Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

Hi. I'm a brand new member today. I'm told by my doctors that I'm a very complex patient, a dubious distinction! Among several other diseases, I have Giant Cell Arteritis and am currently on injections of Actemra, 162 mg. Initially, injections were weekly but due to very low white cell count and low neutrophils, am now going from bi-weekly to weekly, depending on my lab results. I Iost the vision in my right eye just prior to diagnosis, was hospitalized and given 3 days of 1000 Prednisone I.V., during which time I had a clot in my right leg and suffered 2 small strokes, one on left and other on right. This week, I've suffered a second clot behind my knee in my left leg. Currently on double dose Eliquis, 20 mg for 7 days and 10 mg thereafter. Broke out in painful multi mouth cankers this week.
Just FYI, was on gradually titered Prednisone until this November, along with the Actemra, which was started in November 2019. Anyone else with similar experiences?
That's enough for now!

Hello @artist01, Welcome to Mayo Clinic Connect. It sounds like you have a very understanding doctor recognizing you are a very complex patient. The good thing, if there can be something good about GCA, is that you are definitely not alone. While I don't have GCA, I do have PMR which is currently in remission. It also sounds like you have a lot going on medically. I'm hoping you can connect with others here on Connect with similar symptoms and learn what they have shared. Here are some discussions that you might find helpful.

- What's your experience with Actemra for GCA?: https://connect.mayoclinic.org/discussion/gca-1/
- Worrying GCA development: Lost sight in one eye temporarily: https://connect.mayoclinic.org/discussion/gca-development/
- Medications for Temporal Arteritis/Giant Cell Arteritis (GCA): https://connect.mayoclinic.org/discussion/temperol-arteritis-or-giant-cell-arteritis/

Are you still taking prednisone along with the Actemra?

My White Cell Count and Neutrophils went down, but only after being on Prednisone as well as Clozapine, for a year and a half, so I was taken off both. By then, I'd also been on Actemra for a year. I'm still on Actemra only, but having to monitor blood work weekly or bi-weekly for low results in those two categories. If there's a drop, I have to pause the Actemra until my readings are again stable. I know, I'm a Piece of Work! My best wishes, Laurie

Glad to find this group! I was lucky to have been diagnosed early by my PCP in October 2020 and started at 60mg prednisone and began taper after 2 weeks. I also had bilateral biopsy to rule out GCA. Rheumatologist changed me to methylpredisalone, but I don't understand the reason or difference between the two steroids. I'm also on split doses- morning and evening with food. I'd like to better understand these steps. I've been at 20mg Methylpredisalone for 3 weeks. It reduces, but doesn't eliminate the pain and stiffness. Any comments or suggestions?

Welcome to the group. 60 mg is a common starting dose for suspected GCA, but high for PMR. The general rule is to take as little prednisone as controls your pain. We are all a bit different and 20 mg may not be quite enough for you if you’re still in pain. (I started at 40 mg and quickly decreased to 25.) Once you find that sweet spot, you must taper SLOWLY to avoid flares. Many doctors push this process so you can avoid the side effects of prednisone, which are many. However, the side effects can be dealt with and are preferable to PMR pain. Methyl prednisolone is a corticosteroid that is close chemically to prednisone. Ask your doctor to explain why the change occurred. You will find with support from this group that you can manage PMR symptoms and learn to have patience as it can be years before the disease fades. Again, everyone is different so it’s impossible to predict how long a journey you have ahead of you. But now you know you don’t have to travel it alone. I often tell people that PMR isn’t fun, but if you have an autoimmune disease, this is probably the most manageable one to have. Happy Holidays!

I am new to the group and was diagnosed with PMR in October of 2020 after 6 months of debilitating suffering (you know what I mean!). I started out at 20 prednisone and am now at 10. The 20 to 10 was done by my PCP before I saw the rheumatologist, who said it was too large and quick a reduction but kept me on it. According to drugs.com the main difference between methylpredisalone and prednisone is that methylp. is slightly stronger. Four mg of methylp. is equivalent to 5 mg pred. I am not a doc but from what I've read 60 seems a bit high, esp. with no GCA. My rheumatologist is keeping me on 10 even though I told him I still have some discomfort, esp. in the morning. I can take the discomfort (about a 1-2 on pain scale) and would rather be on a lower dose than a higher one. We love the benefits of prednisone but oh, those side effects! Please talk to your doc about the persistent pain despite the high dose.

