Struggling with flare/withdrawal

[Alithia]

Would welcome your advice again.Brief recap .. been on Prednisolone since October 2022. Consultant started me on 15mg and advised to reduce by 1mg per month. Dramatic response to pred which went a long way in clinching diagnosis. Had a relapse last May/June at 4mg. Felt dreadful. Saw GP. Ended up going back up to 15mg and gradually tapering back down. Saw consultant again last September. He seemed to backtrack on his diagnosis and wants me off pred. Referred back to care of GP. Was reducing by 0.5mg steps from 8mg.

Everything was going really well until about 4 weeks ago. Had reduced to 3mg and after a couple of days suddenly woke up feeling awful. Pain & stiffness in shoulders with burning pain going down my arms. Overwhelming fatigue. Saw GP who advised increase dose. Followed the protocol for flare and upped the dose to 10mg for 12 days. Things eased off. Dropped back down to 5mg. However quickly felt rubbish with horrible fatigue/slight nausea/achy shoulders/night sweats. Wondering whether it could all be due to steroid withdrawal. It's difficult to tell. Anyway stayed on 5mg for 10 days but symptoms have become gradually worse with hips, thighs and knees joining in albeit not severe. So I'm leaning towards a flare? I really don't know as constant fatigue and nausea makes me think withdrawal. Plus there is the doubt over diagnosis which makes me very confused. Reluctantly I increased the pred to 7.5mg yesterday as I can't function like this.

I don't understand why I'm feeling so bad at this level of pred when I was fine before. I was fine at 4mg so I thought going back to 5mg and sticking there would be ok. Had bloods 2 days ago. All fine. My inflammatory markers have never been raised except at the very beginning before pred and then only slightly.

What do you think? Would welcome any feedback. How long should I stick at this dose and if no improvement what should I do next? Apologies for the length of this post.

[DorsetLady PMRGCAuk volunteer]

Certainly sounds like a combination of adrenals struggling - fatigue, nausea etc and your PMR flaring- and all the upping and downing of doses would not have helped. Although you felt fine at that dose before, your body [like you] doesn’t know what’s happening at the moment and can’t cope. Very common unfortunately.

Your consultant sounds as if he’s in the ‘PMR only lasts 2 years’ camp - and whilst it may for some, it’s not applicable to all. So now he’s in a quandary as to what it is… but that doesn’t help you. And probably neither does the inflammation markers…but as we know they aren’t the be all and end all some doctors think they are.

Does sound as if your GP might be a bit more sensible… so perhaps you need to speak them again, and say you need to get some quality of life.

But do think you need to stay at 7.5mg for at least a month and let everything calm down a bit- PMR and adrenals.

[Alithia in reply to DorsetLady]

Many thanks. Can't say I've been terribly impressed by the consultant either. Fortunately the GP practice is pretty good. As you advise, I shall stick at this dose and hopefully things will settle down. Then a very slow taper.

Happy Mother's Day

[PMRpro Ambassador]

I think you do have to keep at the back of your mind that this could be a proper flare due to increased disease activity and possibly even GCA or LVV raising their flags above the parapet. I hope not but feeling really unwell and nausea would be not untypical of that. Heaven knows what the rheumy is thinking - as I'm sure you know from the forum, PMR doesn;t last 2 years and then the switch is turned off! And you aren't heading relentlessly to zero - you are looking for the lowest effective dose which WAS IRO 4mg but something has rattled the autoimmune system's cage - and that could mean a lot of things.

[Alithia in reply to PMRpro]

Many thanks for your response. We'll see how it goes.

[piglette]

Lucky you have a good GP who has counteracted the consultant!

[Alithia in reply to piglette]

Indeed! It's all very well telling patients to come off the prednisolone (after they initiated it) ... If only it were that easy!

[piglette in reply to Alithia]

It is like giving a kid sweets and then snatching them back off them!!