Tell me what this means?
I saw the new rheumatologist today---really liked him by the way. He threw that phrase out there...not sure what it means? I think he was just saying it was a possibility at this point? Not really sure- he ordered "more extensive" blood work too. He said he wants me to get of the Pred. so he can see how I do off it. He said the Plaquinel can take up to 6 months to fully work..which I knew. He said since I have Graves too, it's hard to tell how much pain is from the Graves and how much is from the RA...he wondered how long I was expected to be on the PTU for the Graves. I don't know at this point, but I'd love to be off of it! I just had labs run for that this morning too..so we'll see what those levels look like and go from there. He doesn't really want to put me on MTX unless absolutely necessary because that and the PTU I take are both immunosuppressants (SP?) and that's not ideal to be on 2 of those I guess......
He asked me how I slept...I said not well. He said not getting enough rest and any extra stress is NOT GOOD for RA....can't really reduce the stress I have unless I win the lottery....and he said the OTC sleeping pills I take aren't really helping me get "true" rest...Hmm...
Let's see....that's all I can remember right now....but overall it went really well. I'd like to see him again- he said he was going to leave the next appt. "open". ( in case I wanted to go back to my original rhumy...which I don't.) So after I get the results from my labs (he said they can take up to 3 wks...) we'll go from there.
Amy Lynn--
Seronegative RA is indeed RA -- it's just not showing up in usual bloods, as dordale explained. A lot of us here are seronegative (meaning we don't have a rheumatoid factor) but other tests show we have the inflammation associated with RA or other inflammatory arthritises.
In my case, with Still's, it would be very unusual to have a positive Rheumatoid factor.
Liking the doctor is the first big step in getting some positive results. Sounds like you have a "keeper" there!
J
I really hate the whole seronegative thing. So many people suffer from RA way to long before getting a proper diagnosis and treatment. As the others have stated....being seronegative certainly does not mean that someone doesn't have RA. If you've been on prednisone for quite some time, going off of it could be interesting. I like to keep an RA journal to record things. Don't hesitate to call the office if you start having a hard time once you stop the pred. If you end up in a flare, you might even want to call and see if there is a same day appointment so that the doctor can actually see what is going on. What kind of pain do you feel with Graves? I've never heard of Graves being painful either so that caught my interest. I'm hypothyroid myself which for many people causes fatigue and issues losing weight. I'm very happy for you that you've found a doctor that you like and are comfortable with. In my opinion, that's half the battle. Did they check your sed rate or is that one of the results you are waiting for? As far as the true rest...did he leave it hanging out there just like that? He didn't offer anything else or have any suggestions? Good luck to you sweetie and let us know how you're doing.
Peace & Love...Neasy
Sorry I just kind left last night---got busy at work, and then headed home.
That would make sense, since my RA factor is negative. That must be why he was saying it was possibly seronegative. My first sed rate was 33, then in May is was down to 25 ( I think? In the 20's somewhere...) I'm really not sure what other blood work he's doing this time--but he said they'll send me a copy of the results also.
As far as the Graves---joint pain is common evidently. Way back last Sept/Oct when I was first seeing a Dr for the Graves symptoms I was also seeing a Dr for this "hand pain." My family Dr thought it was carpel tunnel...he sent me a nueruologist (SP?) and said it wasn't CT, but he suspected RA..he referred me to the rhuematogist. So it's December by then....the rheumy also suspected RA, but he said joint pain is common in Graves, so it was hard to determine which it was. He wanted to start me on meds then, but I said," how about we wait until I've been on the meds for the graves for a while and see if it helps the joint pain?" He agreed to that....so I was on PTU for the Graves for 4 months...saw the rheumy again....I was in more pain than before....ran more blood work, and although the RA factor was neg. he determined from the other blood work and x-rays that it was RA.
So Juliah- You had your thyroid removed? I'm really hoping to just go into remission...and I think I'm moving in the right direction now. I was also VERY jumpy and on edge at first. Of course the one main symptom people get---the rapid weight loss---I didn't get so much--even though I needed to!
Neasy-It will be interesting to see how I end up doing off the Pred....I had started on 5mg, and the first rhumy had upped it to 10....then said after a month I could slowing taper off. So I've been on 9mg for 2wks. The Dr yesterday said I could go down 1mg a week now... Thanks for the suggestion of calling in if I end up in a flare, that would be ideal for him to be able to see me "at my worst." As far as the sleeping, and "true rest." He said I could ask my family Dr to prescribed something...of course I didn't write it down--started with a "T"....he made it sound like it wasn't an actual "sleeping pill"....but I really don't want to take more meds. I'd rather find a natural way to be able to sleep.....if anyone has any suggestions, I'd love them. I did hear that liquid calcium helps sleeping--I just haven't found any here in town. I need to try a larger city evidently.
Sorry this is so long! Thank you everyone for your suggestions and kind words.