Tapering, Diet and Sleep - update: So just to... - PMRGCAuk

PMRGCAuk

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Tapering, Diet and Sleep - update

xdbx profile image
xdbx
18 Replies

So just to report back if anyone is interested, I did the ‘big mopping up’ experiment and it went well.

I was down to 6 mg and flagging a bit so on Thursday 6th I upped my dose to 11mg and tapered fast by 1mg a day back to 6mg on Tuesday 11th (6 days altogether) and I’ve been back on 6mg since then (7 days).

I also cut out the goats milk (the only other dairy I have is a very little grass-fed butter - Kerrygold!) and the sprouted wheat bread (I haven't eaten any other grains since March) in case they were messing things up. Incidentally, I heard just this week from a source I trust that the most recent research points to grains as the food group most involved in inflammatory conditions like PMR.

Now it’s Monday 17th and I feel a LOT better than I did before the big mop up!

Still waiting for the adrenals to shine and fingers Xd that 6mg is enough for now.

I'll also do a very gradual and measured reintroduction of the goats milk now and then the sprouted grain bread, separately, to see what happens with those.

Time will tell...

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xdbx
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18 Replies
scats profile image
scats

Very interesting thanks for posting. Glad you're feeling better may it continue.

xdbx profile image
xdbx in reply toscats

Thank you! 😊

1964-karina profile image
1964-karina

Wow that sounds interesting! Am on 7mg been told not to try and reduce for 3 months but like you am flagging, last week of work in a primary school and things are hectic might try this

Suedeshayes profile image
Suedeshayes

Hi, what a very positive article, but just a question about sprouted grain bread-what exactly is that? Do you think that a gluten-free diet would help PMR? And dairy? Perhaps you would tell me more about your experiences with these foods please?

Sue

xdbx profile image
xdbx in reply toSuedeshayes

It's bread that's made from grains that have been soaked in water and sprouted. It still contains gluten but the process releases enzymes that break down the proteins and carbohydrates in the grain increasing vitamin content and making it low glycemic, so it's easier to digest than traditional grain breads. This means the body retains more of the nutrients because it's able to digest them properly so they're not lost in the digestive process.

As far as gluten and dairy free diet these are both commonly associated with inflammatory autoimmune conditions and many people find avoiding either or both helps reduce their symptoms to a greater or lesser degree, depending on the individual. It's a case of trying it for yourself and seeing what happens. There's no one-size-fits-all with this...unfortunately!

I've written other posts here on my own experiences with diet and lifestyle and you'll find them if you search for "Wish Me Luck!" and "Wish Me Luck! Update #1" to "Wish Me Luck! Update #5".

PMRCanada profile image
PMRCanada

I’ve been following your posts with interest given your choice of an AI diet. Sounds like it is going well.

I’ve done some “mopping” of my own in the last two months trying to get from 10mg down to 9.5mg. Fingers crossed we both continue to have some success with our slow tapers.

Keep us updated please! Happy holidays.

aladymo profile image
aladymo in reply toPMRCanada

What dosage are your pills ? How do you reduce by .5? I’ll check again, but I was told here in Quebec only dosages of 50 and 5!

PMRCanada profile image
PMRCanada in reply toaladymo

I have 1mg uncoated pred that I cut in half to reduce by .5mg. Previously I had 5mg tablets.

aladymo profile image
aladymo in reply toPMRCanada

Ok. I’ll check here again. Thanks. I am on 50 , will reduce slowly , but looking ahead :).

PMRCanada profile image
PMRCanada in reply toaladymo

You are welcome. Important to note, you should not cut coated tablets. Good luck.

aladymo profile image
aladymo in reply toPMRCanada

Mine are not coated. Started on 10 mg. Went to 7.5. Then all went nuts. Diagnosed with GCA ( large vessel). Now fingers crossed 👍. I am in Quebec so I am sure I could get one mg tablets as well. Thanks so much again

PMRCanada profile image
PMRCanada in reply toaladymo

Seems like a low dose for GCA! Dropping by 1 or .5mg may be better.

aladymo profile image
aladymo in reply toPMRCanada

I didn’t write that properly. Started on 10. (PMR). Then diagnosed GCA. up to 60. Now on 45.

xdbx profile image
xdbx in reply toPMRCanada

Yes, it's going very well!

I'm interested to hear you've been 'mopping' too - what did you do? I found it was very effective to use 'a bigger sponge' just for a few days but wouldn't want to make a habit of it.

I'm crossing my fingers with yours!

Happy Holidays 😊

PMRCanada profile image
PMRCanada in reply toxdbx

My process was similiar to yours. The first time I tried to lower from 10 to 9.5, later that week I noted increasing pain and stiffness. I also happened to get my blood work done shortly after and sure enough CRP was elevated. I tried 10 for a few days with not a lot of relief. So I took 12, 11, 10 and continued on 10 for two more weeks.

My next attempt at tapering was slower and I’ve currently been on 9.5 for four days with only discomfort late at night before my next dose is due. Fingers crossed!

Thanks for your interest. Wishing you continued healing, and successful reintroduction of some more food options.

Merry Christmas.

StillBreathin profile image
StillBreathin

Thanks for the info!

Daisychain12 profile image
Daisychain12

Oh well done!!!! I have to say I would blame the sprouted wheat bread. Grains are notorious at causing inflammation as you say. Wheat does me in too. I don’t have any grains or wheat and if I do have a “treat” only done it twice btw. I get symptoms. Pain and bloating. Can you make Keto bread? Diet Doctor.com is marvellous xxx

xdbx profile image
xdbx in reply toDaisychain12

Yes it might be a factor...we shall see! I don't get any obvious pain and bloating when I eat grains but over time there may be a slower problem. I just think if in doubt take it out...and then do a thorough check.

I could have keto bread now because I've recently reintroduced both nuts and eggs, thank goodness! Maybe I'll make some 😋...thanks so much for the reminder! :) xoxo

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