Tapering down on Prednisone

[Brears]

18 months since I was diagnosed with PMR I’ve managed to taper down to 4,5 mg per day, tried several times to get to 4 mg.Find my arm joints and hips ache even more till I can’t walk.Taking Codeine also for the pain.Just wondering is it worth consulting my GP that’s if I can ever get through to the surgery.I really would like to come off the medication but can’t see any way forward.

[DorsetLady PMRGCAuk volunteer]

Maybe you have reached the lowest level you can get to for the moment……18 months is not very long for PMR, no matter what you may have been told or what you would like.

You are not reducing the Pred relentlessly to zero, you are try to find the lowest dose that gives you relief…and maybe for you, at the moment it’s 4.5mg. If it is, it is!

Rather than coming off the medication, maybe you need to accept you need at least 4.5mg if not a little more.

[piglette]

You will only get off the steroids when the PMR decides you should. Personally I would go back to the dose I was last comfortable and hang in there until I was sure everything is OK and then slowly try and reduce again. Pred is infinitely better than codeine for PMR pain.

[PMRpro Ambassador]

Whatever your doctors have told you, only 1 in 3 patients is able to discontinue pred in 2 years or less. Half take up to 6 years - the rest of us more than 6 years although latterly on a low dose such as you are on. PMR is NOT a short and simple illness, it is a chronic problem. As long as the underlying autoimmune cause is active you have a choice: take pred at an adequate dose to manage the inflammation created on a daily basis or return to the status that sent you to the doctor in the first place.

Most doctors accept that 5mg and below is a dose that is relatively safe long term and allows a good quality of life. You also have to take into account that unmanaged inflammation in the body is also a risk factor for cardiovascular disease and even some cancers. It isn't a case of pred bad, no pred good.

[Gibguy in reply to PMRpro]

Not because I doubt you, but because I have encountered doubting doctors, who read a book, do you have a reference for the 1 in 3 reality?

[PMRpro Ambassador in reply to Gibguy]

practicalpainmanagement.com...

is an article about a study done at the Mayo in Rochester USA. Unfortunately this article doesn't quote that figure but the full text of the paper which is linked at the end does:

ncbi.nlm.nih.gov/pmc/articl...

"The median time required for the patients to permanently discontinue steroids was 5.95 years (95% confidence interval [95% CI] 3.37–8.88). Only 19% of patients discontinued GC by 1 year after PMR onset (95% CI 15–23), 37% (95% CI 31–42) discontinued by 2 years, and 50% (95% CI 44–55) discontinued by 5 years. Only 58% discontinued GC use by 10 years after the onset of disease (95% CI 51–64)."

There have been another 2 or 3 studies since which have found similar figures. Some of the time to zero is the final taper because of adrenal function considerations - but that is as much part of the picture as "just" PMR.

[123mossie]

Sorry you’re not yet able to get lower, similar happened to me at that dosage. I had to stick there until things settled down again, probably about three months. After that I was able to taper again using the dsns method. I’m now going towards 2mgm , slowly and even slower is the key.

[Koalajane]

You cannot rush your reduction. I have been on 4.5mg for about a year and then tried 4.25. I am now trying 4mg. I have been on prednisolone for over 4 years. You have to listen to your body

[Domstad]

I stayed on 5 mg for a year due to fatigue. Then I used a tapering method to get to 0 in 3 1/2 years. Use the DSNS method for tapering!

[Dancer98 in reply to Domstad]

What is the DSND method again?

[MrsNails in reply to Dancer98]

You’ll find it all explained in FAQ

healthunlocked.com/pmrgcauk...

[Dancer98 in reply to Dancer98]

Thank you so much! I’ve read it before but am down to 2.5 mg and just needed a refresher course in going down very slowly. My rheumatologist says I’ll never get off going as slow as I mentioned I was doing. She said to try going down a mg each month. I was going to stay on 2.5 for 3 months before dropping! Anyway this blog has been SO helpful. It’s been 2 years this month since being diagnosed with PMR.

[PMRpro Ambassador in reply to Dancer98]

You are more likely to get off going slower than faster. What on earth makes her think that?

