I am using the slow method.I started with 20 mg per day last April and am at 9mg to 8 mg this month.When should you start looking at doing a 1/2 mg instead of the 1 mg decrease?
So far this is working and my Doctor is working with me.
Thank all of you for all of your support!
If 1mg works - that's good. If it feels too much, try 0.5mg. No fixed rules - everyone is different!
Hi,
Good to hear things are going smoothly, and that your doctor agrees with your reduction plan.
The reductions are up to you really, you may find that using the slow method you are okay to stick with 1mg, but many people do find once they get below the 7.5mg level ( the level of cortisol that our body normally produces) it can become a bit more difficult. So to that end it might be wise to start on your next reduction. The consensus of opinion seems to be that whilst you are waiting for your adrenal glands to start working again, the slower the reduction the better.
If you haven’t seen this it might help you make up your mind -
healthunlocked.com/pmrgcauk...
Good luck whichever way you go!
Thanks,will discuss it with my Doctor
Good, he sounds a sensible one!
My question is, how do you know when your adrenals have started working? Are there any particular signs or signals. I’m currently tapering from 6.5-6mls and my main problems seem to be fatigue and calf muscle pain with the odd twinge elsewhere.
I think for most people the fatigue is the most noticeable thing. Once that goes away and you don’t get any of the other symptoms associated with adrenal insufficiency - lightheadedness, nausea etc you can pretty much assume they are working. But they haven’t been for a long time so like all things they need a bit a nudging.
If you really feel worried about things you can request a Test to check if they are CAPABLE of working. ACTH or Synacthen test. Speak to GP or Rheumy.
Thanks for that. I’ll make an appointment with my GP. Need to talk to him about the leg issue anyway.
Is the calf pain when you walk? And goes away when you stop?
The fatigue is probably your body catching up.
Yes, exactly that. As soon as I stop walking the clenching pain goes off.
You need to tell your GP about it and ask to be referred urgently to the vascular surgeon/unit for assessment for peripheral vascular disease. PMR and GCA do lead to damage to the arteries and that can then lead to narrowing - and poor blood flow. The pain you are experiencing is called claudication.
Thank you for that. I have spoken to my GP about it in the past and he suggested stretching exercises. Needless to say that doesn’t work. I do need to go back and have another discussion because it isn’t going away.
What you are describing is absolutely typical of claudication which can be due to peripheral vascular disease - and all the stretching in the world won't make a difference. If he won't listen - try a different doctor.
Ok. I’ll get a bit more confrontational!!
The advice is no more than 10% of your dose. To be on the safe side I would advocate 0.5 drops from now on and wait until your symptoms have settled before your next drop ( about a month in my case). Unless you are astonishingly lucky. It has taken me over 2 years to get to 7 mgs. The danger of course is a flare that takes you right back to the beginning. Statistically the disease lasts for 2 years plus. Good luck!
Thanks,I will discuss it with my Doctor
I used the dead slow nearly stop method from 9 mg. When I got to 7 mg I tweaked the dead slow method slightly. I would drop by .5 mg for the first half of the taper, then in the middle, when the new dose days become more than the old dose days, I would drop a further .5 mg. This way I never dropped by more than .5 mg at a time. In the second half of the taper my old dose became the new dose I'd been using (so instead of 7 it would be 6.5) and my new dose would become 6, instead of 6.5. I was able to do this until about 4 mg, I think. I started only dropping by .5 mg per taper after that. So, just my way of continuing a 1 mg taper down to a pretty low level without triggering a lot of pred withdrawal. I always made sure I felt as good at the end of a taper as I had at the beginning, sometimes I felt better!
I started at 20 last April, and just dropped from 9 to 8 this weekend. I stayed at 9 for six weeks as felt ‘wobbly’, but no SW pains this drop (!) just watching and waiting to see what the next week brings.
I am at about the same place as you and we started at the same dosage.I also am watching what happens next.
Baileyw06, which slow method are you using? I've been using the 26 or 38 DSNS method that we can print out. This is the web application I use. healthunlocked.com/api/redi...
I use the 4 week that goes down 1 mg per month.
I don’t know the name of it . The 1st week you use the new dose on Sunday and Thursday an Than it changes each week.
Hope that helps.
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