Re: Update: Getting Nowhere Fast

[Guest guest]

In my opinion, your docs are not being aggressive enough. My doc diagnosed me without the benefit of seeing any swelling, early in my disease. Now, I get swelling, but only in a few joints and this is because I have had success with several biologics and they started not working as well...I tried Rituxan, and he did not think I wasn't 'bad enough'. Problem was I had a severe allergic reaction to it. Now I'm on Orencia and it is finally starting to work; but it has been a long 5 months waiting for it to start working. Is there another rheumy you can go to?I am so so sorry to hear about all your troubles. The only way I have been able to work while waiting for the Orencia to kick in is to take prednisone, and I too have bone loss (hips and spine).

I wish you all the best.----- Original Message -----From: <catdelouise@...>Date: Tuesday, April 29, 2008 21:13Subject: Update: Getting Nowhere FastRheumatoid Arthritis > Hi All,> > I last checked in 2 or 3 months ago. Last month I got laid > off, which was really awful > because it was totally based on personal reasons and > jealousy! DH is also not working due > to health problems. We have some money in the bank, but > the only income is my > unemployment!> > During that time, actually since October, the Humira that I have > been taking pretty > successfully for 4 years started failing me. I have some > deformity, plus Osteopenia in my > hands, actually all over, and I am just 38. > > I have been on a lot of pain medication am currently taking 25 > mg Opana, twice a day, > plus 4 Percocet's 10/325, and it still doesn't cut the > pain! > > I advocated to go on Rituxan but my Rheum. and another Rheum. > are against it. The > feeling is that I am not swollen enough, that my RA doesn't look > that bad! So, now I > compromised and wish to go on Orencia.> > My doc is ordering MRIs of my left and right hands and wrists as > he does not see why I am > in so much pain.> > My feeling is who cares that you don't see it?! Should I > wait to become a cripple?> > In the meantime, I am down to being in too much pain to drive, > great fatigue, and memory > and concentration problems as I wait. I need to go back to > work but it has become > impossible!> > I feel like if the Humira worked than why would it hurt to try > another RA drug, even if they > don't think the pain is RA? Seems logical.> > A big problem is that the doctor who originally diagnosed my RA > has passed away and he > has seen me at my worst. > > Any thoughts? Thanks,> > > >

[Guest guest]

- is it possible that you could have fibromyalgia in

addition to the RA? I know that I have RA, osteoarthritis and

fibromyalgia. This means a lot of pain and a lot of meds on many

days. Even though Enbrel has put my RA into a good state, I have

pain without swelling from the fibromyalgia. Stress increases the

painful symptoms. I use hydrocodone (5/500 mg.) up to four pills a

day on these bad days and also use heat, cold packs and massage as

well as exercise (when possible) to get some relief. Sometimes I get

migraines on these bad days and have medication for that. Also, have

developed peripheral neuropathy and trigeminal neuralgia (I'm not

diabetic) and take pain meds for that (Neurontin and Trileptal).

From time to time, I get an RA flare, but it is hard for my doctor to

determine at times which disorder is triggering the pain. At any

rate, treating the pain is essential for a quality life. Perhaps

your RA doctors don't see any increase in the RA symptoms so are

reluctant to target that as the cause for your pain. They may

suspect the fibro. because the symptoms you describe are classic with

that disorder. Good luck in pursuing this. You deserve some relief

with all you are going through.

Ros

>

> ----- Original Message -----

> From: <catdelouise@...>

> Date: Tuesday, April 29, 2008 21:13

> Subject: Update: Getting Nowhere Fast

> Rheumatoid Arthritis

>

> > Hi All,

> >

> > I last checked in 2 or 3 months ago. Last month I got laid

> > off, which was really awful

> > because it was totally based on personal reasons and

> > jealousy! DH is also not working due

> > to health problems. We have some money in the bank, but

> > the only income is my

> > unemployment!

> >

> > During that time, actually since October, the Humira that I have

> > been taking pretty

> > successfully for 4 years started failing me. I have some

> > deformity, plus Osteopenia in my

> > hands, actually all over, and I am just 38.

> >

> > I have been on a lot of pain medication am currently taking 25

> > mg Opana, twice a day,

> > plus 4 Percocet's 10/325, and it still doesn't cut the

> > pain!

