PMR disease

[Oldies60]

I was diagnosed with pmr in February. I'm on prednisone 7.5mg, methotrexate 12.5mg and just took my first injection of kevzara. Praying I can get into remission quickly.

[SnazzyD]

Hello and welcome from the UK! We are happy to help or listen and you’ll likely get more replies from this side when the UK wakes up. I just so happen to be knocking about at 3am. How is the treatment going?

[Oldies60 in reply to SnazzyD]

I can't seem to get below 7,5 mg of prednisone. I was alternating between 7.5 and 5mg. When I went to just 5mg I could barely move again,

[PMRpro Ambassador in reply to Oldies60]

That's really not a good way to reduce from 7.5mg. Below 10mg the recommendation is for 1mg at a time and even that is too much for many patients and they do 1/2mg . Alternating with such a big difference seems to confuse the body, it doesn't know where it is. And while 7.5 may be too much and 5mg too little - the question is, is it 7 or 5,5mg that you really need?

[Oldies60 in reply to PMRpro]

Do you think going from 7.5 to 6mg might work for prednisone taper?

[PMRpro Ambassador in reply to Oldies60]

Not really - that is still a very big change in dose. 7.5 to 7 makes most sense. It may SOUND slow - but as we keep saying here, it isn't slow when it works.

The smaller the step down, the easier it is for your body to adjust. At this stage your adrenal glands have to wake up and start to provide a top-up for the decreasing dose of pred so that body still has the physiological amount of corticosteroid available for essential functions in the body.

[Oldies60 in reply to PMRpro]

I will try your suggestion if I have 1mg pills. Otherwise, I will call my dr for some. Thank you.

[SnazzyD in reply to Oldies60]

The trouble is with big swings like that at this stage is that when your body reacts you have no idea if it is just Pred withdrawal, a flare or that your adrenal glands can’t yet make up the shortfall of Pred with their own cortisol. All those can feel very similar eg, aches and fatigue. As PMRPro says, if you flare you have no idea if your lowest effective dose is in that 2.5mg range. All you can do in that instance is go back to 7.5 when if you had reduced in smaller steps you will have known to more accuracy where it is. Personally that kind of swing would have caused intolerable withdrawal which is the body as a whole having to readjust to a lower level of a drug that affects every fibre of it.

[DorsetLady PMRGCAuk volunteer in reply to Oldies60]

As other have said… not a good way to reduce… much smaller reductions required at these doses.. for PMR and adrenals..

Some doctors don’t seem to realise how much such a significant difference can affect their patients… unfortunately 🤦🏻‍♀️

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

Maybe have a look through this intro post -

healthunlocked.com/pmrgcauk...

As for getting into remission quickly, that’s really up to your PMR to decide.. 😊. And a bit more info on your bio would be good please.

[Oldies60 in reply to DorsetLady]

What do you need as far as my bio?

[DorsetLady PMRGCAuk volunteer in reply to Oldies60]

Have a look at this link.. and it does really help us to understand your illness if/when you ask questions -

healthunlocked.com/pmrgcauk...

Many thanks

[PMRpro Ambassador]

Hi and welcome.

Getting into drug-induced remission is fairly quick but none of thse drugs have an effect on the underlying autoimmune disorder that causes the symptoms they call PMR - how long that lasts is an unknown and there is not much you can do to shorten it.

[MiniSpec]

You can always buy a pill splitter from your local pharmacy. They cost around $4 - $5, and you can use them to cut an uncoated Pred pill in half.

From what you've written you are taking 2.5mg pills. If these are non-coated (have a dull white surface) then you can cut them in half, thus giving you a 1.25mg dose. However, if they are the shiny ones then they are coated and you can't cut them.

Assuming you are taking the non-coated pills then cutting them in half will allow you to reduce the change in dosage to nearer the 10% reduction you should be aiming for. Any more than 10% is likely to cause the kind of symptoms you've been experiencing.

So for instance, as you were at 7.5mg, you should try to reduce by 0.75mg or less. However, as you can't do that very easily with a 2.5mg pill, ask your doctor for 1mg tablets instead. That way you can cut a 1mg tablet in half and thus reduce by 0.5mg, which is less than 10% of your current daily dose.

As PMRpro has said, the smaller the change, the more likely it is to be successful, as your body has more chance to adjust to the new dose without going into steroid withdrawal, or suffering adrenal insufficiency.

[Oldies60 in reply to MiniSpec]

Thank you. I don't have much luck using a pill splitter! I will call my dr tomorrow and ask for 1 mg pills.

[DorsetLady PMRGCAuk volunteer in reply to Oldies60]

The tablets don’t have to be exact halves - just near enough -and as long as it’s a smaller dose that you are reducing from then fine..