Re: Help! New RA/Spondyloarthropathy Diagnosis Jeanne

[Guest guest]

Hi Jeanne:

Yes, there is life after RA or even

spondyloarthropathy. It's not the life we had

envisioned for ourselves nor does it include some of

the activities we had hoped to continue or start, but

with the proper medication and treatment, I hope that

you will find yourself in less pain, and more

optomistic about the future.

I was dx with RA 8 years ago, and have since been dx

with Osteoarthritis and Fibromyalgia. I have had

Raynauds for longer than I have had RA. I am on many

medications, but they do let me live pretty much as I

wish, and do what I enjoy, body willing. I have

horses and love to ride - before RA I rode just about

every day, and over these past 8 years it has gotten

less and less, but I still get out there when I can.

I had to give up making and designing jewelry, too

hard on the hands, and miss it, but have replaced that

with reading a lot more lol. Not as much artistic

enjoyment, but I can deal with that.

I am sorry for your diagnosis, but your doctor seems

to be treating you very aggressively, which is the

best way to treat RA from the beginning, and there is

a lot of hope out there for new treatments to come. I

take Methotrexate, Enbrel, Mobic and Ultram for

treatment of my RA, and was able to scale back on the

Mtx from 20 to 10 mg. weekly, but below that I have

more pain. The Enbrel has been great for me, and I

have been on it about 6 months now, and have had a lot

of benefit from it. I hope the same goes for you.

Take care, and hang in there -

Kathe in CA

--- Jeanne Bruno <jeannboo@...> wrote:

> Hello,

> My name is Jeanne and I've recently been

> tentatively diagnosed with Spondyloarthropahy or

> RA---It all began at the end of December with a red,

> swollen third toe on my left foot. Within a few

> weeks it had spread to my right thumb, right

> shoulder and left knee. The docs had initially

> treated it with prednisone and NSAID's...no luck, it

> kept going. So quick, so bad that my left knee cap

> is torn away from the tendons. I was an active,

> exercising type 46 year old otherwise healthy lady.

> This has been absolutely devastating. I now have a

> rheumy I trust and it working with me. I just took

> my second dose (50 mg) of Enbrel and am on MTX (5),

> Prednisone 10 mg. daily, Azulfidine - 500 mg. 2X a

> day, Dolobid - 500 mg. 2X a day, Diovan - 160 mg. 1x

> a day (this was the ONLY drug I was on prior to this

> tornado that hit me-as I've had HBP for a few

> years), Prilosec - 20 mg. X1 day, Calcium 500mgX3 a

> day, Xanax (to ease the stress of the

> diagnosis:)....5mgX2 day, Folic Acid - 800 mcg

> daily...and that's all folks. I feel like a

> walking medicine cabinet! The doc said that if the

> Enbrel continues to work well (and it is so far) he

> will wean me off the MTX, Azul and Dolobid. He is

> leaning towards the Spondo diagnosis because this

> all started in a digit (my toe) and I have a

> positive HLA B27 test. I've also, for several years

> now, had a high C-Reactive Protein. I sometimes

> feel like I have " hot " spots popping up on my body

> -- various locations and my face and neck get

> terribly flushed. Has anyone else had this type of

> odd reaction--my doc and the Enbrel reps are

> puzzled.

>

> Any suggestions or support would be greatly

> appreciated. Is there life after this diagnosis?

>

> With kind regards,

>

> Jeanne

>

>

>

>

> ---------------------------------

>

> Bring photos to life! New PhotoMail makes sharing a

> breeze.

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

Kathe

" To ride a horse is to borrow freedom. "

__________________________________________________

[Guest guest]

Thanks so much for the support Kathe. It just feels overwhelming right now. I

will stay in touch. Have a great Sunday!

Blessings,

Jeanne

Kathe Sabetzadeh <lv2ryd@...> wrote:

Hi Jeanne:

Yes, there is life after RA or even

spondyloarthropathy. It's not the life we had

envisioned for ourselves nor does it include some of

the activities we had hoped to continue or start, but

with the proper medication and treatment, I hope that

you will find yourself in less pain, and more

optomistic about the future.

I was dx with RA 8 years ago, and have since been dx

with Osteoarthritis and Fibromyalgia. I have had

Raynauds for longer than I have had RA. I am on many

medications, but they do let me live pretty much as I

wish, and do what I enjoy, body willing. I have

horses and love to ride - before RA I rode just about

every day, and over these past 8 years it has gotten

less and less, but I still get out there when I can.

I had to give up making and designing jewelry, too

hard on the hands, and miss it, but have replaced that

with reading a lot more lol. Not as much artistic

enjoyment, but I can deal with that.

I am sorry for your diagnosis, but your doctor seems

to be treating you very aggressively, which is the

best way to treat RA from the beginning, and there is

a lot of hope out there for new treatments to come. I

take Methotrexate, Enbrel, Mobic and Ultram for

treatment of my RA, and was able to scale back on the

Mtx from 20 to 10 mg. weekly, but below that I have

more pain. The Enbrel has been great for me, and I

have been on it about 6 months now, and have had a lot

of benefit from it. I hope the same goes for you.

Take care, and hang in there -

Kathe in CA

--- Jeanne Bruno <jeannboo@...> wrote:

> Hello,

> My name is Jeanne and I've recently been

> tentatively diagnosed with Spondyloarthropahy or

> RA---It all began at the end of December with a red,

> swollen third toe on my left foot. Within a few

> weeks it had spread to my right thumb, right

> shoulder and left knee. The docs had initially

> treated it with prednisone and NSAID's...no luck, it

> kept going. So quick, so bad that my left knee cap

> is torn away from the tendons. I was an active,

> exercising type 46 year old otherwise healthy lady.

> This has been absolutely devastating. I now have a

> rheumy I trust and it working with me. I just took

> my second dose (50 mg) of Enbrel and am on MTX (5),

> Prednisone 10 mg. daily, Azulfidine - 500 mg. 2X a

> day, Dolobid - 500 mg. 2X a day, Diovan - 160 mg. 1x

> a day (this was the ONLY drug I was on prior to this

> tornado that hit me-as I've had HBP for a few

> years), Prilosec - 20 mg. X1 day, Calcium 500mgX3 a

> day, Xanax (to ease the stress of the

> diagnosis:)....5mgX2 day, Folic Acid - 800 mcg

> daily...and that's all folks. I feel like a

> walking medicine cabinet! The doc said that if the

> Enbrel continues to work well (and it is so far) he

> will wean me off the MTX, Azul and Dolobid. He is

> leaning towards the Spondo diagnosis because this

> all started in a digit (my toe) and I have a

> positive HLA B27 test. I've also, for several years

> now, had a high C-Reactive Protein. I sometimes

> feel like I have " hot " spots popping up on my body

> -- various locations and my face and neck get

> terribly flushed. Has anyone else had this type of

> odd reaction--my doc and the Enbrel reps are

> puzzled.

>

> Any suggestions or support would be greatly

> appreciated. Is there life after this diagnosis?

>

> With kind regards,

>

> Jeanne

>

>

>

>

> ---------------------------------

>

> Bring photos to life! New PhotoMail makes sharing a

> breeze.

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

Kathe

" To ride a horse is to borrow freedom. "

__________________________________________________