A nice summary on reducing Pred: cssassociation.org... - PMRGCAuk

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A nice summary on reducing Pred

Insight329 profile image
13 Replies

cssassociation.org/patient-...

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Insight329 profile image
Insight329
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13 Replies
Soraya_PMR profile image
Soraya_PMR

Thanks for this Insight329

I saw Leeleep mention it, you’ve saved me the effort of searching.

I think I’ve read it before, this maybe the article that made me cut down red meat. Can’t resist streaky bacon though, so there’s my animal fat for cholesterol, and butter ❤️ I’d eliminated caffeine prior to diagnosis, may also have been this article that prompted that. I shall have to recheck and review re Vits A, B’s and C. Have already reduced simple carbs, need some brown carbs though or I lose weight. May have to raid hubby’s cod liver oil supply! But I eat oily fish like it’s going out of fashion.

Recent radio programme stated that iodine (for thyroid) is more readily available from white fish than oily, so that’s a regular too. (High cortisol can lower thyroid levels and inhibit conversion of T4 to T3)

Also read that pred can deplete B12.

I wonder if I’d paid this much attention to my diet before I’d not have become ill? In retrospect there was no way to avoid the stresses, but a better diet MIGHT have carried me through????

PMRpro profile image
PMRproAmbassador in reply toSoraya_PMR

Oh I think a good diet is irreplaceable and they do emphasise it here. But given what I can't eat (wheat) - my diet is pretty restricted anyway and if I ate normal amounts of carbs on pred I'd be 3 times the size I am!!!!

Insight329 profile image
Insight329 in reply toPMRpro

Me, too, on would have had weight gain. My bestie and I were discussing how GCA has changed my life and she remarked that a benefit was that I was taking better care of myself. True dat! Of all of the advice that I’ve gotten here, which is vast, #1 was to change my diet.

Joydeck profile image
Joydeck in reply toInsight329

I wonder whether PMR sufferers tend to gain weight because they exercise less.

I am approaching 4 months on pred, tapering from 24 to 16 mg, but have only regained 1 kg of the three I rapidly lost in the month before PMR diagnosis. I exercise heavily and eat whole foods like a horse, with complex carbs aplenty.

Returning to my normal weight is proving a challenge!

Insight329 profile image
Insight329 in reply toJoydeck

Hi, Joydeck! Certainly exercising less would make a difference. However, Pred changes how the body precesses carbs. I’ve been fortunate that I haven't gained weight but I’ve been very careful at watching my carbs, cutting out almost all fruit, bread pasta, sweets, etc. Best wishes to you.

Insight329 profile image
Insight329 in reply toSoraya_PMR

Yes,, i had posted the site in a response to Lucylooloo and when Leelleep mention it a bit later in a reply to you, I thought that maybe it should have it’s own post as both of us thought that it was good information.

PMRpro profile image
PMRproAmbassador in reply toInsight329

It has been mentioned before - but as you know, everything gets lost very easily here. Now you know if you want it again you just have to look through your posts...

CT-5012 profile image
CT-5012 in reply toInsight329

Many thanks for the link some really good advice there.

SnazzyD profile image
SnazzyD

Just a thought. It says that it is best to take Pred in the morning to correspond with the natural rise in cortisol. My logic says that if you take it then, there is no need for the body to try so hard. Also, by the end of the day, that is when you may need a top up. What do people think?

BonnyQuine profile image
BonnyQuine in reply toSnazzyD

Could be, SnazzyD. I still take mine at bedtime (before midnight + enteric coated), but am keeping an open mind. Always interested in the experience of others. Started this pattern in the early days (40mg Nov 2016) when experiencing what felt like extreme side effects, which seemed more manageable if I could sleep through the worst of them.

Now somewhere around 8>7.5. I do have most energy (what there is of it) in the morning, and tend to hit the buffers any time fr mid afternoon to early evening, when I have a 'siesta' - maybe half an hour but sometimes up to 2 hours. . Then sometimes almost 'normal' rest of evening, and sometimes not. Unpredictable and varies quite a bit. But always take Pred at same time.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

I posted this 4 months ago, but always good to repeat for newbies

healthunlocked.com/pmrgcauk...

Insight329 profile image
Insight329 in reply toDorsetLady

Oh gesh, DL, how did I miss it when you posted it? I’m not at all surprised that it was posted before — and probably many times — as it was nicely written and from 2006. I’m going to go read the comments from your post as there’s always great information in the comments, too. Thanks so much for posting the link.

Double gesh, when I pulled it up to read the comments, I noticed that I had ‘liked’ your post Darn Pred brain.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toInsight329

No probs! People dip in and out all the time, and sometimes you don’t remember what you’ve read or where!

Never does any harm to remind about things!

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