Re: New Member Here, Needs Help!

[Guest guest]

Wow - no wonder you're in so much pain. The stuff you are taking is

only for pain - its not treating the RA and inflammation. Sounds like

you need a new Rheumatologist - this one sounds like a quack.

Bloodwork is important and a biopsy on the nodules might reveal more,

BUT in the meantime, you'd think he'd be giving you something besides

pain meds.

What happened when you figured out why you were flaring? What trigger

did you discover? Also, its been my understanding that Humira and the

others are supposed to be used in conjunction with another RA med like

prednisone or MTX. Best of luck to you.....Doreen

[Guest guest]

, my heart goes out to you! I'd get another opinion on the

suggestion to biopsy. I've never heard of that and it seems rather

invasive. Please let us know how it turns out.

Suz (in AZ)

In , " " <catdelouise@...> wrote:

>

> Thank you Toni, for referring me to this group! My story is so

long, but in 2003 I was

> diagnosed with RA from a fabulous Rheum. in NYC who has since passed

away. I found a

> new Rheum. local to me and I always had the feeling that he did not

believe I had RA, but

> he gave me Rxs for Humira and that was all I cared about.

>

> In October the Humira stopped working for me after four years and I

have had a real battle

> with my Rheum. in letting me try either Orencia or Rituxan. I

figured out a few months

> later what was going on, why I was flaring. My Rheum. tried to

double my dose of H. for 6

> weeks and it did nothing. Then he wanted me to get MRIs of my hands

which revealed a

> lot of nodules. But since they were closer to my tendons, he

wouldn't move forward with

> RA treatment!

>

> Now he is recommending that I see a hand surgeon and have my nodules

biopsied?! Plus,

> he ordered new BW. Has anyone had their nodules biopsied? He says

that will reveal what

> is wrong with me.

>

> Meanwhile, even with the pain managment I am getting, I cannot take

care of my son b/c I

> cannot diaper or dress him. I kept my son in daycare b/c I cannot

handle him all day even

> though I love him so much. I got laid off from work in March and

have since gotten sicker!

> But when I was working I used to nod off at the wheel, I was so

fatigued and tired. At

> least now, I try to get a nap a day.

>

> I feel like my life is on complete hold and have never felt this

sick before. I take 60 mg. of

> Opana a day, and 4 325/10 percs a day, and I still have pain.

>

> Any thoughts are appreciated!

>

>

>

[Guest guest]

Welcome to this wonderful group.I am so sorry to hear that you are

feeling so sick, and having so much pain.What a shame that the Rheumy you loved

has passed away.I find that we all need the best Rheumy we can find, and one who

really cares and understands about the diseases we have, and how to manage us so

we can function better.I moved to Florida 4 years ago from Cape Cod, and had to

find all new doctors.I called the hospital here, and talked to a nurse about

finding a great doctor here.I know they can't recommend any to you, so & nbsp;I

asked her if & nbsp;her mother or sister was sick, who would she want to take care

of them.I went to this dr. and he is so perfect for my husband and me.He is

everything I could want in a dr., plus, he recommended me to the best

Rheumy, & nbsp;who, I thank God everyday that I have her.Maybe you should try

another Rheumy, and search for the perect one for you.It is so very

important & nbsp;to our well being, and we

have to feel the dr. is doing the best for us, physically, & nbsp;emotionally,and

mentally.We all have serious health issues, and we have to be able to tell our

dr. everything, and have them listen to us, and really care about us.We need

total faith in the Rheumy we choose.I do hope this helps you.I hope you will be

feeling better soon, and I wish you pain free days.I care, and here are some

hugs for you.Barbara & nbsp;

From: & lt;catdelouise@... & gt;

Subject: [ ] New Member Here, Needs Help!

Date: Friday, May 30, 2008, 1:46 AM

Thank you Toni, for referring me to this group! My story is so long, but in 2003

I was

diagnosed with RA from a fabulous Rheum. in NYC who has since passed away. I

found a

new Rheum. local to me and I always had the feeling that he did not believe I

had RA, but

he gave me Rxs for Humira and that was all I cared about.

In October the Humira stopped working for me after four years and I have had a

real battle

with my Rheum. in letting me try either Orencia or Rituxan. I figured out a few

months

later what was going on, why I was flaring. My Rheum. tried to double my dose of

H. for 6

weeks and it did nothing. Then he wanted me to get MRIs of my hands which

revealed a

lot of nodules. But since they were closer to my tendons, he wouldn't move

forward with

RA treatment!