> >

> > I advocated to go on Rituxan but my Rheum. and another Rheum.

> > are against it. The

> > feeling is that I am not swollen enough, that my RA doesn't look

> > that bad! So, now I

> > compromised and wish to go on Orencia.

> >

> > My doc is ordering MRIs of my left and right hands and wrists as

> > he does not see why I am

> > in so much pain.

> >

> > My feeling is who cares that you don't see it?! Should I

> > wait to become a cripple?

> >

> > In the meantime, I am down to being in too much pain to drive,

> > great fatigue, and memory

> > and concentration problems as I wait. I need to go back to

> > work but it has become

> > impossible!

> >

> > I feel like if the Humira worked than why would it hurt to try

> > another RA drug, even if they

> > don't think the pain is RA? Seems logical.

> >

> > A big problem is that the doctor who originally diagnosed my RA

> > has passed away and he

> > has seen me at my worst.

> >

> > Any thoughts? Thanks,

> >

> >

> >

> >

>

[Guest guest]

, I think Ros is on to something. I have all the

illnesses that she has. She is right about the pain. You don't

know what is the cause since you have the other pains going on.

When you see your doctor discuss this posibility with him.

Yesterday and today my fibro has been really bad. I am also in the

process of trying to gen on another bialogic. My embrell was making

my neuropathy worse, so I had to be taken off it. It was working

with my RA. I was put on areva but had to stop because I am

alergic to it. Now I have to wait until it gets out of my system

befor I can start something else. I am on prednesone and plaquenil.

They are not doing the job. I hope you get some relief. Just

because they can't see the cause, It doesn't mean it is in your

head. Take care Jo Nell--- In

Rheumatoid Arthritis , " " <catdelouise@...>

wrote:

>

> Hi All,

>

> I last checked in 2 or 3 months ago. Last month I got laid off,

which was really awful

> because it was totally based on personal reasons and jealousy! DH

is also not working due

> to health problems. We have some money in the bank, but the only

income is my

> unemployment!

>

> During that time, actually since October, the Humira that I have

been taking pretty

> successfully for 4 years started failing me. I have some

deformity, plus Osteopenia in my

> hands, actually all over, and I am just 38.

>

> I have been on a lot of pain medication am currently taking 25 mg

Opana, twice a day,

> plus 4 Percocet's 10/325, and it still doesn't cut the pain!

>

> I advocated to go on Rituxan but my Rheum. and another Rheum. are

against it. The

> feeling is that I am not swollen enough, that my RA doesn't look

that bad! So, now I

> compromised and wish to go on Orencia.

>

> My doc is ordering MRIs of my left and right hands and wrists as

he does not see why I am

> in so much pain.

>

> My feeling is who cares that you don't see it?! Should I wait to

become a cripple?

>

> In the meantime, I am down to being in too much pain to drive,

great fatigue, and memory

> and concentration problems as I wait. I need to go back to work

but it has become

> impossible!

>

> I feel like if the Humira worked than why would it hurt to try

another RA drug, even if they

> don't think the pain is RA? Seems logical.

>

> A big problem is that the doctor who originally diagnosed my RA

has passed away and he

> has seen me at my worst.

>

> Any thoughts? Thanks,

>

>

>

[Guest guest]

Dear - Disability is not an option for any of us. Quality of life is also not an option. We need to fight for that. I recently had a severe bout with flares in every part of my body. My RD was on vacation so I asked the doctor on call to order me a remicade infusion. It worked really well and its been since friday but what a relief. I was to go on rituxan because the thought was that the remicade wasnt working. Since being off Remicade and MTX for six months due to an infection, I was on high doses of anti biotic which seemed to put me in remission but the minute I stopped it, I would flare again. The pain IS A SIDE EFFECT of inflammation. I would meet the drs half way and get a remicade infusion. It does the same thing as humira only it is much more effective. No messy syringes or sharpes around etc. It takes about 3 hours and when taken with MTX once a week, you wont need an infusion again for 8-10 weeks. It really helps with fatigue also. Make sure leucovorin is prescribed to rescue you from MTX if you arent already taking it. Pain does things to you mind and it makes the entire outlook on life seem very bleak. It knocks off your hormonal balance, raises your blood pressure, Dilates your pupils and overall is bad for your overall health. Your doctors work for you. I can really advocate for Remicade and have been on it since 2000. After a short vacation from it, I can see what a difference it really does make!!!!!! Good Luck. You are in my thoughts and prayers. Deborah

On Tue, Apr 29, 2008 at 10:13 PM, <catdelouise@...> wrote:

Hi All,

I last checked in 2 or 3 months ago. Last month I got laid off, which was really awful

because it was totally based on personal reasons and jealousy! DH is also not working due

to health problems. We have some money in the bank, but the only income is my

unemployment!

