Steroid withdrawal symptoms

[IdasMum]

I thought I'd find out what others feel when tapering their dose and consider steroid withdrawal.

I am doing well as I dead slow taper from 9mg to 8mg. Sunday 8mg and then Tuesday 8mg felt scarily close together. It normally takes a day for me to feel the effects.

Today i have low grade aches around my neck, very low grade (detox) headache but otherwise my energy levels are not diminished.

I had a blood test this morning, so will see the results on Friday.....my CRP has been reasonably down last 2 times which is why my Dr is saying, "She is gone" when referring to PMR which is obviously feminine in French.

How do my symptoms compare to yours?

Tempted to share another photo of Thea but have plumped for this one

[DorsetLady PMRGCAuk volunteer]

If you are taking the lower dose on consecutive days, then I guess you are part way through your taper. The idea of the slow taper is to avoid the withdrawal symptom.

Might be an idea to go back a few days on your taper, so the 9mg days outweigh the 8mg days - does that make sense? And see what happens. If better, then continue.

Also can you cut tablets, or have a mix of 1mg & 2,5mg so you can reduce by 0.5mg a time - not 1mg.

My withdrawal symptoms were just a general feeling of “everything’s too much hassle” - very similar to post menopausal. But we are all different.

Have you tried paracetamol to see if that helps?

[IdasMum in reply to DorsetLady]

Yes, Paracetamol helps and a snooze.

I am reluctant to go backwards as I feel I am making good progress.

The lower dose gets closer to the higher as the weeks go by, so this is week 3.

I feel better now, as today was a higher dose day and I guess some of that is now kicking in.

[Rose54]

Hi

Maybe try to reduce by .5

I normally get a fuzzy head for a few days and just general dont feel right, any pains respond to Paracetamol .So I think its steroid withdraw.

After a week I am back to normal if not I know I have gone too low

[PMRpro Ambassador]

Why not stick at this level for a few more cycles or go back up one day on the interval?

The reason I made it such a long gap at first was because it took me 3 challenges with the lower dose to not feel "different" on the low dose days and I needed lots of time feeling better! Then I got to a stage where I felt "different" on the higher dose days.

[IdasMum]

I'll stay at this level for a 2/3 weeks and see how it goes.

I sort of expect to feel different and would love not to.

[SheffieldJane]

Well I thought steroid withdrawal lasted a few days easing off unlike a threatened flare which gets increasingly worse. Then my new ( to me) Endocrinologist said that steroid withdrawal could last for several months Prednisalone withdrawal that is . So I’m stuck now. I’ve had PMR, treated with Pred for 3 years, I feel rotten on 5 mgs but a bit nervous about increasing, as I would have done before I met him. So I am no help to you at all. I would love to see a picture of little Thea, I bet she’s grown! The flower pot is very nice though.

[IdasMum in reply to SheffieldJane]

Oh, that's confusing and horrible that you feel rotten

You have helped, as you've said that you thought withdrawal lasted a few days.

I am lucky, I have an off day and then am back to normal.

I am going to stay at my current regime now for a couple of weeks and then add in another drop.

Next post I'll add a photo of Thea

[PMRpro Ambassador in reply to SheffieldJane]

There's a big difference between the symptoms we get on the way down due to dropping the dose in too big a step which generally takes up to a couple of weeks to get used to the new dose and the effects of reducing the dose below the point at which adrenal function must return where your body feels the effects of insufficient corticosteroid. An endocrinologist is talking about the second sort. It's a common problem in medicine - doctors and patients meaning different things by the same set of words.

[SheffieldJane in reply to PMRpro]

Thanks. We were talking about pain and stiffness though ( Endo+me) so to me it is fairly indistinguishable. In his view the PMR is gone. I don’t see how I will know unless his advice precipitated a flare.

[PMRpro Ambassador in reply to SheffieldJane]

Quite - but yes, stiffness and pain can be adrenal related and yes, at the low doses, how can you tell!!

[bunnymom in reply to SheffieldJane]

How in the world does one ever know? I am two days past a .5 drop of one time. Last night I was irritable and this morning a headache. I'm thinking adrenals? Going from 7,5 to 7. Suspect I will feel better as day goes on.

[SheffieldJane in reply to bunnymom]

Do you have fluey feelings and feeling totally exhausted at points in the day? It honestly feels unbearable at times and sleep is the only remedy. Thank goodness there is a remedy. I feel like I’ve lost the plot. I’ve had a fairly, good smooth PMR journey up to now.

[IdasMum in reply to SheffieldJane]

On a personal note, if it felt unbearable I'd not be tapering.

It is manageable for me and the background headache and the fatigue are shot (ish) lived. It hasn't felt unbearable this time.

[bunnymom in reply to SheffieldJane]

I don't feel fluey or exhausted. Mild headache, not motivated. A bit of dark thinking... Old sad memories from nowhere. This is one strange ride. All this came on from 1 new dose in a week. Keep expecting it all to settle. Last night awake every two hours, night before slept well. Figure it's my poor body trying to adjust. Body temp goes up and down while I'm sleeping. This part is easier for me than the beginning. I had terrible brain fog.. Not gone but better. Hope your travels go smoothly. ❤️

[PMRpro Ambassador in reply to bunnymom]

All that would suggest to me I was on the verge of a flare...

[bunnymom in reply to PMRpro]

Oh I hope not. Time will tell.

[SheffieldJane in reply to bunnymom]

That all rings bells bunnymom. Especially the night vigils etc. An unexamined life is a life not lived - Socrates.

Thank you. This is just a wobble,

, I guess.

Wishing you well! X

[Valnvaughan]

Me: PMR since 2015, started on 15mg Pred tapering with a few flares, now at 3 or 2.5 depending on day during DSNS reduction.

Recently, if I have a busy day I get some discomfort or low level ache. I take paracetamol and it seems to go away. So, I think it’s my weak muscles complaining. Also, if I know I am going to make higher than normal demands on my body ( eg. Day out in London) then I take extra Pred, say 5mg that day and the day after, then drop back down. My GP seems happy for me to manage my own Pred intake at these lower levels. I always stick at the higher Pred dose during a DSNS taper if I feel symptoms are returning.

I’m just glad to get back to some exercise, after PMR and 2 hip replacements. Doing Ballroom dancing, Tai Chi and swimming / water exercises as well as my post op physio exercises, and walking. I always tell instructor about my health issues and warn I may sit it out at times.

Valerie