Numbers are good??

[EdieB]

Hi all just got back from the Rheumatologist. He said my numbers are good. Almost normal. Although me knees are so bad and my toes want to curl, he took me off the Methotrexate. He said at this point I need to see an Orthopedic Dr because my knees are probably shot.

So my question is... Does RA go away? The Dr said if I have a flare to call him and go back on the Methotrexate. He wants me to go to physical therapy and get an epidural in my back.

I’m a bit concerned because I didn’t think RA was curable.

[helixhelix]

Hmmm, some doctors do seem very quick to reduce meds. Others are much more cautious - mine waited until I'd been in a stable remission for maybe 18 months/2 years before trying and reduced one dose at a time. Didn't work for me, and I was back up to original dose within a few weeks. However apparently some people can stay in remission without drugs for a long time. Which is not the same as being cured.

However I'm not sure I appreciate your doctor's cavalier attitude about your knees. Has he/she even bothered to do any imaging of knees and feet to see what's up? And almost normal is not normal! If I were you I'd. E asking my GP to refer me for a second opinion.

[EdieB in reply to helixhelix]

I am a bit concerned. I am going to make an appointment with the Orthopedic Dr. hopefully he will do imaging etc so I can go back to the Rheumatologist and say nope not ready for replacements now what?

I’m going to write every day how I’m feeling and if after a couple weeks the exhaustion heaviness in my shoulders and the hurt in my ankles doesn’t go away I’ll call the Rheumatologist back! Yikes

[dbestdeb]

My numbers are always good, except my liver enzymes and my vectra. I’d be in big trouble if my dr didn’t understand that the numbers don’t tell the whole story. I don’t think RA goes away, but can fade into the background during times of remission. When I feel good, I know I’m just one trigger away from a flare and feel like I’m walking a thin line trying to keep everything just so.

I hope things work out for you and your knees and toes feel better.

[EdieB in reply to dbestdeb]

The more I have thought about this the more I want to call his office for an explanation of “my job is done from the Dr. If he gets upset so be it. Im not comfortable with his statement and will find another Dr if need be

[helixhelix in reply to EdieB]

I second that idea! It's your body so you want the best for yourself.

[helixhelix]

I've just looked up the NICE guidance on reducing drugs....here it is.

"In people with established rheumatoid arthritis whose disease is stable, cautiously reduce dosages of disease-modifying or biological drugs. Return promptly to disease-controlling dosages at the first sign of a flare.

In any person with established rheumatoid arthritis in whom disease-modifying or biological drug doses are being decreased or stopped, arrangements should be in place for prompt review."

Not sure what your doctor is doing quite follows that guidance! Do you at least have arrangements in place for a prompt review?

[EdieB in reply to helixhelix]

The Dr said if I have a flare I should call the office and let them know I am starting back on the Methotrexate. I don’t believe I should be the one to make that decision. I’m going to call his office today. Very concerned that I’m being dropped like a hat.