Cutting down on Pred

Thank you Bri

To save too much worry - Addison's shouldn't be a problem until you get down to below 10mg. Until then you are taking well above the "physiological dose", the amount the body makes itself to cope with living. From 10mg the reductions must be small and spaced out so the body gets used to the reduction slowly and adapts by starting to produce cortisol itself again.

The signs of an Addison's crisis are extreme fatigue and weakness, low blood pressure and confusion. This is the reason you should carry a card with you saying you are on pred, how long and the dose - if you were in an accident and unconscious you wouldn't be able to tell anyone and could miss your usual pred dose - obviously if you are on a higher dose the shock to the system is more than if you are on, say, 5mg. Even a paramedic can give you an injection to avoid such a nasty event if it happens accidentally. Never travel without spare pred in your pocket/handbag - and really pay attention to not forgetting your dose. One day probably won't hurt much but more than that is risky.

Link to Addisons:  https://patient.info/health/addisons-disease-leaflet

Just to report that cutting down from 40 to 35 seems to have a great effect. I'm now not sleeping during the day and my energy levels are way up. I feel almost normal, apart from brain fog and general tiredness. I'm wide awake at night though!

It maybe my body is adjusting anyway. I'd only been on 35mg for 4 days before I had my weekly blood test.

Cut down today to 30mg. Hope I can cope with that and the next reduction.

Hope this is the way forward.

Hi susanne, good luck with the tapering. Remember not to much too quickly. I'm on 9.5 at the moment and I know all about sleepless nights hence I'm playing on my iPad at 2 in the morning! Anyway I'm glad you're feeling so much better. Christina 

One lady found she slept during the day and struggled to sleep at night whilst on higher pred doses - but when she tried taking it late at night the sleepiness let her sleep at night and she was awake during the day. When you are on these high doses it probably doesn't matter when you take them in terms of "adrenal suppression" - that is the main reason for being told to take your pred in the early morning.

Good tip!

I normally take a glass of water to bed with me, but am not doing so on a Friday night as that will also remind me why I can't have a drink when I wake up on Saturday.

What a disappointment, I do feel feel for you. But get yourself back up to 35 the sooner the better, get the inflammation under control, stay on it for a good 6 weeks then perhaps you could try and taper even less than by 5 then if you think you're having another flare put yourself back up the last dose that worked for you. Stay positive. Regards, christina 

Thanks Christina.

There is research evidence published last year that the inflammation in GCA is still present even after 6 months at above 20mg/day. You are barely at 6 weeks and they were trying to reduce you to 30mg - unless the underlying inflammation is under control you cannot reduce so low. You cannot force reductions - all that happens is that you will have to go back to a higher dose and in the end it takes longer and you use more pred than if you are patient..

Yes, it is a slow business. That is what we have tried to explain in the hope of saving you this experience. And a competent rheumy is worth travelling a long way to see.

Hello susanne, it really is very good news that you are feeling much better and handling work better than you thought you would, infact it seems to have really perked you up and I can tell from your text that you are happy with this weeks achievements. I am very pleased for you. Don't forget once you get down to 10mgs you no longer reduce by 2.5 but adopt the very slow taper and almost stop regime. Takes forever but lessens the risk of flares which none of us want. 

Well, good luck and all the best, christina 

Hello susanne

I am really pleased that you are doing so well -I don't want to put a damper on your good spirits - just a word of caution, you seem to e dropping very fast  2,5mg per week seems alot, I have had GCA for a couple of years now, it took me over a year to get down to 15mg, unfortunately I dropped from the 15 down to 5 way too fast - (at the suggestion of my rheumy!) resulting in a flare and going back up to 15mg - I am now at 12,5 for the next month.

In the beginning- coming down from 40mg I was dropping 2.5mg - but not weekly, and every time I droppd the dose I had a control blood test the following week to make sure that everything was OK. Then stayed at that dose for at least one month before the next drop.

It is really difficult finding the balance.

I have also been working throughout, except the first month, and like you I have an understanding employer - so if I suddenly am just too fatigued we work things out. It does keep your brain alert but can be quite draining.

Hope that things keep going well just please don't try to rush it.

Hi Janet

My rheumy told me to reduce by 5mg/week! I knew it was too much too quickly. I decided to reduce by 2.5 weekly. He has been away and my next appointment with him is 19 March, so have been doing my own thing. Taking your advice, I may just decide to stay on 27.5 for at least another couple of weeks. I too started out on 40mg.

I have blood tests fortnightly now. They used to be weekly at the beginning.

I really would counsel against reducing EVERY week - it isn't long enough to see if the current dose is still adequate - and particularly since you are back at work. If you overshoot the dose and the symptoms return you will have to go back to a considerably higher dose and have lost any advantage there might have been.

Eileen

I will take your advice.

I have been on 27.5mg since 21 February, so perhaps stay with that until 21 March.

Oh so glad to hear that your first week back at work with reduced hours has gone so well, Susanne.  The chilli jam-making sounds impressive, but please don't go mad now just because you feel so much better will you, remembering that those steroids need every help whilst they try to get the inflammation under control.

You're very wise to have held off the 2.5mg reduction during this week of returning to work, and the slower/smaller the reductions, the less risk of the inflammation taking hold again.  If your next blood tests show good results, and symptoms allowing, then will be the time to try a reduction.  I was very lucky in being able to reduce down very quickly and successfully as far as 15mg under the guidance of an excellent rheumatologist, and at the time he advised that 15mg usually controls things.

Enjoy your weekend and I hope next week goes as well.

Hi MrsO

Yes, I must be careful not to over do it and I will have a nice relaxing weekend. Plenty of reading instead!

Have a good weekend too.

Susanne