prednisolone

[Sheenalady]

What would the affects on you body if you stayed on a very low dose of 3mg steroids instead of going on any other drug

[DorsetLady PMRGCAuk volunteer]

Very little, but what other drug have you been offered?

There's nothing much on your bio apart from saying you had to go back to 40mg in May 2022, and last post you wrote 2 years ago you said you were on 1mg.

A bit of info on what has happened between May 2022 and now would be helpful - particularly tapering regime - for us to help you..

[Sheenalady in reply to DorsetLady]

I have been tapering down very slowly as Iv have a few relapse and have PMR now

They even tried me on Sulfasalazine , Hydroxychloroquine & methotrexate, all did not agree with me

Should of been off steroids January 2023.

Can’t seem to get below 1 1/2

Stable at 3

They want to try me on methotrexate again at the end of July and I’m really scared, I don’t want to go on it, the others don’t agree with me that’s why I wanted to know if you can stay on a low dose steroids.?

[DorsetLady PMRGCAuk volunteer in reply to Sheenalady]

Really don’t see any point or advantage in adding in MTX when you are such a low dose. And as if didn’t suit you previously why does anyone think it’s going to this time.

When you try to get lower what effects are you getting? ..and have you tried a really slow tapering plan -like either one of these -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

You may find that left to do it in your time and not being pressured, it will happen.

As for “Should have been off steroids January 2023.” - unfortunately your illness doesn’t know that….and PMR can last a lot longer than many Rheumies acknowledge..

As PMRpro has said if keeping patients on a very low dose is good enough for Prof Dasgupta who is a leading light in PMR/ GCA then it should be good enough for your doctor .

Do hope you can get a sensible medical person to listen to your wishes. Your treatment should be a joint decision -not an imposition by the medical team.

[PMRpro Ambassador in reply to Sheenalady]

"Should of been off steroids January 2023"

There is no fixed time to be off pred. Nothing anyone can do will make the PMR fade and burn out to a timetable and when you taper the dose you are not heading relelentlessly to zero, you are looking for the lowest effective dose, the lowest dose that gives the same result as the starting dose did. Unfortunately, many doctors still believe the old-fashioned idea that PMR is a benign and simple disorder that burns out in 2 years or less. The true experts know that is not the case and that while some are able to get off pred in 2 years or less, the sooner you get off pred, the more likely you are to relapse later, Remaining at a low dose as you are at now reduces the likelihood of relapse. For a patient at such a low dose adding in a DMARD is adding another layer of adverse effects and there are studies by immunologists that have found combining 2 or more immunosuppressants increases the long term risks of developing other disorders, including cancers.

A groundbreaking paper has been published recently - it would be worth providing your doctors with a copy:

ard.bmj.com/content/early/2...

They mention the use of MTX and Actemra - but also say "Notably, neither drug has so far been associated with a reduction in GC-related adverse outcomes."

and "Even though several drugs may help to reduce the cumulative GC dose in both GCA and PMR, so far none have been proven to reduce GC-related adverse outcomes."

Which does beg the question as to why they would be used for patients on a low dose already. If using one of the DMARDs makes the patient unwell - where is the justification.

They also say "Management of GCA and PMR should be based on shared decision making between the informed patient and the physician." If you are unhappy - and you have good grounds having had it before - you must be listened to.

[Nagswoman in reply to Sheenalady]

MTX just made me feel permanently sick so I stopped taking it. New rheumo put me on Leflunomide. Hair was falling out so dose halved. OK now. I am down to 3 1/4 mg preds and feel great. I was told that I will probably be on a low dose of preds for life as I have taken them for 7 years now with many tapers. This one is working.

[Sheenalady in reply to Sheenalady]

I had a big flare on 1st December 2021 have been tapering very slowly. I was only on MTX for 2 /3 weeks had what they thought was a reaction and stoped then a week later I had my flare, I have also got Rheumatoid arthritis.

[PMRpro Ambassador]

Not a lot. I've been on well above 10mg for most of the last 14 years and it has done me no harm.

Professor Dasgupta, the UK guru on GCA and also expert in PMR and pred use, told us 3 years ago that he often keeps patients on 2-3mg pred long term as it reduces the rate of relapses and does little or no harm. He also, like a lot of other top rheumies, says that adding another drug to get patients off such low doses of pred is counterproductive because a low dose of pred has far fewer adverse effects than the other drugs are likely to have.

[piglette]

The drug for PMR is steroids. You would go onto another drug if you had another illness.

[Kingfisher489]

I’m not too sure. I recently came of Prednisilone altogether but shortly after I has a flare up and now back on 8mgs. Will take me 8 months to come off again. I suppose steroids weaken our immune systems and can contribute to other long term problems.

[PMRCanada]

I’m on MTX (was stuck at 9mg of pred for over a year), but I wouldn’t have started it if I was ok at 3mg pred, especially if I had tried MTX previously and it didn’t agree with me.

You have tried it their way by taking 3 additional medications that resulted in negative outcomes (assuming side effects). Perhaps it’s time to do it your way and stay at low doses and slowly attempt to lower your pred dose (not any easy task at this stage of tapering, but doable over time with patience, for some patients).

[Ancestry1234]

I am not sure why you would go on to another drug as prednisolone is the only one for this condition as far as I know. I have tapered down to 2mg over 5 years with ups and downs but at the moment my body appears to be happy with this.There is no alternative to prednisolone as far as I know. You need to listen to your body.