Just diagnosed and still hurt in am with 20 mg

I have a great PCP, so I held off on rheumatologist for months after being diagnosed with GCA and PMR. Wish I'd gone sooner. She has been great at tracking my progress, blood testing regularly and keeping up with my Prednisone needs (which can change due to flares) and Actemra. She and PCP share my progress. Best of luck.

Did your rheumatologist start Actemra? When were you diagnosed with GCA and PMR? How long have you taken Actemra?

Hopefully the flares will stop as Actemra starts to work but don't expect to taper off prednisone too soon. Welcome to the forum!

Thanks for the welcome! Yes, my rheumatologist started the Actemra. I was diagnosed 13 months ago and have tapered several times, getting down to 8 mg, which I haven't been able to break through. Back on 50 mg to get pain under control. I've been on Actemra 5 months. Doc says to stay with it. Plan is to slow down Pred taper and eventually be only on Actemra for a year or so after. Long process!

@obxpoppop I can't recommend a higher dose of prednisone because I'm not a doctor. My PCP took recommendations from my rheumatologist.

A year or so sounds reasonable. It was a long process for me after Actemra was started but I took moderately high doses of prednisone for 12 years. That 7-8 mg dose of prednisone is a tough dose to get past. Hopefully Actemra will make the task easier for you.

@obxpoppop Good morning -- As @dadcue just said , the best we can do is relate our experiences and there are many other conversations about who started at what dose and what was the tapering schedule and advice about splitting the dose and keeping a pain journal . @johnbishop may invite you to tell more about yourself.

There is likely a'miracle dose' of Prednisone that will rid you entirely of morning pain and stiffness in BOTH your hips and shoulders. For me that does was 30 mg after being on sub- optimal dose of 20mg. Because i am 66 yr old woman i was advised to take Ca++, Vit D (my bone density results show i only have osteopenia)
Before i went on Medical leave from my Molecular Biology position in biotechnology ( because i could not function with the persistent morning pain in shoulders) I drew this word problem on the white board ! ha ha. I did indeed keep a pain journal /heat map of both areas of my body recorded at three times a day !
the other figure shows what is going on at the cellular level and there are anti-IL6 recepetor biologicals approved for PMR - you may already have seen this web site ? : PMRandIL6.com

Analytics can be funny especially when things are over analyzed!

My rheumatologist never told me how much prednisone to take. When I was first diagnosed with PMR, my rhematologist was perplexed with my account of how much prednisone I was taking each and every day. She said I should "find a stable dose of prednisone that worked."

At my followup visit, I reported that 40 mg was a stable dose that was working well. She seemed to think 40 mg was a "bit much" for PMR and said I should try reducing my dose.

I was pleased to report that I was on 30 mg at my next visit. My rheumatologist checked my CRP and ESR and said I should take a "bit more" prednisone. When it was all said and done, we settled on 35 mg as my starting dose.

I probably could have used more guidance as the years went on. After about 5 years, my visits were more focused on "how much prednisone I was taking" instead of PMR. To be honest, I wasn't convinced that I still had PMR because my symptoms were not the same as when I was originally diagnosed. At one stage, I suggested that my rheumatologist was prescribing prednisone to me just because I wanted prednisone. I called myself a "prednisone junkie" but she scoffed at that.

It wasn't like my rheumatologist was concerned about "how much" prednisone I was taking because she made sure I would never run out of prendisone. My rheumatologist was more concerned when I was going in the wrong direction and "how long" I was on prednisone.

That's the way I was until I devided my dosage. I am taking 15 mg and I take 10 mg at 8:30 am and the final 5mg at 6:30 in the evening. This has taken away the morning soreness. I could hardly get out of bed before. Can't hurt to try....

Hi
I am in a similar situation to all of you. Was dx in October and started on 40 mg of prednisone- then I tried to keep working... until PCP said no more. Gradually got to 35mg prednisone then to 30mg but when I got to 25mg symptoms reappears- now I'm not sure if it's the xmas stress, I've changed my diet stopped alcohol. I am due for CRP soon. I am not sure if I should go back up to the 30mg where I felt good but I am having a lot of side effects. My PCP is away until early February. My question is can we expect to have some symptoms or should we look for resolution? thank you for any guidance

It seems to be common that a decent single morning dose of prednisone doesn't get rid of morning pain. Prednisone loses its full effect within 16hrs, so it is to be expected. Raising the dose is not always needed and is to be avoided if possible, and a dose rise doesn't necessarily take away the morning pain anyway.

I started on a single morning dose of 15mg which reduced but didn't take away morning pain, even though it's the recommended PMR starting dose in Australia. So I read widely and found that many here split the dose, taking most of it in the morning and a smaller part of it in the late afternoon or evening. For me, that was 12.5mg morning and 2.5mg in the early evening with dinner. It worked. No more morning pain. I'm currently taking 4.5mg mornings and 1.5mg early evening. So far so good, and the smaller evening dose doesn't affect my sleep.

Avoiding an increase in dose when possible is important to reduce bad prednisone effects like bone loss, muscle wasting and fluid retention. It's also important to keep the main part of the dose in the morning when the body naturally produces most cortisol. Up to you, but I'd be thinking about splitting the dose for pain control, rather than increasing it.