duration of PMR and steroids

[Bennijax]

what is the longest period of time PMR patients have had to be on steroids?

[SheffieldJane]

That is an impossible question Bennijax. There are people who have been on steroids well into the teens in years, and this has given them quality of life. There are people who are advised to stay on a small maintenance dose for life. I hang on to the study that found that the median period was 5 .9 years, when I feel that I am failing at 4 years. Lucky souls can get done and dusted much earlier but I believe the relapse rate is high. At least we have the hope of total remission, unlike so many conditions.

[Blearyeyed]

As SJ says , this is a , "how long is a piece of string ?" question , that we all ask early on with a new illness in the hope that we can add a bit of order to the disorientation we feel when we are newly ill.

Like our Doctors , we hope we can get a simple timetable , set in stone , stating what will happen and when, in the hope that we can follow that and things will follow a quick , organised path towards Recovery. We hope this order can help us to relax.

It's a good idea in theory , it teaches us more about the possibilities of our Condition , but it can also have drawbacks if we expect that the same thing will happen for us in exactly the way it happens for others.

Some people can get very stressed and make their symptoms worse if they don't follow the same recovery rate as others discuss , or, the progress that the Doctors with less experience of your illness expect. This sort of Pressure can end up making your Pain worse because you are Tense from trying to achieve arbitrary goalposts.

So , the answer is really that everybody is individual . The time on steroids , and to your Recovery , is based on your own body , your other health conditions , your Medical History and how Fit you were before you were diagnosed , coupled with , how well you can manage your General Health and Lifestyle to cope with PMR , your Side Effects , any other illness or Life Trauma that happens along the way , and your Pain .

There is no Failure when you look at your Pathway with PMR from this perspective , just Progress and small successes everyday to be proud of. The Calmness it also generates in your attitude to getting well also helps reduce your symptoms and ultimately improves your ability to manage your Condition and recover more quickly.

Good luck xx

[DorsetLady PMRGCAuk volunteer]

Good question,,,probably as many answers as there are patients.

Unfortunately there is no set timescale - which is why many doctors don’t like it! They aren’t in control.

One of the most quoted phrases on here - it takes as long as it takes. Not scientific nor the answer you want to hear, but true.

[jinasc]

"There is a light at the end of the Tunnel. We just do not know how long our individual tunnel is".

[PMRpro Ambassador]

To put none too fine a point on it: for life. It all depends on how old they were at diagnosis and which variety of PMR came to stay. I have had PMR symptoms for over 15 years and been on pred for 10+ years - the symptoms are still here in a flare.

How long is a piece of string? There is no answer to the longest duration. The median duration of pred management for PMR in a fairly large cohort was 5.9 years. About 1 in 5 get off pred in a year, by 2 years it is about one in 3. But 40% still require some pred at 10 years though mostly a low dose and it is not possible to say how many needed the pred for PMR and how many because of poor adrenal function.

medpagetoday.org/rheumatolo...

[Blackcatlover in reply to PMRpro]

Love the answer “ how long is a piece of string “. Made me laugh out loud. My journey is just over three years. Lots of flares when just on Prednisone. Could never get below 15 mg. I have to visit the hospital monthly for IV treatments. Wish just Prednisone did the trick for me.

[Bennijax in reply to Blackcatlover]

Blackcatlover, are the IV treatments for the prednisolone?

[Blackcatlover in reply to Bennijax]

In a way yes. I take Actemra as a Prednisone sparing drug. Before Actemra in my three years having PMR, I flared six times every time I tried to taper my Prednisone below 15mg. I’ve been on Actemra for 18 months and have only flared once when I stopped Actemra. I’m back on Actemra and tapering very slowly. I’m down to 4.5mg and doing well.

[fmkkm]

My Rhuemy tells me there is always the possibility of a lifetime maintenance dose.

[maria40]

For me, 20 years and counting. Never lower than 5mg now back up to 15mg following a flare.