Doctors skeptical of PMR diagnosis

I have had PMR Dx for 7 years. I have always had searing thigh pain - which is not a standard symptom. I recently was on some medicine that made the pain go away, not steroids. After doing AI research I now suspect LFCN (lateral femoral cutaneous nerve) pain because it is a searing (burning) leg pain, covering the surface of my thighs. Please research this to make sure you are not adding steroids when that is not the correct way to address this problem. BTW, I did not know about LFCN several years ago when I saw my neurologist and he missed it as did the neurologist who ran the nerve conduction test on me. I am returning to discuss it with my neurologist in early May. My pain is deeper into the tissue and not just on the surface of my skin. Some people have skin sensitivity with this problem.

Not sure how old you are but you possibly have osteoarthritis in your knees and that can be treated with hyaluronic acid (knee gel) injections that are steroid sparing and actually do a great job of taking the pain away. The gel is a synthetic form of what you had protecting your knees in your youth. Better relief and better for your overall health than a steroid. I have been getting them for several years and the injections are like magic for me.
BTW, I am on 10mg prednisone and trying hard to get completely off - steroids cause naughty problems, especially long term. I would do anything to get off.

@jThanks for the input - I'm 83 - also have total knee replacement (both knees) so "no" knee gel not an option. Actually, now that I have artificial knees I cannot get a steroid injection which would sure be a relief with current thigh PMR -
Agree about getting off prednisone permanently but not an option for me. I'd rather be able to walk. bruising/weight gain/puffy face - just side effects I can deal with. Walking is a priority!

@jabrown0407jabrown0407 wn0407

Thank you for giving me another option to check out. This is my first time experiencing PMR in upper leg - always been in knee area previously. But will certainly ask about your suggestion next time I meet with rheumatologist

@brittg Last October I started having shooting pain in my thigh. It would run right down the center of my thigh into my knee. I went to an orthopedic and he x-ray my thigh, knee, and hips. I have severe osteoarthritic hip. Since you have already had your knees done my guess is your hips are also arthritic. The fact your on 10mg prednisone would even lead to this deterioration. I have been off the prednisone for 3 years. PMR has stayed dormant. I would guess your adrenal system will have trouble restarting but I would try to move to a lesser steroid. good luck.

@tuckerp
No - just had hip xray and hip is surprisingly in good shape.
Will definitely try to move to a lesser steroid but think it's going to be a long journey
Thanks for responding

@brittg mywife had peristent and at times intense pain in her knees and lower thighs for two years. Doctors had no idea and kept saying fibromyalgia, was finally referred to a physio for pain management. He fixed the problem in 3 weeks. It was referred pain from the muscles pinching nerve in tbe lower back, likely from progressive poor sitting posture as she aged. A series of targeted exercises were what solved the problem.

Thanks for comments - your wife was lucky.