Hello.
I am after some advice please.
I have had polymyalgia for about 3 years and now after several flares managed to reach 5mg preds which I have never managed to do before.
Can anyone else please offer me the best advice on how to reduce further and eventually cease taking preds altogether.
Thank you so much
Hi Julian. I have tried to get below 5mg several times and got well and truly stuck - each time flaring. I always wanted to do "as I was told" by my rheumy - the results were always predictable. I tried too quickly! The only way to do it is to take it very very slowly - DSNS or even slower!!
I have, after 5 years, now actually reduced to 4mg and I will stay at this dose for several weeks (ignore your rheumy, it's your illness and your body).
Good luck.
SLOWLY!
The original of this reduction scheme was developed to reduce form 5mg
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
But you will only get off pred altogether once the PMR is fuly in remission - until then, you will need some. There are patients who have discovered that 1mg was the difference between not having symptoms and a flare, stopping their pred and the symptoms returning within weeks or months.
So while reducing slowly - don't be in denial about returning symptoms.
I am at 4 now, the lowest ever, and am to reduce by 1 each month. I'll let you know. Q for you: What happened on prior attempts to get below 5? Do very slight symptoms return, or strong ones?
A basic rule of thumb from top rheumatologists in the USA some years ago was that no reduction in a taper should be more than 10% of the current dose to reduce the risks of steroid withdrawal rheumatism - which is so similar to PMR that you cannot tell whether it is withdrawal or a flare other than withdrawal starts immediately you reduce the dose and then improves over time, a flare make take a few days or even weeks to appear and then steadily gets worse. At 5mg 1mg is 20%.
At this stage though you have also to give your adrenal glands time to take up their task of producing cortisol which has to start at about 7mg and below. Increasing fatigue is a sign this isn't happening as fast as youa re reducing.
I'm currently reducing below 5. So far it's taken about the same amount of time as getting from 15 to 5 - about 10 months. At 2.5 now and occasionally I try for 2. The good thing about this is that most of the pred side effects are gone and I am finally beginning to feel a return of energy. A salutary lesson last week: my hubby thoughtfully shared a stomach bug with me, so did not get regular dose of pred for over a day (didn't absorb Thursdays, and took Friday's late in day). Discovered that the main effect was a dull, insistent headache and extreme fatigue, both of which vanished completely about four hours after finally getting my tiny (2 mg that time) dose of pred into me. So, at these low levels fatigue and pred withdrawal have become as significant an issue for me as PMR pain control.
take it very slowly... and monitor how you feel, any change in pain or fatigue. I can tell you that first time I was at 5mg ( November 2016) I felt like I did not have PMR...I tried to reduce to 4.5 and after 3 weeks of DSNS I had to stop, go back to 6mg for couple of days and then back to 5. Sad thing is that although I was back at 5, I still had some symptoms ( stiffness, some pain and fatigue). In short, going back to 5mg did not get me back to symptom free condition as I had before. So I stayed at 5 ... Last week I had appointment with rheumatologist. My CRP was just outside of normal (0.4). After listening to me, he said to stay at 5mg until next appointment, which is in 3 months.
Just like other people said, this is low dose and most of side effects are gone. Listen to your body and respect PMR time schedule. She is in a driving seat 
A bit off topic but I'm wondering if predisone pills can be cut in 4 equal pieces ? The smallest dose available here in Spain is 2.5mg. No wonder they seem oblivious to any slow tapering method ! How can a rheumi here prescribe tapering by no more than 10% if there are no 1mg. pills.?
I'm going to put the new rheumi I'm seeing on Wednesday to the test with this question.. 😛
There are people who do cut tablets into 4 pieces and really it doesn't matter if it is accurate - you are trying to reduce anyway and it balancesout eventually.
Have you asked a pharmacist if smaller denominations can be ordered? Doctors won't know. But you would think you could get smaller doses for children It is also possible to get liquid versions - and then you can take any dose you like.
Thank you Eileen, I will ask the pharmacy, and its good to know the doses don't need to be precise. I don't need it yet but I'd like to be prepared as I've started tapering more quicky, hopefully till I reach 10 and from there take it slowly.
I've had GCA for seven years with four flares. With three of the flares I've been off pred for months before it came back again. With the danger of blindness I've had to go back to 60 (once 80) mg of pred. Now I'm down to 5mg pred again but I'm also taking .8 MTX injectable and Actemra once a week injectable. I'm still very very fatigued, sleeping all the time. I'm sure some of it is from depression although I take something for that. I've taken off 20lbs of the 60 lbs (10 left over from the last flare) I've put on. I'm afraid to do anything now. I don't think I could emotionally handle another flare. Any suggestions?
How are you doing with the Actemra? How long have you been taking it?
I've just finished the first 3 months and had miraculous results. CRP is now ZERO!.Still taking MTX too. I am on 4.5mg pred and feeling better and more energetic than I have for two years (since developing PMR).
I am heartened by your weight loss - I have a lot to lose too.
I have been off of pred for 9 months after 2.5 years with GCA. You can read my recommendations about the reduction method I used. I will summarize what I remember.
From 5 mg down I never reduced than 1/4mg a week.
I had a CRP test every 1mg reduction before going further.
If reduction "side" effects from 1/4mg drop lasted more than 4 or 5 days I waited for an extra week before dropping the next 1/4mg.
Several times I had to go back up to a previous solid mg level.
Tuesday was a very good day. My rheumatologist Told me to call if I needed any more help.
Flip,
I think I've been taking the Actemra for 9 months. I'm not having anything change. Still so sleepy. Sleeping about 14 to 16 hours out of 24! Things are complicated by my lower spine pain. Sometimes I have to take oxycodone to handle the pain. I also take two benedryl with it because I get itchy from the oxy. Fortunately I only need to do this about once a day or not at all. I had nerves burned out in my lumber facet joints a week ago. It takes two to three weeks to get results.
CRP zero! I'm so happy for you. We will have to exchange fat and thin pictures someday. Jan
oh dear, you really have it rough. So sorry.
I got myself addicted to codeine last year, so glad I got off the stuff - my brain is returning to normal again.