Diagnosed with PMR 16 days ago.

A similar thing happened to me.

Was initially on 20 mg/day of prednisone due to PMR/GCA. This was good at first, but then the pain started creeping back over a few weeks. What happens is that your body senses the prednisone, which acts as synthetic cortisol, and so slowly stops making its own cortisol. This takes a few weeks, during which your pain will increase. In my case, after about a month, the inflammation was so severe that ER doctors then put me on 60 mg/day of prednisone due to an episode of double vision.

I recommend getting CRP and SED inflammation scores. If they are still high, increase the prednisone incrementally until the CRP and SED scores come down to near normal. Then you've found the level of prednisone you need. For me 60 mg/day was more than enough; I actually think 40 mg/day probably would have been enough.

In my case, I also started on weekly injections Actemra after about 5 weeks of 60 mg/day of prednisone. I then tapered off the prednisone over a period of 6 months while continuing the Actemra. I ended up staying on Actemra for 2 years. It was very effective for me and I suffered virtually no side effects.

A similar thing happened to me.

Was initially on 20 mg/day of prednisone due to PMR/GCA. This was good at first, but then the pain started creeping back over a few weeks. What happens is that your body senses the prednisone, which acts as synthetic cortisol, and so slowly stops making its own cortisol. This takes a few weeks, during which your pain will increase. In my case, after about a month, the inflammation was so severe that ER doctors then put me on 60 mg/day of prednisone due to an episode of double vision.

I recommend getting CRP and SED inflammation scores. If they are still high, increase the prednisone incrementally until the CRP and SED scores come down to near normal. Then you've found the level of prednisone you need. For me 60 mg/day was more than enough; I actually think 40 mg/day probably would have been enough.

In my case, I also started on weekly injections Actemra after about 5 weeks of 60 mg/day of prednisone. I then tapered off the prednisone over a period of 6 months while continuing the Actemra. I ended up staying on Actemra for 2 years. It was very effective for me and I suffered virtually no side effects.

Sorry you’re going through this. I also did not respond well to 20 mg, I was referred to a rheumatologist who increased pred to 40 mg, and after a couple of months added methotrexate, which eventually led to decreasing the prednisone (can’t get below 15 mg without a flare). She wants me to start weekly injections of actemra but my drug plan doesn’t cover it for PMR (although it will for other diagnoses 🙄). PMR is different for everyone and sometimes a rheumatologist just has more knowledge in complicated cases. Good luck ❤️

Have you stopped Actemra and been able to stay off prednisone? I have been on Actemra for more than 6 years with virtually no side effects. Whenever my Actemra infusions have been held for more than 6 weeks, my symptoms return along with increased inflammation markers. My rheumatologist sees no need and has no plan to discontinue Actemra.

Maybe I need to try again to see if Actemra can be stopped. My problem is that multiple different conditions could flare up again. I would have to convene a committee of multiple medical specialists to see if they could all agree with a plan to stop Actemra.

Like you I was diagnosed with PMR around a similar time (July 7). Went to the GP as like all I just couldn't understand why I was so debilitated with moving and pain. GP expected PMR and arranged blood tests but not for another 2 days so I had to sit through some serious discomfort for a few days until the blood tests were done and medication was prescribed.

During those non medication days I took anywhere from 5 mins to 15 mins to get off the sofa. Weak and extreme pain. Doctor started me on 15mg Prednisolone. She implied I'd see big differences once started. She actually said I'd feel 100% better.

Needless to say I'm unsure if the dosage is high enough or if she's correct in her diagnosis... Although reading through your comments I presume she is as you all sound like you suffer as I do.

I notice for sure improvement since taking the meds 8 days ago now. Mornings definitely suck. Takes me around 90 mins to walk upright and be able to wash my hair without pain. But then as the day goes I get better and better. Feel almost pain free by afternoon and remain moderately pain free until bedtime around 10/11pm.

What I don't know is if it normal to still not have full range of motion in my hips for example. I can't pull my knees to my chest. Pain in the hip joint is too much. I struggle to bend over enough to easily put socks on? I obviously can get socks on but not like I'd consider a normal person does using both hands on one foot to guide the sock on.

Seems like my starting dose is pretty low and I'm wondering if those who have success feel normal in the sense like they did pre diagnosis? Appreciate maybe not the same energy or strength but... Can you put socks on without difficulty or pain haha?!

Like you I was diagnosed with PMR around a similar time (July 7). Went to the GP as like all I just couldn't understand why I was so debilitated with moving and pain. GP expected PMR and arranged blood tests but not for another 2 days so I had to sit through some serious discomfort for a few days until the blood tests were done and medication was prescribed.

During those non medication days I took anywhere from 5 mins to 15 mins to get off the sofa. Weak and extreme pain. Doctor started me on 15mg Prednisolone. She implied I'd see big differences once started. She actually said I'd feel 100% better.

Needless to say I'm unsure if the dosage is high enough or if she's correct in her diagnosis... Although reading through your comments I presume she is as you all sound like you suffer as I do.

I notice for sure improvement since taking the meds 8 days ago now. Mornings definitely suck. Takes me around 90 mins to walk upright and be able to wash my hair without pain. But then as the day goes I get better and better. Feel almost pain free by afternoon and remain moderately pain free until bedtime around 10/11pm.

What I don't know is if it normal to still not have full range of motion in my hips for example. I can't pull my knees to my chest. Pain in the hip joint is too much. I struggle to bend over enough to easily put socks on? I obviously can get socks on but not like I'd consider a normal person does using both hands on one foot to guide the sock on.

Seems like my starting dose is pretty low and I'm wondering if those who have success feel normal in the sense like they did pre diagnosis? Appreciate maybe not the same energy or strength but... Can you put socks on without difficulty or pain haha?!