile, I hope you can get some rest between runs to the bathroom!  With
that kind of edema, the lasix may be keeping you up all night and all day.  
;-)

Signature

Nann
remove the Gator cheer to email me
Simply the thing I am shall make me live --- William Shakespeare

> Diane W.,
>
[quoted text clipped - 30 lines]
>
> Donna G
Paul T. Holland - 01 May 2006 00:50 GMT
orencia  (abatacept) is not [afaik] included in the BMS foundation
assistance program - but to find out for sure:

Pharmaceutical Company  Bristol-Myers Squibb Company
Program Name  Bristol-Myers Squibb Patient Assistance Foundation
Program Address  PO Box 1058
Somerville, NJ 08876
Phone Number
800-736-0003

> Hi Gang,
>
[quoted text clipped - 58 lines]
>
> Donna G
ladylove77 - 01 May 2006 01:44 GMT
Donna, have they named that hospital for you yet?  Surely they should by
now!  So sorry you are still going through all this hard stuff.  Do pray the
IV antibiotics will completely clear up all the infections and you will one
day really feel good again.  Surely hope you can get financial help for the
orencia so you can try it; it just might be your magic bullet.  Please take
care of yourself as much as possible; we love you and miss you.
Gwen

> Hi Gang,
>
[quoted text clipped - 58 lines]
>
> Donna G
Newsgroup Spambuster - 03 May 2006 08:40 GMT
LOLOLOL..............Gwen,   I think I am financing the hospitals new
wing they are building!  

Thanks for the prayers and well wishes, the mean a lot to me!!!

Praying you are doing well also.

Donna G
Newsgroup Spambuster - 03 May 2006 08:42 GMT
Thanks, Duckie and Alix for the hugs, can use all the hugs I can get.

Praying that you both are doing well and enjoying life!

Alix, how are things with you these days?  Hows your partner doing?

Duckie, how's John doing these days?  Have those two little fur babies
of yours adjusted to their new surroundings?   Are you dancing yet?

Donna G
Alix M. Hall - 04 May 2006 02:28 GMT
Well, I am recovering from a flare which I precipitated by working way more
than I am allowed to though brush fires that threatened my home on Easter
Sunday and Monday helped out a bit!!  But I am doing a little better--

Unfortunately, my erstwhile partner decided that I and Melbourne were too
boring for her.....sigh.....so I am single and rather enjoying it!!

right now going through the end of the school year and my baby who is taller
than I am is graduating from High School--she has been awarded a scholarship
which will pay 75% of her tuition at a state school, had gotten into the
college of her choice, got a superior with her choir at state competition
and very wonderful comments about her solo--of the WOW variety--and was
nominated for her performance in the school musical Aida for best female
vocalist in a musical by the Cappies--Gala is Friday and we will see if she
is the BIG WINNER!!  then prom on the 12th and graduation on the 20th--then
we all heave a gigantic sigh of relief!!

Signature

Love,
        Alix

Always remember, a cat looks down on man, a dog looks up to man,
but a pig will look  man right in the eye and see his equal".
- Winston Churchill

>
> Thanks, Duckie and Alix for the hugs, can use all the hugs I can get.
[quoted text clipped - 7 lines]
>
> Donna G
Harvey R. Stone - 04 May 2006 04:22 GMT
Lots of positive stuff and good things happening to those that mean the most
to you.   Here is hoping that the flare goes away soon and you keep on
keepen on.
Harv

> Well, I am recovering from a flare which I precipitated by working way
> more than I am allowed to though brush fires that threatened my home on
[quoted text clipped - 13 lines]
> we will see if she is the BIG WINNER!!  then prom on the 12th and
> graduation on the 20th--then we all heave a gigantic sigh of relief!!
Squirrely - 11 May 2006 09:25 GMT
Alix,

I hope you are doing better. I hope those fires I am hearing about are not
close to you again. Know you are in my thoughts.

Take care and lots of hugs to you.

