Starting Pred - opinions on GP’s dose schedule?

[alliebc]

My GP has now decided to start the Pred and instructions are 20 mgs daily 10 morning and 10 evening for the first three days, then 15 mgs same way for the next three days, then 10 mgs for next three, then call him back again. I have read a lot on the forum about people’s starting dosages but never seen this. Isn’t research showing 12.5 start with a very slow taper? He didn’t like me questioning it!

[piglette]

Recommended start is between 12.5mg and 25mg. People normally start at 15mg or 20mg. Initially it is taken in one dose early in the morning. Then after three to four weeks if everything is OK you start tapering up to 10% at a time. Goodness knows where your GP found the system they suggested, but a lot of doctors do have some hair brained ideas. It may work for you, but I am not sure it would work for me.

[alliebc in reply to piglette]

Thanks Piglette, I am very tempted to go with starting at just 15 mgs daily and not tell him right away. Maybe taper from there 10% after three weeks. Have you heard of twice a day before? The quick reduction from 20 to10mg really surprised me and I was bold enough to ask if that was in case of GCA - wrong to question it from the change of tone of voice. I really prefer a discussion to a dictate. The drug info sheet that came from the pharmacist says to take it by 9am with food and a full glass of water. I’ve never taken steroids before, so I suppose I should keep a diary of the effects. Does everyone do this? I’m on the West Coast of Canada but really appreciate this UK forum, as I hadn’t heard of PMR before it struck.

[piglette in reply to alliebc]

I think I would try starting at 15mg too and see how it goes. Some doctors do suggest twice a day if people find that once a day they find that the pain relief wears off during the day. I feel that a bit of food with the steroids helps absorption. Something like yogurt.

I had never heard of PMR before either, a bit of a shock!!

[herdysheep in reply to alliebc]

I am a big believer in keeping a diary of dose and how you feel. Shocking how quickly we forget and timescales seem to go awry. Brain fog doesn't help either! Can make quite a difference in helping discussions with the medics.

[alliebc in reply to herdysheep]

The lift of the brain fog was probably the most reassuring thing after my first dose of Pred. I have started writing down dose/symptoms today, as per your wise counsel, thanks.

[SheffieldJane]

I started at 20 mgs and enjoyed feeling great for six weeks and then begun a slow taper of never more than 10% of my dose. This worked for me with no flares and is in keeping with the treatment guidelines. I would have suffered a lot following your GPS unusual ideas.

[alliebc in reply to SheffieldJane]

Thank you, it seemed weird to me , too, Sheffield Jane , after reading so much good advice on this forum, before my GP prescribed the Pred. Of course this was all relayed to me in a pre-booked 10 minute telephone call, not a visit. Covid has a lot to answer for!

[DorsetLady PMRGCAuk volunteer]

Hi,

Slightly unusual protocol for PMR, guess your doctor is more used to prescribing Pred on a short-term for other illnesses. ...although have seen similar quoted on here before.

Normal procedure is take Pred as one dose in the morning.and stay at that dose (whatever it may be as already mentioned) for 4-6 weeks.

All I can say is, not sure how things will go.....9 days may or may not be enough to get the accumulated inflammation under control....and it will certainly be interesting to hear his plans after then.

Good luck.

[alliebc in reply to DorsetLady]

I think I will do it the way suggested by the big time experts at the International conference referenced by PMRPro and you all. I started last night with dinner, 10mg, after finally getting the prescription. I took 10 this morning as he prescribed, but only 5 tonight. I read the rationale for one dose a day, so tomorrow morning I will take the 15mgs all together and hope that my body adjusts to the slight change in time schedule. It hasn’t really had time to settle yet. So after that I’ll carry on at daily 15mg dose. I will tell him I was not willing to taper to 10 so quickly when I talk with him next week. Bolshie old lady, hehe! BTW it felt amazing to get out of bed in the night and realize I was not painful and stiff. Can’t believe how quickly it worked.

[DorsetLady PMRGCAuk volunteer in reply to alliebc]

Plenty of Bolshie old ladies on here I can assure you! Count myself proud to be one 🙈Good news about the improvement, and talk to doctor sensibly, but determinedly... you have the evidence if needed!

Take care.

