I’m pleased to say, I managed to stay at 0mg Pred over Christmas and am still there. I did have stinking cold which started on Boxing Day and lasted until New Year’s Day but other than that ok. I still have muscle weakness and start physio next week. I received a call yesterday from the rheumatology dept, the consultant has suggested I have a Synacthen test once I have been on 0mg Pred for 4 months and has booked me in for this procedure. Is this routine and what does it involve?
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Liby57
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Great news Liby !So pleased the cold didn't set off a PMR flare. Sorry I don't have any advice re Synacthen test. Just wanted to wish you ongoing success with your recovery.
It probably should be routine but tends not to be. Actually - I don't quite see why he's waiting that long, you can get pretty indicative results once you are down to below 3mg. In the meantime do keep an eye out for adrenal problems if you are in a stressful situation.
Well it will - can't argue with that. But if your adrenal function ISN'T adequate you are at risk of an adrenal crisis in the meantime without knowing.
Does this still apply if you are on 0mg and feeling ok. My PMR symptoms started overnight with no warning so we live in constant fear of an adrenal crisis or PMR symptoms returning. Very scary, just when I thought I was doing well.
It may do - you may be fine for day to day function but severe stress puts you in another place. One lady was down to 2mg and felt fine - but her rheumy did a synacthen test and she had no reserve function for an emergency at all. PMR tends to appear overnight - that really isn't unusual. No point worrying - it may never happen. But if it does, don;t ignore warning signs. Calling the doctor once too many is better than one too few ...
I'm sorry you feel like that - but we feel it is better that both sides of the coin are looked at. Far better to know and deal with it if it should happen surely? There are a few people on the forum who have had adrenal problems when under stress such as being ill or in an accident. Why not post and ask for their experiences?
You people have got me worried. In my nine years of GCA with its ups and downs I have never had a synacthen test. I have asked more than once and told I look too well to need one. Can they tell by looking?
No!!! But you don't need one until you are well under 5mg - there is no point. You DO need to be aware of potential problems if you are under stress at any dose though. But the times you have been off pred - you are obviously doing OK.
It all seems related to how my OH is and he has been in and out of hospital this last year. I have stayed at 3mg through the year since a year last December. It seems to work. I would like to try and reduce but considering my circumstances I'm not sure it's sensible?
Well of course it is - your husband's condition causes you stress and stress means you need an adrenal gland response. I'm just impressed you are managing on 3mg - I couldn't have!
I hope you don't feel too down. You have so well to get to zero - a mega achievement. Despite long years of pmr, I only learnt of the possibility of adrenal issues from this forum, and would rather be forewarned. The exhilaration of getting below 5mgs is slightly tempered by wading through the adrenal stuff, but not everyone gets it. I hope you can bask in the glory of getting to zero with the awareness to watch out, rather than worry.
I had no Pred for 24 hours. The nurse put a cannula in my hand. She took blood, then put the adrenaline stimulating substance in. I felt nothing at all. She waited for 30/60 minutes and took blood again. This demonstrated how well my adrenals were capable of working. My first test failed, I had one a few weeks later on a lower dose of Pred and it was well into the normal range. I hope I have recalled it properly. Nothing to it really and as PMRPro says it should be routine at the end of steroid treatment that lasts over a few weeks.
No side effects at all. I was in for a whole day. Same procedure as SJ but had bloods taken every few hours think a total of 4 in all. It wasn’t stressful at all.
None at all, even from late Pred, and you are off it already. It’s best to know, it can be dangerous and cause Adrenal crisis, if your adrenal system is not working as it should.
Well done you ! You are in the Zero Club which is great news for you but also gives us all a boost in hope and positivity about our own journeys when we read about it. It isn't always done but should be so at least you have a doctor whom is on the ball. The time you get it can vary and it could be taking longer because of the general levels of delay in non urgent medical check ups at the moment.
My advice would be if you are at zero and pain free , keep up the good work but don't be tempted to go mad . You aren't quite " match fit " yet and it is better for your overall success and chances of staying symptom and Pred free to build up your activity and exercise again slowly over 6- 12 months , eat sensibly, and keep up your supplements. Your body has been through a lot for a long time and needs some more time to recoup , be relaxed and stress free before you are back to your fighting form.
Well done you! I'm reducing from 1mg! Been there before do taking it v v v slowly this time, and glad I stayed on hold over Christmas as my cold, started on New Year's Eve turned out to be Covid!!! Still awaiting PCR results to confirm but had 2 v positive lateral flow tests at the start. Wondering how and how long your drop from 1 to zero took. Fingers crossed you stay in club zero.
Hi well done to you. That’s good news that you are down to 1 mg The last stage of my 1 to 0mg took a couple of months. I did it really slowly i.e one day in a week at zero for 2 weeks then 2 days but not consecutive and so on until I reached zero. Fingers crossed I can stay off it but am aware I could relapse .
I've held over Christmas and Covid currently 1mg Mon,Wed,Thurs,Fri, Sat. And 0.5mg on Sun and Tues. I am going so tentatively as I've been at this for over 4 years now but last year I had 2 flares after particularly stressful occasions. I've been below 7 and mostly on 5 or less apart from the flares for over 3 years! Patience, I know. So this time slowly slowly slowly is the name of the game! Next week I'll drop 0.5 on Thursday methinks.
I managed one day at 0g when tapering from 0.5, but had to increase to 3mg for 10 days. Am now at 1mg again, debating whether to try a drop to 0.5. I'm always wary.....
Personally I’d stay at 1mg a bit longer - there really is no rush. Yes it’s nice to be at zero, but if your body isn’t ready at the moment then so be it. Next month, 2 months, 3 months it may well be ..,,and it’s always more difficult in winter,
Me too, on half a mg and had a positive covid test. I also had shingles in September and managed to stay at 1 mg. I’ve had a synacthen test , result indicated I was safe to reduce steroids to zero, which I have done , in my own time.
That’s brilliant, we’ll done. I’m curious you mentioned Synacthen test whilst taking Pred yet my consultant he wanted me in zero pred for a while before I have the test. Think all rheumatologist have different ideas about it
Hi Liby, great to hear of your successful reduction to 0mg. As others have said the test is not routinely offered and it could be that your rheumatologist likes to check it at the time specified. If there was any other reason I would have expected you to have experienced some adrenal issues by now. Don't worry too much as you managed to complete the treatment in quite a short period of time and your adrenals are likely to recover. Continue to look after yourself and have faith in your body. Good luck. Vx
Thank you so much for your positive response. I have to say the whole PMR experience from start to now has been stressful and at times quite depressing although I appreciate there are many members on the forum who have had an equally or worse time than myself with PMR. Sending best wishes to you.
Hi. The test is simple as sheffieldjane explained. I have had two, one while on pred and one while on hydrocortisone. Both times I was in a nice comfy chair and had a cup of tea brought to me. No side effects. Just a relaxing hour or two. It’s good your rhuemy is being so thorough. Well done on getting to 0. Long may it last 🤗
That’s certainly very interesting but does everyone who has PMR receive emergency hydrocortisone pills or an injection kit to have on standby. This has never been mentioned to me.
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