Med side effects

[AnotherAnne]

Hi all. Newly diagnosed with SLE and just started prednisolone & plaquenil. Is it normal to feel like I’m jumping out of my skin? Will this improve? (PLEASE say yes)

[Paul_Howard Partner LUPUS UK]

Hi AnotherAnne ,

Welcome to the LUPUS UK Community Forum. I hope that you find this place helpful for information and support.

May I ask what dose of prednisolone you have been started on? These can cause many side effects including changes in mood, restlessness etc. Over time your doctor will help you gradually decrease the dose and hopefully come off them and you should find the side effects will improve as this happens. You can learn more about this treatment at arthritisresearchuk.org/~/m...

If you are struggling with the side effects, do let your doctor know.

If you need any more information about lupus and LUPUS UK we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

[Barnclown]

hello anotheranne: in my experience this improved...but that’s my case...what dose pred are you on?

If i were new to pred, i’d be checking in with my GP about this feeling, just to be safe

Here’s my experience, for what it’s worth:

the trial & error involved in figuring out the meds i needed to stablise began just with daily hydroxy, which immediately damped down the joint pain & fatigue just enough to impress. I still felt v unwell generally, but not as unwell as i had been feeling for many years.

Anyway, before long rheumatology realised i needed prednisolone too, and, as a trial, i was prescribed a relatively slow 4 week 10mg pred taper cause my chronic neuro cerebral stuff was flaring (the taper was 10mg for 1 wk, then 7.5mg for a week...dropping 2.5mg every week until off pred).

During the first week of that taper,10mg pred did help to damp down the neuro cerebral flare a lot - but, like you, i had the feeling i was “jumping out of my skin”. With each following week’s 2.5mg dose reduction, i felt less jumpy. And, after 4 weeks when i was off pred again i had no lingering jumpiness

As the years have passed, i’ve ended up on 10mg pred as my standard daily therapeutic treatment plan dose...and i don’t have any of that feeling i’m jumping out of my skin - but i’m guessing i will get that jumpy feeling on a pred dose higher than 10mg, until my body becomes accustomed to the higher dose...some day i’m bound to find out

Hope something in there is useful...am sure you’ll get some good replies

Hope you’ll let us know how you get on

🍀🍀🍀🍀 Coco

PS when i clicked to post my reply, i found paul had meanwhile posted his reply, which of course is Spot On!

[AgedCrone]

Talk to you doctor...Pred can have some weird side effects....you need professional advice.

[riannabri]

I just saw this post, I had exactly the same on plaquenil and it got so bad I had to stop it, would be nice to know your outcome and if you were able to continue on it?