I was diagnosed with GCA in November and was started on 40mg of prednisone.

[Ambatu]

I experienced really bad steroid induced diabetes which seems a bit more in control now. I am currently down to 8mg of Prednisone, then 120mg of Glyclazide and 500mg of Metformin for the diabetes

In the last few days I have felt very depressed and anxious. I am not sure if this is related to my medication and would like to hear if anyone has felt the same ?

I am seeing my Rheumatologist in September when he expects me to be on 5mg steroids. I have been reducing 1mg per month.

Thanks in advance. I have learnt so much from this forum.

[DorsetLady PMRGCAuk volunteer]

Hi

Would say it more likely due to the fact that you are now at the stage when your adrenals need to start thinking about waking up and working again - anxiety is a very common symptoms of that. Maybe have a read of this -

healthunlocked.com/pmrgcauk...

The only way to nudge them into working is a very slow taper, small steps, time and patience … but do have to say you have scooted down to 8mg very quickly, and probably hasn’t helped. A point we made in your previous post 4 months ago.

But then neither has your Rheumy if he expects you to be at 5mg within 9 months…

[Ambatu in reply to DorsetLady]

Thanks for your comments. Have I been reducing too quickly ,,?

[Ambatu in reply to Ambatu]

Where can I find the correct way to reduce from 40mg ?

[HeronNS in reply to Ambatu]

Here is a link to a section of our FAQ posts. Hopefully you will find a program which will work for you. Rule of thumb is not to taper by more than 10% at a time and to stay at each level for several weeks. The programs developed by patients describe different ways to introduce new dose so it's easier on the body. But it's also important to remember that you need what you need, and if disease activity is such that symptoms are re-emerging, then you've gone too low. PMR/GCA are neither of them quickly dealt with. Your aim is to find the lowest dose which controls the symptoms. Eventually you will be able to get to zero but that can take several years. 🍀

healthunlocked.com/pmrgcauk...

[Ambatu in reply to HeronNS]

Thankyou

[Ambatu in reply to HeronNS]

Thankyou

[SnazzyD in reply to Ambatu]

There isn’t a one fits all ‘correct’ reduction plan. There are two considerations with reducing. 1. Making sure you keep enough steroid in your system to keep up with the inflammation being made by your autoimmune condition. 2. When under 10mg you need to think about your adrenal function too. If you read the link that DL has given you, it should explain why and it is essential reading for anyone under 10mg.

Until you get below 10mg you only have think about 1. Then after that you need to think about 1 & 2. 1mg per month may be fine for both issues but if you go faster than your adrenal glands can back on line you can feel very tired, weak, sleepy, anxious, and shakey after not doing very much. As DL says the only way to get them to start working again is by being a bit too low in cortisol/Pred. 1mg a month might be too fast so 0.5mg is often used instead. I was doing 0.5mg every 4-8 weeks down to 5mg. As you have got this low quite quickly for GCA you need to be careful not to ignore GCA symptoms creeping back IF they do.

[Ambatu in reply to SnazzyD]

Thankyou

[DorsetLady PMRGCAuk volunteer in reply to Ambatu]

How have you done it so far?

Most guidelines say similar -

Once symptoms under control at 40mg -Reduce daily dose by 10 mg every 2 weeks until 20mg [personal opinion every 2 weeks is too fast- needs to be 4 weeks and 5mg a time would be better]

From 20mg - Reduce daily dose by 10 mg every 2 weeks [again 4 weeks better]

From 10mg - Reduce daily dose by 1 mg every 1–2 months

But you need to be aware at each taper all is okay before you attempt to reduce. .. and once you get below 10mg the adrenals come into play, so reducing invariably becomes more difficult and needs to be slower.

[Ambatu in reply to DorsetLady]

Thankyou so much maybe I might reduce 1mg every 6 weeks instead of monthly

[DorsetLady PMRGCAuk volunteer in reply to Ambatu]

To most people on here with GCA - yes….but it’s really depends on how you have felt all the way through..

[Ambatu in reply to DorsetLady]

I will check.my letter about my reductions but when I got to 10mg its 1mg per month. I have no.pain and generally feel okay just lethargic, thankyou

[DorsetLady PMRGCAuk volunteer in reply to Ambatu]

Ok - but remember it’s only a plan.. and somethings it needs to be adjusted to suit you and your circumstances. Sometimes they have a habit of changing so don’t carry on if the things happen to go awry, sounds as if you have lucky so far.

[PMRpro Ambassador]

This

rcpe.ac.uk/sites/default/fi...

is a publication from a highly respected team who were working in Bristol UK. Prof Kirwan is long retired but the author is now Professor Vanessa Quick, specialising in GCA at the Luton & Dunstable hospital near London. She still uses this taper - because it works, as she tells her patients if they ask!

[Sophiestree in reply to PMRpro]

That says reduce by 1mg per month once you get to 10mg? Or did I miss something in it?

[DorsetLady PMRGCAuk volunteer in reply to Sophiestree]

That’s correct, but after you’ve been on 10mg for a year…

[PMRpro Ambassador in reply to Sophiestree]

As DL says - following a YEAR at 10mg. And it does say somewhere it may require adjustment for the individual patient.

[Ambatu in reply to PMRpro]

Thankyou

[Sophiestree in reply to PMRpro]

I'm struggling with 0.5 at the moment to get to 7! And that's over 8 weeks. Interesting though . I wasn't at 10mg for a year. But was at 8mg

[PMRpro Ambassador in reply to Sophiestree]

But it always comes with the caveat that it may need to be adjusted for the individual patient.

[Doraflora]

when I got down to 5mg I then reduced down by 0.5 mg at a time, and staying on one particular dose for a good 6 weeks until I felt confident to taper by another 0”5

I’m now on 2.5mg.

[Ambatu in reply to Doraflora]

Thankyou that's sounds like good advice

[Missus835]

Hi Ambatu. I have PMR and trying to taper. My rheumy also wanted me to do 1 mg per month. Not possible for me. So it's .5 mg using Dorset Lady's 5 week tapering plan with a few restarts at the 1 mg. Thus trying .5 now. The lower, the slower which gives the adrenals a chance to catch up. Hopefully trying to avoid the issues that too quick a taper could cause. Best of luck.

[Ambatu in reply to Missus835]

I'm thinking of trying the .5mg as well, thankyou x

[AmberGamble]

I also gained the added ‘bonus’ of SIH when GCA & PMR decided to strike last December. My inflammation was so high, I had to be started on 60mg Pred, which had to rise to 70mg to keep me safe as I was in the US for Christmas with my family for 6 long weeks.

I’ve been on insulin since then plus metformin, quite a nasty development but unavoidable.

I can honestly say, the steroids immediately controlled the PMR/GCA but the management of the SIH a was and still is a daily issue for me.

In answer to your question, yes…I felt very depressed and not myself at all for months as it’s such a lot to get your head around. I was fairly fit and well until the sudden onset. I’m feeling much better both mentally and physically now but I’m still not my old self, and maybe I will never be.

Still, there is still a lot I can do and I can enjoy, so life is getting better, albeit slowly and I get impatient for my old life back!

Best wishes on your journey.

[Ambatu in reply to AmberGamble]

Hope things improve for you x