Hi all you knowledgeable people. I have been doing well with my fourth attempt in four years to get below 4 mgs of pred. Diagnosed with PMR in spring 2019.
I’m down to 3 and a quarter mgs of pred - best I’ve achieved to date.
However when I get up and start to walk my legs feel like rubbery jelly.
I get the odd dizzy spell which feels weird and I worry about falling.
Every now and then I also get a painful muscle spasm of the neck and shoulders for which I need to take a rest and then it goes again in about 10minutes.
Has anyone else experienced any of this reducing pred? I’m a 72 year female. Wondering if it’s something else or still PMR? Greatly appreciate any help.
Written by
Loyd
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That’s how I felt in the mornings when my adrenal glands were less than perky. I have been a morning lark all my life but for the first time ever just couldn’t rise without feeling like I had had a night on the tiles. Do your dizzy spells come on when you stand up?
That could well be your blood pressure dropping which can be caused by low adrenal function. Be careful now when you get up especially in the morning and getting up from lying. If you have been avoiding salt during higher doses of Pred, now is the time to bring it back in a bit because it also causes low sodium.
Well no - if you want to get off pred you are going to have to go through it at some point. The only thing that stimulates that is being at too low a dose for what the body really needs. it will catch up in time if you are patient. Try to avoid the situations that make you feel worse in the meantime - SnazzyD will probably tell you how she got there.
It’s a tricky business because on the one hand you need to be low in Pred for the adrenal glands and the brain to realise their time has come. But on the other you need to avoid adrenal crisis which is covered in the links DL has pointed you towards. This is avoided by avoiding stress on the body, rest and not doing too much until you start to get more good days than bad. Putting the Pred back up just to feel better undoes the good work, so you reduce really slowly. I introduced drops of 0.5mg in over anything from 6-14 weeks and became a bit of a boring recluse. It took the best part of a year to feel like real progress was being made but wasn’t all bad. Every reduction was different and it was dependent on what was going on in my life, weather or unknown factors. 4-3mg was not bad and I felt great at 3mg but after that it was rough again. We’re all different so what works for me may not work for you, so you have to listen to your body and play the long game. If you feel really ill or if just doesn’t improve on a particular dose after a few months do seek advice as you may need a test to see if there’s any action there.
I have had odd occasions when I felt that I might faint all the way down the doses. Always just before tea when my pred seems to wear down. Cured by eating and having a little rest.
Complex issue....so this may sound super basic. I'm a GCAer with three years of pred use and at the magical 4mg. Recently discharged from the hospital, I have had in-home physio. The therapist pointed out how frequently I stopped breathing and held my breath. Watch yourself...the more fatigued I got and weaker...I would focus so hard on what I was doing (including getting up from a chair) I'd hold my breath for strength. My blood pressure would drop...and my oxygen level. Now, I'm focusing on breathing and still catching myself. Just saying.... 💞
I am definitely doing that too. I have always been a bit dodgy with my breathing. Hyperventilating during public presentations. Unable to do breathing exercises when trying to meditate. Now I am very prone to holding my breath when doing sequences of physio. I am probably getting worse. I was doing it a lot this morning.
I'm assuming that your last 2 replies are directed at specific people? If you click the reply box that is immediately under their comment they will be told you have replied to them and your reply will say who it is to - as it is the replies are just stand-alone comments
I had the dizziness and the deathly fatigue. You think you are getting near zero and your adrenals decide to stop you in your tracks! I even started to faint. Luckily there were always people around. You need to really slow down the reduction and in fact stop for a while. Don't increase unless you absolutely have to. I must admit I did increase 1mg as I had become a sort of zombie.
Like Snazzy, I find tha some reductions cause more problems than others. I reduce by the minimum possible. When I start to feel dizzy or sick, I know I have gone too far, or at least need to stay at that dose for longer. BTW, sitting on an upright chair is particularly difficult when you are light-headed. It is easier to be moving round a bit from time to time or to sit on something lower, maybe even with your feet up.
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Now I know why I am feeling so Ill.
was diagnosed 2 weeks ago with PMR -GCA and put on 30mg pred, but I still have most of the symptoms , neck and shoulder pain, head pains,
Long Flare? Or something else.
Synacthen Test Results and Endocrinologist’s Advice.
I feel great. What's happened? Are my adrenals working?
