Holiday Help for possible PMR

[Leafsong66]

After seven days on an extra 5 mg Prednisolone daily (10 in total) I am slightly improved but still in agony with knees for sitting and rising to standing. Dressing is doable with much puffing and panting. Having the flu from Christmas Eve has only added to the fun by giving much reduced sleep ( sometimes 2-3 hours only). Last night I slept past the 2 am point of taking the steroids and almost could not get up from the recliner, I had been sleeping in. Even now at 9:50 am I am very stiff and painful on wrist movement , reaching up, and perching on the loo.

I cannot see Pathology for a blood test until Monday. There’s no GPs and Rheumies.

having not been officially diagnosed with PMR But with GCA last July, I’m reluctant to take matters into my own hands. But I’m also so miserable and desperate, I am considering going up to 15 mg. I’m thinking 10 mg at roughly 2 am and the last five at 8 am. Does this sound like sensible plan? Or should I present myself to the Emergency Room in the early hours when I’m most affected?

Thank you dear experts for taking the time out of your hols to listen and to care.

Praying that we can all still enjoy the blessings of the season despite whatever state of health we are in.

[DorsetLady PMRGCAuk volunteer]

As we said in previous post sounds more PMR than GCA - so although that may be painful, but not as worrying [from our point of view].

Think as it’s holiday time you probably would be sensible to go up to 15mg daily [whether you take as one dose or two is your choice] - so add in the extra now.

You can stay on that dose for up to 7 days under the flare protocol [so giving 14 days in total] - by which time you should know if it’s working or not. If it’s not, then you will require medical advice, but hopefully it will. If it does, I’d then be inclined to go back to 10mg initially, and then re-evaluate.

Not sure how much is PMR related and how much flu [that causes muscle/joint pain] have you tried usual flu remedies? If so, did they help at all?

[PMRpro Ambassador]

I don't know what Aus is like but presenting at the ED in the early hours is likely to mean nothing more than you wait even longer as there are fewer staff, especially doctors, and just as many patients - often there because of alcohol abuse! And technically, a flare of existing disease is not an ED problem. Do you not have an equivalent of the UK 111 service which replaces GP services out of hours?

However - I'm not entirely convinced this is "just" PMR as it rarely affects joints that severely and you said NSAIDs helped. Inflammatory arthritis needs to be ruled out. But in the meatime - does 15mg make life liveable?

[Leafsong66 in reply to PMRpro]

You make a good point. I’m not very fond of our ED department as they insist on cannulating every patient and it takes them forever to do that with my tiny veins. ( only tiny thing about me)

I’ve just started 15 mg today, so shall let you know how the stiffness and joints react. The worst part today was the knees for getting up and down. But I’ve discovered if I spread my legs apart like a giraffe drinking it’s easier! I also pull up on the open door knobs in the loo. ( of course this is a temporary measure! I certainly hope I’ll get through this debilitating stage quickly).

thanks so much for your input! It’s so helpful especially in the radio silence of the Christmas period.

[PMRpro Ambassador in reply to Leafsong66]

If you are really an emergency then a cannula MAY save your life if you collapse - and veins are even harder to find then in a panic!!!! I do see their point ...

[Leafsong66]

you’re quite right.

[JessJess21]

firstly, you poor thing!! I know what the pain is like and how disabling and debilitating it makes you. It must be very scary to not have good Gp or rheumatologist support here. I would say try to urgently discuss this with either a primary care physician or a rheumatologist. And be really assertive and say your pain isn’t being managed. And you don’t think you’re on the right dose.

my experience was that pred 15 mg was not enough and overtime. I increase this to 30 mg.

in the end, I was also taking painkillers on top of this so my doctor concluded that I was a steroid resistant. I’m certainly not saying that you are. Because being steroid resistant, I think is quite rare for PMR.

for you, I would get important advice from a doctor - somehow. I’m not sure how the health system works in Australia. I also think possibly you’re on too low a dose of pred.

take good care of yourself. I wish you well.

Love jess x

[Leafsong66]

Thank you so much Jess! Usually pretty good access to health care in the public system where I live but being Christmas is the issue.

I will definitely be jumping up and down to get into my excellent Gp as soon he returns from leave and then push for another visit to my Rhemie, who I had only just seen on the 17/12.

Thanks for your words of understanding.,These symptoms are truly terrible and I take my hat off to all PMR’ers.

Have a hope filled day Jess!

[PMR2021 in reply to Leafsong66]

Hoping you’re feeling better with increased dosage and I suggest vitamin D- I take 3000 IU-it does wonders for knees and bending.

[Leafsong66 in reply to PMR2021]

Yes, stiffness is now bearable but I will be happy to go up my dose of Vit D to support those knees. Hopefully by end of the next week it will be even better.

[Angelsmummy]

Thinking of you Leafsong,hoping you get relief soonxxx💐😜

[Leafsong66]

Thanks so much. The 15 mg is starting to help the stiffness and pain but I’m back to being like a zombie if I do more than half an hours activity. Will need to see Rheumie asap.