To

[Guest guest]

Dear ,

Except for a few changes, I could have written your email just about 6 years

ago. My PA also started in my jaw, but unfortunately no one thought about

arthritis and I was only treated for TMJ. I had arthroscopic surgery done

on my jaw to clean it out and the pain increased about 10 times. I ended up

in pain management to just try and deal with the pain. At that point, I

didn’t even care what was wrong with me; I just had to get the pain to stop.

I can understand how your family doctor is hesitant to treat you by himself

with PA. Some of the newer drugs aren’t regularly prescribed by anyone but

rheumatologists, so other doctors don’t want to use them if they can help

it. It’s going to be hard only having a rheumatologist 300 miles away. It

took me 8 different rheumys before I found one that knew what was wrong with

me and was willing to try and help me. IN all that time, my arthritis was

spreading all over my bones. I had a bone scan done about 3 years after the

jaw pain started and I lit up the screen for arthritis in every joint in my

body. I’ve had it and do have it just about everywhere now. I also had it

go from my jaw to my feet, which seemed really strange to me at the time.

Then it hit my knees and they are completely destroyed by the disease. I

need both joints replaced, as soon as I can get some other health problems

taken care of.

The good news is so many of the new drugs have helped many people, things

like Humira, Enbrel, and Arava. I did well on Arava and felt at least a 30%

improvement, but it didn’t stop or slow down the progression of my disease.

It did help with the fatigue and the pain levels though. I recently stopped

it for 6 months due to repeated infections, but I have gone back on it again

to see if is still even helping me. Unfortunately for me, I’m allergic to

all the rest of the other injectionable biologic drugs, due to the

preservatives they use in the solutions.

All I can say is you are just beginning to start the process of finding the

right doctor and the right drugs to help you. It’s so easy to say, have

patience when you are so miserable and in so much pain. Do you have a pain

clinic near you? That might keep you from going insane until you get your

medication straightened out. I know my pain doctor saved my life, since I

was so desperate when I first went into see him. Sometimes it takes time

too to find a good pain doctor that you can trust and that can trust you.

There are so many alternatives out there besides Lortab, especially if it is

making you too sleepy. Just don’t give up.

Predinsone is a wonderful drug too, but it has so many side effects that

staying on it forever is really hard on your body. I’ve been on it now for

6 years and it has totally changed my appearance, damaged my bones, and

thinned my skin. Those are the things I know about…. I also have asthma and

have had to use it for that as well. So if I want to breathe or walk, I

have to keep taking it. I try to keep the amount as low as I can without

triggering another flare-up, but it’s not easy. Maybe your family doctor

would consider giving you a low dose of predinsone until you can get into

and be treated by the rheumatologists and/or maybe a pain specialist. I

wish I had more help for you, but for so many of us it has taken years or at

least months to find the right treatment plan. Even then once you get used

to your medications, sometimes they just stop working and you have to start

the process all over again. It’s not easy dealing with PA, but you have to

try and stay positive. Hope is the only thing that keeps me going

sometimes, along with my family and my 2 little dogs.

Good luck and write me anytime. I hope you find some answers soon and

remember this group is here so you aren’t alone dealing with all of this.

Take care, Fran in Florida