Re: people with RA--LONGSTANDING RA

[Guest guest]

,

Thank you for sharing that story. I've had RA for nearly 20 years, started AP

about 6 (???) years ago, stopped it, had a baby, and now I'm ready to roll again

(on the AP, that is). A nasty little voice in my head tells me it's not worth

it, I've waited too long, blah blah blah. Of course, family & doctors want me

to do something that will fix me fast (via DMARDS and those " fantastic " drugs

that are advertised so effectively on TV) because they are tired of seeing me

tired and in pain. I should probably have a hip replaced, but am on 15 mg of

prednisone daily (ack!) & have been told no doctor would touch me (surgically)

while I'm on that dose.

Of course YES I know the negative side-effects of prednisone, but I also know

that I have three children, one of whom is a 5yo with a brain defect, and I

simply must function.

So, all of this hoo-hah to thank you, , for giving me hope & reminding me

it isn't too late. I have an AP dr appointment Feb. 15.

How long did it take for you to begin feeling relief from AP, (and

anyone else with long-standing disease)? What else do you do to control the

disease? Diet? Can you exercise? How?

Many thanks. You all are my lifeline,

kjdel1977@... wrote:

I have had R.A. (diagnosed) for 31 years, but am sure I should have

been

diagnosed much earlier. I started with pain mainly in the knees and then had

the butterfly rash across my cheeks. Then I was diag. with lupus and then RA

w/lupus tendencies. I have had it all--splenectomy to stop my immune system

(idiopathic thrombocytopenia), pleurisy, many joint replacements, etc., etc.

The first real relief I got was with I.V. Clindamycin. Antibiotics have

saved my life; however, I wish I had known about this treatment much earlier

Best wishes,

**************Biggest Grammy Award surprises of all time on AOL Music.

(http://music.aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp00300000002\

5

48)

[Guest guest]

:

I was diagnosed with R.A. with Lupus tendencies approximately 31 years ago,

although I knew I had problems before that time. My treatment for the

original diagnosis of ITP, as I remember it, was 10 mg. prednisone daily for

one

year--then it was recommended that my spleen be removed to correct my platelet

deficiency. After surgery, the platelets rebounded, but my joint aches

began; and I was subsequently diagnosed with Lupus because of a butterfly rash

and

positive ANA. I tried to ignore that diagnosis for a year until my hand

swelled up quite large and I went to a rheumatologist. I did fairly well on a

gold shot every two weeks and 5 mg. of prednisone daily for a few years,

although I became anemic and developed pleurisy during that time. (By the way

gold salts (shots) have antibiotic properties.) The doctor then combined gold

shots with plaquenil. I developed horrible sores in my mouth and had

protein in my urine. The doctor then switched me to methotrexeate, which

initially

made me quite nauseus. Over the course of approx. nine months on the

methotrexeate, my joint pain diminished but the bloodwork looked worse. I

became

extremely anemic, my R.A. factor skyrocketed, my liver enzymes went very high,

my SED rate always hovered around 100, plus my CRP (C-reactive protein)

became quite elevated. During all this time, I continued to take 3 to 5 mg. of

prednisone daily. Approximately 17 years ago, I went to an infectious disease

doctor; and, after encouragement from me, I was tested for Lyme's Disease.

I tested genus-species specific for borrelia burgdorfori. My first treatment

for Lyme consisted of treatment with amoxicillin with probenecid and I

herxed horribly (high fever and rash). I also tried minocycline orally, which

helped some. Subsequently, I did a short course of I.V. Rocephin. I felt so

wonderful, that I asked the docs to pull my pic line, and my daughter and I took

a wonderful (first-time) trip to Florida. I developed a sun rash but

returned home feeling healed for a while. When the R.A./Lupus/Lyme returned, I

was put on weekly I.V. treatments of Clindamycin. This worked beautifully for

approximately 5 years and enabled me to reach full retirement for teaching.

I tried oral doxycycline (it upset my stomach). Right now I am taking

ranitidine (to protect my stomach), 4 mg. prednisone daily, 500 mg amox, 2X

daily,

and one azithromycin, 250 mg, 1X daily, plus one Celebrex (250 mg.) 1X daily.

It has truly been a long road back, including a colon rupture with

colostomy bag/surgery for colostomy reversal, breast cancers (insitu and

invasive),

and on and on. If you have read this far and are not too bored, I'll give my

honest opinion that my whole mess started with a tick bite back in my

twenties. The doctors at the time thought I had a spider bite and the flu.

Well,

for the first time in my life, I felt compelled to give a synopsis of this

struggle I and each of you endure in our myriad searches for relief. I wish

you

and everyone health in our search for answers. It's the wee hours of the

morning, so I hope I make sense. At least I am feeling better and my

bloodwork is almost normal at this time.

Best wishes,

**************Biggest Grammy Award surprises of all time on AOL Music.

(http://music.aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp00300000002\

5

48)