Today I went to see my 4th rheumy. I saw him two years ago, and he advised I return to my usual rheumy. At the time I felt it was because he didn’t really want to take me on. Today proved it.
I went to see him because my usual rheumy is done. She has no more ideas, all she has for me is Imuran, which is doing nothing. I have to trial it for 3 months at least though, so its just a way of kicking the can down the road a little further.
I asked her for methotrexate or even arava, because both of those helped some. She refused, due to side effects (severe depression and peripheral neuropathy respectively).
So I went to see this rheumatologist again. This time he was blunt. He doesn’t think anything will help me. He thinks I have fibromyalgia, despite me having no symptoms of fibromyalgia. He told me that RA doesn’t cause waking in the night.
I told him that PAIN does!
He said “No it doesn’t”.
Hands up everyone who has been woken in the night by RA pain. That’s right, everyone.
I asked him if fibromyalgia causes swollen joints, he said ‘No’.
I showed him pictures of my swollen joints. He said ‘Ok, maybe you do have active inflammatory arthritis’
But he still believes that nothing will help me.
He said my ‘profile’ implied to him that the medications that have helped in the past were the ‘placebo effect’ which he then explained to me, cos clearly I’m an idiot and I couldn’t possibly know what that is.
I didn’t argue with him, because this is one of those no-win arguments.
Like the Fibromyalgia diagnosis, which is slapped on everyone who doesn’t show a strong response to their precious medications, regardless of whether they actually have fibro symptoms or not, its perilously close to the ‘its all in your head’ diagnosis.
I showed him some more photos, and he agreed those are swollen joints.
He asked me which joints “I thought were swollen” today. I said my hands, first knuckle. He looked and felt them and said nothing.
He then said he was willing to try all the remaining biologics on me, because it would be an interesting experiment.
Which is great, except again, it’s a no-win for me in terms of him believing me.
He then asked me which medications had helped. I told him methotrexate, arava, orencia all helped a bit, maybe 30%. He said what about Actemra, I told him it helped considerably. It had me jogging on the treadmill at gym.
He said that sounded exactly like a placebo effect. So rather than being happy that something did actually helped me, he fit that into his perception that I’m a hypochondriac.
He said again that he didn’t believe anything would help me. It was so condescending.
Typical rheumatologist when faced with a non-responder.
He even told me that 80% of people are helped by medication, and 20% don’t respond or don’t respond well.
20% is a pretty large percentage. I don’t know why he feels that I can’t possibly be in that number, but instead I’m a head case or have fibromyalgia.
And then he suggested I try exercise.
OMFG. Ok, so I used to LOOK like someone who exercised. A little overweight, but still toned and strong. So my claims of being in severe pain were discounted, because I couldn’t exercise if I were in that much pain, so I must be exaggerating.
Now I’m 20kg overweight and I certainly do not look fit or toned. So now I clearly don’t exercise at all, and I’m just lazy.
No matter what, doctors don’t believe me, and they don’t want me as a patient.
He had clearly had enough of me, so I asked for methotrexate injections. He agreed. He said ‘we’ would monitor my condition very closely and see if I really did improve on methotrexate. And we would go through all the medications in the same manner, one a time, at least three months of each, and closely monitored.
Fine. I don’t like him, but I do want a shot at other medications.
So I don’t have a choice. I’ll dump the Imuran because I know it doesn’t work.
I’ll start methotrexate tomorrow.