How long until I can give up the Pred?

[Trish10]

I'm new on this forum but was diagnosed in April 2018 with PMR. I started on 15mg Prednisolone and am now at 2.5mg daily. I still want to get to a point where I don't need any steroid intervention and can stop all the medication that goes with it for side effects.

My problem is that as I reduce the Pred I get an uplift in general arthritic pain, back, knees, toes etc and a drop in energy, although the PMR symptoms in my shoulders do not really return. I wonder if I'm just using the Pred at this stage to mask the other pains and should push to reduce it away altogether.

Anyone else with the same issues, and how are you handling it?

Trish

[123-go]

Hi Trish. I was diagnosed with PMR in Feb 2018 and am also currently on 2.5mg Pred but the similarity ends there as I also have GCA/LVV. I am in no hurry to reduce from my present dose although I have no pain. When I do reduce it will be by miniscule amounts over a period of time and I'd be happy to stay on half mg - 1 mg for as long as it takes.Did you have arthritic pain before your PMR diagnosis? Steroids are also prescribed for arthritis so I'm wondering if the fact that you're experiencing pain now could be that 2.5mg isn't enough to control the PMR inflammation.

[Trish10 in reply to 123-go]

Hello 123-go - thanks for your reply. I did have general arthritic pain prior to PMR diagnosis and was delighted that the PMR treatment helped with that pain too. I think the arthritis has worsened and the PMR might have gone away for now! I'm going to try 2.5/2mg for a couple of weeks and see how I get on - it always takes my body a bit of time to adjust to the reduction. I just long to be medication free.

[123-go in reply to Trish10]

It's your choice, Trish, but don't try to rush any reduction.😏 "PMR pain in my shoulders 'does not really return'" suggests that you do have some PMR pain. Take care.

[PMRpro Ambassador]

How long to no pred? How long is a piece of string???

How free of pain were you on the starting dose? That is your guide and you shouldn't feel worse at the end of a taper step than you did at the beginning. Pred will only relieve pain due to inflammation - and if you get other pains that respond to ordinary painkillers they are less likely to be due to PMR which doesn't respond to them, usually at least.

The median duration of management of PMR with pred is just under 6 years - whatever your doctor may have said about 2 years. Only about a third of patients are able to get off pred in 2 years. It isn't unusual for patients to find 2mg, even 1mg is enough to keep the symptoms suppressed but reducing to zero results in a relapse - and prof Dasgupta told us in a webinar a few months ago that he often keeps patients on 2-3mg indefinitely as it prevents relapses and a return to higher doses of pred. There are virtually no adverse effects associated with such low doses and anyway one problem from here on is the return of relliable adrenal function which can take a long time - even up to a year after fully coming off pred.

That isn't to say you won't get lower - but to say don't rush off and don't be in denial that maybe the underlying autoimmune cause of the symptoms we call PMR is still there in the background.

[Trish10 in reply to PMRpro]

Thank you for this interesting reply - I'll do a little more research around the information in your penultimate paragraph. I'm also relieved to hear that it's normal for my PMR not to be resolved already, given that my doctor did tell me 2 years!

[PMRpro Ambassador in reply to Trish10]

There is a link to the webinar somewhere.

[DorsetLady PMRGCAuk volunteer]

Short answer - when your illness has gone into remission . Another short answer - agree with PMRpro.

[Nolsie]

Hi Trish, I find your post interesting as I am in an almost similar situation. Diagnosed Nov 2018, took me most of this year to get from 5 to 2.5mg. Since dropping from 3.75mg to 2.5mg (guessing game as we only get 5mg tablets in my country) I struggled with the "normal" pmr pain, especially stiff shoulders, but also sore finger joints on certain days, also low energy. Do manage to do some mild exercise most days.

I wonder how much discomfort one should endure during tapering and what are the health risks of trying to be brave and holding out while getting/trying to get to the next lower dose.

[PMRpro Ambassador in reply to Nolsie]

None if it is a return of the PMR symptoms. You are never reducing the dose relentlessly to zero come what may - you are looking for the lowest dose that gives the same level of relief that the starting dose did. The underlying autoimmune cause of the symptoms we call PMR does usually burn out and go into remission sooner or later but for half of patients it can be anything from a year or so (only 1 in 5) to just under 6 years. The rest of us may have it much longer and a very few of us never get rid of it.

There are potential risks of letting the inflammation just run but the primary risk is that once you get to a dose of pred that isn't enough to clear out all the new inflammation that is created each day in the early morning the left over inflammation will slowly build up until it is at a level that is enough to cause the same level of symptoms as you had at the start. It may mean returning to a much higher dose - and sometimes it is much harder to get under control again.

Pain that appears immediately after changing the dose but then improves over the following week or so is OK. But pain that appears after a short time and then gets worse is not - that is the sign you are at too low a dose.

[Nolsie in reply to PMRpro]

Thank you for your reply, PMRpro. You really have the ability to explain things in a clear and understandable matter. As seem to be the case for so many of us, this forum is often my first and most reliable source of advice when I feel alone in my battle with this condition.

I will increase my pred to 5mg for a few days and will see how my body respond.