Hydrocortisone

[York54]

I have had PMR for 5 years , had a few flares but finally managed to reach 3 mg and was feeling fine. Last week I managed to pull a muscle around my rib area , weeding in the garden. It has been extremely painful ,disturbing my sleep. On top of this we have had a family funeral, so lots of stress. My Rheum’s had sent me for 2 cortisol tests previously ( thought I was having synacthan test, but no). Still low at 130 , told it needs to be at 140 at least. However, he wants me to try hydrocortisone 10 mg morning and 5 mg afternoon. A few days ago I had a funny turn , woke up and felt very sick, clammy and dizzy so I took 6 mg of pred, lay in bed and after a few hours felt better. I rang rheumatology , a junior doctor I spoke to told me they still want me to try the hydrocortisone and had it couriered out to me, he had spoken to my Rheumy. I explained that I felt very stressed and unwell. So it arrived yesterday and I have to start it today, it has instructions on it to double the dose to 20mg and 10 mg if I feel sick. I’m so anxious about this, has anyone else been changed from pred to hydrocortisone? If I felt myself I would be happy to try . I have no PMR symptoms, just nausea , dizziness and whooshing feeling in my head. Not looking forward to today. Any suggestions most gratefully received. I still have this blinking pulled muscle too !! What a way to begin a bank holiday weekend ☹️☹️☹️

[PMRpro Ambassador]

The idea of the hydrocortisone is to replace the lack of cortisol from the adrenals - and it sounds as if you need it. It may also manage any residual PMR inflammation but you have to find that out for yourself. The idea of switching to HC at this stage is that the HC is out of the body faster than the pred and so the trigger effect on adrenal function is greater.The 2x daily dosing also replicates normal function better. Quite a few rheumies do actually do this but they aren't that common.

Look at the side bar at the Pinned Posts and read the Sick Day Rules post which explains the background. There are a couple of people on the forum who use/have used HC to manage their PMR symptoms because they don't tolerate pred.

If you have another funny turn it might be a good idea to call 999 - it could be the onset of an adrenal crisis and it needs urgent medical attention. Paramedics are well trained in recognising the signs where applicable and that is why we should carry a steriod card to inform healthcare professionals of the possibility. It isn;t reserved for patients on a low dose - in an emergency even a higher dose may be inadequate. I'm surprised your rheumy hasn't seen about a referral to an endocrinologist - because they are the experts on adrenal function. and they may consider you need a rescue pack of hydrocortisone to keep at home in case it is needed.

[York54 in reply to PMRpro]

Thanks for your reply PMRpro. I just feel totally confused and a bit scared if I’m honest. The fact that everything is done over the phone as they don’t seem to be doing many face to face appointments, is a nightmare. I was feeling so well until I pulled this muscle a week ago. I am a worrier so I got myself into a state about it, obviously my body couldn’t cope with the stress of that and the family loss. I’ll try the HC but be ready to make a call if I need to .

[York54 in reply to PMRpro]

I have read the bullet points down the side too, some give me the heeby jeebies being the worrier that I am 😉😉😉

[PMRpro Ambassador in reply to York54]

I know it is easy to say - do try to stop worrying! This is just a safety net - and you are absolutely right about the pulled muscle and the stress of the funeral and stuff and you probably also tried to do far more than you should have done instead of leaving it to others. Especially the weeding ...

Now sit back and put your feet up and that should help too. 999 is there for help if you feel really unwell so write out a list now of what you have, all about your pred, timeyou've been on it and current dose and rheumy's HC instructions and how you feel so IF push comes to shove it can just be handed to the paramedics and they know what is going on. It is very unlikely to happen, but better to do it and then you won't need it. Pin it on the fridge and make sure others in the house know.

Not sure what you mean about the bullet points. But it is better to know what to be concerned about than worrying unnecessarily.

[York54 in reply to PMRpro]

Thanks again. I meant the pinned points down the side lol 🤣🤣🤣

[123-go in reply to PMRpro]

Sound advice.

[Greensleeves]

Hi York , I’m sorry you’ve strained a muscle and suffered a loss , culminating in lots of stress and upset .

I don’t know anything about taking hydrocortisone but understand any changes in meds and reading the side effects can bring lots of anxious feelings.

I wouldn’t hesitate to follow PMRpro’s advice .

If anything worries you, the paramedics are wonderful.

I have only called them once for myself when I was unwell with Covid, , as you feel guilty, but they test all your vitals and their medical knowledge is fantastic.

My GP actually told me off for not ringing 999.

They’re overstretched , but they know if you need hospital treatment or not .

I hope you don’t get any side effects. I’d try and relax and lose yourself in a film on tv .

But over this bank holiday, know they’re there for you. xx

[York54 in reply to Greensleeves]

Thankyou Greensleeves it’s nice to receive comforting posts. I haven’t felt too bad , got a bit lightheaded about lunchtime and lay on sofa and rested. Headache is a bit of a bother but improves when I rest .

[Greensleeves in reply to York54]

I hope your headache goes away , resting is the finest thing for you right now as things settle.

You could take a couple of paracetamol if you’re able to, and have a doze .

I’ve noticed headaches are a bother when we’re tense .

It’s very chilly outside , so stay cosy and warm, and know help is just a phone call away if you need reassurance.

Sending you hugs xx

[Telian]

I would follow Pro’s advice. I haven’t had adrenal crisis but suffered adrenal resurgence - symptoms similar to what you describe when gojng from 5mg to 3mg pred. The symptoms were not nice and I wouldn’t hesitate to call 999 if it happened again. I wasn’t offered HC. I didn’t fully understand it and put up with it - was lucky to get through it. I’m 7 years GCA and PMR and after a flare pred was upped - I’m now heading for adrenal resurgence second time around - not cherishing that....

[Carrollee]

Hi. I was put on HC when I got down to 4mg and after a synacthen test. I got on fine with it (as a drug) but the pmr crept back so back on pred. ☹️. Down to 4mg again (1year on) and endo wants me to try HC again. I have a letter and a supply of HC in case of covid. Waiting for rhuemy to give the go ahead to change pred for HC. Complicated by cancelled appt and covid etc etc. All the best 🤗

[York54 in reply to Carrollee]

Thankyou Carrollee. I was feeling fine until I pulled the muscle in my side. 3mg Pred and no pain or tiredness. I feel the opposite at the moment on HC. Exhausted and nauseous. Perhaps I should have waited till my muscle improved before transferring. Only telephone calls at the moment with Rheumy and an Endo hasn’t been mentioned ☹️☹️☹️

[PMRpro Ambassador in reply to York54]

You wouldn't be the first to not be able to get on with HC - a couple of people I know went back to pred to manage the adrenal problem because HC just made them feel awful.

[Carrollee in reply to York54]

Sorry to hear that ☹️ I hope everything settles down soon or at least you get to the bottom of all this. 😔