PMR still active after almost seven years

[Judioz]

Hi everyone - I live in the Australia Capital Territory (ACT) in Australia. I was diagnosed with PMR seven years ago in July 2011. I was 68, very healthy and active. It started suddenly but fortunately my GP picked up that it was PMR and once the tests were done, started me on high dose (I think 50mg) Prednisolone. I then went to Rheumatolgist and started to slowly reduce the Pred. I had a lot of difficulty reducing after getting down to 20mg and so it went on. Was on Plaquinol for a while but I don't think helped. I stopped going to the Rheumatologist and managed the reduction myself. Went off Pred four moths ago as was almost pain free, however I had a flare and my GP suggested I take Pred again. I'm now on 2mg which keeps the pain in my shoulders/upper arms/neck at a level I can put up with - and it's only in the evening. Compared to how I was in the beginning I am feeling welll now, more energy, no fatigue, no stiffness in the morning. It's been a long road. I have a friend who has a friend (now 80) who like me, is taking 2mg and was diagnosed with PMR more than even years ago.

I got the curly hair, so maybe that's a bonus.

[Hidden]

Hi judioz

It's been a long road for you with a the usual bump. It sounds like you are doing ok at 2mg. I Am only 2 years in and at 9mg. I know of friends relatives who just stuck at dose of 7ish mg for years as every time they tried to drop even by half a mg the pain returned. Glad you have survived the travails 🌻

[Hindags]

Thank you for sharing your PMR journey. I hope your current dosage is better than just barely adequate.

[DorsetLady PMRGCAuk volunteer]

Hi,

Wow, that’s a high starting dose for PMR, are you sure you didn’t have GCA as well.

Sorry to hear you had a flare again recently, and as Hindags suggests maybe the 2mg is only just enough - so don’t let a repeat performance occur.

[SheffieldJane]

You have done really well managing your condition. Personally I would be content to stay at 2 mg forever. The side effects are non existent and it keeps you well. Thank you for sharing your positive story. 🌷

[Judioz in reply to SheffieldJane]

Yes, that is what I am thinking?

[PMRpro Ambassador]

Were they sure it was just PMR? That is a very high dose to start with for PMR. But if I was good at 2mg - I wouldn't worry about going any further down!!

[tangocharlie]

I tried to stay at a very low dose of pred of about 2 or 2.5 but it still affected my sleep. So I now just take them for a few days at a time when I have a bad flare or something I need the energy to do and put up with the stiffness the rest of the time. Hopefully after 7 years it's all burning out.