After the disastrous appointment 2 weeks ago when my rheumy dumped me with no warning and discharged me back to my GP, I saw her last week, very apprehensive as to how it would go and wondering what he had told her.
She asked me why I had difficulties tapering from 40 mg, (I went to 37.5 five days before ...to show some progress!). She didn’t really listen and was unsympathetic, “he’s really experienced, prednisone will kill you, there are really bad side effects”, words to the effect that she’s not comfortable supervising GCA. etc etc. tried to show her some guidelines on my phone which didn’t work too well.
She then left the room to make calls ? Find me a referral? (There aren’t any other rheumys in this network). Came back after 30 minutes with a prescription for pred and a taper plan for 4 weeks when I’m to see her again.
The plan: 1 week on 37.5
1 week on 35.
1 week on 32.5
1 week on 30.
Written for 5 mg tablets
She’s in a hurry, no discussion about tapering symptoms, call her if I have problems, etc.
she did try to give me an awkward semi-hug before she left the room! Ha ha
I’m 6 days into the second week on 35 mg. So far seems Ok, (lots of tinnitus, random rib, back pains, double type when reading sometimes, the usual 2-3 am waking,) until yesterday and today, dizzy yesterday and more wobblies. Also feeling “not here”, disassociated.
The day after I saw the GP, I saw my eye specialist who said no damage from GCA but I have raised eye pressure so prescribed Lantanoprost.
I told her what had happened and asked if she could refer me to a rheumy in her system, (a teaching hospital). Hope she doesn’t now think of me as a “problem patient”, as this system is linked electronically to the other system and she can read all the doctors notes.
I did get an appointment with a rheumy from that referral for next week. Cosmic joke! The doctors middle name is the same as the last name of the guy who fired me.
So my questions are, what should I say to this new rheumy? Do I have to explain what happened? Obviously I’ll have to give my history, treatment, etc. this doctor is also in the system and can read the other doctor’s notes. What do doctors think of patients who do this? Is this “getting a second opinion” if in fact you have been let go by your doctor?
I’ve got a few other names to call, and the GP’s office called me and will try to get a referral to another rheumy who isn’t in their system and is farther away.
Does the tapering plan prescribed by the GP sound reasonable? I guess if I’m not under a rheumys care in two more weeks she’ll have to keep prescribing for me. The old rheumy cut off my prescriptions. With insurance issues and scarcity of rheumys plus pred head and transportation problems, no guarantees I can find someone in 2 weeks.
Thank you for plowing through this long saga. And for any thoughts and suggestions.