Re changing Pred Dosage

[Lauterbach]

Hi, Still relatively new to all this and I am currently on 12.5Mg/day for 2 weeks with the Doc then dropping me to 10Mg for a month after that. Now I see the advice here about upping the dosage if someone gets a flare, but I only have the dosages prescribed by the Doc. If I suddenly go back from say 10 to 12.5 then I am going to run out of Pred before the prescription is renewed. Do I have to go back and tell the Doc to up the dosage and if so what if he doesn't take "my advice". I'd like to know how other folks cope before I face the same issue. Many thanks

[PMRpro Ambassador]

Don't assume that everyone jumps up and down their dose willy-nilly because of a flare. It is important to learn about your personal PMR and response to pred and not to try to reduce in too big steps and allow time between drops to be sure that the new dose is still enough. And it is also important to adjust your activities to avoid things that make the symptoms worse - that is also a possibility, not just that it is a flare of the disease. Don't fall into the trap of thinking pred is a painkiller - it does relieve the pain but that is because it combats the inflammation of PMR and there are other causes of pain ...

[Lauterbach in reply to PMRpro]

Many thanks for a quick response

[DorsetLady PMRGCAuk volunteer]

This is something you need to discuss with GP. Some are willing to let you manage your illness, if they think you are knowledgeable enough, but that isn't usual until you have had PMR for some time (yours is still early days) - others aren't.

It should be a two way discussion, and as s/he's the person prescribing the meds, they need to know... your medical record also need to be updated.

What I would also say in discussion with GP, it might be worth asking for 1mg tablets as well - you may well find 12.5-10mg drop doesn't work - whereas 12.5-11 or 11.5mg does!

[Lauterbach in reply to DorsetLady]

Hi DL, Many thanks for the reply, I assumed that it would need to be in discussion with the Doc, but some of the posts seem to be taking independent action

[DorsetLady PMRGCAuk volunteer in reply to Lauterbach]

Yes, but I think (and hope) that's because they have authority to do so.

When I changed GP surgeries (after hubby's death and 18 months into my GCA journey) my new GP (very experienced and sensible) said -

"you know your illness and body better than I do, so I'll leave you to manage your GCA, just get regular blood tests, and feel free to speak to me any time you need to"..

worked for both of us, and fortunately I didn't have to increase Pred as no flares.

[Lauterbach in reply to DorsetLady]

Sounds like you have a great doctor. I've been with mine for over 20 years and have great confidence in him. I was seeing him for prostate reasons, but asked him if I could also discuss my "muscle pain" (I had never heard of PMR). He stopped me part way through my spiel, asked me 2 questions: did it come on overnight and was there unintended weight loss and bingo I was on 20Mg/day Pred. So it seems he is well up on PMR and knowing him he's likely to be reasonable on dosage change

[PMRpro Ambassador in reply to Lauterbach]

Sounds promising!

[piglette]

As I have been taking pred for some time it is now on repeat prescription on-line, so I order it as I need it. Initially if you have trouble reducing go back to your doctor and tell them the situation.