1. < Polymyalgia Rheumatica (PMR)

Mental fog and slight dizziness on Actemra

Posted by michsca @michsca, 2 days ago

I've had PMR for
almost 13yrs, starting in my late '50s. (Btw...Both my paternal grandfather and father had it.) Started on the 20mg prednisone that I've been able to taper down occasionally to 3.5mg, then suffer flares and have had to up the dosage. Had no relief from methotrexate, Humira, and KevZara. In the last few months I've had to go back up to 10 mg, I'm trying to taper down but I've had sharp neck and shoulder pain later in the day that is only helped by increasing my dose of prednisone.
Hoping for some relief after my first infusion a couple of weeks ago of Actemra. Has anyone felt fatigue and slight dizziness from that?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

jeff97 | @jeff97 | 1 day ago

I felt some fatigue the day after some of my first injections of Actemra. That went away after a month or two. I didn't have any dizziness, but injections have a lower dose of the medicine.

REPLY
lindaadele | @lindaadele | 1 day ago

I can relate to many of the comments that you made! I have PMR since April 2023. It has not been a good journey for me at all I feel like I’ve had PMR for much much longer! None of the medication’s that I was given for PMR has worked for me all they did was make me feel worse as I’m very very sensitive to any medication at all. I can’t really blame the rheumatologist because for them it’s kind of like hit or miss each one of us so so so different and reacts so differently to each medication!!! Presently I went off methotrexate June 1 because it did absolutely nothing for me but made me very very sick and very dizzy and I ended up in the ER and none of the doctors could figure out what made me so dizzy. I’m still going to other doctors just to see if someone could figure it out. I must admit that when I was taking methotrexate I did have warning signs but I didn’t pay much attention to them I didn’t think they made any difference. From the start of taking methotrexate I would be lightheaded quite often but did not think anything of it because I just sat down and two minutes later I felt fine. I believe that the lightheadedness was a signal that something was not working very well for me with the methotrexate. Right now I am moving forward going to more doctors staying off the Methotrexate and hoping that things will get better little by little . My very best wishes to you!!!

REPLY
michsca | @michsca | 1 day ago

I didn't feel the dizziness with methotrexate but after a year and a half of being on it with no real benefits and side effects of a lot of hair loss, I moved on. I'm hoping this new medication has some effect and is worth the woozy feeling. I just wish I knew what triggers a flare up of PMR symptoms.

REPLY
ropnrose | @ropnrose | 20 hours ago

I've had 6 Actemra infusions. Early on, I would start feeling my PMR symptoms a few days before the infusion. After the infusion, I was tired for a few days. I've never experienced dizziness. I make sure I stay hydrated and eat
healthy (relatively). Do you have any blood sugar issues?

REPLY
1 reply
michsca | @michsca | 3 hours ago
In reply to @ropnrose "I've had 6 Actemra infusions. Early on, I would start feeling my PMR symptoms a few..." + (show)
@ropnrose

I've had 6 Actemra infusions. Early on, I would start feeling my PMR symptoms a few days before the infusion. After the infusion, I was tired for a few days. I've never experienced dizziness. I make sure I stay hydrated and eat
healthy (relatively). Do you have any blood sugar issues?

Jump to this post

No blood sugar issues... And my blood work came back negative for any other possible issues.
Just had a dexa scan yesterday... Hoping the prednisone hasn't had too much of an effect on my bones🤞🏼🤞🏼

REPLY
Please sign in or register to post a reply.