Continuing the story about being dismissed by my rheumy and searching for a better one.
I got a referral and saw the new doctor on April 25. I’m not sure as this will be better, mixed feelings about her, and to complicate things my son who lives with me broke a bone in his foot last Friday and is supposed to stay off it for at least a month, he can’t do much around the house.
I was so scared from my experience of getting fired that I copied a pile of articles, a virtual wall of paper to protect me!, but didn’t bring anything except a brief one-page history with me. First impression of the doctor, a warm, friendly person. To my relief she didn’t quiz me about what happened, and I only said “we didn’t connect” about the previous rheumy, thanks to excellent advice from this forum. She briefly glanced at the history. I told her about difficulties in tapering because of confusion between withdrawal symptoms and a flare. She Asked about the initial diagnosis. Asked me what symptoms I had had. I told her about the occipital headache, shoulder, back, other pains, but not incapacitated. She looked at my temples, etc. she was emphatic about getting me down and off the prednisone, wanted to add Actemra if the tapering isn’t working.
This is her taper:
I was at 37.5 when I saw her
Immediately drop to 30
In 8 days drop to 25. Stay at 25 for 8 days
Then Have labs done, and if OK then drop to 20 until next office visit on May 7.
She said if symptoms return we can do a biopsy?! But since I’ve basically been on high dose of 40 mg for 3 1/2 months, this taper should work OK. And because I was still able to function when diagnosed, pain or headache not totally incapacitating, I was “not fully into GCA” when diagnosed.
I asked, What happens if I get symptoms? How best to contact you?she was responsive to this and told me to call and come in to see her so she could see what was going on. This was reassuring. As she left she said “we will get you well”—-I’m encouraged about the “we” part, but I’m not sure about this taper plan.
I was doing OK on this plan the GP gave me:
37.5 - 1 week
35. - 1 week
32.5 - 1 week
30. - 1 week
Well soon after that my son broke his bone, we spent all day in the ER, major stress. I followed the new docs plan and reduced to 30. Then I got concerned about some symptoms, sore throat, swollen cheeks, right side more swollen, dry mouth at night, causing coated tongue, back and rib pain, heavy legs. So far on the GP plan the pains had gone away with Tylenol and after a few days. More swelling in the cheeks is something new.
I called her, she said come in, I did. She examined my mouth,throat. Said no thrush, no swollen glands, no infection. Swelling is from the pred. She asked if I would feel more comfortable coming in for an appointment in 2 weeks rather than a month, (right after scheduled lab tests and reduction to 20 mg). So this is positive, but still the same taper plan.
I reduced to 25. 2 days ago and now have all the same symptoms and what looks like more swelling- I look like a chipmunk!, more tinnitus, some neck and back of the head tightness. Feeling a lot of head pressure today too.
So I’m wondering if I should go back to the GP plan? I see her again in a week. She was keen to hand me off to a rheumy , not sure what she will do. Or stick with the new rheumy and give her plan a longer try? I feel I didn’t advocate very well or question this new plan as I was trying to figure out the dates, percentages, etc. in the office and she was so friendly and personable.
I also thought of getting an X-ray from my dentist to check that jaw and cheek although I have no pain there really.
Thanks for reading this saga, and for any thoughts.