Guidance please on pred reduction

[Patricia10]

I was diagnosed with PMR last March and put on 15mg pred. which I reduced very slowly, stayed on 10mg for 2 months, then have been reducing by a half every month. Rather than halving tablets, I alternate the daily dose, so the moment I am taking 8mg and just starting to reduce by half a mg by taking 8mg one day, 7mg the next, 8mg the next. I have also needed to split the dose by taking pred at night before bed, then the following morning. So at the present I take 6mg in the morning and 2 at night.

My questions are: am I reducing too quickly? What is the usual rate of reduction? How do I reduce the split dose effectively? Any help please.

[DorsetLady PMRGCAuk volunteer]

Hi Patricia,

As you split your dose, does that mean you have pain in the morning? That in itself is not unusual, most people do, but it really depends how bad it is.

I tried splitting my dose, but it didn't really work for me. I think most people go for one third at night, two thirds in morning. For the last 3 months or so I have taken my dose about 4am, which means setting alarm, but it means I don't have those niggly pains on waking and seems to work for me. Presently reducing from 2mg to 1.5mg.

The only way to know if you are reducing at the right rate is, are you relative pain free most of the time, with no symptoms. If so, then you're okay. Although you must remember the lower you get, the more likely you will get the "normal" aches and pains of life, and you may feel a bit fatigued if your adrenal glands are slow in kicking back in.

Once I got to singles figures, I reduced by 0.5mg a time, on a slow plan which took about 5 weeks to get from higher to lower dose. If I feel okay then I go on to next drop, if not so good then I stay on for a couple of weeks. Your body will tell you if you drop too quickly.

[Patricia10 in reply to DorsetLady]

Thank you DorsetLady. Do you cut your pills in half? I always seem to make a mess of mine even though I have a pill cutter. I wanted to do the slow slow stop method but that meant cutting pills all the time. Do you think the alternate days method is as good? is 7 one day 8 the next for say a month? I have had no pains or reaction to my reductions up to now but I am getting nervous and don't want a flare.

[Sheilamac in reply to Patricia10]

If you are in the uk, you can get 2.5mg tablets. That plus 5's and 1's mean no pill cutting 😄

[PMRpro Ambassador in reply to Patricia10]

The "dead slow and nearly stop" method DOESN'T require cutting tablets, that is the whole point of it, you can reduce 1mg at a time, spreading it over a period so it isn't straight from every day one dose to every day at the lower dose. Some people even slow it down even further to use it with 2.5mg enteric coated which must not be cut and e/c don't come as 1mg pills. Ordinary pred comes in 1mg tablets.

As Sheilamac says, it is also possible to get 2.5mg ordinary pred tablets and using 5, 2.5 and 1mg tablets you can create any dose you like. If you are using 2.5mg tablets and practise cutting you could easily reduce 1/4mg at a time (half a 2.5 is 1 1/4mg)

healthunlocked.com/pmrgcauk...

[DorsetLady PMRGCAuk volunteer in reply to Patricia10]

Hi again Patricia,

Sorry didn't get back earlier, been for blood test followed by shopping! What exciting lives we lead.

I find using a pill cutter okay, just get the tablet tight into the "v" shape and press down firmly but slowly. Although as others have said there are ways round it. As I said, I use my own slow method, but I still only go by 0.5mg. I probably would be okay with a 1mg drop, but I'm just being ultra cautious. I just don't want to take any chances - long story!

You just have to do what best for you, and as we are all different, what's good for one person doesn't necessarily mean it's good for all.

I can understand you don't want a flare, but if you go slowly you won't. People usually only have a flare (not always because other things can cause one) because they kept reducing relentlessly without making sure each reduction was okay.

As I said, listen to your body - if you feel things aren't right then don't reduce, stay where you are until you're okay, then try carry on. PMR is not like some illnesses - take a set course of tablets and you'll be cured - you have to learn to live with it, and control it, not let it control you. Take care.

[PMRpro Ambassador]

DL has said it all - you can reduce at any speed as long as you don't have problems and everyone is different.

What time do you take your dose in the morning when you take just a single dose? Many people wake early, take the dose then and settle down for another couple of hours to allow the pred to work - which avoids the need to split the dose and concentrates the effect over the day, not "wasting" some overnight. Unless of course the pain is waking you at night.

[Patricia10]

At present I take 2mg at 10 or 11pm before I retire, the following morning I take 6mg after breakfast, about 8am. I am thinking of reducing the evening dose by 1mg on alternate nights therefore reducing my dose to 7 and a half. How long do you think I should do this before taking 7mg each day and how long should I stay on 7 before reducing, is using this method 6 one day 7 the next. Thankyou

[PMRpro Ambassador in reply to Patricia10]

You need to rest at each dose for at least 3 or 4 weeks before going down again - it isn't just the PMR not coming back, it is also returning adrenal function now and some doctors like to keep patients at somewhere around the 5mg level for several months before reducing any further.

[Patricia10]

Thank you Sheilamac. That is useful. However I Am trying to wean myself off the evening dose which is 2 at the moment but cutting it down to one. It has really worked for me. I was really bad in the beginning with PMR and it was this evening dose that gave me my life back.

[DorsetLady PMRGCAuk volunteer]

Patricia

Have answered a second time, but replied to PMRPro's post by mistake ! Urg...must need lunch?! DL

[fab5]

I was told do not wean yourself off without Dr approval. I am currently on 5 mg per day. My Dr will not wean myself off until I have been on atleast 2 yrs. I am concerned of weight gain and what this drug is doing inside me. I hope everyone is also seeing an optamologist to check for GIA. Since taking the predisone I have blood tests every 4 months along with visiting by Optamologist and of course seeing my Rheumatologist. Feeling great. Be patient.

[Patricia10 in reply to fab5]

Thank you all so much for taking the time to reply. I too am concerned about the pred effects. I am osteopenic, pre diabetic, my cholesterol is 8.3' and I have put on a stone in spite of healthy eating!! Can't wait to be off these darn pills! However I shall heed all your excellent advice.

[polkadotcom]

I am a long way into this journey, but my consultants/doctors have always allowed me to self-manage my doses and/or reductions as many other patients are.

PMR is not a consistent condition, it fluctuates as and when it will and only I know how I am feeling on any given day even now. I also have multiple other conditions so have to steer down a very narrow road at times.

It does mean listening to your body and being firm with yourself - if you are feeling under par it will do no good just reducing relentlessly to zero.

Not that I am at zero, am on a maintenance dose of 5mg for life.