Tapering: Three weeks after reducing prednisolone... - PMRGCAuk

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Tapering

bluepuddy1 profile image
37 Replies

Three weeks after reducing prednisolone to 1mg, I had a polymyalgia flare, which caused general muscle aches, shoulders, back, legs. I increased the Pred to 3mg and got a little relief, but not a lot.

I agreed with my doctor that I should have a blood test, unhappily I have very small veins and I have visited two separate surgeries without success. The local hospital is booking over a month ahead for blood tests and the other option is a hospital at quite some distance away.

The aches and pains make things difficult, pain when bending, walking up steps etc.

Should I increase my prednisolone to get some relief, if so, by how much ? Advice needed please.

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DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

This link from FAQs contains usual advice for dealing with a flare. So up to 6mg and follow advice re time etc therein -

healthunlocked.com/pmrgcauk...

bluepuddy1 profile image
bluepuddy1 in reply toDorsetLady

Thank you.

PMRpro profile image
PMRproAmbassador

Just adding a couple of mg rarely works with an overshoot flare - you have to clear things out using the flare protocol. DL has provided the link.

bluepuddy1 profile image
bluepuddy1 in reply toPMRpro

Thank you.

piglette profile image
piglette

As the others say you should have increased a bit more, plus 5mg is the usual recommendation, try for a week or so, then reduce back in two steps if OK.

bluepuddy1 profile image
bluepuddy1 in reply topiglette

Thank you Piglette.

bluepuddy1 profile image
bluepuddy1 in reply tobluepuddy1

Hello Piglette,

I’m worried about reducing straight back to 2mg (the dose I was originally OK on), from 6mg after the allotted period of 14 days. How would you advise the dosage and timing for the 2 steps back to 2mg ? Thank you.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply tobluepuddy1

Why?

If you read the link I sent it says drop back to just above previous dose either in one step or if worried then 2 steps with a week at the interim dose. Piglette also suggested 2 steps.

If you added 5mg then you’re on 7mg, so step 1 to 5mg -stay a week -then step 2 to 3mg and stay there as long as you want until you restart taper proper. .

123-go profile image
123-go

Hello, bluepuddy. I sympathise as I, too, have ‘barely there veins’ which has made blood tests difficult in the past. I’m sure you have tried the following but here goes:

. Drink as much water as you possibly can in the hour before your test ( I can manage 4 glasses/tumblers).

. Warm up the area just before you go into the phlebotomy room (you can buy little hand warmer pads that you put in the microwave before you leave home and apply to inner elbow as soon as you reach the venue.)

. What really works for me is when the phlebotomist uses a fine needle; ask for one to be used. It takes just a tiny bit longer but really works.

If you look up Swiftqueue and sign up you can telephone if appointments shown are too distant. They have helped me in the past.

Other people will have suggestions.

(A little story: A phlebotomist once told me off because she wasn’t able to find a vein. She said I should have drunk plenty of water beforehand and when I assured her I had she resorted to practically yelling, “RELAX! YOU’RE NOT RELAXED!” I said very politely that there was no need to shout and that I proficient in relaxing techniques. She bellowed, “I’ve been doing this for three years and I can tell you’re not relaxed!” I calmly said, “I’ve had more than fifty blood tests since 2017 and have never been yelled at before.” She shut up and got the job done.)

PMRpro profile image
PMRproAmbassador in reply to123-go

Three years? Mere beginner!!! DId it occur to her that whatever might make you more relaxed it wasn't that?

123-go profile image
123-go in reply toPMRpro

You would have thought so. The fact is, I can be so relaxed that I’m able to doze off during dental treatment! That is true! My dentist and I joked about it at the end of the appointment. 💁🏻‍♀️

bluepuddy1 profile image
bluepuddy1 in reply to123-go

I’m a bit of a problem. I drank water before my last unsuccessful test, but was told that I should have been drinking water 3-4 days before. I’m afraid that only the local hospital uses fine needles and the waiting list is very long. (December). I have tried Swiftqueue, for the first time today, a good system, but the hospital proposed is a bit far away. Thank you for the tip re: warmer pads I will definitely try it. It was amusing to read about your very unrelaxing phlebotomist ! My sister has nearly invisible veins too, it must be genetic. She is fortunate in having a surgery that stocks fine needles.

123-go profile image
123-go in reply tobluepuddy1

Wouldn’t you think that in this day and age different sized needles would be the norm? Seems that “one size fits all” goes for medical equipment now! I think drinking extra water 3-4 days before a blood test is a bit extreme.

PMRpro profile image
PMRproAmbassador in reply to123-go

But the whole point is that dehydration can't be reversed with a few glasses of water. You need to take preventative action in advance, so prepare, drink more than usual to make sure you are really well hydrated. You wouldn't expect a dried out plant to recover in half an hour would you?

