New Dx of PMR

I disagree with your statement about Actemra. The only side effect I've had is possibly high cholesterol. I've seen many more comments about bad side effects from Methotrexate than from Actemra.

I have GCA and PMR diagnosis Nov 2024 . Immediate start on 50mg pred rapid taper and weekly Actemera 162mg subcutaneous weekly. I too was concerned about pred side effects. The worst I experienced was insomnia when on high dose . I had some other side effects such as minor raise in blood sugars, and blood pressure. No fluid retention, no moon face , no weight gain. I was quite strict with low GI diet , low salt diet. This probably helped.

I’m now off prednisone completely, all done in 3 half months . Blood sugar and blood pressure returned to normal. No problem with my bone density either. For further bone scan later this yr .

I was in full remission according to my blood results and zero symptoms within 2 months of treatment.

Now I’m on Actemera as a mono treatment for one year.
No side effects so far, just a slight cholesterol increase. Not a problem since my cholesterol has always been on the low side anyway.
Rheumatologist says any relapses would be treated with Actemera, no more prednisone
Thank you modern medicine made it all manageable.
Actemera has been effective for me and saved me from high cumulative doses of damaging pred .

Great to hear Pred and Actemera working for you too Jeff97, albeit a slower taper . Hope your eyesight is preserved? My GCA is with no temporal / cranial involvement. Medical emergency non the less with aortic involvement and other major vessels.

I know my experience with rapid pred taper is contrary to many others experiences I have read in this forum. However fortunately for me it has worked to plan .

I’m back to pre diagnosis health, travelling overseas at the moment. Keeping Actemera refrigerated as i travel is a small concern, but doable.

Great to hear Pred and Actemera working for you too Jeff97, albeit a slower taper . Hope your eyesight is preserved? My GCA is with no temporal / cranial involvement. Medical emergency non the less with aortic involvement and other major vessels.

I know my experience with rapid pred taper is contrary to many others experiences I have read in this forum. However fortunately for me it has worked to plan .

I’m back to pre diagnosis health, travelling overseas at the moment. Keeping Actemera refrigerated as i travel is a small concern, but doable.

Wow, it's really amazing that you were able to get off of prednisone so quickly. I would think you have to be in the top .1 percent of people for minimal treatment time. I've been under treatment for almost 8 months, and I expect that I'll be taking prednisone for at least another 6 months. I think the Actemra has the GCA and PMR under control, but it will take that much time to get off of prednisone and avoid adrenal insufficiency issues. I think my rheumatologist was conservative with my treatment due to significant visual involvement with my GCA.

I’ve been taking Prednisone for about four years. I was down to 2.5 mg a day. Lately back to five as symptoms increased dramatically during attempts to sleep. I see my Rheumatologist tomorrow and am truly frustrated and at my wits end

You will find many helpful suggestions scrolling through
the PMR group comments. It sounds like your physician
is aware of your concerns on handling prednisone.
Not all of us experience long term need for prednisone.
You well might be done in a matter of months. The
side effects are manageable and mostly preventable at
your early diagnosis. Know all your lab results and keep
a copy of all your records. If you are concerned about
blood pressure you can easily monitor it with a home
unit.I always took my meds with a meal and use an antacid at night. Mediterranean diet helps with inflammation and weight control. Blood sugar can be checked every few weeks at home. A bone density scan and vitamin D with calcium supplement is indicated as well. If you need a higher dose for symptom control
you can feel more confident and stay active. Walk
every day. If you are proactive and stay positive you
are most likely to do well. Share all your concerns at
regular visits with doctor.

My brother-in-law has been taking Methotrexate for 12 years for PMR. He's tried to get off of it several times, but the PMR has always come back. I hope your rheumatologist can help you get some relief.

Maye, my vision is ok. I got treatment for the GCA just in time to save it. I was hospitalized for 3 days and treated each of those days with an infusion of high dose methylprednisolone. I think my GCA is only cranial. I'm feeling much closer to pre diagnosis health as I keep tapering.

For what it's worth, my understanding is that Actemra can go unrefrigerated for up to 2 weeks.