Obsessed with Tapering

[Christophene]

How did we and our doctors become obsessed with whether we can get from 6 mg of pred to 5.5? (as an example). ?

Why do we seem to feel guilty if we can't reach an arbitrary goal?

Why so much fretting?

[Hidden]

When l was given my first Prescription by my GP he said “And, you need to get off these as quickly as possible!”

I’d been diagnosed by a Consultant who’d prescribed the first Six Weeks, a two week trial & then 15mg for a month.

But that was my GP’s mantra every time l saw him!......

[Scilly]

Hi - I know they don't like us on the Pred. for any longer than we have to be. They are not good 'for the bones' ! My Doc. said that most patients find it difficult in the latter stages to finally kick the Pred. into touch. I have had to go down 1/2mg at a time - this is done by taking say 4mg - 3 - 4 -3 etc. on alternate days. Then you'll find it easier to drop down to 3mg. Then after a month on 3mg. Do the same 3mg - 2 - 3 - 2 etc. on alternate days. Do hope this is helpful.

[DorsetLady PMRGCAuk volunteer in reply to Scilly]

Once below 5mg most only reduce 0.5mg a time. If your tablets are uncoated ones you can cut them.

I used this plan to get to zero -

healthunlocked.com/pmrgcauk...

[Gary1310 in reply to DorsetLady]

...how are you doing?.......how long since you reached zero?

Are you considered, in remission?

[DorsetLady PMRGCAuk volunteer in reply to Gary1310]

Doing fine thanks. Almost 3 years to the day took last dose of steroids.

I consider I’m in remission - don’t say cured - because we know it MAY come back - but just hope it doesn’t.

[Gary1310 in reply to DorsetLady]

...You are my inspiration!....🌹

[SheffieldJane]

I don’t know why it is singled out in this way when recent research shoes the side effects as negligible in recent research on low dose steroid use. See Eric Matteson ‘study a t the Mayo Clinic. Apparently cataracts are the one remaining significant risk.

[jinasc in reply to SheffieldJane]

You can take precautions re cataracts. If you already wear glasses, change them to re-actolite rapide.

If not, keep a pair of sunglasses in your bag at all times, never be without them..........sun comes out, glasses on.

Pred and Sun causes cataracts to grow. My optician knew that and changed my glasses immediately and also gave me night driving glasses.

This was re-inforced at a support group meeting when the speaker was an Opthamologist.

I had the beginning of cataracts when diagnosed with GCA. They have never grown and 12 years later.........still no change.

[Christophene in reply to SheffieldJane]

As to cataracts, I wonder how much of that risk is related to age. I have read that two-thirds of people 60+ will develop cataracts regardless. I remember all of my elders had cataracts and none of them had ever taken Prednisone which was not even on the market until the 1960's. And now, all my contemporaries have cataracts and none of them have revealed that they have ever been on long term Prednisone. Wonder if there has been a scholarly study ever done on this subject.

I developed cataracts 5 years before PMR.

[PMRpro Ambassador in reply to Christophene]

The Matteson paper does establish that the risk is higher for patients on pred compared to an age-matched cohort not on pred.

medpagetoday.org/rheumatolo...

I've been on pred for over 10 years - no sign of cataracts much to my disgust (I could dispense with one set of specs!). But I have worn glasses or contacts for the last 60 years which does provide protection from UV light.

[Christophene in reply to PMRpro]

I guess you either get them or you don't. How many people are, or have been on Pred for over 10 years! The UV exposure will only get worse as the ozone layer continues to disappear. I also have worn glasses and always sunglasses with that pricy extra UV protection as long as they have been available, and still got cataracts. I also use sunblock and still have skin cancers yet to be removed; lost count of how many already removed. But did have a lot of fun in the sun for many years.

I hope your luck holds out, but then you will still have that extra set of specs to deal with. And the ones you need at the moment are always misplaced.

[PMRpro Ambassador in reply to Christophene]

The Matteson paper says about 40% of patients remain on a (low) dose of pred at 10 years!

Mine aren't misplaced - they are on my nose from the moment I start to get out of bed until I am in it at night!! Can't see much beyond the end of my nose without. But I don't need reading glasses at all, just computer glasses ...

[Hidden in reply to Christophene]

I am fortunate that I get on with varifocals ....so always wearing them. Need sunglasses though.

[PMRpro Ambassador in reply to Hidden]

My optician in Italy pointed out when I got my prescription sunspecs that there are lots of styles now with magnetically attached clip-ons. I did have a pair years ago but the sunspecs bit disappeared but now the specs have been superceded too.

[DorsetLady PMRGCAuk volunteer]

Most doctor have a hate/hate relationship with Pred! And yes they do make patients feel guilty about reducing - you would think we actually like being on Pred!

[Manchild in reply to DorsetLady]

Let them feel the pain....then the will have a love/love relationship with pred!

[Christophene in reply to DorsetLady]

Or worse yet, opioids!

[Christophene in reply to DorsetLady]

And that just leads to more stress, the last thing we need!

[Theziggy]

I remember my Rheumy saying you have to get off steroids quick, you are a young (if only) man.

Then on my next appointment I told him why I should taper (thanks to this site) slowly and he said, "you are a very informed patient" and then put me on to methotrexate.

Most doctors don't know much about PMR to be honest, they are only a front line!

[Hidden]

I don't fret. But ask myself the same question about why people are in such a rush. I "fret" about PMR if I do fret. I often say that's the problem not the pred tapering.

[Christophene in reply to Hidden]

You are right. The disease is the real problem.; based on scholarly articles, there is still controversy within the medical community about the use of DMARDs and I think the disease is still poorly understood; read this morning an article dismissing the idea that Methotrexate or Leuflomide are helpful as adjunct sparing therapies to Prednisone. That author was advocating Tocilimubab; (maybe he is a shareholder in the manufacturer's business). Such things do happen.)

However, if the patient thinks one drug works over an other, it is working in a placebo effect sort of way. I am not advocating that anyone change or stop what they are taking without consulting their physician.

[suzy1959]

My first 3 Rheumy's constantly fretted about my inability to reduce the steroids and caused me a lot of grief in the process. It meant that I yo-yoed as every time I tried to reduce, I flared. Who knows if that was instrumental in my still having PMR 7.5 years later and still being on 11mgs. ? It certainly has not helped me to reduce!! At least now, I know that I can't reduce if anything else is going on in my life, so I haven't even tried for the last year and won't try again until I have had all the surgeries I need- 1more Hip and 1 more knee replacement.

[Jackoh in reply to suzy1959]

Sounds sensible to me

[Christophene in reply to suzy1959]

If you feel well on 11mgs, stay with it. As in Woody Allen's comedy "Sleeper," someday they are going to conclude that steroids are really good for us, particularly for the bones! Aren't health authorities always changing their minds?

[Jackoh]

Yes it doesn’t help when we certainly put in all the effort and are sometimes treated as morons who need to “bite the bullet” as my last GP said!! Arghhg...😬!

[Christophene in reply to Jackoh]

At your next visit, bring him a bullet to bite and say "Just suck it up." Very wicked suggestion. I am just fed up with the authority they hold over patients who are genuinely ill , in pain and too fatigued to fight back. Your taxes are paying his salary if you are in a NHS country!