Reducing

[Jizer]

Looking for help reduced from2.5 to 2mg started to get slight rear rib cage and thigh pain stayed on 2mg for 4 weeks then reduced to1. 5 been on 1.5 for 17 days now experiencing shoulder pain also. Thanks. Jizer

[DorsetLady PMRGCAuk volunteer]

Hi,

Looking at your previous posts, these symptoms seem to be your definition of a flare.

As you’ve only been on Pred for about a year, I would say you have (on various occasions) gone below the level you actually need before, and are again in that situation.

Were you okay at 2.5mg? If so, you need to go back up to that - at least. A quick burst at 5mg to get inflammation under control would be better.

Your aim is to get to the lowest dose that CONTROLS your symptoms - you are not reducing relentlessly to zero come what may.

Get your symptoms under control, whether that be at 2.5mg or 5mg - whatever it takes, and then reduce more slower - 0.5mg a time (if that’s possible with your tablet sizes) and using a slower taper method - such as this -

healthunlocked.com/pmrgcauk...

Your PMR has quite a lot longer before it burns itself out, so no point in trying to get off the Pred too quickly. You need to take the dose you need to be symptom free.

[Jizer in reply to DorsetLady]

Thanks Dorset Lady could I ask how long I should stay on 5mg and what dosage should I take on alternate days. I have been taking prednisolone for around 18month again thanks for advice

[DorsetLady PMRGCAuk volunteer in reply to Jizer]

You probably need to stay on the higher dose for at least 2 weeks, but I would give it 4 weeks - you should then get a good grip of the inflammation tgat has built up again.

As PMRpro has explained PMR lasts anything from 1-6 years, so don’t be in any rush.

No really sure what you mean about different doses on alternate days - is that because you are in North America and can only get 4mg tablets? can you get 2mg? Or is that the way you have advised.

In UK we have more variety of doses - 5mg, 2.5mg & 1mg - so are inclined to take the same dose every day.

[Jizer in reply to DorsetLady]

Sorry if you have misunderstood me, but I looked at the link you sent in regards of simple taper which looks great. I am unsure of dosage amount to be taken on alternate days whilst tapering thanks

[DorsetLady PMRGCAuk volunteer in reply to Jizer]

See what you mean -

So the first week -

The new (lower) dose to be taken on Sun & Thurs will be 4mg (or 4.5mg -whichever you decide);

the old dose to be taken on Mon, Tues, Wed, Fri & Sat will be 5mg.

2nd week -

You will take 4mg on Sun, Tues &Thurs. 5 mg the other days

3rd week -

Take 4mg on Sun, Tues, Wed & Thurs. 5mg the remaining days

4th week -

Take 4mg Sun, Tues, Wed, Thurs & Sat. 5mg Mon & Fri

5th week -

Take 4mg every day.

Hope that clarifies.

[Jizer in reply to DorsetLady]

Thanks Dorset Lady

[Suffererc in reply to DorsetLady]

I saw my GP two weeks ago for a PMR review. She wasn't too pleased that I was still on 5 1/2 mg of pred after 3 months. She advised me to taper and ignore any pain that I think is PMR because she thinks it is Artritis. I asked should I just keep tapering then and she said yes. She had had a patient who she said was too cautious about tapering and the object was to get off pred ASAP. I have had to ignore her, but in the end she has the control because she could stop the prescriptions if she wants to. I thought I was doing well at 5 1/2 after 18 months. What she really needs to give PMR patients is a little support and perhaps learn more about the disease.

[DorsetLady PMRGCAuk volunteer in reply to Suffererc]

Totally agree with your last sentence. She obviously doesn’t understand our illnesses.

The aim with PMR or GCA is to find the LOWEST dose that controls symptoms, not to get off Pred ASAP. Does she not realise the implications of that thought for both your illness or your adrenals.

If she suggests it again perhaps you should advise her she is likely to make you a lot worse rather than better with that view.

Getting off ASAP might apply to other illnesses where Pred is prescribed for a short term only. Unfortunately that’s the only experience some GPs have.

[PMRpro Ambassador in reply to Suffererc]

Time to find another doctor. One who knows something about PMR. Anyone who has got to 5.5mg in 18 months is doing well - that is the median time to get to 5mg, that means half of patients. The objective here is NOT to get off pred ASAP - as you know.

Out of interest - where are you?

[Suffererc in reply to PMRpro]

Sleaford

[Boss302Fan in reply to DorsetLady]

In the US we have access to 50, 20, 10, 5, 2.5, and 1 mgs tablete

[DorsetLady PMRGCAuk volunteer in reply to Boss302Fan]

We also have 25s & 10s - more usually used in GCA case. Didn’t mention them because they don’t often come into the slow taper plans - most people don’t need them until they get below 15mg.

Once someone did say they could only get 4mg & 2mg sizes - thought that was US, but perhaps thats changed or maybe was enteric variety only - or somewhere else entirely!

Thanks for info - sometimes gets a bit difficult remembering difference between countries.

[PMRpro Ambassador in reply to DorsetLady]

Medrol comes in 4 and 2mg tablets - presumably to make the tablet sizes equivalent to pred doses 5 and 2.5

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Ok thanks.

Knew someone had mentioned it when talking about trying to reduce in smaller steps and was having problems getting the equivalent of 0.5mg.

Thought it was usual Pred tablets.

[PMRpro Ambassador]

A return of PMR-type symptoms is a sign you have reached your objective: the lowest dose that manages the inflammation as well as your starting dose did. If you have signs of a flare of symptoms you shouldn't continue to reduce, you stop and, if necessary go back to the previous dose where you had no symptoms. It doesn't mean you won;t get lower - just not yet. Wait a couple of months and try again, it may work. If it doesn't, rinse and repeat.

DL and I sing from the same hymnsheet - so, I repeat, you are never reducing the dose relentlessly to zero. You are tapering or titrating the dose to find YOUR dose which won't be the same as someone else's. PMR requires a median duration of pred management of almost 6 years. 1 in 5 manage to get off pred in under a year - 40% of patients still require a low dose at 10 years and there is no way to tell in advance which you are.

[Jizer in reply to PMRpro]

Thanks pmrpro