Pred withdrawal.?

[Dancingrosie]

Pred withdrawal. Woke this morning 4.45am with a buzzing feeling in my legs and arms. Got up took my 3mg pred but felt very muzzy headed and bit nauseous. It’s going off a bit now but my question is this. Can it be withdrawal symptons and should I just ride it out or should I increase pred by a couple of mg? It’s so hard to know what to do for the best.

[DorsetLady PMRGCAuk volunteer]

Hi,

Have you just reduced to 3mg - in the last day or two? How and from what dose?

There’s not much to go on from your profile and previous post other than you’ve had GCA/PMR for at least 3 years and you were on 4mg at the time of your previous post when you complained of neuralgia type pains - do you still have them?

Pred withdrawal comes immediately after reduction and usually lasts no more than 2-3days. However this can be alleviated by using a slow taper and only reducing by 0.5mg once you get to low doses.

The nausea and lightheadedness could be related to your adrenals not working as well as they should be yet.

A bit more information might help us to help you.

[Dancingrosie in reply to DorsetLady]

Thank you Dorset lady for your reply. I went to Scotland a couple of weeks ago and the day before I went I woke at 3am with pain in upper right under rib cage and had sickness and direaha and no energy whatsoever. I took med for s&d so I could get on plane and increased pred to 5mg for 2days then went back to 3mg. I was fine until last wed went to Worthing to see brother in law who has had mayor stroke which upset me then the journey home took 3and half hours and since the felt really fatigued and washed out the woke this morning as explained in my post.

[DorsetLady PMRGCAuk volunteer in reply to Dancingrosie]

Ok, that explains a lot. Your body has taken a battering both physically and mentally so I would suggest going back up to 5mg - stay on it at least a week, maybe longer.

Then when you feel better reduce on a monthly basis but only 0.5mg a time, and using a slow taper if you don’t already. If you drop straight back down to 3mg like you did last time I fear you may build up troubles again. Your brother is still going to be I’ll for some time, and if you need to make the journey again you’ll need all the help you can get. It’s difficult enough to reduce once you get below 5mg at the best of times.

Try this taper - healthunlocked.com/pmrgcauk...

Good luck.

[Dancingrosie in reply to DorsetLady]

Thank you Dorset lady and pmrpro. I will take another 2mg and stay on 5mg like you say and drop 0.5 . I have a blood form and think I will have test and see if that shows anything. I see my consultant in August not that he tells me anything I learn more from you good lady’s on this forum. Thank you🌹

[Dancingrosie in reply to DorsetLady]

Hi Dorsetlady. Just an update on how I got on with increasing to 5mg after your reply. I got worse as time went on . Last wed dizzy and sickness feeling fatigue as I explained in my other post.by Friday I was so bad went to see GP. He did urine dip stick test and there was blood and protein showing but not visible to the eye so he sent it off to see if uti. Then he said could be a flare stay on 5mg and gave me Stemetil and antibiotics and had a blood test done. Saturday I was on loo all day and being sick my head was dizzy and hot flushes with high blood pressure. Last night I decided to take another 5mg pred and this morning another 10mg. Everything now is so much better. No dizzy nausea or on the loo just tired not eaten much since my last post. I will stay on 10mg for a week then go to 9/12. I stopped antibiotics and Stemetil until results back. I did mention sluggish adrenals aGP just said no and I said can I have a test which he said it’s a special one only my consultant can authorise. Thought I would give you this update and if anybody else on this forum has had adrenal problems I would be interested to hear from them. Sorry this is long winded but thanks for listening.

[DorsetLady PMRGCAuk volunteer in reply to Dancingrosie]

Hi

Glad you feel better PMR wise - antibiotics can be pretty nasty for some people / not what you need on top of everything else!

See how you go with 10mg - and then reduce slowly as you suggest. Hopefully it will be better this time around.

Shouldn’t worry too much about your Adrenals at the moment as you’ve gone up above the level they would need to work - but just monitor how you feel for your own info.

I think most of your recent problems have been related to too much stress over events and dashing about the country. Hopefully if you can get a few days (or better weeks) of less stress and more rest things will improve.

Thanks for update.

This link might help on Adrenals - but probably better when you feel strong enough to raise specific queries as a new post - your comments above won’t be seen by many.

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

The fizzing sensation you say you felt and the time you give is suggestive of you feeling the inflammatory substances being shed in the body - I get it if the dose I'm on is only just enough to manage the inflammation. I had it with PMR for the years I wasn't on pred so became very familiar with it! It disappeared immediately I started pred and only returns if I have reduced a bit too far or if I'm having a real flare of disease activity which was how I decided that was what it was!

Otherwise you are showing signs of the reality of the last couple of weeks hitting home. It is a shock when you see a fit and healthy person reduced by illness of any sort and your brother-in-law's major stroke will be doubly upsetting. I do hope he recovers.