My PMR Story--From Symptoms to Diagnosis

Hi All, this is my first post on this forum, but I have been a steady follower since October 2016.  I'm a 62 year old man living in the United States and want to start by saying how helpful your posts have been.  They allowed me to essentially confirm a self diagnosis of PMR while waiting for my first rheumatologist appointment (took 3 1/2 months to get one due to high demand/low supply for rheumatologists).

I don't want to be too long winded, but would like to lay out my experience in hopes of helping others, as you all have helped me.  Here's a synopsis of my three, short-succession autoimmune events, which started on October 1, 2016:

Angioedema [Severe swelling of eyes and lips]  Had several days of this autoimmune issue.  Initially went to the hospital emergency room (ER) and was given IV steroids.  Twenty-four hours later symptoms seemed to have gone away, but then I developed very itchy palms and about 6 hours later angioedema swelling returned.

Urticaria  [Severe hives]  Woke up on 10/4/16 with welts over much of my body; feet were swollen and red, as well.  Again went to the hospital ER and was given another round of IV steroids.   Woke up on 10/6/14 with large welts basically everywhere:  upper arms, sides, back, chest, belly, back and front of legs, back of left calf, and bottoms of feet.  Over several days the welts moved around, but stayed with me for close to a week.  Met with an allergist on 10/5/16 to try to figure out what was causing the angioedema and urticaria issues--the doctor said we would probably never know.  Based on the severity and duration of my symptoms, he ruled out any typical allergic reactions such as to food, pollens, etc.

PMR.  The evening of 10/6/16, the first symptoms of PMR appeared--both of my shoulders all of a sudden became very sore and achy while just watching TV.  Had a very uncomfortable night sleeping.  Started out in the bed, but woke up about 2 hours later and then spent the rest of the night in a recliner chair.  My shoulders stayed very sore.  I woke up the next morning with my shoulders and arms very sore.  It was difficult to raise my arms, but this improved as the day went on.

Synopsis of the next several days:

- 10/8/16

   -- Woke up welt-free and feeling pretty normal

   -- Right wrist was a little painful

   -- Felt comfortable enough to go on a previously-planned 3-day out-of-town trip

   -- That afternoon right thumb became very painful, but was better before bed

Note:  At this point, full days tended to tire me, and my body become tingly and numb.  My head started to feel thick and my hearing felt numb.  This lasted several days.

- 10/9/16

   -- Early through the night left wrist and left arm really started hurting--any movement was painful

   -- Woke up a lot, but antihistamines I had been prescribed allowed me to go back to sleep

   -- Work up with arms and hands very sore

   -- Wasn't able to drive the car to go out to get coffee that morning

   -- Got better as morning progressed

- 10/10/16

   -- Around 1:30 a.m. (after 4 hours of sleep), woke up with right-hand finger knuckles "on fire."  Right shoulder was also very uncomfortable.  Due to the discomfort/pain, only got about an additional hour of sleep

   -- Upon getting up (6:15), right hand and arm were pretty useless and left shoulder was very sore.

   -- Right fingers could not be laid flat and middle finger was very swollen and sore

   -- Conditions improved as morning progressed

- 10/11/16

   -- Went to bed at 12:30 a.m. after getting back from 3-day trip.  Got up at 6:00 after a very uncomfortable night.  Shoulders and hands/fingers were very sore.  To get out of bed I had to slide on my back to let my feet down to the floor (couldn't use arms).  Couldn't raise arms at all without quite a bit of pain.  It was very difficult to open my medication container caps

   -- Had to ask my wife prepare my coffee

   -- Conditions improved as day progressed.  Conditions (shoulders/hands/fingers) started to return around 4:00 p.m.  It was painful to reach for and click my car seatbelt into place

- 10/12/16

   -- Woke up around 1:30 a.m. through the night (after 3+45 of sleep)--went out to sleep the rest of the night in the recliner.  Shoulders and hands & fingers hurt and right hamstring muscle and knee were starting to be affected

   -- "Slept" in recliner 1:30-5:00 a.m. and then went back to the bed.  Slept 5:00-6:30.  The additional time/sleep had the symptoms feeling somewhat better when I got up for good, but ...

   -- Once again, had to ask my wife to prepare my coffee

   -- Had follow-up appointment with my allergist.  He said that as allergists they'd done all they could do.  Next step was to see a rheumatolgist (and he hoped getting an appointment wouldn't take 6 months)

- 10/13/16

   -- Woke up doing good, but shoulders still sore

- 10/14/16

   -- Woke up doing good, but shoulders still sore

Fast Forward on the Timeline:

- Between mid-October 2016 and my 2/1/17 rheumatologist appointment, my PMR symptoms went way down in intensity.  I would have occasional flares, but overall things became manageable, albeit pretty annoying.  I began sleeping much better, but each morning it would take from 1-3 hours after awakening before my body felt "normal."  A lot of tired/week legs and occasional sore shoulders.  There were certain shoulder motions that I just couldn't do.  My shoulder and arm muscles also felt weaker than before the start of the autoimmune issues.

- My rheumatologist is roughly 40 years old and is an awesome guy.  He was very willing to allow me to provide him my self diagnosis, in addition to going through my experiences/symptoms.  He agreed with my assessment of PMR and elected to put me on a year-long, tapered prednisone regimen.  The hope is for the PMR to burn itself out in a year's time.  My blood tests didn't indicate increased inflammation markers, but he said that that didn't mean I don't have PMR.  I told him that I imagined that my markers were probably very high the first half of October when I experienced lots of pain and discomfort.

- Prednisone.  He started me on 20mg for 2 weeks, followed by 17.5 for 2 weeks, which is where I'm at right now.  In future posts I can go over the full taper plan.

- Relief!  The prednisone has done wonders.  I'm able to get up and going each morning in 15-30 minutes and am now able to do many things that I hadn't been able to.  For the most part, pain and discomfort have gone away ... and I'm keeping my fingers crossed that any flareups are few and far between

Thanks for reading my story.

1 like, 15 replies