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Robin,

I'm so sorry about your flare and your infections and clotting. That's no good.

How do you know your foot doesn't have a fracture? Be sure to mention

it at your upcoming appointment. Mention the fever, too.

Not an MD

On Fri, Nov 6, 2009 at 6:31 AM, Robin <robinmk02@...> wrote:

> Hello....

>

> I do not post often, so I hope you don't mind me asking questions.

>

> I have RA and was diagnosed about 3 years ago.  I was on Humira after being on

many oral meds.  Humira was truly a godsend for me, however, even after being

off of it for three months prior to surgery earlier this year, I developed a

very bad staph infection following surgery (along with DVT's and PE's).  I am

very afraid to restart the Humira even though the infection is long gone.  I

know that it lowers your immunity anyway, and after being literally on my death

bed from the infection and clots, I am just too afraid to restart.

>

> I started a very bad flare two days ago.  I have Prednisone at home for

emergencies (and this I would consider an emergency).  Due to the fact I could

barely walk 10 ft to my bathroom, I took the Prednisone, and it has helped.  My

joints are stilll swollen and red, but at least I can walk a bit better.

>

> My question is this.  The top of my right foot feels like it is broken! I know

it isn't, but it feels that way.  Has anyone else had this pain with RA?

 Further, the joints that are swollen are also numb!  Has anyone had that

before??  I was also running fever this time, something also that has never

happened before.  Anyone else have this happen to them??

>

> Thank you so much for your time and listening.  Again, I hope you don't mind

my posting since I do not post very often.  I probably have one bad flare a

year, and this is by far, the worst since the diagnosis.  I probably had RA a

couple of years prior to the diagnosis.  I had horrible shoulder joint pain,

which they thought was my rotator cuff, but after the RA Diagnosis, my hand

surgeon and rheumatologist said the rotator cuff and RA react similarly, so it

was probably RA all along.

>

> Thank you again!

>

> Robin

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________________________________

Robin,

The RA began affect my right middle finger first. I swelled and hurt. I did the

injections 2 times and they didn't help either time. However, they weren't

painful to get.

That was 3 years ago and today my finger is deformed and can't use it all. At

that time, my dr. wouldn't put me on MTX because RA factor wasn't high....I'm

seronegative. So is my mother and grandaughter who have it. I told her I told

her I hurt all over. I felt so helpless because I hurt and no one seemed to

believe me. I'm on the MTX pills now...they make me very sick for 2 days. I

don't know how long I will continue if it doesn't get better. If t hey felt our

pain one day I think they may appear to have empathy. No one knows it like we

do.

My grandaughter is on MTX injections and under control. She is now taking on

Sunday so she can have fun with friends on the week end.  My mother isn't on

anything now because she has been through all of the meds and decided it's not

for her.

I go to a new doctor next week and I'm feeling hopeful.

Good luck,

Judith If the injections don't work...find something that does.  Once is

gone..it's gone.

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Thank you, ..

You are right, I don't know if my foot is broken. The pain is subsiding, so that

is a good sign. I had not done anything to break my foot, but then again, I

have severe Osteoporosis, so I don't have to do anything to break anything!

I am going to mention it all to my Dr. tomorrow!

Thank you again, !! :)

Robin

> > Hello....

> >

> > I do not post often, so I hope you don't mind me asking questions.

> >

> > I have RA and was diagnosed about 3 years ago. �I was on Humira after

being on many oral meds. �Humira was truly a godsend for me, however, even

after being off of it for three months prior to surgery earlier this year, I

developed a very bad staph infection following surgery (along with DVT's and

PE's). �I am very afraid to restart the Humira even though the infection is

long gone. �I know that it lowers your immunity anyway, and after being

literally on my death bed from the infection and clots, I am just too afraid to

restart.

> >

> > I started a very bad flare two days ago. �I have Prednisone at home for

emergencies (and this I would consider an emergency). �Due to the fact I could

barely walk 10 ft to my bathroom, I took the Prednisone, and it has helped.

�My joints are stilll swollen and red, but at least I can walk a bit better.

> >

> > My question is this. �The top of my right foot feels like it is broken! I

know it isn't, but it feels that way. �Has anyone else had this pain with RA?

�Further, the joints that are swollen are also numb! �Has anyone had that

before?? �I was also running fever this time, something also that has never

happened before. �Anyone else have this happen to them??

> >

> > Thank you so much for your time and listening. �Again, I hope you don't

mind my posting since I do not post very often. �I probably have one bad flare

a year, and this is by far, the worst since the diagnosis. �I probably had RA

a couple of years prior to the diagnosis. �I had horrible shoulder joint pain,

which they thought was my rotator cuff, but after the RA Diagnosis, my hand

surgeon and rheumatologist said the rotator cuff and RA react similarly, so it

was probably RA all along.