[PMRpro Ambassador]

Offer him these to study:

ard.bmj.com/content/74/10/1799

Specifically Box 1 and Specific Recommendations. These are the INTERNATIONAL recommendations for managing PMR and come from the worlds top experts (doesn't always make them right but they do know more than your GP!)

rcpe.ac.uk/journal/issue/jo...

is a practical application of those principles and probably contributed to the drawing up of the 2015 Recommendations. It is from a currently active consultant rheumatologist in the UK who does research in the field.

I haven't seen anything like he is proposing anywhere in the medical literature.

The recommended dosing is 1x daily, the whole dose in the morning, the initial tapering to 10mg should take 4-8 weeks - DEPENDING on the patient, many can't get to 10mg so quickly and that must be taken into consideratuon.

But getting from 20 to 10 in 8 DAYS - nowhere in the world ... You MIGHT be very very lucky, but somehow I doubt it ...

[alliebc in reply to PMRpro]

Thank you so much PMRPro. See my reply to DL above. I’m going with the experts, not my kindly, but busy GP. I’ll hold on at 15mgs once a day for the next three to four weeks then slow taper as Internationally recommended. Unfortunately I can’t communicate with the GP practice by email to send links , amazing in this day and age, but will take a screenshot of Box 1 and drop it off at the office if I need backup or justification. I’m thinking 15mg will probably be a good starting dose for me as I had such an instant positive reaction to the first dose of 10 when I took it last night. My mind feels so much clearer and I have lost the pitting edema below my ankles as well as the recently acquired swollen knees. But I’m tingling all over - probably the arteries opening to increased circulation? Also I have had a dull background headache for the past two weeks which didn’t go away with the other instant symptom relief. Do others get headaches with PMR? I’ve never really had many before except with flu or such like.

Thanks again for your great research!

[PMRpro Ambassador in reply to alliebc]

What sort of headache? Where? Headache in PMR is always a red flag for GCA but it is rarely dull and background - although anything will be less in the early stages.

[alliebc in reply to PMRpro]

It was a dull all over headache, but it's better this morning on my third day of Pred, so I am not worried and will keep an "eye out" for vision changes as I have developing cataracts, other headaches or tender temples. It may have been just been a build up of body inflammation that's been happening, mostly silently over a period of many months and showing up in odd ways. Like puffy ankles, recurring lip swelling and peeling (exfoliating cheilitis), one bright red tingly swollen leg (not cellulitis or DVT) which happened after a longer hike last Sept. when my hips/thigh muscles became more achy as the hike went on. Probably the first signs of PMR, it took ages to shrink back with lots of elevation. I cut back to shorter flatter walks then. So inflammation has been waiting for the Pred to clear it, as NSAIDS did not relieve much. You're in N Italy? One of my most favourite places in the world! I was an au pair in Italy baaack in the day, as they say here.

[SnazzyD in reply to alliebc]

Pred can give you lots of sensations, especially in the first few weeks when it’s all very new to the body. It’s quite varied between people but you can get tingling, feeling buzzy, jittery, sluggish. brain ticking over fast, brain fog, euphoric, anxious, the list goes on. Sleep can be a challenge so napping is useful. A common pitfall is feeling less pain with the false energetic boost of Pred that induces people to go on a cleaning spree or catch up on life that has been put on hold. Try to resist it; you actually need rest and your muscles are not back to normal yet. The clear head can be exactly that or not and also can affect judgment so just get the measure of this before jumping in a car. So, keep an open mind and know it’ll change with dose too.Re headaches, some do say they get headaches with Pred and it may be a bedding in phase, but it seems you are saying it was there before Pred. Of course there’s the fear of GCA that can come with PMR but don’t panic yet; as I said, keep an eye on it. Take paracetamol if you wish and keep a note of timing, other head symptoms and odd eyesight features. Saying that, Pred can mess with focussing a bit which is also dose dependent, but things like double vision, spots (not floaters) or intermittent patches of sight loss should be acted on. Any jaw stiffness on chewing, pain at the base of the skull, hearing problems and scalp tenderness are also red flags. So, open mind, keep good notes and hopefully enjoy being pain free.

[alliebc in reply to SnazzyD]

Funny you should say that about the energy boost! I suddenly felt inspired to flip my heavy big mattress. I did manage it alone, but that enthusiasm for house-keeping is a-typical for me! The headache has gone today and I will certainly keep watch for those other symptoms you mention - thanks.