I’m newly diagnosed with PMR and I am not taking well to Prednisone..

Posted by marie709 @marie709, 3 days ago

In September of 2025 I was hit suddenly with all the symptoms of PMR. I did have the carpal tunnel syndrome while pregnant, many years ago, but as soon as I delivered it would leave me. The PMR was sudden, my blood markers were off the chart for inflammation and for the first time ever, I was debilitated to the point where my hair had to be cut off because I couldn’t brush it anymore. My scalp was so tender. I would have to find my own way out of bed because I live alone. I couldn’t get down or up the stairs and I had 20 lbs of fluid on me besides every joint in my body was inflamed and my muscles were tender and weakened. I had to be assisted to the car to get to my doctor. I have never experienced anything like this in pain before. Besides the fact that my vision was changed.
After seeing a neurologist, they detected the carpal tunnel syndrome. He suspected PMR. Yet needed another Neurologist to concur with his findings. I’m on the urgent waiting list. My active life has literally changed overnight. The waiting list is over a year. My family Doctor made an executive decision and started me on prednisone. I have a history of medication sensitivities and allergies. He started slowly, 12.5 and I was feeling better from the pain, but I had myself scratched up and no sleep whatsoever. I think I was afraid to sleep because I was aware of the morning pain. But I had hallucinations of spiders on me. lol. Eventually he increased it because I had breakthrough pain. Well my family was home for Christmas and my daughter is a nurse. She was very worried about the blood pooling in my left leg by the ankle. I thought I seen spiders crawling on the wall and my eyes are blurry. Now I am going to a rheumatologist. In a few months! You are reading this correctly. The family doctor has decreased the prednisone dose to 15 because the last dose was not safe for me. I refused narcotics for pain management. I stick to Advil. I am not one to lay down during the day but I was told not to drive. Sometimes I pace around looking for something that I can do without causing pain. My knees are still swollen and I can’t raise my arms over my head. I can’t even touch my left shoulder with my right hand. Getting dressed is impossible. The fine motor skills and pain in my fingers are terrible. I have assisted aids for the bathroom. A seat for the toilet and a seat for the shower. My leg strength is decreasing. I’m losing weight that I can’t afford to lose. Never thought I would say that! But the most humbling thing is depending on asking my daughter, or sister or when desperate, my ex husband to pick up something for me or do a necessity for me. I have always been independent. I am 55 years old and I dedicate my life to working and raising my children to be educated and self sufficient. Not to be responsible for me. I can’t imagine this is going to be my life. There has to be a better medication than is used to treat this.

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

jeff97 | @jeff97 | 3 days ago

Methotrexate and Kevzara are both approved to treat PMR. Unfortunately both of them can take up to 3 months to take full effect. Kevzara is a self-injection you take every 2 weeks, and methotrexate comes in pills. I take Actemra, which is a biologic drug similar to Kevzara, and I haven't had any side effects from it in a year and a half. I think methotrexate might have more side effects, but it works well for some people.

vjm0223 | @vjm0223 | 3 days ago

Have you considered going to the ER? Sounds like you need medical attention asap.

John, Volunteer Mentor | @johnbishop | 3 days ago

Hello @marie709, I would like to add my welcome to Connect along with @vjm0223, @jeff97 and others. You mentioned having tender scalp and vision changes which sounds more serious than normal PMR. My doctor and rheumatologist were always asking if I had a tender scalp or any pain in the temporal or jaw area which are red flags for folks diagnosed with PMR. Here's some information from Mayo Clinic on the symptoms - https://www.mayoclinic.org/diseases-conditions/giant-cell-arteritis/symptoms-causes/syc-20372758. If you do have GCA, this should be addressed as soon as possible by your doctor or a rheumatologist. I'm not a medical professional but I don't think this is something to mess around with as vision loss is a real possibility if not treated sooner than later. I would discuss it more with my primary care doctor right away. The starting dose for GCA is much higher than for PMR.

