Back to the Rheumy

Up and down, up and down…



As much as I’ve come to love cortisone, I know that’s not a good long term solution.  The PT helped my shoulders, but my hands and feet were significantly worse.  My PCP had only agreed to do my follow-up if my mild DMARD was controlling the RA.  Since it wasn’t, I was afraid that I’d be told that it was time to return to the rheumatologist (down goes the roller coaster).  Instead my doctor increased my plaquenil to three times a day and added a preventive medication for the headaches I’d been having (up goes the roller coaster – is this false hope?).


Follow-up with my favorite doctor was only a month away, but I knew that if we’d needed to increase my plaquenil, I was on my way back to the RD, so I called to make the dreaded appointment.  It had been less than a year since I was there last, so I didn’t have to have a new referral.  They scheduled an appointment, but even as an established patient, I couldn’t be seen for two months.


My thumbs, which were almost useless in December, work well most of the time.  The roller coaster goes up.


Unfortunately, my feet are much worse, and I’m tired all the time again.  That probably means more disease activity.  The roller coaster plunges back down.


It’s disappointing, but not surprising to hear my PCP say that it’s time to go back to the rheumatologist.  I’m very appreciative of the care he’s given me, patiently answering my multitude of questions and giving me time to adjust to this life-changing diagnosis on my own terms.  I just wish I didn’t have to see that PA.




Did I Mention That My PCP is Awesome?

Back again to my awesome PCP.  He looked at the model I took in and asked if I was bringing replacement parts.  Apparently he’s never had a patient bring an anatomical model and request an illustrated explanation!

Rotator Cuff

Another cortisone shot in both shoulders, plus a referral for physical therapy.  It seemed I was having more trouble with bursitis and tendonitis than with my hands and feet.

My doctor again took time to listen to me and answer my questions, and explained that all the inflammation was from the RA.  I left there feeling like he’s not paid nearly enough for all the help he’s given me.


The Ride Continues…

Begin reading with Part 1

The Long Roller Coaster, Part 6
May 2008

Back I went for my follow-up with the rheumatologist’s PA. He examined my joints, mentioned that maybe I have “rhupus,” a condition with overlapping symptoms of RA and SLE, said he didn’t think I needed another DMARD, and told me to wear sunscreen on my upcoming Hawaiian vacation.  Given the length of my previous two follow-up appointments, I thought we were done and was ready to leave, but he sat and told me about his personal life for half an hour.  I still didn’t like him, didn’t care about his personal life, and if he wasn’t going to add that second DMARD, I didn’t have to see him any more!

I scheduled another appointment, but had every intention of cancelling it if my PCP really will do the follow-up.

When I couldn’t stand the pain in my shoulders any more, I called my PCP.  Part of me couldn’t believe that I’d gone from being someone who only saw the doctor every couple years for a routine physical, to someone who saw a doctor nearly every month.  Another part of me was in too much pain to care.  I was glad to have a long, established relationship with this doctor.  He knew that I wouldn’t call frivolously.

We talked and he gave me a cortisone shot in both shoulders, saying that he could do it every three months.  It wasn’t very encouraging to hear that I could expect to have ongoing problems with my shoulders, but at least my doctor was willing to treat the pain.

A month later I went back, and my PCP agreed to do my RA follow-up as long as my symptoms remained under control on the milder medications.  It was amazing how much better I felt, just knowing that I didn’t have to see the PA again.

originally written as one huge post, and published 1/15/09 on the Arthritis Foundation’s host, I have broken this into a number of smaller posts

Almost done.  Evidence that I’m crazy