Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
Had my follow up appt with the rheumatologist office yesterday. Naturally, I got put with a different doctor than the one I liked last visit that ordered my blood work and xrays. My "peripheral" xrays looked normal except two areas, one on each wrist, that I was told look like they might be cysts. My hands, wrists, ankles, and feet are all normal looking. Joint spacing is fine and no inflammation that can be seen. My SI joints show mild degenerative changes though. And since my blood work doesn't have any elevated antibodies or elveated inflammation amrkers, she is calling it osteoarthritis. I'm being tapered off prednisone (which I told her that even though it's low dose it' was helping my hands and feet but not my back), and my nabumetone dose was doubled. She offered to send me to a pain clinic so I can get steroid injections in my back since the high dose prednisone helped my back feel better.
But since I'm not responding to low doses of pred (like "ALL of her other RA or PsA patients who feel amazing on 3-5 mg/day") there's no way I have AI arthritis. There was no real examination of range of motion of any joints or my back. Just some brief pushing and prodding to check for tenderness. Neither doctor wanted to look at my pile of paperwork or 5 weeks worth of symptom tracking or my photos showing the swelling in my hands and feet. And all of my remarks about how my joints feel when I try to do stuff was disregarded. So now I get to take more NSAIDs and wait two months for an MRI of my SI joints. I always seem to find doctors that solely rely on making a diagnosis of stuff completely based on blood tests.
I left the office in tears, completely frustrated and misunderstood. I'm not completely surprised because I dealt with this similar situation with my thyroid issues. I guess I'm just in my feelings a bit. I had a ray of hope with this doctor office.
But since I'm not responding to low doses of pred (like "ALL of her other RA or PsA patients who feel amazing on 3-5 mg/day") there's no way I have AI arthritis. There was no real examination of range of motion of any joints or my back. Just some brief pushing and prodding to check for tenderness. Neither doctor wanted to look at my pile of paperwork or 5 weeks worth of symptom tracking or my photos showing the swelling in my hands and feet. And all of my remarks about how my joints feel when I try to do stuff was disregarded. So now I get to take more NSAIDs and wait two months for an MRI of my SI joints. I always seem to find doctors that solely rely on making a diagnosis of stuff completely based on blood tests.
I left the office in tears, completely frustrated and misunderstood. I'm not completely surprised because I dealt with this similar situation with my thyroid issues. I guess I'm just in my feelings a bit. I had a ray of hope with this doctor office.
When she told me it's OA I asked her to specifiy that didn't OA feel better with rest,and she replied yes. And I had to remind her that I can't sit still for long or even lay down without being in pain and that's my whole problem with my back. So she then said instead that maybe the way I sit or lay down is putting pressure on the joints and further irritating them. Like REALLY?! I'm 30 years old and have OA...makes perfect sense. Which means I was in my early 20s when it started because that's how long I've been having pain flares in my back. All my other joints didn't start having issues until maybe the last 3-4 years now.
I'm glad you're thinking about finding a new doc. I am one of those people that has an extreme intolerance for doctors who do not listen, do not show compassion, and/or do not consider the fact that no two cases of any disease are exactly alike. The moment I do not feel heard by a doctor, any doctor, is the moment they cease being my physician. I do understand that sometimes it takes time to find the right treatment for my body, and so I don't hold things like that against doctors, because medicine can be trial and error. However, if they aren't even willing to try to help, or they pay absolutely no attention to what is working to some degree while they continue looking for answers, then, in my opinion, they aren't living up to their job as healers.
Ok rant over.
I truly hope you find the right doctor and treatment very, very soon!
buddha that's 100% correct!! No I'm not on anything else other than nabumatone. And I told her that the low dose of pred was helping keep my hands and feet in check whereas before it the swelling in my hands was pretty bad...even though it doesn't show on xrays. My taper was a 40mg down taper, reducing every two days until I called the office in tears from pain when i got down to 15mg and the doc kept me on 10/day (until yesterday and now I'm going to taper off) and added the nabumatone because meloxicam and tramadol wasn't cutting it for me.
The last few times I've left my doctor, I've been in tears, or close to it. I hope you find a good doctor who listens to you and takes your symptoms seriously. I may be looking for one, too.
Best if luck to you! I understand.
I'm now on day two of my taper off prednisone and my hands hurt already. Only went down by half a pill so I'm on 7.5mg from 10, and I felt the not quite forgotten pain/stiffness in my right foot when i got out of bed this morning. But no, of course I have no inflammation related pain...because it's not showing in my bloodwork. Seems legit!! And my back is hurting despite the extra pain meds. I'm in a mood today, I hope for the sake of humanity nobody crosses me today! ugh
That is an autoimmune disease that affects your spine. (And other joints, too) My daughter's friend is 27 has it. She is a physiotherapist, and she recognized the symptoms, and the rheumatologist agreed with her. But he said normally, it takes up to 10 years to get a proper diagnosis, because it is so rare, and by then the spine can be fused.
I do have another friend who was diagnosed with RA, and 10 years later, she got the AS diagnosis, and her spine is a disaster. Not to scare you.
Might as well leave no stone unturned!
Sorry you are feeling so bad. And OA damage is possible at age 30, but I would think highly unusual. Probably a new rheumatologist is in order.
Take to heart what Sally told you about imaging. It's far more widespread than you might think. (I've been to Imaging Hell and back again a few times over the past year.) There must be big bucks in ordering and then not reading MRIs, x-rays, etc.
OA sounds ridiculous in a 30-year-old. Perhaps at the site of an old injury, perhaps if you were weaving rugs while squatting in snow in an unheated building for 16 hours a day since you were 6 years old, but I don't think that's your biography.
You know what to do next, and you seem to have the resolve to do it. I totally agree with Marlene that someone (with a brain) should be looking at ankylosing spondylitis, along with PsA. (They do overlap. She has said I have either AS with peripheral involvement or PsA with axial involvement. Kind of the difference between greenish blue and bluish green.)
Yes I take everyone's advice here to heart. You all are so great. I plan to get a new doctor. I also find it odd that I have these "cysts" on both wrists. Very suspect indeed.
And oh wow Marlene...10 years for Dx... eek. Doesn't really surprise me though since it took me 9 years for correct diagnosis and treatment for my AI thyroid troubles. But at least with that I wasn't in pain 24/7. I just slept my life away!