Signature

  Love and hugs Jo

   (\__/)  .~    ~. ))
  /O O  ./      .'
 {O__,   \    {
   / .  . )    \
   |-| '-' \    } ))      Warning: squirrels.
  .(   _(   )_.'
 '---.~_ _ _&

> Well, I am recovering from a flare which I precipitated by working way
> more than I am allowed to though brush fires that threatened my home on
[quoted text clipped - 13 lines]
> we will see if she is the BIG WINNER!!  then prom on the 12th and
> graduation on the 20th--then we all heave a gigantic sigh of relief!!
Alix M. Hall - 11 May 2006 12:27 GMT
The current crop of fires is north of me by 15 miles--close enough that the
air quality is smoky and my asthma does not like it--but since we already
had a burn, it won't burn again--nothing left to burn--thank you for the
loving thoughts Squirrely--hope you are feeling better too---

Signature

Love,
        Alix

Always remember, a cat looks down on man, a dog looks up to man,
but a pig will look  man right in the eye and see his equal".
- Winston Churchill

> Alix,
>
[quoted text clipped - 20 lines]
>> we will see if she is the BIG WINNER!!  then prom on the 12th and
>> graduation on the 20th--then we all heave a gigantic sigh of relief!!
Nann Bell - 11 May 2006 16:47 GMT
> The current crop of fires is north of me by 15 miles--close enough that the
> air quality is smoky and my asthma does not like it--but since we already
> had a burn, it won't burn again--nothing left to burn--thank you for the
> loving thoughts Squirrely--hope you are feeling better too---

ahhh, I've been worrying about the state since hearing how the fires are
kicking up again.  Rainy season is still a ways off, too.  I'll never forget
the fires of '98 down there - grim.  We finally got rain up here the last
couple of days to save us from several weeks of extreme fire danger.  I'll
try to blow some of it down to Florida now.

Signature

Nann
remove the Gator cheer to email me
Simply the thing I am shall make me live --- William Shakespeare

Duckie - 04 May 2006 10:02 GMT
John has found paddling friends and work is going well so he is happy.
Just been handed the San Antonio hospital and is popping off to TX every
now and again.
Fur babies are happy and love the sunshine. The especially love the
carpeted stairs to John's office. They never had wall to wall before. It
allows them to lie on their backs and slide head first down the steps in
slow motion. Pretty funny.
I am dancing and my lesson is tomorrow. Do a tiny spotlight with Kevin
on a Sunday in May [19?  is that a Sunday]. All of 45 seconds long but
it will be my first time in front of this crowd. He said something about
making my skirt move. I have dance costumes and pants. I don't have
skirts. Been digging in my closet and found one I made which is nice but
the top is missing going on me by several inches. Managed to find extra
cloth in a drawer and I am in the process of attempting to sew something
to go with that skirt. lol
You get better in a hurray. Hopefully, the doctors will find something
in the tests which will help set you right again.
Duckie

> Thanks, Duckie and Alix for the hugs, can use all the hugs I can get.
>
[quoted text clipped - 6 lines]
>
> Donna G
Duckie - 01 May 2006 06:55 GMT
{{{{{{{{{{{{{{{{{{Donna}}}}}}}}}}}}}}}}}
Duckie

> Hi Gang,
>
[quoted text clipped - 58 lines]
>
> Donna G
Alix M. Hall - 02 May 2006 02:11 GMT
ditto Duckies hugs--no words--just gentle loving hugs and positive energy
winging your way

Signature

Love,
        Alix

Always remember, a cat looks down on man, a dog looks up to man,
but a pig will look  man right in the eye and see his equal".
- Winston Churchill

> {{{{{{{{{{{{{{{{{{Donna}}}}}}}}}}}}}}}}}
> Duckie
[quoted text clipped - 61 lines]
>>
>> Donna G
Newsgroup Spambuster - 03 May 2006 08:24 GMT
Yikes, DeeTee, sure hope your friend is going to be ok.  Scary stuff!

My doctors are working very hard to gain better control of all of these
infections and such, so hopefully we are at the tail end of this mess.

BTW, what's the latest on your house search situation?

Hugs to you and Bob!

