Should I increase my Predisolone?

[Loyd]

I was on 15 mg pred from when I was first diagnosed with Polymyalgia over a year ago and my doctor has been trying to reduce it. I think too fast because I have had a major flare at 8mg and kept getting worse until I came down to 3mg. Was really suffering. Now on 12 mg and some improvement but still a lot of pain. My question - should I stay and hope for improvement or increase dose? If increase - to what level?

[DorsetLady PMRGCAuk volunteer]

How long have you been on 12mg - you may need to give it a bit longer.

But I would question why you’ve continued to reduce even though you’ve been in pain. You really should have sorted it when you first had problems- now you’ve (And your doctor) have let it get completely out of control.

Unfortunately you may need to go back to 15mg and start the whole procedure all again.

Whatever dose you manage to get relief- stay there for a month before you try reducing again - and in future don’t reduce when you have symptoms.

[Loyd in reply to DorsetLady]

Thank you so much for replying. I now totally agree and will be taking things very easily and slowly from now on! My doctor was worried because of the risk of Covid which was why she wanted me off them. I don’t know whether to discuss it with her or just increase it myself to 15 mg. She wanted me to start at 10mg.

[DorsetLady PMRGCAuk volunteer in reply to Loyd]

Your GP might have wanted you off the steroids, but to be honest, if your PMR is still very much alive, which yours obviously is, it’s not going to work - as you unfortunately found out.

She will probably panic if she thinks you’re going back up to 15mg, but she will need to know somewhen as she’s going to signing your prescriptions.

As the situation is now, can you take the coward’s way out and leave a telephone message, or if your surgery has the facility of eConnect (look at their website - it’s like a more secure email system) advise her that way.

[Loyd in reply to DorsetLady]

Very helpful. I’ll do that. Many thanks again.

[Loyd in reply to DorsetLady]

Hello Dorset Lady again. I have decided to increase my pred from 12mg. There has been no further improvement in the last few days. I have just read on here someone’s doctor first put them on 20mg for 5 days then reduced to 15mg for 3 weeks. I am wondering if this would be worth a try or should I just increase to 15mg and hope that’s enough to get me stable and pain free? Appreciate your thoughts.

[DorsetLady PMRGCAuk volunteer in reply to Loyd]

Actually that’s probably a very good idea - do you have enough medication?

Should sort it out.

Please let us know how things go.

Not sure if you’ve seen this - might help - healthunlocked.com/pmrgcauk...

[Loyd in reply to DorsetLady]

Oh thank you! Yes I have enough. Will let you know.

[PMRpro Ambassador]

Not too fast - more likely too far.

If you started to have symptoms again at 8mg that is where you should have stopped then - it didn't mean you won't get lower without symptoms, you just needed more time.

It is all very well telling the patient to "get off pred" - if they have PMR the only means available to manage the symptoms is pred. But it wasn't going to help with Covid-19 - you still had the history of pred use and the illness, that wasn't going to change, and they both posed potential problems if you got the virus.

I agree with DL - you probably need to start over again from 15mg and the bad news is that you may well struggle to get things under control again. I don't know if you have seen my posts about "Managing PMR without steroids - not a personal choice ..." - but you will notice a theme in the responses: it is all too easy to let the inflammation get out of control and then it is difficult to sort out.

[Loyd in reply to PMRpro]

Yes I really regret these last few weeks. I was doing brilliantly on 10mg. I’ll give another couple of days and go up to 15mg for a month. You have both been so helpful and I understand the disease better now. Many thanks.

[Loyd in reply to PMRpro]

I have decided to increase my pred. I am wondering if a short sharp increase from 12mg to 20mg for 5 days then 15mg or just try going up to 15mg and hope it’s enough to get me stable again. Would appreciate your thoughts.

[PMRpro Ambassador in reply to Loyd]

You really should discuss this with your doctor if you are going to do more than a few days at a higher dose. A few days at 20mg and back to 12mg is less of a backtrack than returning to 15mg for a month. But you have to find which works yourself.

[Loyd in reply to PMRpro]

Thank you PMRpro. If I do the 5 days at 20mg and was fine do you think it better I then drop back to 12mg in one drop or come down 2.5 week over 3 weeks? Or try the 20mg for the 5 days and then drop to 15mg in one step and go from there? I do not have the confidence in my doctor to discuss this. She is very nice but does not seem to know much about PMR.

[PMRpro Ambassador in reply to Loyd]

After just 5 days at 20mg you should be fine to drop back to 12mg in one step - but I can't say how you will react. If it makes you feel happier to a couple of days at 15mg on the way down - but it shouldn't be necessary.

[Loyd in reply to PMRpro]

Very helpful thank you again so much. 👍👍

[piglette]

Is your doctor also suggesting to patients that if they have cancer they should not have chemo in case they get Covid-19? I cannot believe what some doctors suggest. It is better for us to suffer in intense pain?

[Loyd in reply to piglette]

Not sure the average GP totally understands PMR sadly.

[DorsetLady PMRGCAuk volunteer in reply to Loyd]

Very true!