Re: PA, medical advice

[Guest guest]

Hi everyone,

I've been off-line for awhile. Just taking me a long time to

recover from a car accident and I'm doing pretty well now.

The talk regarding the internet and advice has prompted me to add my

two cents worth. I've had PA for 10 years; aggressively treated for

2 years. I'm also retired from the medical profession. This site

is 5 star. Since it is screened, everyone is trying to help

everyone else. I don't see the snake oil pitches nor PA wannabees.

This is not my only chronic illness and I have been involved in

other self-help groups. Monitored groups are the best; open to all

comers can be the worst because it can attract people with other

agendas and psychological problems that use the illness as their

excuse for all their social ills, whether they have the illness or

not.

I value the information I receive here. For me, it is food for

thought and prompts me at times to question my rheumatologist that I

see at the VA about meds or side effects or outcomes that I read at

this site. My rheumy is a fellow at the nearby university and I

have a lot of faith in him. He seems very familiar with PA and any

new developments, he takes time with me and listen to my concerns

which I keep short since I review what I want to discuss, and if he

doesn't know something he says so and will try to find out (such as

keeping an ear open for any studies of the new arthritis meds, Arava

and Embrel with PA). And if I learn something through this site or

in my own experience (such as using benzocaine in Orabase for oral

ulcers due to MTX or Imuran), I tell him. Now, if this weren't the

case, I would go on to the next rheumy. This is a lifelong illness

for me and I need someone that I can trust and feel comfortable with

to help me. PA is probably 10 times less common than RA and there

are different types of PA (such as assorted fingers and toes versus

symmetrical large joints with and without spinal involvement). For

anyone to assume that their rheumy is knowledgeable about all types

of PA is a mistake. The first rheumy I went to was familiar about

the more common finger and toe type. Well, I didn't have that

type. He didn't listen to me either. And his treatment was NSAIDs

which was totally inadequate. After 2 visits I never went back and

went to the Mayo Clinic. He was an excellent rheumy; listened to

me, treated me appropriately and was quite knowledgeable on all

aspects of PA. I eventually switched to the VA because the

insurance was taking too much of my time to untangle. And I've been

very pleased with my care at the VA.

I deserve the very best care and so do all of you.