Tapering Prednisolone and anxiety.

[Biker52]

Good morning,

I have been taking varying amounts of Prednisolone since last July…20mg at the beginning when experiencing the start of RA.

I started on Hydroxychloroquine in November and Methotrexate in January after having flares in those months which coincided with getting Prednisolone to around 3mg a day.

Following the advice of the rheumatologist I have been reducing very slowly….and things seemed to be going ok. I last saw her on 4/4 and I was on on 2.5 mg and I continued to reduce slowly until I stopped completely 3 days ago.

However, I am wondering whether how I am feeling is due to stopping the Prednisolone….anxious, loss of appetite, dodgy tummy, more aches than usual.

Has anyone else experienced this? Any advice will be welcomed.

Thank you.

[mads1]

i think so Biker 52, though you are on a very low dose. can you ring the gp maybe you have to taper more slowly.

[Biker52 in reply to mads1]

Thank you for your response.

I have a Rheumatologist appointment on Thursday so will be able to ask then

I am relatively new to all of this and am finding that it is all a balancing act!

This group has been so helpful and supportive. I wouldn’t cope without it!

[Runrig01]

All of the symptoms you mention are signs of low cortisol. Whilst on steroids your HPA axis switches off and your body doesn’t produce its own steroid- cortisol. The reason we taper is to try and coax the adrenals awake. You should have been warned what to look out for. You can develop adrenal insufficiency, I did. Unfortunately mine was only diagnosed after having a severe stroke as a result of an adrenal crisis, 3 weeks before my first endocrinology appointment to discuss concerns re potential adrenal issues. I would contact your GP inform him and request an 8-9am blood test for cortisol. It does sound like you e tapered too fast. My rheumatologist insisted I only reduce a max of 0.5mg a month once I got below 7mg. Here’s a chart that shows you some of the low cortisol symptoms. Please discuss urgently with someone. Cortisol is an essential hormone you can’t live without, mine was undetectable, when it should have been around 450. I should add I was on 4mg of pred when I had my stroke due to an adrenal crisis.

Low cortisol symptoms

[Kati66 in reply to Runrig01]

Oh that’s awful that it got to the stage where you had a stroke 😞😞😞. I didn’t realise all those symptoms were related to the issues around Cortisol. I’m currently tapering off 5mg, which I’ve been on since December last year (was only diagnosed then). I’m now down to 3mg, as of Monday. I’m experiencing some of these symptoms and assumed it was withdrawal. Will contact the nurse if any of these get worse. So sorry to hear you had a stroke due to this xxx

[Biker52]

I will follow your advice…thank you.

The personal experiences of people in this group are so informative and helpful but I am so sorry that your experience was so extreme.

[Spurslad]

hey, hope your good! I’ve been on Prednisolone for about a year now and initially felt it was brilliant and gave me back some quality of life! I take 12.5/15mg on alternate days and wouldn’t want to stop. I’ve been put on Methotrexate and sulfasalazine, and although blood scores are coming down do not feel they have assisted in any way. Felt the prednisolone was better although long term don’t think it’s good! When I see my consultant next will be asking for alternatives to the methotrexate and sulfasalazine and hopefully I get a better quality of life. Stick with the prednisolone in my opinion feel it’s the best option at this stage. Good luck 🤞🏻

[Biker52 in reply to Spurslad]

Thank you for replying.

It seems to be all about trial and error and finding the right balance of meds!