How long is it safe to stay on low Pred. dose?

[oscarandchloe]

I started with GCA in 2019 on 45mg Pred. got that down to 4mg in one year with no return of symptoms but meanwhile I was building up inflammation from PMR and started on 15mg Pred in March of 2020 . I came down very slowly getting stuck at 7-8mg and having to go up again. Since then I've come down to 5mg and stayed there for about a year. Very comfortable on this with no symptoms of either PMR or adrenals. I was about to start reducing early this year but I had a hip replacement coming up and had to take a cancellation suddenly in May (Hooray!) so the surgeon was happy with 5mg and the anaesthetist gave me supplements during the op. I really couldn't cope with reducing post-op and now my second hip op is coming up early November. I'm still on 5mg, should I try reducing now -probably get to 3/4mg or shall I wait until all the ops are over? By the way, I had no flares after the op. it felt as if my body was coping well.

[PMRpro Ambassador]

If you have an op coming up - don't rock the boat! You need to be able to do the rehab and PMR symptoms really don't help!

This isn't ideal and I'm not saying it is fine for everyone but I have been on pred for 13 yearss now. A great deal of that time I have been on above 10mg - it took me 4 years to reliably get below that dose at all. Then I bumbled along at about 9mg for a long time and some years ago managed to get down to 5mg for nearly 2 years. Then I had a relapse/flare/recurrence of the PMR symptoms and was back to 15mg. I got down to just above 10mg again and then came the last few years of husband ill and me as sole carer and then Covid. During that time I have been at 15mg and above in order to function at all. I haven't crumbled in a heap, my skin isn't much different to many 70 year olds, have only just been told there are cataracts appearing and my bone density hasn't changed a lot despite no bisphosphonates. I haven't gained weight (I am overweight but have been most of my life!) and I don't have a moonface.

Most of the adverse effects of pred can be mitigated and even avoided altogether when you know how. Don't worry about another few months at the dose you are on now - you soon lose all the perceived benefits of reducing if you trigger a flare for whatever reason and have to go back to a much higher dose.

[oscarandchloe in reply to PMRpro]

Thanks for all these replies. My gut feeling is to stay put at 5mg while the hip ops are ongoing and face the reduction next year when my body has healed and I can deal with withdrawal symptoms. I did need to check as one is always aware that each mg adds to overall total. My first op hip is wonderfully liberated but the other holds back all that I'd longed to do -those summer walks in English meadows, days out with grand-children, bending down to pick something up. I fortunately had a small health insurance never used for twenty years that has saved me from the horrendous NHS 3 year waiting list. We always kept it going for a rainy day...

[DorsetLady PMRGCAuk volunteer in reply to oscarandchloe]

Rainy days come in all sorts of guises…

[Yorksman in reply to PMRpro]

When you say that most of the adverse effects of Pred can be mitigated and even avoided when you know how - can you tell us how please?

[PMRpro Ambassador in reply to Yorksman]

A lot of the advice is to be found in the FAQs. If I wrote everything we know about mitigating pred effects that has already been said on this forum I'd be here all day so I suggest you post a new thread asking which particular things affect YOU - no-one gets all the side effects so I could write about things that aren't relevant, And others won't see your question here, only me.

The primary thing to do is cut your carbs - especially processed ones and added sugar, That helps with weight gain and the threat of steroid-induced diabetes.

[Yorksman in reply to PMRpro]

FAQs is an excellent source of information, however I can only find two references to Pred, nothing about mitigating the effects. Is it possible to search for your previous posts about mitigation?

[DorsetLady PMRGCAuk volunteer in reply to Yorksman]

There will be answers, but there are a lot of posts on here (30,000 at last count) -as PMRpro says best to raise a new Post and state what side effects you have -then you will get specific answers.

[PMRpro Ambassador in reply to Yorksman]

If you go to my profile you will find all my past posts. But there are thousands and all about different topics,You can also use the search HU function, it might help.

It is important really that new people don't just read their own posts and replies but also those of others because all too often you will find your questions asked and replied to in other threads. Be specific in a question and you will get answers

[DorsetLady PMRGCAuk volunteer in reply to Yorksman]

Ditto to PMRpro’s comments- new post for all to see- we are two of the very few who read every reply…

[DorsetLady PMRGCAuk volunteer]

You could try a couple of 0.5mg steps down using a slower taper plan (if you aren’t already, but think you might be) to get to 4mg and stay there. But honestly it might be more sensible to stay where you are until after second op… why rock the boat when things are good - plus two ops within 6 months may take more out of you than you realise.

I had similar timescale with no issue - but gad been in remission for 2 years.

Good luck whichever you decide…

[piglette]

I had to increase after both my hip ops, so I would do what DorsetLady suggests, so at least you start from a slightly lower point if you have to increase. If you don’t that is good news too. That is fantastic you have got a date for your hip op, they sound like hen’s teeth at the moment.

[Yorksman]

Many thanks, this is really helpful.

[1951grumpa]

One option is to search the NIH National Institute of Health library. In the search box put in Low dose prednisone. And go from there. It’s a wealth of information.