My rheumatologist is not getting the ball rolling on my treatment.

I love my rheumatologist, but she is not moving on my treatment... well, at all.

six months ago, she started me on rounds of chemotherapy as I was finally diagnosed with Adult Onset Still's Disease. A rare form of RA/JRA that effects less than 1 person in 100,000-500,000. So, with the diagnosis, I knew treatment was going to be difficult. She said so herself, yet still took me on as a patient and did not refer me to a different practice. Let me say, this practice is fantastic. I have my own nurse who I can call any day at any time, they communicate everything, and all my questions are answered. (AND it is covered by medicaid, which is a damn blessing)

But I feel like my diagnosis is stalling her from giving me new treatment options.

The chemo worked for a bit. And when I say a bit, I mean 3 months out of the six. When I saw her and told her this and asked if I could be prescribed physio once or twice a week, or given a TEN's Unit for my muscles reaction to joint destruction, and as a last result, a low dose etc pain killer, she just sort of went quiet and said "let's just stay on this course of treatment". Which would be fine if it were working completely! But I am in constant, horrid pain that has me using a cane, crutches, and a roller depending on the day and the pain levels. I am still getting fevers near daily (usually spiking to 103F around 5pm/6pm), and I am tired. All. The. Time.

I am just wondering if anyone knows how to get the ball rolling with their pain care? I tried being gently assertive, but here I am, on month Seven of a treatment plan that isn't working. I know this disease, in my case, is not a one time deal as I have been in a chronic flare up for more than a year. I know this is something I am going to have to deal with for either a few more years or the rest of my life, and I am only 23. I want to be able to have some level of independence here. I feel like I am still a teenager because of all of this.

tl;dr, I am in a whole lot of pain and my doctor isn't doing much of anything even though she is great.

I am tired of being in so much pain. I am so damn exhausted.

Have you tried addressing it with her again? Let her know that what she's doing is not help?

I don't know anything about chemo for RA, but with chemo for cancer sometimes the doc has to change what's in the chemo cocktail. Could you ask her about that?

Yeah, I did last week but I think it kind of all got lost in the stress in yet another medical crisis in my family (lol it's endless we need a reality show). She said to keep on the plan a little longer and increased my folic acid for the fatigue and other side effects. So far... it's really not carrying it's weight. Chemo beats me down for so long and then the pain creeps back and I have to deal with vomiting, feeling like I have the flu, etc, for 6 days out of 7. It just doesn't seem... logical to me, really.

I think I would really benefit from physio, which I do some basic things with my partner as she was a physio aid for a few years. But other than that, my movement is limited and when I can gain movement, it's bad posture due to pain, wrong foot placing, etc.

It's just becoming so frustrating ugh

if your not getting the treatment that you want try and find another dr who will listen to what you want. No harm in trying to find another one.. good luck on your search