Pred swap to Hydrocortisone

[Heimat15]

Just come up to 2 years on Pred. Get to 7 mg o.k. any lower and I crash. Pain back. Diarrhoea, so exhausted am bedridden. Pain in neck shoulders and hips. G.P. ( described as Rheumatologist expert at G.P. practice) said problem with my adrenal glands so now prescribed Hydrocortisone slow acting - 15 mg in morning 10 mg at 3 p.m. and to stop Pred altogether. Bit worried about stopping Pred abruptly though they said it was o.k. Anyone else with PMR know about this med swap?

[PMRpro Ambassador]

You appear to be up against the "PMR lasts 2 years" mentality. Which it doesn't - it lasts for a lot longer in at least 2/3 of patients. Their so-called "expert" in rheumatology is out of his depth, obviously knows very little about PMR and even less about pred and adrenal function.

You are not reducing relentlessly to zero - the pred cured nothing, it is a management strategy and you are tapering, titrating the dose to find the lowest effective dose - which is probably 7mg for you at the moment. That is the dose that is enough to manage the daily new batch of inflammatory substances shed in the early morning. If you go lower, some inflammation is left over and over time it builds up so the symptoms return and causes your shoulder and hip pain, standard areas for PMR to affect.

It so happens that 7mg is about the dose of pred that is equivalent to the amount of cortisol, the body's natural corticosteroid which the adrenals usually produce so the body can function properly. It is essential to life. While you are on more pred than that, the body senses it doesn't need more - too much corticosteroid is bad for the body and leads to you developing Cushingoid symptoms - so less cortisol is produced. Take the pred away and the adrenal glands must produce cortisol again - but that doesn't work like a simple light switch - more like a dimmer switch and it has to get going again. It is a very complex set-up involving several glands and hormones and it takes months to settle down - so while that is happening you have to taper the pred dose VERY VERY slowly to avoid becoming very ill.

You have probably not only overshot the dose you need to manage the PMR but are also into the realms of adrenal insufficiency. But you can't deal with either using a sledgehammer - it is a sofly softly catchee monkey approach that works here, for both aspects of your need for pred.

He thinks that by putting you on hydrocortisone it will be more successful in getting your adrenal glands to work again. Theoretically the new dose is enough to replace the 7mg pred and prevent adrenal insufficiency symptoms. What it won't do is manage any PMR inflammation anything like as well and I suspect that may get worse.

I do hope he isn't forcing you to do this today so that you have changed to hydrocortisone over the holiday period where you have little access to the GP if anything goes wrong - because the NHS isn't on full levels of staffing at any level and there are likely to be long waits for ambulances. Not to mention making your Christmas even more uncomfortable than it is probably going to be anyway.

[Heimat15 in reply to PMRpro]

Thank you so much. It didn't make sense to me at the appointment. This so-called expert has been pushing me to taper from 6 months into PMR diagnosis. Every time I've crashed. Going to stick with Pred over Christmas holiday s and will ask to see another G.P. or be referred to another Rheumatologist after then. Glad I can contact you on here for informed advice .

[PMRpro Ambassador in reply to Heimat15]

The silly person has probably ensured that you have taken more pred than you needed as well as making life unpleasant. You don't need to wait 6 months at a highish dose before tapering: you get the symptoms under control in 4-6 weeks at a starting dose of 15mg and then drop to 10mg over a further 2 to 3 months. Then 1mg at a time until you get stuck. If 7mg is what you need - you should have been on that since relatively soon after starting, Not yoyoing up and down - which will have made the whole thing harder into the bargain.

I suspect you may meet resistance from other GPs in the practice if their habit is to hand rheumy problems to this so-called expert. S/he may indeed be better informed for inflammatory arthritis but doesn't have the knowledge to manage patients with PMR which requires a sensitivity to pred use and tapering that they don't have. I suspect too that you will meet a reluctance to refer you to a rheumy. You may have to start with a private appointment to get something better.

[DrRon in reply to PMRpro]

PMRpro, with the use of your metaphors throughout your response, it is a very effective explanation and counsel. Well done and thanks. Merry Christmas.

[piglette]

PMRPro has got it in one. I hope you can enjoy the Christmas period. It does worry me how little some doctors are aware of the effect of pharmaceutical products.

[Heimat15 in reply to piglette]

👍😊

[PMRnewbie2017]

Perhaps you could print PMRPros reply to show your GP and use as a focus for future discussion? Your GP really does need to understand that different corticosteroids have differing potencies. Hydrocortisone is not used to treat auto immune and inflammatory disease because it isn't potent enough. If it was, then patients with ulcerative colitis, crohns, asthma, GCA or PMR would be prescribed it routinely, but they're not. Prednisone, its metabolite Prednisolone and in some countries Methylprednisolone is used. Fludrocortisone and Hydrocortisone have their place but not in the routine treatment of PMR.Me: Pharmacist but now retired.

PS. Having just read your post again. HC is not slow acting. It's given two or three times a day because it has a short half life and is broken down quickly.

[Heimat15 in reply to PMRnewbie2017]

Thank you for your reply. I am going to take your advice and print off as suggested, and yours. It really is so demoralizing to have this battle with the medical profession. I'm so glad to have information I can present to put forward, and also that I didn't just take the Hydrocortisone as prescribed. Particularly as I'm happily with family for Christmas I've been eager to see for a long time.Merry Christmas