Now he is recommending that I see a hand surgeon and have my nodules biopsied?!

Plus,

he ordered new BW. Has anyone had their nodules biopsied? He says that will

reveal what

is wrong with me.

Meanwhile, even with the pain managment I am getting, I cannot take care of my

son b/c I

cannot diaper or dress him. I kept my son in daycare b/c I cannot handle him all

day even

though I love him so much. I got laid off from work in March and have since

gotten sicker!

But when I was working I used to nod off at the wheel, I was so fatigued and

tired. At

least now, I try to get a nap a day.

I feel like my life is on complete hold and have never felt this sick before. I

take 60 mg. of

Opana a day, and 4 325/10 percs a day, and I still have pain.

Any thoughts are appreciated!

[Guest guest]

Hi Doreen,

My doc isn't giving me anything now, I get my pain meds from my PCP, he is

great.

I don't know what triggered my immunity to Humira, I guess my body just got wise

to it. I

have only been on Mono-therapy, biologics and nothing else, and it has always

worked for

me.

My old Rheum. decided to experiment with me with mono-therapy and it worked for

a

long time.

>

> Wow - no wonder you're in so much pain. The stuff you are taking is

> only for pain - its not treating the RA and inflammation. Sounds like

> you need a new Rheumatologist - this one sounds like a quack.

> Bloodwork is important and a biopsy on the nodules might reveal more,

> BUT in the meantime, you'd think he'd be giving you something besides

> pain meds.

>

> What happened when you figured out why you were flaring? What trigger

> did you discover? Also, its been my understanding that Humira and the

> others are supposed to be used in conjunction with another RA med like

> prednisone or MTX. Best of luck to you.....Doreen

>

[Guest guest]

Hi - I guess I am shocked that your initial Rheumatologist

went directly to Mono-therapy and biologics rather than

starting " smaller " . But, I know you loved him and had faith in him, so

I respect your judgement. Perhaps a second opinion is still in order.

The longer you are on those High-Potency pain killers, the more your

chances increase for addiction to them - something that would only

compound your arthritis pain that you have now. My prayers are with

you that you get the correct treatment soon......Doreen

[Guest guest]

,

I'd go for the biopsy. The information obtained may be valuable.

Why not ask your rheumatologist if he doubts your diagnosis?

Getting a second opinion from another rheumatologist would also be good. How

about a rheumatologist at the Hospital for Special Surgery in NYC?

I'm sorry you're feeling so bad, and I hope you get some relief soon.

Not an MD

> > From: catdelouise@...> Date: Fri, 30

May 2008 01:46:23 +0000> Subject: [ ] New Member Here, Needs Help!> >

Thank you Toni, for referring me to this group! My story is so long, but in 2003

I was > diagnosed with RA from a fabulous Rheum. in NYC who has since passed

away. I found a > new Rheum. local to me and I always had the feeling that he

did not believe I had RA, but > he gave me Rxs for Humira and that was all I

cared about.> > In October the Humira stopped working for me after four years

and I have had a real battle > with my Rheum. in letting me try either Orencia

or Rituxan. I figured out a few months > later what was going on, why I was

flaring. My Rheum. tried to double my dose of H. for 6 > weeks and it did

nothing. Then he wanted me to get MRIs of my hands which revealed a > lot of

nodules. But since they were closer to my tendons, he wouldn't move forward with

> RA treatment!> > Now he is recommending that I see a hand surgeon and have my

nodules biopsied?! Plus, > he ordered new BW. Has anyone had their nodules

biopsied? He says that will reveal what > is wrong with me.> > Meanwhile, even

with the pain managment I am getting, I cannot take care of my son b/c I >

cannot diaper or dress him. I kept my son in daycare b/c I cannot handle him all

day even > though I love him so much. I got laid off from work in March and have

since gotten sicker! > But when I was working I used to nod off at the wheel, I

was so fatigued and tired. At > least now, I try to get a nap a day. > > I feel

like my life is on complete hold and have never felt this sick before. I take 60

mg. of > Opana a day, and 4 325/10 percs a day, and I still have pain.> > Any

thoughts are appreciated!> >