Donna G
Newsgroup Spambuster - 03 May 2006 08:26 GMT
Paul,

The foundation that my RD's office told me to contact is called the
Healthwell foundation.   I don't really know much else about them, but
need to get a call into them to find out if they will be able to help me
with financing for the orencia.   I am hopeful!

How are you and Susie doing these days?

Hugs,

Donna G
Donna G. - 05 May 2006 18:01 GMT
Paul,

The foundation that my RD's office told me to contact is called the
Healthwell foundation.   I don't really know much else about them, but
need to get a call into them to find out if they will be able to help me
with financing for the orencia.   I am hopeful!

Are you familiar with this foundation at all?

How are you and Susie doing these days?
Hugs,
Donna G

Donna G.
.
.
.
ANGELS EXIST, but some times, since they don't all have wings, we call
them FRIENDS......
Paul T. Holland - 05 May 2006 23:02 GMT
hey there!

yup - they're just up the road from me. the foundation treasurer, Jerri
Scarzella, works at holy cross hospital, and the vp, Nancy Carteon is a
Rheumy out in california

for those that don't know of it, The HealthWell Foundation can be seen at:

www.healthwellfoundation.org

NOTE: the patient must receive treatment dispensed in the United States.

The HealthWell Foundation
P.O. Box 4133
Gaithersburg, MD 20878
info@healthwellfoundation.org
1-800-675-8416
9:30 am to 5:00 pm EST
Monday through Friday
Fax: (800) 282-7692

from the time they get the filled out application form [can be done on
website],
To begin the application process, please have the following information
available:

   * Patient demographic information (name, address, telephone number,
social security number, date of birth)
   * Patient insurance information (i.e., insurance card(s))
   * Patient income information (total household income, total household
size)
   * Prescribing/treating physician information (name, address, telephone
number, contact name if appropriate)

you can also apply by mail, takes a bit longer...

it  takes at least a week and a half to get a decision. - if approved, it is
good for one year.

this is not a 'huge' outfit, so money can run out for any given fiscal year,
so sometimes someone is qualified, but they don't have enough money for an
entire year,  to approve it.

"The HealthWell Foundation reserves the right to change its program in its
entirety or with respect to any applicant at any time with or without
notice."

but they also get new monies throughout the year, so you 'can' go back

i'm doing better, not there yet, but better. susie is all atwitter - going
to portland for mom's day and will be seeing new grandbaby  Penelope for
first time...

be well

paul

> Paul,
>
[quoted text clipped - 8 lines]
>
> Donna G
Adelle - 03 May 2006 16:13 GMT
No wisdom, just hugs. As many as you want.

Do you have any Lemon Zinger Tea (a Celestial Seasonings product)? Good
diuretic.

Adelle

> Hi Gang,
>
[quoted text clipped - 58 lines]
>
> Donna G
Nann Bell - 04 May 2006 13:00 GMT
((((((((((((((((((((Donna)))))))))))))))))))))))

My sister has had both eardrums pop from ear infections, though at different
times.  No permanent hearing loss either time, she healed up just fine.

I remember one of them popped overnight after Mother had to take her to the
ER the night before for pain medication until the ear infection meds kicked
in because the infection was so very painful.  It was a major relief to her
when it popped.

Signature

Nann
remove the Gator cheer to email me
Simply the thing I am shall make me live --- William Shakespeare

Squirrely - 11 May 2006 09:25 GMT
Donna,

I hope you stay home from the hospital this time. I am always thinking of
you. I sure hope you are getting well this time and healing right up with
all and that you are headed to the great road ahead.

I hope you will be able to get the med.

Here come some strawberry margaritias just for you. With a side of choc.
too.
Take care sweetie.

Signature

  Love and hugs Jo

   (\__/)  .~    ~. ))
  /O O  ./      .'
 {O__,   \    {
   / .  . )    \
   |-| '-' \    } ))      Warning: squirrels.
  .(   _(   )_.'
 '---.~_ _ _&

> Hi Gang,
>
[quoted text clipped - 58 lines]
>
> Donna G
 
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