Taper advice please

[membership]

I was diagnosed with GCA in April 2018. I have been tapering (successfully) slowly from 60mg pred. and since March 2020, reducing 0.5mg every two months. All went well until I developed mild (right) shoulder pain mid July, six weeks into the 6.0mg dose. I upped the dose to 7.0mg for a week, but the problem remained and on the evening of 31 July I experienced sudden and very severe right knee pain. This was not relieved overnight, so I upped the dose to 30mg the next morning.. five days later and the symptoms have almost disappeared; just very mild shoulder pain remains.

I would welcome suggestions as to how best to taper down again.... when should I drop the dose from 30mg and to what dose, before starting the slow taper again ? getting within reach of 5.5mg before this flare, is so disappointing ! Obviously the disease has not burnt itself out .... yet !

[SheffieldJane]

Unless the shoulder pain and knee pain are not PMR. Osteoarthritis can ease with Prednisalone but it is not the prescribed medication. My diagnosed Osteoarthritis popped up on the lower doses, particularly knee pain and swelling - particularly bad descending the stairs. I got left shoulder pain on the site of an old hairline fracture too. These symptoms were helped a bit by painkillers, unlike PMR. I wonder what would happen if you returned to your last comfortable dose? Failing that you may be able to get back using bigger decrements like 2.5 mgs. My body tended to like 10 mgs. You have been so meticulous, I share your disappointment and really hope you get back on track. It is unusual for one sided pain to be PMR, in my experience.

[membership in reply to SheffieldJane]

Many thanks. I am sure it is PMR, I have no sign of OA and a last, more severe flare up about a year ago, settled quickly with increased pred. Unfortunately, my Consultant (at RHH, Sheffield) is away until 15 August, and I'm not inclined to say on 30mg for so long. Do you think one week at 30mg would be sufficient and then drop back to about 7mg, or am I being a bit hasty ?

[SheffieldJane in reply to membership]

You know your own body and you’ve done so well, I hesitate to give my guess. I hope you have headed off a flare. The bit that’s hard is the gap between the shoulder and the knee trouble on the right hand side. PMRPro is very good on the conditions that can co-exist with PMR. Good luck, fingers crossed for whatever you decide.

[membership in reply to SheffieldJane]

Sorry if I sound too clever, but I am a senior Physio and I'm pretty sure of my diagnosis. The flare last year was almost identical to this one, but more severe , affecting exactly the same two areas. It's perhaps odd, but then I only had the headache and double vision with the GCA and none of the other symptoms... just being awkward !

[SheffieldJane in reply to membership]

Clever is allowed here haven’t you noticed? 🙂

That sort of observation is gold dust. We are all pretty unique. My GCA wasn’t at all typical in its presentation either. I get vague constitutional symptoms ( flu-like) no specific pain. Tapering off my PMR dose was problematic. At 3 mgs I got a headache ( not severe, like some) and eye symptoms. The halo effect showed up in my peripheral arteries during an Ultrasound Scan.

Not awkward at all, feel free to share physio advice, if you haven’t already.

[membership in reply to SheffieldJane]

Thanks Jane.. I've been retired for a while now and medication has advanced in leaps, which is why I wanted help with the dosage... in the 1960s steroids (and their side effects) were so awful that I have always regarded them with great respect, especially now that I am digesting the things myself ! I'll try reduction to 10mg on Saturday, and see how I go... oh! to get back to 6mg and then taper... that would be so pleasing. I hate taking pills and only used to go to the GP every five years (if necessary then) so this whole journey is a bit of a culture shock ! I just keep smiling, and keep away from anything that might be contaminated with Covid19.

[SheffieldJane in reply to membership]

I think that’s what I’d do in your shoes too - 10 mgs.

Nothing at all would have lifted you out of the pain and stiffness except Pred. With any luck we will fully recover from these particular autoimmune diseases unlike some of the diseases, ours go into remission. A lot of really fit people get PMR and or GCA, high achievers who expect a great deal from themselves. People who care for others, we have athletes too. Then wham! Life happens and you are felled for a bit. The trick is acceptance and mitigate the side effects where ever possible, pace your activities and get plenty of rest and sleep. A good low calorie diet, no processed foods or sugar. Supplements Calcium, vit D Vit K, Magnesium, Zinc. I have added vit B 12 for my mood. Exercise - walking on the flat, Pilates, gentle yoga, swimming - how I would love to swim in a luke warm empty pool.

[membership in reply to SheffieldJane]

Thanks Jane. I will drop to 10mg as from Sunday and see how it goes...at least I feel fine at the moment, despite the pile of pills, or perhaps because of them. Stand by to hear good news !

[DorsetLady PMRGCAuk volunteer]

Do you have PMR as well as GCA ?

If not then then unlikely to be GCA, although legs are affected occasionally.

Think as both are single sided, you need to make further investigations. Like SJ I would plump for Osteoarthritis - the low doses allow that pain to come through, but the higher dose of 30mg would mask most of the pain.

I would drop back down to 10mg - maybe in one go - maybe staggered - 20mg for a few days - then 10mg. Stay there for a couple of weeks, and then restart your taper.

Just as an aside, 30mg was probably a bit OTT- 15mg, even 12.5mg might have been enough even if it was/is a GCA flare. ..,,and no it’s not gone into remission yet!

But when you can please the OA possibility checked out.

[membership in reply to DorsetLady]

Many thanks... I am 99% sure it's PMR and not osteoarthritis.. last year I had a flare and my Consultant told me to go to 30mg, so I just tried it again.. it has worked very well, but I don't want to mess things up by staying on a higher dose too long. I think I'll give it to the end of this week and then try 10mg for a few days, before dropping a bit lower... don't want to give the adrenals too much of a shock ! Fingers crossed !

[DorsetLady PMRGCAuk volunteer in reply to membership]

So you have PMR as well as GCA.

But have to agree with PMRpro, it’s not typically PMR.

[PMRpro Ambassador]

You can drop back to the old dose or your lower dose of choice after up to 7-10 days at the higher dose.

But to be honest - there is nothing typical of PMR in what you describe and I think you should perhaps speak to your rheumy?