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I was diagnosed with PMR on April 12th of this year after being in incredible pain and unable to do activities of normal daily living for months. My family physician couldn't figure out what was wrong with me so I sought help at another practice. I am so thankful for the Doctor who diagnosed me and immediately put me on prednisone. What a life changer. I was started on 15 mg of prednisone per day which helped tremendously. After a week it was increased to 20 mg as I was still having lingering pain mainly in my shoulders and wrists. I became pain free with the 20mg dose. My doctor told me the goal was to get me at a level where I was pain-free. At which point he wanted me there for one solid month before we started to titrate down at all.
On May 2nd my prednisone was increased to 30 mg per day for intermittent flashing I was having in my eyes. I was also referred to a vascular clinic for a temporal artery biopsy for possible GCA. (I had been having this ongoing flashing off and on for months and had thought it was from painless migraines with aura I had been told that I had). I didn't even realize it could be related to what was going on with me until I came across the information in reading about PMR and GCA following my initial diagnosis.
On May 13th I was diagnosed with GCA after a bilateral temporal artery biopsy and was immediately started on 60 mg of prednisone. Thankfully the vascular surgeon had done a bilateral biopsy as that giant cells were present on the left side and not the right.
I was on 60 mg per day for two weeks and have just started 50 mg until my next appointment mid June.
Like many others I also immediately started an anti-inflammatory diet which my diagnosing doctor recommended. I am eating mainly plant based food with additional fish proteins, tofu and some organic chicken.
I have also spent time focusing on reducing stress in my life and increasing physical activity with swimming and walking. *Of note, prior to PMR starting I had been an otherwise healthy and very active 60 year old female.
I know this is all a journey, especially after reading so much in this digest of other peoples stories. I had never heard of of PMR or GCA before my life-changing experience. Thankfully there's a place such as this to share our experiences, ask questions and learn from others.
Replies to "I was diagnosed with PMR on April 12th of this year after being in incredible pain..."
Good plan to do the antiinflammatory diet. To avoid side effects you can monitor your BP weekly and glucose monthly at home. Consider being
evaluated for increased cardiovascular risk and statins with your systemic
inflammation. Vitamin D, walking and weight bearing can help avoid osteopenia. I also take Pepcid plus at night when on rednisone.
Hello @tarafergusongould, I would like to add my welcome to Connect along with @jeff97 and others. I think @jeff97 is spot on about you having a good start and attitude. It definitely helps on this journey with PMR & GCA that no one likes to take.
Just in case you haven't tried the search function on Connect, it is a great way to find other discussions and member comments on specific symptoms and questions you may have. Here's a search using "PMR and GCA" that lists the different discussions and member comments - https://connect.mayoclinic.org/search/?search=PMR+and+GCA.
I found what helped me with my two occurrences of PMR was keeping a daily log. Do you keep a daily journal or log with your level of pain or other symptoms when you wake up in the morning along with your prednisone dose?
I know that feeling, I was diagnosed with PMR in September 2024. Took me a month, of not being able to get out of bed, to see a Rheumatologist! Started on 16mg of Medrol. By the end of the year I had a moon face, horrible. 9 months later i am down to 2-2-0, every three days. This morning I was in absolute agony, found walking extremely difficult. Two years ago I had a NodularMelanoma, still having Brain scans and PET scans every six months. Followed this with a 4cm thyroid nodule, which I still have as it was benign. Then I had a Cyst Rupture on my chest, six months of the nurse coming in to treat this. I have just been to see the Opthalmologist and she has diagnosed me with two cataracts, one in either eye, one of them is growing rapidly, due to my medrol. I have been told that my colouring and eye colour are at fault for this, blonde hair and blue eyes. Am feeling that everything is going wrong at the moment.
Welcome. I was diagnosed GCA in February (no PMR).
The high dose prednisone was a wild ride.
On Actemra infusions monthly now and weaning steroids every 2 weeks. Down to 25mg today.
Wishing you well on your journey and hope you can use Actemra to come down on steroids.
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Welcome to the club that you don't want to be a member of! I went through a very similar experience as yours 11 months ago. I was hospitalized for 3 days due to episodes of temporary vision loss in one eye. I received an IV each day of high dose methyl-prednisolone, and after that I was on 60 mg of prednisone for 6 weeks. My vision turned out ok. I started getting weekly Actemra injections after a month. The Actemra has allowed me to taper the prednisone down to 3 mg per day with no flares, pain, or other symptoms.
Have you discussed getting Actemra with your doctor? It is very beneficial in reducing your dose of prednisone.
I don't know how you feel currently, but I felt very bad when the prednisone dose was above 40 mg per day. I could only sleep 5 hours a night with the help of time released melatonin, and I felt very groggy during the day. Things improved quite a bit once I got down to 40 mg per day, and they improved much more as I got down below 20 and especially below 10. I almost can't believe how much better I feel now at 3 mg per day. It almost seems like I feel better than I did for the 2 - 3 years leading up to my illness.
Good luck with your treatment! It sounds like you have a good start and attitude.