Adrenal insufficiency- way forward

[Noni71]

I’ve tapered slowly using Dorset Lady’s 5 week taper and have reached 6mg/51/2mg. I’m having no recurrence of any GCA symptoms but think I’m suffering from adrenal insufficiency. I’m prone to periods of anxiety and have had a rather stressful situation with one of my adult children and a debt repayment! I’m feeling very tired, weak, nauseous, anxious and having difficulty concentrating. Life feels difficult at the moment. I really don’t want to increase the steroids as I’ll have to start all over again with tapering and I’m fairly sure I’m not having a flare. Do I just tough it out and wait until my adrenals start functioning again? How long do I wait before I ask for help? My rheumatologist nurses are very helpful. I’ve started Leflunomide a couple of months ago as Tocilizumab is now at an end and Methotrexate didn’t suit me. Thanks for any ideas, info.

[DorsetLady PMRGCAuk volunteer]

If it's adrenals, you don't really want to increase Pred... but do stay on current dose for a couple of months [even longer if necessary] and let the adrenals catch up...

... and there's really no point is asking for help - the answer is Pred!... and most doctor won't test for adrenal capability until you get below 5mg... usually nearer 3mg.

Very slow tapering, rest and patience are things that help..

healthunlocked.com/pmrgcauk...

[Noni71 in reply to DorsetLady]

Thanks for your advice and link to article. As I suspected, you just have to go with it until hopefully things start to get better!

[SnazzyD]

I agree with DL. Really if you are going through this you have to wait and that can mean feeling rubbish for a few weeks to months. In order to not have to increase your Pred to stave off an adrenal crisis you need to not push yourself as much. How much is too much? Your body tells you and that can be annoyingly very little. Some things you can control but if life starts to throw challenges at you it can be rough. Don’t go out without your Pred just in case you get an attack of the weak Wobblies and need a rescue dose. If you start to feel really ill with a feeling of being in real trouble get advice urgently.

[Noni71 in reply to SnazzyD]

Thank you. I soon feel bad if life throws a curved ball so I’ll be aware of your comments.

[piglette]

I really feel for you I was like a washed out rag. As the others say ideally you should not increase if your adrenals are complaining, although I did go up 1mg as it was getting too much for me.

[Noni71 in reply to piglette]

Thank you

[PMRpro Ambassador]

I agree with the others so won't repeat what they have said. But do make sure you always have a 10mg dose of pred with you and use it if you feel really unwell. If you feel REALLY bad - 999 and tell them potential adrenal crisis - and make sure others are aware too.

If you are expecting a tough day -a single pred boost won't undo all you have done with the taper but it may save you a panic feeling really ill.

[Noni71 in reply to PMRpro]

Thank you for your advice. I’m not expecting a tough day but who knows? We’re off to Rome at the beginning of November for four nights so hope I feel better by then!

[SnazzyD in reply to Noni71]

Hopefully it won’t be blistering hot by then!

[PMRpro Ambassador in reply to SnazzyD]

The trend seems downwards as of next weekend. Upper 20s ... At last!

[Angelsmummy in reply to PMRpro]

Bet you are pleased PMRpro??Still warm enough to warrant an ice cream eh?Good luck to noni71,I too am at6 to 5 and 1/2,have really rubbish days,then a good one.Mr Adrenal on a work to rule methinks.,😜🌼

[PMRpro Ambassador in reply to Angelsmummy]

Never too cold for a Marlu icecream!!! They are open all through November and sometimes for Christmas

[Angelsmummy in reply to PMRpro]

Ice cream at Xmas?😱Makes me shudder at the thought of it,You must have the constitution of an ox!🤣🤣🤣Are you home yet or still enjoying the “ balmy temperatures of Scotland?😉xx😜🌼💨💨💨💨💨💨

[PMRpro Ambassador in reply to Angelsmummy]

Wonderful on a Christmas pudding!!!! I have been known to sit in the sun on Christmas Day with a t-shirt on - only further up the mountain!

[Angelsmummy in reply to PMRpro]

Wow,sounds good,and also,really hope that you had more than just a tee shirt on??😱😉🤣🤣🤣🍦🍦🍦xx🤣😜😜😜😉

[PMRpro Ambassador in reply to Angelsmummy]

Well - ski trousers and boots ....

[Angelsmummy in reply to PMRpro]

That’s better,would hate to think of you getting frostbite!😱xxx😜🍦🌼

[PMRCanada]

I developed the same symptoms when I go down to 6mg. For the next two 1/2mg tapers I doubled the number of weeks of my taper (from 7-14), and stayed at the new dose 6-8 weeks before tapering again. I’m now at 5mg. The lower the slower.

I also try and avoid stress but that is not always possible. A recent stressful couple of day caused re-emergence of the awful adrenal related symptoms and an achy/stiff day. I took a brief pred burst (2 days at 6mg, 2 days at 5.5mg, then down to 5mg where I remain).

As PMRPro has mentioned, I keep a few extra doses on hand at all times just in case.

[Noni71 in reply to PMRCanada]

Thank you for your sound advice.

[Oboes22]

I’m at 6 to 5.5 for the third time and I have days where I can’t do anything. When that happens I just give in and rest. It’s what I haven’t done previously but am determined to carry on this time. Hang in there Noni71 and be strong.

[Noni71 in reply to Oboes22]

Thanks for your comments.

[Raewynne]

I was having all those things happening trying to reduce below 5mg.My Rheumatologist has diagnosed me as adrenal insufficiency and said he does not want me to reduce any further as it's too detrimental for me.Im happy about that for now.I feel that he supports me which is good.We are all different though.

[Noni71 in reply to Raewynne]

My rheumatologist said that he thinks I’ll be on 5mg for the rest of my life too!