5mg lifelong dose of pred

[Gottarelax]

My mum has been on pred for PMR (with two occurrences of GCA 5 yrs apart) for about 40 years. She had a break of 2 years in remission after being on pred for 3 years. Then it all started again and since then has never been able to go completely off the steroids. From her second start about 30 years she's been up and down on the steroids but never referred back to a consultant until moving surgery this year. Anyhow, the consultant seemed pretty good and is suggesting that she try to reduce from her current 7mg dose slowly to 5 mg. He says that since she's been on so long, he doubts that she'd ever get lower.

Interestingly though, he said that 5 mg is a dose that is well tolerated because it's in line with the natural quantity of corticosteroid so the body could regulate it's own production to prevent harm to the body. Therefore he isn't concerned if she can keep at that dose. If symptoms return as she reduces he is considering a supplemental immunosuppressant such as methotrexate to counterbalance the reduction in pred. That sounds quite reassuring to me...but what do the experts think?

[PMRpro Ambassador]

If she is doing well at 7mg and he doesn't expect to get under 5mg - suggesting adding MTX for the sake of 2mg pred seems a bit silly and I wouldn't be happy. The potential side effects of MTX compared with 2mg pred seems a bit extreme. There is no guarantee it will work anyway.

[Gottarelax in reply to PMRpro]

Good point. I’m on MTX for RA and although it’s not really working perfectly, I do tolerate it well so didn’t consider the side effects. Her rheumatologist is also my rheumatologist and fortunately, he seems to be someone that listens to what the patient feels about treatment courses so I think he will be open to discussion on this.

[PMRpro Ambassador in reply to Gottarelax]

MTX is "gold standard" for RA as it is a DMARD, it changes the progression of the joint damage, so it is the place to start. But PMR isn't RA, not even related as it is a vasculitis and not arthritis. For a small cohort of PMR patients it works very well but for the vast majority it gets them down a couple of mg at best and at worst is quite unpleasant.

[Grammy80]

I'm no expert but have had GCA since 2019. I'm now at 3mg, but have been on Actemra, TCZ, since October 2019. Also, I'm from the States but from what I have read from all my UK friends....the fact that she has had flares and been on pred for so long...have they considered TCZ as a steroid sparer instead of metho? My rheumy here doesn't put too much stock in metho. I've had not side effect or issues with TCZ...worth a try if approved.💞 (I'm 82)

[PMRpro Ambassador in reply to Grammy80]

Not likely to be easy to get in the UK. It is relapsing they accept - and I don't think even it it is worth it for getting down from 7mg to 5mg. After all, it only works 100% for half of patients.

[Grammy80 in reply to PMRpro]

It sounds to be like she has relapsed...."two occurrences of GCA in 5 years" ? I know I don't know the UK system ...but if he is going to put her on metho, why not Actemra? From a few of the ladies I've talked with metho leaves them out of sorts...Actemra doesn't give me any issues at all. My rheumy calls TCZ the 'workhorse' treating my GCA and I will remain on it even if I get to zero pred. I know you will explain all this to me and I really appreciate it...💞

[PMRpro Ambassador in reply to Grammy80]

Possibly but if the 40 years of pred for PMR is correct the likelihood of getting off pred altogether now is very low, the rheumy accepts that - and she is already at 7mg under her own steam, I wouldn't add TCZ for the sake of 2mg.

[pammy_hyland]

I'm on a maintenance dose of 4mg's and have been for over 10 years now ...

[Amkoffee]

I developed adrenal insufficiency due to my pred use and I take hydrocortisone now. But my hydrocortisone dosage is just a tiny bit more than the equivalent to 5mg prednisone. However, I find the hydrocortisone easier to use because I can spread it out throughout the day easier than trying to spread out a 5mg prednisone tablet.

[PMRpro Ambassador in reply to Amkoffee]

The expert view has become that 1x daily pred is as good as 2x daily HC which is what they usually use and may eliminate crises

[Amkoffee in reply to PMRpro]

Comments on my AI group seem to favor HC over pred in most cases. However I have learned that pred takes longer to get into our system but has a longer half life. HC works quick but the half life is also quick. So for a crisis it would stand to reason that hydrocortisone would be the first choice. And during my most difficult crisis I found I was having to take hydrocortisone so frequently that when I took prednisone I didn't have to take it as frequent as I did the hydrocortisone. But everybody's body reacts differently to a lack of cortisol. In what works for one person may not work well for another.