Treatment with 60 mg pf Prednisone: Can anyone... - PMRGCAuk

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Treatment with 60 mg pf Prednisone

Robinre profile image
8 Replies

Can anyone share with me the effects of being on 60 mg of Prednisone. I am afraid that I might have to be on this dosage due to possible GCA. How fast does one taper? Does one reduce at a faster rate than when one does at much, much lower doses. I initially started off at 20 and tapered to to 1 in about six months. After a flair was put on 15 and tapered to 1 again after 6 months. After the second flair I was started at only 10, tapering down to 1 mg again. After the last flair (my final one) I was started at only 5 and am back to 1. It seems I really can't get off 1 mg. So I have been going on and off Prednisone for 4 years. So, I have been on fairly low doses for at least two years.

I follow this same pattern when I am started on 60 mg, it seems I could possibly be on Prednisone for the rest of my life. I am 81 years old.

When I was first put on 20 mg for PMR I could not sleep at all and had to take Ambian for a short while. I can't imagine what I would do if I have to take 60 mg.

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Robinre
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8 Replies
SnazzyD profile image
SnazzyD

Hello. Oh gosh what a roller coaster you’ve been on and it is frustrating that the doc just kept trying more of the same. In the U.K. at least, docs that are in the know favour a very slow steady reduction with the idea in mind that this condition takes a median of nearly 6 years. The various taperings all sound so fast and probably took you both past your required level of Pred at that time and possibly your adrenal system hadn’t been given enough time to wake up. The 7mg and below range can be quite tricky if the adrenal glands don’t wake up as fast as the Pred taper. As one example it took me over 2 years to get to 1mg from 20mg and that was without any flares but I still struggled at some point with low adrenal function that can feel awfully like how people describe PMR. The mantra on this site is that you are not relentlessly trying to get to zero (hands up those of us who secretly have that dream) but getting to the lowest level where your symptoms are controlled. Can I ask how much freedom you get with tapering your Pred and have you been given a plan this time round?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

Side effects at 60mg - initially super hyper like a child that has overdosed on sweets, chocolates & fizzy drinks! Inability to sleep for more than about 4 hours at a time at night. Me - talking for England (according to late hubby).

Maybe (depending on how long on and individual) raised blood pressure, raised blood sugar, raised eye pressures (glaucoma), Pred inducted cataracts - am I selling it to you?😂😳😂

This was my reduction (initially 80mg for sight loss ) down to 15mg-

Start dose April 2012

80mg - 2 weeks

60mg - 8 weeks

55mg - 2 weeks

50mg - 3 weeks

40mg - 2 weeks

30mg - 3 weeks

25mg - 4 weeks

20mg - 5 weeks

17.5mg - 4 weeks

15mg - 6 weeks (Xmas period)

From 15mg it was slower.

As an aside, I would say your journey so far has been much too haphazard and reductions ridiculously fast - so no wonder you have flared. You cannot afford to do that if you have GCA.

jinasc profile image
jinasc in reply toDorsetLady

Totally agree too much yo-yoing going on............and sometimes that can cause GCA to come along.

'Pred induced cataracts'.

Pred+Sunshine is not a good idea. A Guest speaker (Optician whose Mother had both PMR & GCA) advised that those of us who wore glasses should change them to re-actolite rapide asap and those who did not should always have sunglasses handy.

Reason, sunlight and pred = faster growth of existing and can cause new ones.

I had often wondered why my optician had said, glad to see you already wear re-actolite rapide lenses as you have the start of cataracts. It did not occured to me to ask why, too shocked with diagnosis I suppose. Now 12 years later and 5 of those with pred..........they have never grown. 🤞

The people at the support group meeting..............off to see their opticians.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply tojinasc

Yes you’ve posted this before. I have worn transition lenses for last 20years, and sunglasses - but still got me! Just luck of the draw I suppose as to what side effects you get! Who’s to say I wouldn’t have had cataracts anyway - my sister had both her operated on.

jinasc profile image
jinasc in reply toDorsetLady

I knew I had posted this before, could I remember where, could I heck.

Sorry 🤦‍♀️

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply tojinasc

As we say to others- never be sorry - it’s a message that’s needs reinforcing for newbies!

PMRpro profile image
PMRproAmbassador

This may help you compare the management of the two:

rcpe.ac.uk/sites/default/fi...

It is reasonably easy to understand and provides typical tapering approaches for both. However, much depends on how well you respond to the starting dose - some doctors try to get those starting doses lower sooner. This approach takes up to 6 months to get to the typical PMR starting dose of 20mg but it will be less if the starting dose is lower.

But the bottom line is, they only use the amount they need to control the inflammation and tapering too quickly just results in a return of symptoms. The reason you have had problems so far I would also suggest is because of yoyo tapering - and that simply hasn't dealt with the inflammation you have.

ndstephens49 profile image
ndstephens49

I am just getting PMR (summer 2018) and GCA (winter 2018) under control. Many times we tried to decrease prednisone and many times had to increase it back to 30mg. Initially was on 60 mg prednisone.

The biggest side effect was very high blood sugar. For years I’ve been on Metformin oral diabetes medicine.

But my blood sugar on prednisone was hitting 400 even on metformin. So now I am on insulin three times a day. Have never been on insulin before. Luckily I’m used to giving myself injections of low molecular weight heparin due to clotting issues (APS).

I’m also osteopenic and had dexascan last week. Don’t know results yet. I’ll probably need Prolia and hope it helps without side

effects.

Nancy in West Virginia

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