Should I take Prednisone

[Mutzy]

I am 56 yrs old and have only just been diagnosed with PMR in the last couple of months . My bloods show inflammation but at present my GP says it’s not to bad and has advised that I try to manage on NSAIDS. I take 400 mg twice a day and seem to be Ok . I am trying to keep up with exercise daily walks and yoga stretching and am managing ok . My concern is that I can’t keep taking NSAIDS and all I am doing is prolonging the time when I have to start on Prednisone .Also what is the lowest dose of Prednisone you can start on ? Thank you

[SheffieldJane]

Remembering my early days of PMR, I just know that the only drug that gave me relief was Prednisalone and it was pretty spectacular. I also know that with PMR symptoms rule, blood test results cannot be relied upon. The usual minimum start dose is 15 mgs. Once your symptoms settle the aim is to taper down gently to the lowest dose that gives you relief.

[PMRpro Ambassador]

If you have a read of the potential side effects of NSAIDs you might find the prednisone ones more palatable! What NSAID are you taking?

PMR requires management with pred for a median duration of just under 6 years. Some take less time, some take even longer. In my experience 4 to 5 years is very common for both PMR and GCA. I had to manage 5 years without pred - and have been on pred for well over 11 years and nothing would persuade me to go back. I'm unlucky - but it does seem that people who weren't diagnosed and put on pred for some reason have harder journeys further down the line.

It isn't a case of the lowest dose you can start at - you don't know until you try. The 2015 Recommendations for management says "the lowest effective dose in the range 12.5-25mg/day" so what usually happens is you start with 15mg - one charactereistic of PMR is that it frequently responds to 15-20mg very dramatically so some doctors see that as confirmation it is PMR rather than an inflammatory arthritis which can also cause the same symptoms without any specific blood markers. It may not be quite enough though - it isn't wrong to try a bit more to see if the result is better. Then you taper the dose slowly and in small steps to find the lowest dose that works for you - called titration and a common process for many drugs where there is no specific dose. It may take time - it all depends how severe the inflammatory process is and on how much pred you absorb taking it orally, it can vary from 50 to 90%.

ard.bmj.com/content/74/10/1799

This

healthunlocked.com/pmrgcauk...

is my story of PMR and no pred. not a good idea - really not.

[Mutzy in reply to PMRpro]

Thank you so much for such a thorough really helpful response . I have taken all your comments on board and am off to see the rheumatologist tomorrow . What an invaluable group this is !

[SnazzyD]

The accepted approach is to go high, sort out the inflammation and then reduce to the lowest dose that work for you, which actually could be quite low for you. Given that PMR is a long term condition and long term non-steroidal anti-inflammatories are not without their problems.

healthline.com/health/side-...

I’d like to know what length of time the GP considers it ok to have NSAIDs for and when the cut off point will be when they decide it’s time for Pred. I would also consider what is so bad about low dose maintenance Pred when your quality of life is not what it could be. Struggling along taking a drug which isn’t risk free may not be better than feeling a lot better on a drug with known side effects nearly all of which can managed. In fact low dose Pred isn’t associated with much at all.

[Mutzy in reply to SnazzyD]

Thank you SnazzyD such great advise . The doctor rather vaguely said that is was ok to stay on NSAIDS long term but wasn’t sure how long it would be . You are right I still have horrible symptoms even with NSAIDS and feel like I am crawling along so why not start on Prednisone ? Because I have only just been diagnosed I am still very much feeling my way so all of your advise is invaluable .

[piglette]

If the NSAIDs are helping well, there is the possibility it is not PMR, as steroids seem to be the gold standard for PMR and nothing else really helps much.

[Mutzy in reply to piglette]

Hi , they are not really helping well , they just take the edge off the pain, but useful thought

[piglette in reply to Mutzy]

Can you aak to have a week’s trial of steroids? Do you think your GP would agree?

[Mutzy in reply to piglette]

Yes good idea , I’m sure he would I will ask

[piglette in reply to Mutzy]

Good luck

[PMRpro Ambassador in reply to Mutzy]

A week MIGHT not be enough - some people do need a bit longer - especially if their starting dose is not really high enough.

[Mutzy in reply to PMRpro]

Ok got it thank you

[GOOD_GRIEF]

You need to find another doctor. NSAIDs aren't going to manage your PMR. And untreated PMR often leads to GCA, a much more serious condition that can lead to sight loss and stroke.

Unless you are of really diminutive stature, you should be started at a 15mg per day dose, and remain on that dose for at least 2 months before attempting to taper. No step in your taper should be a reduction of more than 10%, and each step down should be sustained for at least 4 weeks before attempting to reduce further.

Your goal is to find the lowest effective dose that yields little or no pain, and further reductions should not be attempted if you feel discomfort. You may feel a return of symptoms in the first few days after each reduction, but it should resolve in 7-10 days. If your symptoms continue, or increase, you're courting a flare, and need to return to the last dose where you felt comfortable.

Starting at a higher dose and reducing slowly results in taking less pred in the long run than trying to go more quickly than your condition demands. It's not a race to zero pred. Its a thoughtful and logical approach to managing the inflammation of PMR, and to hopefully keep it from progressing to GCA. Untreated or poorly controlled inflammation has its own consequences. PMR can last up to 6-7 years or more, so it's a slow process. Along the way, you may need to retreat to a higher level and taper from there again. You might even have to do this several times at different stages. Again, the goal is to keep your inflammation under control, and symptoms are often more indicative of how things are going than are blood tests.

At the early stages, you're going to have to cut back on physical activities. Both pred and PMR predispose us to muscle, tendon and ligament injuries. Additionally, PMR will react strongly to sustained repetitive motions. Exercise needs to be focused on maintaining range of motion, strength and balance, with frequent rest breaks.

As to diet, most people report that liming carbs, salt and processed food helps them avoid the weight gain that accompanies taking pred. Pred changes the way your body distributes fat, so you may see what we call "moon face", pred belly and swelling at the base of your neck between your shoulders. This can be ameliorated by eating a nutrient dense that's low in carbs and salt, and will begin to diminish when you get down to a sustained dose of 10mg, and will virtually disappear once your get to 7mg and below. You'll need calcium and Vitamin D supplements to protect your bones, which you do not take at the same time of day as your pred.

There's a wealth of knowledge and wisdom on this site gleaned from the experience of fellow PMRers, and guided by medical experts at PMR.GCA-UK. You'll have lots of questions along the way, and experiences to share with the rest of us. But, first, you need a doctor who knows their way around this condition at least marginally better than the doctor you're seeing now.

Just so you know, we're sorry you're hear, but very happy to know you. Welcome to the club!

[Mutzy in reply to GOOD_GRIEF]

Thank you for the excellent advise so really helpful . I am so grateful to have found this site with people who have so much experience and knowledge to share , incredibly useful and positive