I was dx’d with PMR a year ago. Started at 20 mg prednisone. Increased to 60 in June 2019 due to suspected GCA. I have been titrating down slowly: 20-15-12.5 and now 10 mg ten days ago. I am now getting facial tingling across both cheeks and lips ( similar to Novocain wearing off.)
Could this be prednisone or GCA related? Not sure what this is.
You just need to keep an eye on it and keep an look out for other symptoms of new pain at the moment rather than just the tingling and numbness alone.
10 mg is one of those plateaus in treatment when nerve pain and other pains from other conditions can start being noticed again as the Steroid dose doesn't cover or dull these symptoms as it did on higher doses.
Some people can get tingling , numbness or neuropathy in various body parts at this dose as these awakenings or changes start in how Steroids affect your face shape again. You can get a lot of facial tingling if you had " Moon face " or face changes and you face starts to return to its original shape , just as you say like you do after a dental injection wears off.
Thanks so much for your helpful reply.
It may be a bit offside, but I had a neck injury when thrown off a horse many years ago. Ever since then I get tingling in my tongue and cheeks if I sit in a non ergonomic seat, have the computer monitor at the wrong height for me, have hard pillows etc. So your tingling may not be GCA
I was not on as big a dose as you but got bad face tingling and lip tingling and weird muscle twitching in my face when I went on Pred. It did lessen as I reduced over time. But obviously if at all concerned, get it checked out.
Hi Anniegal
I had tingling in my face, lips & neck before l started on Pred & still get it at times.
My face/neck would be icy cold yet ‘burning’ at the same time. I was generally never warm enough & always wore a scarf which l would to immerse myself in. On my neck l used a Menthol Type Gel to try to distract the feeling, obviously it was too active to use on my face but it did help my neck a bit.
Hope it eases off soon.
MrsN 🌷
Thank you, Mrs. Nails.
Off to immediate care and will report back. Noticed I am also experiencing increasing flank pain so need to get labs to rule out a kidney infection.
I’ve had exactly the same thing since being on 60mg, i can literally feel my face and neck swelling!!
I wonder if mine was due to pressure on facial nerves from the moon face. It went away gradually as that subsided.
Our immediate care clinic is currently staffed by a physician trained in functional medicine. So that was great as he believes in food and supplements.
He suggested that the facial numbness was anxiety brought on by a) too rapid a prednisone reduction given that I just had recent stereotactic radiation in February for a small lung tumor. I had reduced from 15 to 12.5 to 10 over a month’s time at direction of rheumatologist and oncologist. I suggested to my medical team it was rather rapid. Next time, l will advocate for myself more effectively thanks to this wonderful peer group.
The immediate care doctor noted that my lower back is in extreme spasm and suggested this was also result of rapid reduction and suggested epson salt bath, heating pad, massage, change in oral magnesium from citrate to glycerinate as the latter is better for muscle spasm and adding CBD gummies. Since I live in California, this is accessible.
So I am going back to 12 mg of prednisone, adding CBD and hope I can reduce 1 mg of prednisone a month but time will tell.
Facial numbness is lessening. Back muscles are still over guarding.
I doubt the low back spasm is DUE to the speedy reduction - it happens to me even at a static dose. I find I have variations during massage management - the low back has acute episodes relating to changes in upper back muscle tension although they are relatively easy to get under control as you describe. But there is little doubt that higher doses of pred do help myofascial pain syndrome
Hi PMRPro,
Do you know what triggers your back episodes?
I started prednisone a year ago and have been back pain free for a year so this episode is a shock.
At first I thought this might be a kidney infection. By now I have tried everything and am still in acute spasm.
Even though it is 1:17 AM here, I think l need to go ahead and take the additional 2 mg of prednisone to bring my dose to 12 mg.. I am not going to be able to sleep if these spasms don’t let up so l am hoping it may help. Gladly trade insomnia for this.
Myofascial pain syndrome leading to tight back muscles - and then something, maybe even just leaning forwards or lying in the wrong position in bed, is enough to send those muscles into spasm to protect themselves. The Pain Clinic uses muscle relaxant injections which are brilliant. If I can catch it early enough therapeutic massage and manual release of the trigger points will avert the nastier episodes.
I had a short attack last week - 800mg ibuprofen in a single dose relieved the agony well enough to finish the job with a hot water bottle. Heat alone hadn't worked. The 800mg ibuprofen lasted almost 24 hours and the next day 400mg was plenty - and it hasn't returned.
PMRpro,
I added 800 mg of ibuprofen last night and today, upping the prilosec to protect my stomach. I have a similar history of mis dx as you. Had to take 10 mg of Valium last night and today. It helps but l am still hobbling with a walker.
Thought I had a PhD in pain tolerance but this last episode has been devastating. I am now thinking it is not related to prednisone reduction as muscle relaxant helps somewhat. Dr says extreme muscle spasm.
If by Monday I am not out of pain, l will request MRI.
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