Aortitis- prednisolone tapering and relapse

[Suzycat]

Hello again, everyone. I've been tapering my prednisolone for about 8 months now, and very slowly. I got down to 2mg on Nov 25th this year. Today is day 34 on 2mg and I havnt felt well, over the past 2-3 weeks....i think....i don't keep a diary on my condition. My fatigue is profound again and my heart rate is up again, I don't have fever or chest pain, but I know I'm not right....does this make sense? Anyway, I have increased my dose back up to 4mg, just to see if I feel better. This is my first experience of perhaps reaching that dose of prednisolone, which isn't enough. I also take mycophenolate and have taken that for 81/2 months. I'm open to any advice, or similar experience from anyone. Thank you

[PMRpro]

I doubt it is the aortitis that is causing the problem - extreme fatigue at this sort of dose is a sign that your adrenal glands haven't caught up with the reduction in pred dose and you aren't producing a top-up of cortisol, the body's natural corticosteroid. Do you feel better on 4mg?

One top rheumatologist likes to keep his pred patients at 5mg for a few months to let the body catch up (about 7mg is the point at which you body must stage its graduated return to normal working). He then finds the rest of the reduction goes with fewer problems. Even once you are fully off pred it can take up to a year for the adrenal function to get back to normal.

[Suzycat in reply to PMRpro]

Hi PMRpro, to be honest with you, I've had no constructive advice in relation to decreasing my press, other than do it slowly. I am an ex nurse, but I am not an expert with such things. My GP told me that the adrenal glands kick in rather quickly, but what you have just said, makes more sense. I took 2 mg this morning, but have felt quite ill, so I took another 2mg later in the day, with the intention of staying on 4mg. I am seeing my nurse specialist next week...she always said to me, see how you feel before you reduce, whereas I have been relying on my CRP results, which have stayed in the 15-19 range for a few months. I feel a little bit better now, but I had to go back to bed earlier today, as I felt wretched. Im still on the learning curve it seems. Thank you for that 😊

[PMRpro in reply to Suzycat]

Dear me - wonder what experience your GP has! They might kick in quickly with people who have only been on pred for a few weeks or even months. The longer you are on it the longer it usually takes and a general rule of thumb is a month for every month you were on pred. If you were on low doses (well under 10mg) then again it may be quicker. And anyway - everyone is different.

It doesn't start happening until you get below the dose that is called "physiological", officially 7 to 8mg - but that also varies as some people absorb 90% of what they take, others only 50%. It is less the adrenal function itself that is the problem - the feedback system is a very complex set up of organs and hormones and swings about like a pendulum until it settles down - and that happens every time you change the dose again. So slowly and with the smallest possible change helps.

The extreme fatigue is the first sign - and if you ignore it you run the risk of getting into an adrenal crisis.

[Katie18]

its difficult to give advice suzycat as we are all so different. The first time i came down on pred v gradually i struggled all the way & was resorting to cutting tablets in half. i did flare after about 3 months off them. Ive since managed it again 2 years later it was a lot easier but now im off them i feel v washed out. Im niw going for tests to make sure my body's natural steroids are kicking in. A GP said a v sensible thing to me recently which is you need to give your body time to react to these changes. If i were you id find a level of steroids you feel ok on, stay on that for a while until you feel better, then try coming diwn really slowly again. the key for me is trying to listen to your body. If you need a few months at 5mg so be it. Good luck i know its so hard.

[jgold]

I'm surprised to read that doctors give patients vague advice about reducing doses of prednisolone.

Perhaps my recent experience might be helpful?

Having been off prednisolone and reliant solely on azapriothine for about 12 months, my lead consultant (renal and vasculitis specialist) prescribed 20mg prednisolone when a vasculitic rash reappeared in early May.

The rash cleared and reappeared in line with my ceasing and resuming the prednisolone (always on the consultant's advice) for a couple of weeks. Next advice was to reduce prednisolone by 5mg per week, but only once the rash completely cleared - which it did not.

Throughout this period I attended clinic every two weeks. Advice was now to remain at 15mg until rash completely cleared, then and only then reduce to 10mg.

The outcome was that the rash lasted for about 10 weeks, during which I was on prednisolone 20mg for the first 5 weeks, 15mg for 4 weeks and 10mg for one week.

With the rash now largely eliminated (apart from a few spots recurring for a few days), I was reduced to 5mg for 10 weeks.

By now it was late September (with clinic visits widening to every five weeks and then to eigth weeks). Advice was then to reduce prednisolone by 1mg every two weeks but not to go below 2mg, and to cease reductions if vasculitic spots recurred - which they didn't.

