Sometimes something strikes a weird chord. I have ‘Supremes a Go Go’ on vinyl. Must have bought it over 50 years ago, some classic tracks including one which suddenly stopped me today as I listened to it for the first time in some years. Synchronicity? It made me reflect on the Holland and Dozier gospel lyrics with a chorus which suddenly summed up the whole PMR experience:
Like love, you can’t hurry PMR, you just have to wait, nothing comes easy and it’s sure a game of give and take. On the back of that analogy, I was wrong.
Probably had PMR for > 3 years pre diagnosis. Pain different to OA in various joints. Paracetamol/NSAID don’t help. Rheumy diagnosed ‘treat as Pmr’, June 2018; after 15mg of Pred, symptoms resolved > 90% symptoms better in hours. ESR and CRP normal. Only health issue was B12 deficiency (no apparent cause) treated with daily oral supplement.
From June 2018/September 18, tapered to 10mg. Symptoms worsened. Back to rheumy who advised start again at 15mg, slow taper further and stay at each level for longer. Symptoms didn’t improve ( or get worse) so decided to taper off steroids totally and reached zero in February 2019.
Over next 6 weeks, symptoms worsened significantly. Widespread bilateral pain both hips, both shoulders, both biceps, back of neck and head. 24/7 along with severe stiffness and difficulty with steps, walking, sitting...you know the score. Also developed tennis elbow in right arm and frozen shoulder left arm. Grim.
Back to GP who suggested a week at 20mg. Did that, didn’t work. Left it a couple of weeks and decided to try 25mg for 5 days. Much improved. Not back to that first hit after 1 dose at 15mg, but I can currently stand without hauling myself up, step up without being doubled over and pain is reduced, just about manageable.
So, what have I learned and where to next?
Lesson number one: PMR rules, OK. It’s there, it’s insidious, it lurks and it won’t resolve until it’s ready.
Lesson 2: not thrilled with steroids, but there’s no realistic alternative. I’m not sure if symptom control can be improved, but with steroid now at 20mg (I’ve dropped whilst waiting to agree a plan with gp) there’s nothing else to give my life back.
Lesson 3 : I know I’m impatient. It’s an ongoing daily struggle to accept limitations and the life changing effects of the disease. But acceptance is key to effective management.
Lesson 4: its all relative, it’s slow, slow and slow again. Stop battling the what you had; accept what you have and build on it. I have a friend who slipped on ice and from one second to another, her working life as a senior manager, wife, mother etc changed. She’s now quadriplegic; I know she’d give anything to be able to do what I can, but grumble about.
Lesson 5: listen to advice about pacing. It’s a difficult journey. I’ve gone backwards and wasted valuable possible recovery time. It’s probably going to take longer to recover.
If you’ve got this far, thanks. We’re all sharing this appalling journey. This forum is my main support.