I wonder if RS3PE is causing the swelling in my right hand, going on for 2 months. link;
"RS3PE syndrome – The RS3PE syndrome [52] refers to Remitting Seronegative Symmetrical Synovitis with Pitting Edema, also described as the puffy edematous hand syndrome or distal extremity swelling with pitting edema (picture 3). In this syndrome, distal symptoms and signs, often of sudden onset, are pronounced, though careful musculoskeletal examination will usually also disclose some degree of limited range of motion about the shoulders. Swelling, which is usually pitting, extends over the dorsa of the wrists to the metacarpophalangeal joints, producing the appearance of a "boxing glove," with limited range of motion of the hands and wrists. Assays for rheumatoid factor and anti-CCP are negative [53]. Ultrasound (US) and magnetic resonance imaging (MRI) demonstrate prominent extensor tenosynovitis of the extensor tendon of the forearms and hands, with lesser amounts of flexor tenosynovitis and synovitis of the metacarpophalangeal and proximal interphalangeal joints [54]. An association with solid tumors and hematologic disorders has also been reported, but in clinical practice such an occurrence is rare [55,56].
I saw my rheumy yesterday. He agreed my swollen hand responds to steroids [am on 9mg now] but rather than increasing systemic prednisone to 15-20mg, he recommended local treatment of a steroid shot to the hand or watchful waiting. I chose watchful waiting. The goal being to get prednisone down to 5mg, tapering 1mg/4 weeks.
"Polymyalgia Rheumatica in Association with Remitting Seronegative Sinovitis with Pitting Edema: a Neoplastic Warning" 2017 excerpt:
" RS3PE can be an initial manifestation of PMR or may occur in its course. It is estimated that no more than 10% of patients with PMR may have an RS3PE syndrome, and some authors think that RS3PE can be considered an integral part of the spectrum of the PMR manifestations.(15)"
"CONCLUSION—The similarities of demographic, clinical, and MRI findings between RS3PE syndrome and PMR and the concurrence of the two syndromes suggest that these conditions may be part of the same disease and that the diagnostic labels of PMR and RS3PE syndrome may not indicate a real difference. The presence of distal oedema seems to indicate a better prognosis."
As of june 2019 have tapered to 5mg pred and hand swelling is minimal.
This is interesting. When my PMR started in February 2019, I lost a lot of weight (tummy and buttocks) but my hands became very swollen. I had to remove all my rings and loosen my watch strap. Once I started on 20mg Pred, my hands went back to normal, the lost weight stayed off, I didn't get the Pred "hamster face" and, to be honest, I felt good (although it meant people didn't realise I was still "ill").
Now I am down to 9.5 mg Pred, and suddenly I have very swollen feet and ankles, although my hands remain normal. The swelling is not painful, is reduced somewhat overnight, and also if I walk a lot, so I have put it down to normal hot-weather oedema. But I wonder if it could be RS3PE? And, at what point should I mention it to my GP?
I would stop the taper at 9.5mg pred or bump back to 10mg, and stay there til the foot swelling reduces. Mention the possibility of RS3PE to your GP next time you see him. Ten mg and under considered a relatively safe dose of pred.
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