Trembling and shaking, no energy - PMR?

Hello Joanne @jojobarrk, Welcome to Connect. I know it must be difficult for you trying to help your husband navigate the side effects as well as the symptoms of PMR. PMR doesn't usually effect the eyes but there is another condition that sometimes comes with PMR called Giant Cell Arteritis that can have devasting effects on the eyes and vision if not treated quickly. Mayo Clinic has more information on GCA here - https://www.mayoclinic.org/diseases-conditions/giant-cell-arteritis/symptoms-causes/syc-20372758.

We added a little to your discussion title to hopefully help members with some experience join the discussion.
Since he was just diagnosed in May it seems rather quick to be down to 20 mg prednisone from 55 mg. You might want to scan though the discussions on PMR, GCA and fatigue to learn what others have shared. Here's a link that shows discussions and comments - https://connect.mayoclinic.org/search/?search=PMR+and+GCA+%2Bfatigue.

@tsc @dadcue and others may also have some suggestions for you. Was your husband seen by a rheumatologist? Did they mention GCA?

The Rheumatologist performed a biopsy on his temporal artery and confirmed GCA. He was on IV prednisone while in the hospital. When we met with doctor after release from hospital the doctor said he had PMR. My husband has fusion of his thoracic vertebrae. The doctor prescribed an 18 month course of prednisone. He seemed to do well first few months but I have noticed a change in his condition plus bizarre discolouration on some of the veins near where biopsy was performed. I put a call into doctor’s office to advance follow up appointment set for late September as something is not right. Thank you for your reply.

Hi @jojobarrk, I think it's good that you notified the doctor. I hope you get an appointment soon.

I have GCA, and starting at 40 mg because I'm small, my taper has been -5 mg of prednisone every two weeks. I was off it for a year, but relapsed, and this last go round I did feel jumpy and trembly on prednisone at the higher dosage, which I don't recall from my first episode of GCA.

Did your husband recover any of his vision? Blindness is one of the most devastating consequences of GCA. I'm so sorry.

Unfortunately his vision loss is permanent. We both caught a bad flu last February and he took longer to recover than I. His aches and pains we put down to the lingering after effects of the flu and did not realize something worse was going on. We came home from doing groceries and as he was walking to kitchen he went blind instantly. He said it was like someone pulled down the blinds for both eyes. He sees slight shadows out of the bottom of his left eye. Scary. Thank you and I wish you good health

I'm so sorry to hear that. I have read that vision loss from GCA is permanent. I had a few episodes of visual disturbance in one eye before I was diagnosed, but nothing lingered. So far, the GCA has not impacted my eyes.
Your husband's inflammation may be elevated since he's been tapering the prednisone so his symptoms could be explained as relapse of GCA vs side effects from prednisone.
Does he get monthly blood tests like CRP to check inflammation?
Maybe talk to the rheumatologist about increasing his prednisone until he can get an appointment?
Take care and I hope this resolves.

Thank you for your reply. His sudden blindness was the issue that brought on the diagnosis. The ophthalmologist and rheumatologist both said blindness was permanent. My husband had those blood tests two weeks ago. The rheumatologist scheduled him for blood tests every three months but I think that is too far apart. I called his office and left a message asking to see him as our appointment is only for 24 September…too far away. Fingers crossed!!! We live in a small community in New Brunswick with few specialists

We finally saw Rheumatologist and he sent my husband for urgent bloodwork. It came back ok. He is sending my husband for repeat tests every four weeks. We will see opthalmologist in two weeks as my husband says there is further decrease in vision. He was left with a small strip of blurred vision a bottom of left eye which he says is diminishing. We will also see our GP for assistance in pain management as Tylenol does not cut it. He shakes so badly that he has to use a spoon while eating and it reminds me of when our son was a baby and was trying to feed himself. I live by the ocean and take my husband every good day for a sit down on the beach while I walk the dog. I am scared about the approach of winter that he will sink into a depression. Anyhow GCA & PMR are a nasty business. Thank you for this support group where I can express my fears and concerns as I do not want my husband to know how it affects me