Tapering off update (10 days on prednisone)

[Cpires2323]

Hello Bcol and all my new friends in this group. 💕

(For some reason I cannot respond to Bcol messages on the thread. It fails to send every time...)

Thank you for your feedback. (Bcol) Are you still in the process of tapering off little by little or at this point you stopped at 15 mg?

My own update below:

1 week at 15 mg, it was not magical like many people described but it was amazingly helpful! Energy level picked up, morning stiffness gone. Just still a bit of discomfort in knees and thighs. And a bit of pain on the hip joints (depending on the movement).

A couple of days ago, as the doctor recommended, I lowered the dosage to 10mg. Stiffness seems to be coming back little by little and the mornings are not as joyful as the mornings for the past week 😳

Pain in hip joints and shoulders coming back. Knees and thighs discomfort much more noticeable... it feels like “heavy legs”...

This coming Tuesday (9/22) I have a follow up with the rheumatologist to go over blood test and MRI (only wrists) results. I hope the initial diagnosis will be confirmed so he can up the dosage again for a “real course of treatment” 🤞🏻

Will keep you all posted. Thank so much for the amazing support. 💕

[PMRpro Ambassador]

Was that week just for diagnostic info? Would you say the improvement was 70% overall? That's what they look for - and over a month to 6 weeks at 15mg that would almost certainly improve. But unless he found anything else with the MRI - sounds as if you may be cooking on gas!!!

[Cpires2323 in reply to PMRpro]

I would say improvement of 80-85% with 15mg dosage. That’s pretty good indication it IS pmr, right?

[PMRpro Ambassador in reply to Cpires2323]

Certainly what they look for!

[Cpires2323 in reply to PMRpro]

Even my mood improved quite a bit because I wasn’t in so much pain (or stiff all around anymore). Hadn’t felt that good in over a year... maybe more!

Again... no magic results (as if the pain was gone completely), but comparing to the last year or so I was feeling pretty incredible!

[Bcol]

Good morning, sorry only just seen your reply. I am doing OK at the moment and if all carries on going well I have just had my last dose of 15mg and my slow taper down continues. Having said that I am a bit achy this morning and if that doesn't disappear during the day I will stay at 15mg for another week and then reassess. Hoping to get to 13 in the next 5/6 weeks. I fully realise this might not happen. If I am successful here I won't be looking at moving lower in steps any larger than 1mg over a far greater period of time. I'm not looking to get to 0 mg in any particular time frame, yes, I have a plan but it's not set in stone and can/will be adapted to circumstances as and when they arrive. it will take as long as it takes and if/when I start to get symptoms back I'll stay at what works or increase until stabilised.

So sorry to hear about the death of RBG, uncertain times so please stay safe. Peter

[Cpires2323 in reply to Bcol]

The Notorious RBG 🥰 she was a super hero! And now... amidst the loss of a jurisprudence icon we have to deal with all the madness going on during this election. This whole situation just adds on to the stress....

[Bcol]

Sadly, I'm quite sure that there are a fair number of people in the States who would see her exactly as the "notorious" description.

[Cpires2323 in reply to Bcol]

Very true... and sad.

[Cpires2323]

Notorious RBG was a nickname she “earned” by being a famous dissenter in our federal court system 😅

thedailybeast.com/ruth-bade...

She was nothing short of amazing and will be truly missed 😞