Advice please

[Golfers1]

Hello, I am new to the group and have joined PMRGCAuk recently. I have learnt so much from the group and am so glad I found you. I started with awful symptoms in early February 2022 and was treated as arthritis and given strong painkillers as the headaches I was suffering with were horrendous. After a few weeks I woke one morning and was unable to move my legs properly. I saw the GP explaining this was muscle pain not arthritis joint pain but again was given higher strength pain killers cocodamol.

It took until April for me to eventually be diagnosed with GCA /PMR after I had to ring 111 and attend hospital for visual problem so not really impressed with my treatment at the GP. I was put on pred 40 mgs on a reducing dose but it was too quick and after a flare up went back to 40 mlgs. I now see a rheumatologist and am on a reducing dose and have managed to get to 4 mgs but as soon as I try to reduce I get symptoms and have to go back to 4mgs.

What I am amazed by is the lack of expertise in and advice from clinicians on the subject . My GP and rheumatologist seem to think that 2 years is the magic number and I should be back to my old self then, I have been to see a neurologist privately and it was such a relief to talk to someone who actually understood how this disease works and how it affects patients.

The advice I need is to ask you how long people stay on pred and is there a cut off point were clinicians insist you need to move to a different medication.

Thank you in advance

[DorsetLady PMRGCAuk volunteer]

hi and welcome,

The advice I need is to ask you how long people stay on pred and is there a cut off point where clinicians insist you need to move to a different medication.

How long you stay on Pred is really up to your PMR - it’s a self limiting disease - but no-one can tell you how long that might be.. could be 2 years [for some it is], could be 4 years, could be 6 or much longer… average seems to be around 4 - ish..

.. and not all clinicians insist you move to a different medication - if fact there is no different medication as such… there are medications that are used as steroid sparers which may help patients reduce their Pred easier - but they don’t replace the Pred per se.

..and if you keep getting stuck at 4mg, that is your illness telling you that’s what it requires at the moment, won’t be forever, but is for now… so may just to a break from tapering for a couple of months. When you try again, reduce by only 0.5mg a time and use one of the slower tapering plans detailed below -set out slightly differently- but the aim’s the same.

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

As you are relatively new to forum, you might like to have a look at this-

healthunlocked.com/pmrgcauk...

.. and also have a browse through the FAQs at leisure..

[Golfers1 in reply to DorsetLady]

Thank you for your reply. That’s so helpful and I will take a look at the links as I haven’t seen the slower tapering plans.

[PMRpro Ambassador]

"I need is to ask you how long people stay on pred and is there a cut off point were clinicians insist you need to move to a different medication."

How long is a piece of string? GCA lasts as long as it lasts. And it entirely depends on the rheumatologist. You start at a dose that manages the inflammation and symptoms and then taper slowly to find the lowest effective dose at any given time - the longer you have had GCA, the lower this tends to be unless you flare.

The only effective replacement for pred is Ro-Actemra/tocilizumab but in the UK its use is restricted to a year for complex or relapsing GCA at present. There is movement to persuade NICE it isn't long enough as patients are relapsing when they stop it. They may be successful - but no idea when.

Some doctors like to use methotrexate in addition to pred on the grounds it may allow you to get to a lower dose or there are fewer flares while tapering. There is very little evidence that that is the case for GCA. It may work for PMR.

[Grammy80]

So glad you are here....it is a saving grace, isn't it? Like many, my GCA went undiagnosed for nearly a year...so I agree the lack of knowledge among GPs is downright shocking...I'm in the States, and it is no different. Visual issues sent me to the ER and then to a rheumatologist. Then I was in good hands. Since 2019, I have been on Pred and Actemra and am now down to 1.5mg per day...but who knows, it may change. It has been a roller coaster, and I think that is just the way the disease goes...your body will let you know if you are on the right dose. I wouldn't care if I wind up on a maintenance dose as long as I felt well. Give yourself time and listen to your body. If I get to -0- I know my rheumy will keep me on Actemra for some time.

The forum also gave me the confidence and knowledge to speak up to my doctors too. In this circumstance, slow and steady comes out the winner. My best and welcome.💞

[Viveka]

I started pred for GCA in March 2021: at 3 years am now down to 1 mg and I intend to take quite a few months to come off completely (fingers crossed).

My rheumy told me that a few people are ok in a year, some two years, some three, some four and a few longer: Prof Hughes, forum's go-to expert.

Below 5 is a non toxic dose, so you are out of the 'danger zone' so to speak. There is no point adding other meds of dubious worth at this low dose. (I think this will tend to be a general view in rheumys.

My experience is that I had incidents so had to go higher, but I never got stuck at a particular level. Have you looked at the forum's slow tapering plans to see if you can slowly ease under four? My personal favourite is 0.25 drops, but a more sneaky approach may be better - once symptoms are good and stabilised.

[PMRpro Ambassador in reply to Viveka]

"I think this will tend to be a general view in rheumys."

Unfortunately not. I have heard of rheumies wanting to add MTX at 2mg!!

[Viveka in reply to PMRpro]

Appalling, and people who don't have the knowledge will go along cause doctor says.

[PMRpro Ambassador in reply to Viveka]

Exactly. Good rheumies - like Sarah Mackie - don't have such daft ideas. She said to me once that no-one would suggest MTX to a patient under about 7mg. I just laughed - she was horrified.

[MojitoQueen in reply to PMRpro]

Gosh … my Rheumy put me on MTX when I was two years into my PMR and on 4mg of Pred but I think it was because I was also one year into having also been diagnosed with RA?

[PMRpro Ambassador in reply to MojitoQueen]

If you were diagnosed with RA then MTX was the correct approach. It is the first line medication for RA pretty much all over the world and has been for over 30 years. It is what is called a DMARD, a disease modifying antirheumatic drug. It changes the effect RA has and is probably the biggest thing that has reduced the disability experienced as a result of having RA and kept a lot of people out of wheelchairs.

[MojitoQueen in reply to PMRpro]

Thank you so much for that reassurance.

This site and you experts are just awesome … you provide so much advice & expertise that is sadly lacking from our GPs and Rheumies … I’m utterly grateful to you all!💕

After 2.5 years in Pred, I’m now SNDS tapering from 3mg to 2.5mg .. fingers xd that the MTX helps me get even lower. Can’t thank you & DL enough! 😘

[PMRpro Ambassador in reply to MojitoQueen]

We've all been there and walked the walk - doctors only usually know the theory which isn't very real life! I know a rheumatologist who has been diagnosed with an inflammatory arthritis and she says it has totally changed how she relates to patients.

[MojitoQueen in reply to PMRpro]

Oh I’ll bet!

I feel very fortunate, my GP is happy to leave all my meds to my Rheumy who, thank goodness, told me that PMR ‘never goes’, so I know there’s no pressure to have to wean of my Pred before I’m ready. Thanks to you & DL I now know that I’m can just aim (in my own time) to get to a dose that gives me a pain free life , which is not necessarily zero mg. 👍

[PMRpro Ambassador in reply to MojitoQueen]

Well - depends how you look at it. I know loads of people who have got off pred - for most the PMR symptoms have never returned, A few have had it twice - and got off pred a second time too!

[MojitoQueen in reply to PMRpro]

I live in hope!

Thanks for all you guys do to help us! 💕