In mid-November advice was to continue prednisolone 2 mg for a total of 4 weeks, then reduce to 1 mg for another 4 weeks and then cease - which I will do on 3rd January.

The point of this long story is to illustrate the precision of the advice I have been given on the rate of weaning off prednisolone, and the contingency advice given in case things did not go to plan. This seems to me to be much better than the vague advice given to several respondents to this thread, such as "small changes" or "come down slowly".

Perhaps everyone should insist on being given clear and precise advice? I suppose I have to admit that it is easy for me, as I am looked after by the renal and vasculitis team at London's Royal Free Hospital which is led by two consultants who are at the top of the vasculitis "game". Not only do they clearly know their stuff, but they are 100% approachable by phone or e-mail (photos are of course worth a thousand words) for any queries. I'm not sure of the catchment area they cover, but it seems to be a long way beyond London. For anyone whose vasculitis has caused kidney problems, I can certainly recommend them - and they are probably pretty knowledgable about other forms of our disease.

[PMRpro in reply to jgold]

There you have the nub I'm afraid.

Most doctors are only used to using pred in acute situations - a short sharp taper more often than not where 5mg drops work fine. Anything that doesn't fit that and they are often stumped.

In my home forum we are only manged with pred, over years, not just months. That leads to various problems - starting with having to titrate down from a relatively high starting dose (15-20mg for PMR, as much as 60mg for GCA) to find the lowest dose that manages the symptoms as well as the starting dose did. But many doctors see only "reduce..." and assume it is heading relentlessly to zero come what may.

This approach

healthunlocked.com/pmrgcauk...

has been worked out by experienced patients and is now being trialled by the Leeds rheumatology department, having already been used by doctors in the NE and by many patients on our 3 forums. The feedback from Leeds patients is that it is better than anything they have been asked to use before - no steroid withdrawal problems, very few flares, just a steady reduction until they find the end point. It can be made longer or shorter, can be used for 1mg or 2.5mg at a time - and is completely adjustable to the speed the patient can tolerate. Another reputable reduction plan in PMR takes 2 years to get from 15mg to zero (all being well) - the Dead Slow approach takes a similar time providing the patient doesn't flare showing the disease is still active but that is immediately apparent and you stop and go back to the previous dose before a flare gets hold.

There have been no studies on best practice pred reductions - all approaches have been empirical so far, whatever the use of pred. But smaller steps are definitely better than big ones.

[Hono in reply to PMRpro]

I am new to this page and find all the comments interesting and helpful. I would like to be clear about the prednisone reduction...1 day new, 6 days old. As you taper from that and move along it would be 6 days new 1 day old, etc. is that correct? I was diagnosed with Aortitis last January and have been trying to taper off the prednisone. I recently had a flare so had to up the dosage for ten days. I am in the US so not sure how my doctor will respond to this plan, but I like it! Thanks for sharing...

[PMRpro in reply to Hono]

1 day new lower dose, 6 days old

1 day new, 5 days old

1 day new, 4 days old

1 day new, 3 days old

1 day new, 2 days old

1 day new, 1 day old

1 day old, 2 days new

1 day old, 3 days new

1 day old, 4 days new

and by then you probably feel you could go every day on the new dose and start all over again with the next new lower dose.

Is that clearer?

Get a calendar, write "new dose" on the day you want to start. Count the number of days you want to take the old dose, then write in new for 1 day, repeat with one day less of the old dose and so on. You could use colours - red for the days of new dose, green for the days of new dose for example.

[Hono in reply to PMRpro]

Thank you for your response. I am going to print this and take it to my rheumatologist on my next visit. It will be interesting to hear his response!

[AllyGY2013]

I have been reducing my prednisolone gradually for a long time. Originally i wasn't having much success but then had a proper chat to my gp and he explained how pred works and how a gradual tapering would be necessary. He has also offered injections, but I declined.

I am now down to 5mg from 15mg but reduce 0.5mg monthly and am now reducing 6weekly, if I feel like things aren't quite right I stay on the new dose for a bit longer until I feel things have settled. My gp lets me decide when and how to reduce my preds. if life is particularly stressful and/or I have an infection (as now) I don't reduce but wait.

I'm not a very patient person but have to be, have had to accept some things take time.

[Suzycat in reply to AllyGY2013]

Thank you everyone, for your comments and opinions, it seems, as you say, variable, from person to person, and that makes perfect sense. I feel a bit better on 4 mg and will stay on that dose until I feel well enough to reduce again.

[Hidden]

my disease was previously suspected as aortitis and i also had similar issues but after starting tocilizumab things improved and now i am on tacrolimus and i am almost fine.