[moskin]

HelloI don’t want to depress you,but I have had PMR for 8 years,have been down to 1 mgm,but alas could not move,so back up again .I am now on 2.5 mgm and have been for months,I have no doubt I might have to stay on this.My BT are fine,so all very difficult.Good luck

[Meggsy]

You have have done very well to get to 4.5mg in 18 months, so give yourself a pat on the back. Many here would be envious of your progress. I am just reducing very slowly from 4 to 3.5mg after over three years and a couple of glitches. I agree with Piglette and would return to the dose where you were most comfortable. Don’t be disheartened, just relax and remember, the lower you go, the slower you go. All the best. 🌻

[sew-lady]

Tapering Prednisone is a very slow process. It has been a few years of tapering for me. Let your numbers go down. Higher doses can taper more quickly than lower amounts. Joints do hurt but steroids can help that. I had to add methotrexate to help steroid. It has taken me years because of flares. Be patient. 4-5 is a low amount. I understand that you want off but must taper slowly to not rebound. Maybe you are in a flare…I don’t know. Once I have gotten to the lower amount…2-3 the pain is better. If your doc approves try walking. It can help. That time increase has to go slow too. I started at 10 minutes because of pain but could increase slowly.

[agingfeminist]

I was also diagnosed 18 months ago and I have tapered to 5 mg, which works perfectly for me. I tried 4.75mg and with a few days the PMR crept back. I took 10mg for a couple of days to get on top of the pain and then dropped to 5mg. One rheumy recommends staying on this dose for a year...to avoid relapses.

It is a low dose...though having been on a very high dose for sometime, 5mg is probably enough to leave me immunocompromised. I have no intention of venturing out into the world. Staying healthy (within the limits of PMR) means I can work (online) and that is my absolute priority. Here in Israel corona is very low (even the delta variant) but strep throat and respiratory infections are rampaging. I am lucky to be blissfully happy in my isolation...and really blessed to feel okayish (though short on energy of course).

5mg feels a good place to be.

Sending you good wishes

[Mooreby]

I got down to 3.5 mg after 15 months and had a terrible flare that I thought I would just live through because I was so desperate to get down. I ignored the pain when I got down to 4.5 mg. I could endure it no more at 3.5 mg. I slowly went up mg by mg to get relief. My blood work showed sky high inflammation and my bowels during my colonoscopy showed inflammation. I had a colonoscopy outside of my regular time because of my issues.

After 2 months of pain and my rheumatologist pleading, saying I was doing harm to my body, I went up to 30mg! At diagnosis, I only took 15mg! She said we had to just kill the thing. I took the 30mg and had instant relief. I went down quickly to 10mg and I have been reducing .5 mg by the month depending on how I feel. I am between 5.5 mg and 5.0mg now. I am taking my time because I don't want another flair and start over.

Go with what your body is telling you. If you don't, you might just end up like me with double your original dose to get relief.

[PMRpro Ambassador in reply to Mooreby]

I'm not sure either you or your rheumy understand PMR.

The reason you had your flare was because you had reached a dose that was too little to combat the amount of inflammation created each day by the underlying autoimmune disorder that causes the set of symptom we call PMR. You are never reducing the dose relentlessly to zero - you are looking for the lowest dose that gives YOU the same result as the starting dose did. In other medications it is called titration - finding a personalised dose that is the lowest that achieves the required effect. As long as the underlying autoimmune disorder is active - you will need some pred. How much you need can't be predicted - that is why you taper the dose to find what you need.

You can't "kill" the thing - the pred has no effect on the actual disorder, it is a management strategy to allow a better quality of life in the meantime - because it is said that for probably 95% of patients the underlying cause of the symptoms burns out and goes into remission, unlike most autimmune disorders. You do need to use a dose that is high enough to get a reasonably speedy result for all patients - but then you aim for the lowest dose you need.

If you get to a slightly too low dose - over time the dripping tap of left-over inflammation will build up until it feels like you did at the start. There are two sorts of flare: one happens because you overshoot the dose you need and the other is an increase in disease activity that also means that the amount of infalmmation is more than the current dose of pred - or, of course, if you are already off pred altogether it is a relapse into a new episode of PMR.