Last day of 5 day Pred trial.

I have just taken my last dose of the 5 day trial with 15mg Pred and would like to share my observations and hopefully obtain advice moving forwards;

Benefits; significant improvements in general, I feel my joints are looser, moving around more easily, have had no fatigue for a week now, even my back feels slightly improved (chronic disc bulge), my thumbs are less swollen and less painful, wrists less painful, turning in bed is easier, legs no longer feel like logs, more energy, ADL’s easier, mood is so much better, my partner says the old me is back!

Trade offs; wakeful/disturbed nights, palpitations in the night, bit jittery (predisposed to mild anxiety at baseline).

My right shoulder / upper arm muscles remain very painful and I think will be stubborn to shift (waiting for an ultrasound ?frozen shoulder). My dog barked suddenly in the night and in my panic I turned on the bedside lamp wrenching my shoulder and the pain was horrific, made me feel very sick in indeed until it calmed down!

So, all in all I really do feel more human again, have even booked a 2 night staycation for my 50th, something I don’t think I could have considered over the previous six months, what with the problem of an unfamiliar bed /fear of discomfort.

I am thinking when I speak to the GP in the morning to continue with 15mg, for another month and then try to taper down to 12.5?

I wish everyone a pleasant and sunny Sunday 🙂

[DorsetLady PMRGCAuk volunteer]

Sounds good so far - go for 15mg for another month, and then take it from there. 15-12,5mg is a recognised taper, but not always achievable - so also ask GP for 1mg tablets for future.

Just one word of caution, your underlying illness is not cured, all the Pred is doing is controlling the inflammation produced on a daily basis.

The old you is not back 100%, so don’t, in the euphoria of feeling normal, take on too much!

The staycation sounds great and enjoy it, but just be aware you may feel shattered afterwards (or even on it) - so plan ahead!

Trade offs are par for the course I’m afraid - but manageable.

[Hidden in reply to DorsetLady]

Thank you DorsetLady, I will take your advice 🙂

[SnazzyD]

Just going on what I read here, I’d try another week or two on 15mg but if no significant improvement on that shoulder pain, I’d go up to 20mg because 15mg is a low end dose for PMR. The other thing is, that you do need to celebrate your new found joie de vivre with rest, rest and more rest. Yes, the side effects are a nuisance but they do go with reduction in dose, but do not be tempted to reduce faster in order to get rid of them. Bear in mind that if you go down faster than the autoimmune activity, you risk developing GCA and high doses for that will make 15mg seem like a holiday.

[Hidden in reply to SnazzyD]

Thankyou SnazzyD, I will monitor the shoulder pain and take on board your comments about the risk of reduction and GCA, that I certainly do not want to run the risk of!!

[PMRpro Ambassador]

Hope the staycation includes a really nice relaxation section - like a sunlounger with a beautiful view and a good book. Or whatever floats your boat. But NOT a hike to get to the view, even on flat and surfaced paths! Rest is the order of the year ...

[Hidden]

Thank you PMRpro, the staycation will be a little log cabin in a peaceful setting with a hot tub. Minus the sun lounger I’m afraid, although you never can tell with our random weather patterns.... and we do get some nice sunny days in November....🙂

[PMRpro Ambassador in reply to Hidden]

Sounds OK!! Though I would want a really comfortable chair of some sort!

[Theziggy]

I've had two frozen shoulders (before Palindromic Rheumatism), had to go to Physio for both and do exercises at home. I never had an Ultrasound for either. Took quite a while to clear up!

[Hidden in reply to Theziggy]

Hi Theziggy, this is my second frozen shoulder too, they are stubborn aren’t they. I am a little adverse to physio as had I had treatment years ago when my back went into major spasm. The only benefit I got from it was ultrasound therapy . I found the exercises just made it worse. I have just looked up Palindromic Rheumatism, looks to be very painful. It’s interesting as to so many of us on here have prior diagnoses of such conditions/ RA /OA/ back problems and who go onto to develop PMR / GCA.