Hello @moni54, Welcome to Connect. Thanks for sharing your PMR story. I'm with you on the rather be on a lower dose of prednisone crowd but pain is the boss when it comes to PMR and tapering. I've had 2 occurrences which my Mayo rheumatologist started me on 20 mg prednisone for both occurrences. I was told to take it slow and easy when tapering and listen to what my body was telling me. I found I could live with a little pain or discomfort which probably like you was around a 1-2 on the pain scale. I didn't tolerate the 1-2 well for my first occurrence with PMR and it took me 3-1/2 years to taper off. Six years later when the PMR came out of remission it took me about 1-1/2 years to taper off and the 1-2 on the pain scale was normally for the first few days after tapering to a lower dose. The last six months of each I tapered by 1 mg or 1/2 mg on a week or two week schedule. My rheumatologist really helped me with the tapering schedule when I had any questions.

Have you asked your rheumatologist on the possibility of splitting your dose and taking some in the morning and some in the evening to see if that helps reduce the pain/discomfort in the morning?

My PMR journey began April 2019 with what I thought was hand injury from my dog pulling on leash. My right hand became very swollen, couldn’t grasp anything, really lost use. Had PT for two months, which helped some. Then in June, I could hardly get out of bed, very stiff neck, could barely get into/out of car. Took docs ‘til August to diagnose PMR—after MRIs, CAT scans, Spine consult, colonoscopy, etc. started on 15mg pred & after a week most symptoms dramatically improved. Took a while to get use of hand back so that I could chop an onion again. Tried tapering down pred after six months, got down to 8.5 mg over a couple of months, then my left foot/ankle swelled & my left bicep became so painful—so, back up to 13mg pred to address those issues. So, 14 mos on pred & I am attempting to taper down, am currently @ 11.5 mg, going down half a mg after 4 weeks & see if that works. I have found that massaging my swollen foot/ankle works wonders@ eliminating swelling, so am trying that on bicep as well with some success. Like everyone, I’m so anxious to get off pred!!

I am sorry it took so long to diagnose you -- I can empathize because I had a similar experience. I thought that extreme exercising injured my thigh muscles and pain started in late April. It got more and more debilitating (hips down to knees but no arms yet), saw doc first time in early July and blood work was crazy - high platelets, severe anemia. I had taken NSAIDS daily for pain for 2 months so my PCP thought anemia might be stomach bleeding. Pain in thighs was not really addressed. I was put on nexium and she sent me to a hematologist who treated the anemia with infusions and almost did a bone biopsy but platelets had come down some. She had earlier thought I had either broken a hip (did an x-ray) or that my bad back was causing my legs to hurt (ordered PT which I couldn't even go to if I wanted to due to PMR pain and fatigue). I saw my PCP twice after that plus the hemodoc and when my arms and neck started to really hurt I went back to her on Oct. 20. I had by now looked up my symptoms (pain in thighs, hips, upper arms etc.) and thought I had PMR, but I let my doc come to that conclusion, which she did. I started on 20 prednisone and within 3 days was feeling more like myself. PMR did such a number on me that the person in the mirror looked like an old, sick version of me, and a scary one. She referred me to a rheumatologist (first appt. Dec. 9) and he has me on 10. So it's been quite a journey and not over yet. I see him again in March and am hopeful he will cut the 10 down a little. I realize that slow tapering is the best for long term remission, but like all of us, am anxious to not be on prednisone for too long. And, like all of us, am so grateful to be feeling better on it. At my worst I took 3 naps a day and did the minimum to get through life (I live alone). Covid did me a favor and the library I work at was closed for May and June and then we worked part time until Sept. I could not have worked full time if my life depended on it at my worst. Good news about this disease is that it does no damage to muscles, ligaments, or joints - yay! We have to stick out the treatment and hope it's shorter rather than longer!

It really is a journey, isn't it?