During that time, actually since October, the Humira that I have been taking pretty

successfully for 4 years started failing me. I have some deformity, plus Osteopenia in my

hands, actually all over, and I am just 38.

I have been on a lot of pain medication am currently taking 25 mg Opana, twice a day,

plus 4 Percocet's 10/325, and it still doesn't cut the pain!

I advocated to go on Rituxan but my Rheum. and another Rheum. are against it. The

feeling is that I am not swollen enough, that my RA doesn't look that bad! So, now I

compromised and wish to go on Orencia.

My doc is ordering MRIs of my left and right hands and wrists as he does not see why I am

in so much pain.

My feeling is who cares that you don't see it?! Should I wait to become a cripple?

In the meantime, I am down to being in too much pain to drive, great fatigue, and memory

and concentration problems as I wait. I need to go back to work but it has become

impossible!

I feel like if the Humira worked than why would it hurt to try another RA drug, even if they

don't think the pain is RA? Seems logical.

A big problem is that the doctor who originally diagnosed my RA has passed away and he

has seen me at my worst.

Any thoughts? Thanks,

[Guest guest]

>

> In my opinion, your docs are not being aggressive enough. My doc

diagnosed me without the benefit of seeing any swelling, early in my

disease. Now, I get swelling, but only in a few joints and this is

because I have had success with several biologics and they started

not working as well...I tried Rituxan, and he did not think I

wasn't 'bad enough'. Problem was I had a severe allergic reaction to

it. Now I'm on Orencia and it is finally starting to work; but it has

been a long 5 months waiting for it to start working. Is there

another rheumy you can go to?

> I am so so sorry to hear about all your troubles. The only way I

have been able to work while waiting for the Orencia to kick in is to

take prednisone, and I too have bone loss (hips and spine).

> I wish you all the best.

>

>

> ----- Original Message -----

> From: <catdelouise@...>

> Date: Tuesday, April 29, 2008 21:13

> Subject: Update: Getting Nowhere Fast

> Rheumatoid Arthritis

>

> > Hi All,

> >

> > I last checked in 2 or 3 months ago. Last month I got laid

> > off, which was really awful

> > because it was totally based on personal reasons and

> > jealousy! DH is also not working due

> > to health problems. We have some money in the bank, but

> > the only income is my

> > unemployment!

> >

> > During that time, actually since October, the Humira that I have

> > been taking pretty

> > successfully for 4 years started failing me. I have some

> > deformity, plus Osteopenia in my

> > hands, actually all over, and I am just 38.

> >

> > I have been on a lot of pain medication am currently taking 25

> > mg Opana, twice a day,

> > plus 4 Percocet's 10/325, and it still doesn't cut the

> > pain!

> >

> > I advocated to go on Rituxan but my Rheum. and another Rheum.

> > are against it. The

> > feeling is that I am not swollen enough, that my RA doesn't look

> > that bad! So, now I

> > compromised and wish to go on Orencia.

> >

> > My doc is ordering MRIs of my left and right hands and wrists as

> > he does not see why I am

> > in so much pain.

> >

> > My feeling is who cares that you don't see it?! Should I

> > wait to become a cripple?

> >

> > In the meantime, I am down to being in too much pain to drive,

> > great fatigue, and memory

> > and concentration problems as I wait. I need to go back to

> > work but it has become

> > impossible!

> >

> > I feel like if the Humira worked than why would it hurt to try

> > another RA drug, even if they

> > don't think the pain is RA? Seems logical.

> >

> > A big problem is that the doctor who originally diagnosed my RA

> > has passed away and he

> > has seen me at my worst.

> >

> > Any thoughts? Thanks,

> >

> >

> >

> >

>