I agree with @vjm0223 that a trip the emergency room sounds like something I would do if it were me.

marie709 | @marie709 | 3 days ago

In reply to @vjm0223 "Have you considered going to the ER? Sounds like you need medical attention asap." + (show)

@vjm0223
I was sent to the er at first by my doctor. That was where I was seen by the original neurologist and they did some tests on me. It showed that I had carpal tunnel syndrome. It also showed that I had low reflex’s in my ankles knees and elbow’s. I am on an urgent waiting list for the next neurologist. A one year wait list!
Canadian health care is not the same as US healthcare. Believe me.

marie709 | @marie709 | 3 days ago

In reply to @johnbishop "Hello @marie709, I would like to add my welcome to Connect along with @vjm0223, @jeff97 and..." + (show)

@johnbishop thank you for your concern, my nurse practitioner is concerned about this. And she has put a rush in for the rheumatologist. April 3rd. Meanwhile, she had to lower the prednisone. I have been going for weekly check ups. I am more concerned about the prednisone because I am not feeling well at all on it. I still try to do my normal daily living around the house. But I am much slower and I don’t get to complete most of the things I try to accomplish. I am trying to keep positive but it is starting to affect my mental health. It is frustrating.

marie709 | @marie709 | 3 days ago

In reply to @jeff97 "Methotrexate and Kevzara are both approved to treat PMR. Unfortunately both of them can take up..." + (show)

@jeff97 I was offered methotrexate. I was not familiar with it. I am not the type of person to take a medication unless I have full knowledge about it. Of course doctors try to explain the difference between prednisone and methotrexate but they are busy and don’t have time. That day I was desperate for something to relieve the pain. I am in Canada and I do believe that KEVZARA has been approved by our fda recently. Yet the family doctor was not aware of it. Nor the nurse practitioner who works with the doctor. I am allergic to so many medications that I am interested in hearing more about this medication. I am allergic to antistetics. Not all but the main ones. It’s a redhead thing apparently! lol. The issue again is waiting for the rheumatologist to see me and then she will be able to make the call on the medication. I have experienced pain before but never anything like this. The prednisone at the higher dose was starting to show positive signs but the side effects were horrible and not safe in my case. My mother didn’t respond well either. When she took them for another reason. I remember laughing at her when she had hallucinations. Now I know what she went through and it’s not nice . I would do anything to have her back to tell her how sorry I was for laughing. In a joking way of course. My children were laughing at me of course! I just pray that I find the kevzara is the best for me. I normally have a high tolerance for pain. This is an all day long thing that doesn’t really slow down at night.

marie709 | @marie709 | 3 days ago

In reply to @johnbishop "Hello @marie709, I would like to add my welcome to Connect along with @vjm0223, @jeff97 and..." + (show)

@johnbishop I have just read up on gca and I agree it is very familiar to some of the symptoms that I am having. The bulging vein on the left side of my head, and blurry vision my scalp is tender but I am not experiencing a lot of headaches. Definitely tender scalp and neck pain I would have associated that with my shoulder and arm pain. I’m so happy that you pointed this out to me . I think it warrants a visit to the ER as much as I don’t like going there. It’s absolutely disgusting and not very hygienic. No private hospitals here. Our staff are incredible and over worked. I thank you all for bringing the importance of this part to my attention. I will keep you posted. Fingers crossed. I wish all of you well until I can get the time to update you on this.

vjm0223 | @vjm0223 | 3 days ago

In reply to @marie709 "@vjm0223 I was sent to the er at first by my doctor. That was where I..." + (show)

@marie709 I am also in Canada (BC) and I have to say I got excellent care.
I went to my GP initially and she suspected pmr right away. Got referred to to a rheumatologist and saw him within 2 weeks and was prescribed prednisone that day.

Mike | @dadcue | 2 days ago

In reply to @jeff97 "Methotrexate and Kevzara are both approved to treat PMR. Unfortunately both of them can take up..." + (show)

@jeff97

I'm glad you seem to be responding to Actemra. I think Prednisone is a good bridge to better treatment options. I have some unpleasant memories of methotrexate but it does work for some people.

Fortunately prednisone isn't the only option anymore. However, we still need to figure out what bridge to take to a better treatment. That seems like it is only done by the trial and error method.