Just started reducing from 15mg to 12.5mg of prednisilone.

[Joneskye]

Woke up during the night with painful legs and shoulders and I’ve been completely exhausted all day. Is this a normal response?

[DorsetLady PMRGCAuk volunteer]

Could be steroid withdrawal, or maybe too much of a drop…although 15-12.5mg is a “recognised” taper, it is not always achievable- see comments in guidelines -

* However, there is no consistent evidence for an ideal steroid regimen suitable for all patients.

Therefore, the approach to treatment must be flexible and tailored to the individual as there is heterogeneity in disease course.

Some benefit from a more gradual steroid taper.

Dose adjustment may be required for disease severity, comorbidity, side effects and patient wishes.

* note the comments -

these are just guidelines, not set in stone!

See also post on SW or flare difference/advice -

healthunlocked.com/pmrgcauk...

[Joneskye in reply to DorsetLady]

Thank you

[PMRpro Ambassador]

When you say "just starting" what do you mean? How long have you been on 15mg? And how were the symptoms before the reduction?

[Joneskye in reply to PMRpro]

I started prednisilone on the 18 th of June and reduced to 12.5 yesterday after a consult with my gp who said my blood tests were now in the normal range. Up until then my pain was pretty much non existent although fatigue was an issue all be it manageable. The leg pain last night was not pre diagnosis pain but enough to stop me sleeping

[PMRpro Ambassador in reply to Joneskye]

That speed of the pain appearing suggests it is most likely your body is objecting to the change in dose, some people are very sensitive to that, Top experts say the reduction step shouldn't be more than 10% of the current dose - you are well above that. Are you staying at the new dose every day or are you using one of our slowed tapers?

You can try staying there - what should happen is that the pain improves over the next week or so. If it gets worse it is a sign that you are now on too low a dose for the current disease activity - in which case don't try to stick it out. Go back to 15mg and try again once everything is settled.

[Joneskye in reply to PMRpro]

Thank you

[DorsetLady PMRGCAuk volunteer in reply to Joneskye]

Could be just coincidence- did you do anything yesterday that may have caused leg pains?

You could try paracetamol tonight and see if you get a better night’s sleep…

[Joneskye in reply to DorsetLady]

I did nothing different yesterday and the leg pain was very much an issue before diagnosis. I will try paracetamol tonight and see if that helps

[DorsetLady PMRGCAuk volunteer in reply to Joneskye]

If it’s steroid withdrawal it may do, so maybe give it a couple of days….or nights as the case may be…please let us know how things go.

[Joneskye in reply to DorsetLady]

Thank you I will x

[123-go]

Are you still working, Joneskye? Just a thought.

[Joneskye in reply to 123-go]

No, I have been on sick for the past 5 weeks. I have to see occupational health before they will let me back to work as I’m a care worker with NHS Highland.

[123-go in reply to Joneskye]

I see. I read your profile and thought you couldn't possibly be working in what must be a demanding job. Some people do try to struggle on and I wondered if you might be one of those. I hope you feel better soon.

[cranberryt]

I have generally found that pain in the first 3-4 days after reducing is withdrawal pain. Pain after a week means the dose has gone too low and I need to go back up for a month and try again to reduce later, and perhaps more slowly.

[Joneskye in reply to cranberryt]

Thank you

[Joneskye]

So had an appointment with my consultant today and advised to go back to 15mg had another ct scan which has shown enlarged lymph nodes around my stomach and pancreas and thickening of my stomach which could be a tumour. So he is fast tracking a endoscopy and biopsy 🙁 You go see the doc for a stubbed toe and end up with lord knows what……think that’s why I’ve avoided the doctors for years

[herdysheep]

If I were you, I would be feeling well fed up. Has the increase to15mg helped the legs? Good luck with the rest of investigations.

[Joneskye in reply to herdysheep]

Still feeling pretty sore and very achy but I was late with my meds yesterday due to traveling back from the hospital. I’ve taken an extra 2.5mg this morning so hopefully that helps. I’m sure the traveling and having my arms above my head for the ct scan really haven’t helped 😢. My gp phoned me as soon as I was home yesterday having heard from the consultant and she has been great, she’s advised that I don’t even think about returning to work until everything has been resolved and said I can contact her at any point.

[MrsNails in reply to Joneskye]

Hi Joneskye,Just a little tip, if for any reason you can’t take your Meds at the usual time ie Fasting Blood Tests etc always take them with you so you can take them as soon as you’re finished as you’ll find that’ll help plus there isn’t the danger of forgetting as you’re out of normal routine.

Let us know your results 🍀

MrsN

[Joneskye in reply to MrsNails]

I would have taken them with me but as my appointment was was 1pm I thought I had plenty of time to get my train home. Due to the issues that the ct scan discovered I ended up being there all day and unfortunately missed my train. Luckily my son lives in Inverness so I was able to spend the night with him and got the first train home in the morning 🙂. But lesson learned…..I will be taking supplies with me next time

[MrsNails in reply to Joneskye]

Life is a learning curve, it’s always good to carry a spare dose, l have a little red mesh zip up bag that l use that everyday, it has all my Meds in, except my Pred - that is in a Daily Pill Box. As l now have Angina l have a small bag with my Spray, Spare Pred, Aspirin & Paracetamol in - that lives in my handbag & l routinely check it to ensure everything is in date.

We live & learn 😉

[Joneskye in reply to MrsNails]

It sure is 🙂 think I’m going to permanently have an overnight bag ready for all future hospital trips …..it’s a few hours train journey across the country so my new motto is go prepared

[MrsNails in reply to Joneskye]

Do you have a copy of the Sick Day Rules? I’ll add you a link here, it’s very worthwhile printing & keeping in your ‘Grab Bag’

healthunlocked.com/pmrgcauk...

[Joneskye in reply to MrsNails]

I will check it out , thank you

[PMRpro Ambassador in reply to Joneskye]

I don't leave the house, even to get milk, without my 24 hour dosette box. If I am going outside the village/town I refill it and it is in my handbag. If I am away from the place all day, I take at least a days-worth of medication but more often enough for a week. And on holiday - enough for at least 3 times the length of the holiday.