> >

> > Thank you again!

> >

> > Robin

>

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Good luck at your Dr. appt. tomorrow.  I sure hope it is not broken.

 

Hugs,

 

Barbara

From: Robin <robinmk02@...>

Subject: [ ] Re: Questions

Date: Sunday, November 8, 2009, 9:57 AM

 

Thank you, ..

You are right, I don't know if my foot is broken. The pain is subsiding, so that

is a good sign. I had not done anything to break my foot, but then again, I have

severe Osteoporosis, so I don't have to do anything to break anything!

I am going to mention it all to my Dr. tomorrow!

Thank you again, !! :)

Robin

> > Hello....

> >

> > I do not post often, so I hope you don't mind me asking questions.

> >

> > I have RA and was diagnosed about 3 years ago. �I was on Humira after

being on many oral meds. �Humira was truly a godsend for me, however, even

after being off of it for three months prior to surgery earlier this year, I

developed a very bad staph infection following surgery (along with DVT's and

PE's). �I am very afraid to restart the Humira even though the infection is

long gone. �I know that it lowers your immunity anyway, and after being

literally on my death bed from the infection and clots, I am just too afraid to

restart.

> >

> > I started a very bad flare two days ago. �I have Prednisone at home for

emergencies (and this I would consider an emergency). �Due to the fact I

could barely walk 10 ft to my bathroom, I took the Prednisone, and it has

helped. �My joints are stilll swollen and red, but at least I can walk a

bit better.

> >

> > My question is this. �The top of my right foot feels like it is broken!

I know it isn't, but it feels that way. �Has anyone else had this pain with

RA? �Further, the joints that are swollen are also numb! �Has anyone

had that before?? �I was also running fever this time, something also that

has never happened before. �Anyone else have this happen to them??

> >

> > Thank you so much for your time and listening. �Again, I hope you don't

mind my posting since I do not post very often. �I probably have one bad

flare a year, and this is by far, the worst since the diagnosis. �I

probably had RA a couple of years prior to the diagnosis. �I had horrible

shoulder joint pain, which they thought was my rotator cuff, but after the RA

Diagnosis, my hand surgeon and rheumatologist said the rotator cuff and RA react

similarly, so it was probably RA all along.

> >

> > Thank you again!

> >

> > Robin

>

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Hi Judith,

I did MTX before anything else. I could not handle it. I was very sick for

five days. By the time I was feeling better, it was time for the next dose. I

did this for about four months and I had to finally stop. The headaches the MTX

gave me, were just horrible.

The Humira worked very well, however, since being so ill this year, I am just

afraid to take it again. I know the Humira did not cause my problems, but

knowing what can happen with Humira, I am just a bit leery.

I hope you are doing well, Judith. Thank you very much!!

Robin

>

>

>

>

>

> ________________________________

>

> Robin,

> The RA began affect my�right middle finger first. I swelled and hurt. I did

the injections 2 times and they didn't help either time. However, they weren't

painful to get.

> That was 3 years ago and today my finger is deformed and can't use it

all.�At that time, my dr. wouldn't put me on�MTX because RA factor wasn't

high....I'm seronegative. So is my mother and grandaughter who have it. I told

her�I told her I hurt all over. I felt so helpless because I hurt and no one

seemed to believe me.�I'm on the MTX pills now...they make me very sick for 2

days. I don't know how long I will continue if it doesn't get better. If t hey

felt our pain one day I think they may appear to have empathy. No one knows it

like we do.

> My grandaughter is on MTX injections and under control. She is now taking on

Sunday so she can have fun with friends on the week end.� My mother isn't on

anything now because she has been through all of the meds and decided it's not

for her.

> I go to a new doctor next week and I'm feeling hopeful.

> Good luck,

> Judith If the injections don't work...find something�that does.� Once is

gone..it's gone.

>

>

>

>

>

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  • 2 months later...

I have posted this same message wks. ago couldn`t get posted hope this gets

through I need some answers.

My grandson age 11 is experiencing hair loss Dr. Goldberg says this happens with

autoimmune disease.

Has anyone experienced this with their child?If so what can have you done? Dr.

Goldberg give us ingredients to look for in shampoos. I`ve seen side affect

with zoloft is hair loss.

He is now on celexa.

Appreciate any replies we are deeply concerned.

Also another question: Has anyone had their child on immunivor with no breaks?

My grandson started Nov. 10- 09 Dr. said to continue with immunivorwith no

breaks. Just curious if any other child is like ours. I know he is a tough case.

Hopefully this will get posted.

Carole

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