After 3 Weeks at 40mg

[Fredddie]

Morning all. Any advice please on higher dose initial tapering.

Diagnosed on 27 July with the last 3 weeks on 40mg pain free.

I take 20mg am and 20mg pm and works fine. So the last 2 nights I have reduced to 15mg and have had no problems at all.

My questions are:

How long should I stay at 15mg at night before dropping again and how much?

Should I drop the am instead to balance out or just concentrate on the pm or does it not matter?

I am not in patient to drop but just wondered where I should be going with this possible next stage?

Is it true you can drop down quicker at higher dose?

As always any advice very much appreciated.

Thank you.

[SheffieldJane]

It’s a good question Freddie. Maybe carry on reducing each split dose as it seems to suit your body for now. Listen to your body though, one of the doses may begin to feel more necessary and you might want to adjust to that. Is your diagnosis GCA? I am sure that DL has said on a number of occasions that a split dose is not recommended for the treatment of GCA, because of the danger of unchecked inflammation. If this is the case, you may be wise to seek medical guidance. It is no mean achievement to get the balance you have though.

[Fredddie in reply to SheffieldJane]

Hi,

Thanks for reply. I am definitely listening to my body. I have not been diagnosed with GCA and had no symptoms of it. My doctor hasn't recommended any tests for it. Back to doctor next week for more blood results ESR/CRP, Kidneys and Infections. Feel good although still stiff when I get up from sitting but thats no problem.

Much appreciated.

[DorsetLady PMRGCAuk volunteer]

Hi,

You can drop in bigger steps, but not necessarily that much quicker time-wise.

You need to give yourself at least a couple of weeks before you can know that the new lower dose is enough. It can take that amount of time before the body rebels if it’s not sufficient. When I was on higher doses I left 3-4 weeks between each reduction - usually 4.

Next time you could try reducing the morning dose. If the split dose suits you then keep it as such - however we do normally recommend a 2/3rd 1/3rd regime rather than 50/50 - that way you have a bigger amount to cover the daytime.

Once you get to 25/20mg then I suggest you need to reduce the tapers from 5mg a time to 2.5mg

Have you actually been diagnosed with GCA or is this high dose because your PMR wasn’t controlled at the usual doses? That may affect the speed of tapering - or at least our advice.

[Fredddie in reply to DorsetLady]

Hi,

Many thanks for the info - good advice. I have not been diagnosed with GCA and have had no symptoms of it. However since being on 40mg my ESR/CRP that was initially high and has now come down. I have had regular weekly blood tests since starting Pred and due to go back next Monday for more results and wanted to have a plan of action in mind. I will use your suggestion and see how I go.

Much appreciated.

[DorsetLady PMRGCAuk volunteer in reply to Fredddie]

Just remember it is just a plan. You need to do what you and your body are happy with. Good luck.

[Fredddie in reply to DorsetLady]

I will and thanks again for your time.

[Fredddie in reply to DorsetLady]

Hi DL

Just got back from Drs and now on coated Pred. Didn't even have to justify the cost - also saw different Dr! My latest ESR is 25 and CRP 4 so very happy with that.

So a big Thank you for the NICE info you gave me.

Having trouble sleeping at night up from 2 am which isn't great. Dr suggested taking total dose Am so I'm going to try again - any thoughts on that much appreciated as now dropped from 40 to 35 will stay there for next 3 weeks = 1 month.

Also Just to clarify again as now on coated Pred I don't require the emperozole?

Thanks again for your advice.

[DorsetLady PMRGCAuk volunteer in reply to Fredddie]

You may find taking whole dose in morning may give you better sleep pattern - but it may also mean you are stiffer in the mornings - until your Pred kicks in. With coated Pred that can take longer than uncoated - so just be aware - the uncoated ones are absorbed into the system more quickly.

Initially you might like to take just 5mg at night- enough to see you through the early morning but not too much to cause sleeping problems.

It’s sometimes a bit of trial and error to find what’s best for you.

And you’re correct you don’t need a PPI if you’re on coated Pred - so one less tablet to take!

[Daffodilia]

I dropped from 40 mg by 5mg each month - now on 6mg since Oct - just starting to feel some bad symptoms again

[Fredddie in reply to Daffodilia]

Hi,

Thanks for reply.

Yes I'm thinking 5mg every 4 weeks and re assessing at 20/25mg.

Sorry to hear your having bad symptoms maybe your body is telling you to slow it down the lower your dose has become.

Good luck.

[PMRpro Ambassador]

In that you can probably tolerate bigger steps, yes - 5mg at 30+ is probably bearable, 5mg at below 20 is not. Times between probably don't vary so much - except if you have PMR you didn't really need 40mg and a speedy reduction to 20mg will be OK if you are lucky.

[Fredddie]

Hi,

Thanks for reply. Fully understand. My doctor has told me it is PMR and I did need 40mg which has successfully sorted the pain and bought the inflammation down. However will still taper very slowly - I really don't want to make the mistake of trying to reduce too quickly and be in that awful pain again. I'm in it for the long run

[Noosat]

My doctor had me on 40mg for three days, then down to 20mg. from then on, almost 9 months ago, I have been tapering by myself, carefully reading what others say on this site. I am down to 4.5mg. At this dose, I seldom have pain, I think some that I do get could be from the osteoarthritis I have. I am quite stiff, especially in the morning, but hope the adrenals will up their output as time goes by.

[Fredddie in reply to Noosat]

Hi, Thanks for reply. Very interesting to know your experience. I too will be tapering very slowly from 25mg down. Good luck with your progress and being PMR FREE😊