Different size needles ARE available - more likely ignorance on the art of the operator. Unlike here, blood taking in the UK now tends to be delegated to assistants. If that is all they do and do it a lot then they can be very good but still don't have background knowledge or skills that help. In the ED they now have ultrasound to identify veins - there are half decent veins but they are often deeper down and you can't see them on the surface. Most staff taking blood samples are in a hurry and blame the patient rather than their lack of skill.

bluepuddy1 profile image
bluepuddy1 in reply to123-go

Hello 123,

I must say that I’m not a fan of drinking water, but consume plenty of decaf tea.

Broseley profile image
Broseley in reply to123-go

I had my blood pressure taken at my surgery many years ago, by an elderly nurse who behaved like a headmistress or army sergeant major. She sharply said "don't cross your legs! Don't talk! Sit still!". Needless to say my readings were high!

PMRpro profile image
PMRproAmbassador in reply toBroseley

Except she was correct - all those things raise your BP!!!

Broseley profile image
Broseley in reply toPMRpro

It was her delivery style, though. She was really scary! When I go now, the lovely nurse gets me to sit and chat for 5 minutes after climbing the stairs to her office, then tells me to picture a relaxing scene while she takes the readings.

PMRpro profile image
PMRproAmbassador in reply toBroseley

Old fashioned "I'm the nurse, you're the patient" thinking. Remember Sisters, and Matrons ...

Broseley profile image
Broseley in reply toPMRpro

Hattie Jaques immediately springs to mind!

PMRpro profile image
PMRproAmbassador in reply toBroseley

She was a pussy cat compared to Sisters and Matrons I have known!!! Even the Consultants quailed before them!

bluepuddy1 profile image
bluepuddy1 in reply toPMRpro

Some hospitals here have Sisters, however I think the NHS was better run when there were also Matrons to keep an eye on things.

PMRpro profile image
PMRproAmbassador in reply tobluepuddy1

They - and the modern matrons - have a very different role now. Lot to be said for Nightingale wards and a SIster who was Queen of her domain - typified by perfect hospital corners on the bed clothes and NEVER sitting on the patient's bed ... Not that either are essential and give me a duvet any day but there was a degree of discipline underlying it that IS important.

bluepuddy1 profile image
bluepuddy1 in reply toPMRpro

Ah, I remember hospital corners. My mother taught me how to do them.

Koalajane profile image
Koalajane in reply toPMRpro

Before my cataract op I had my blood pressure taken. There were 2 nurses and 1 kept asking me questions. Before another blood pressure was taken , they did my blood pressure and I said can we do it again please with the chair lower because my feet aren’t touching the ground!

PMRpro profile image
PMRproAmbassador in reply toKoalajane

It is hopeless sometimes! Studies have been done showing having the cuff OVER a sweater affects the reading and guidance has been issued but most UK GPs and nurses throw the cuff on over rolled up sleeves with gay abandon. Not sure how they think the pressure reading can possibly be accurate! Position of arm. feet on the floor, crossed legs, talking - what a waste of time!!!

Bonnie-ma profile image
Bonnie-ma in reply toPMRpro

What I don’t like to see - a large size sphyg cuff on a skinny arm and a small size cuff on a large upper arm. One size does not fit all!

Broseley profile image
Broseley in reply toBonnie-ma

When my cat had his blood pressure taken at the vets they had to use a cuff for a dog as he was so large!

PMRpro profile image
PMRproAmbassador in reply toBonnie-ma

Forgot that!!!! So right!

Broseley profile image
Broseley in reply toPMRpro

And why is it they always have the chair facing the 'wrong way' for me, meaning I have to use my right arm. It goes very very tight and really hurts. Nowadays I insist on turning the chair round so I can use my left arm.

PMRpro profile image
PMRproAmbassador in reply toBroseley

Actually, I remember at one point we discussed whether apparent extreme pain with the BP cuff might be a sign of PMR. I can remember being told off for being a wuss when I squealed at the pain it created. It could be really awful but no-one connected it with the problem.

Broseley profile image
Broseley in reply toPMRpro

Interesting! I assumed it was somehow due to my right arm being more muscular, I'm useless with my left! I suppose the two could be connected. More muscle = more pain due to PMR?

123-go profile image
123-go in reply toBroseley

Not surprised! A lovely nurse told me how to reduce my blood pressure using breathing techniques and watched me practise. It honestly worked and I often use the method when I take my own bp. The thing is, when you go to phlebotomy you aren’t allowed 5 minutes to calm down breathing after you’ve run across the car park and up 2 flights of stairs because the lift wasn’t working.

PMRpro profile image
PMRproAmbassador in reply to123-go

But they never take that into consideration do they?

123-go profile image
123-go in reply toPMRpro

No, they don’t. ☹️

herdysheep profile image
herdysheep

Fully endorse water and warmth, but DON'T rub your inner elbow area to warm it up. It can create havoc with the blood cells and then you have to through it all over again. Pressing on the puncture area for a while helps to reduce bruising.

bluepuddy1 profile image
bluepuddy1 in reply toherdysheep

Thank you Herdysheep,

I will definitely do this.

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