Has anyone experience severe headaches and muscle spasms
Has anyone experience severe headaches and muscle spasms while on Prednisone? I managed to go from 40mg to 1 mg in a year then a couple weeks ago, in the middle of the night, I experienced a severe headache that went from my neck up to the side of my head. The next day the headache wouldn't go away so I upped my dose of Prednisone over a period of several days to 10mg. I started to feel relief finally and then I decreased it down to 4mg and will keep lowering it each week. I'm guessing this was a fare up but it scared me. I also have been woken up in the night with leg and toe cramps that I've never experienced before. Could Prednisone cause this?
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@kjoed53 You need to call your doctors, Rheumy and Ophtha and let them decide it is OK to wait a week or two. This can be very serious and you can lose your vision if not found and treated. I emphasize "can be" - it may not be but your vision is not something you want to put off checking on. My Ophtha gave me her personal cell phone number once she knew I had PMR. She said call her any time, day or night. I have had it for five years, never used, but I would if I needed to. She said GCA is one of the very few Ophthalmological emergencies and I believe her.
@jabrown0407
Thanks for the advice. I just got my latest blood work back this morning so I will be talking to my rheumatologist about that later. I should also mention that my rheumatologist considers my PMR diagnosis as tentative until he finishes ruling out other possibilities, and my regular ophthalmologist left the practice so I'm seeing a different one.
@kjoed53 Yes PMR is not confirmable with any test, it is a default Dx. Thus, everything else that it could be needs to be eliminated first. A tentative Dx of PMR is what everyone has initially - nothing new.
A new ophthalmologist is just as concerned as your previous ophthalmologist was with the possibility of you going blind. Please give them a call and let them make the decision. You may feel fine right now but this is a real threat and best to get it behind you than in front. Simply tell them you are being treated for PMR and are now getting severe headaches. That is the truth, let a trained professional make the call.
@jabrown0407
I spoke with the opthalmologist yesterday when I made the appointment.
At 66, diagnosed with PMR Oct. 2025. On 10 mg prednisone with all symptoms resolved, until Jan 14, 2026. I woke at 2:30 am with 8/10 upper& lower jaw pain. This continued nightly. Tylenol helped- the only analgesic ok to take with prednisone. After 6 weeks and lots of research, I discovered my symptoms indicated GCA. My pcp and dentist had passed it off as TMJ because I didn't have headaches, but I knew better. I texted my pcp and asked for GCA testing. One week later I had the right temporal artery biopsy that confirmed the GCA diagnosis. Headaches are the typical GCA symptom, but not with me. I urge you to push for GCA testing as this is a very serious diagnosis with life altering results of not treated asap.
God speed to you all!
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3 Reactions@kjoed53 I have a bad headache every day! I got my first migraine at age 21. Those stopped after menopause, but these "new" headaches are different. You mention heat. I get very hot when I eat, and a headache normally follows. However, it quickly subsides, and these headaches happen throughout the day. Really tired of the headache pain along with all the other pain from PMR.
@prettypatti76
Eating a hot meal always makes me feel like my body temperature goes up several degrees. Today was the first day this week that I didn't have a headache (knock on wood). I increased my BP meds and my PVC meds. I think my headaches were at least partially caused by cardiac issues. Keep track of when you get your headache, what you were doing, what you ate, what you drank and maybe check your BP. PMR and PMR meds can both be hard to deal with. You may also want to see an ophthalmologist to make sure nothing is going on with your eyes. Let me know
what PMR medications have you found helpful?
@kjoed53 Hi. I see an ophthalmologist and my retina doctor every month for the macular degeneration shots. My BP is OK. I do not use alcohol. Thanks for your response.