Tapering, Diet and Sleep: Juggling, spinning plates... - PMRGCAuk

PMRGCAuk
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Tapering, Diet and Sleep

Juggling, spinning plates, getting those dear little ducks in a row...and mopping up a puddle!

I’ve been following the AIP (Autoimmune Protocol) lifestyle and diet since April, mostly with great success, and I’ve been tapering 0.5mg Pred every month since then, also very successfully.

My sleep has been up and down for a long time so I’ve been paying a lot of attention to sleep hygiene and doing all I can to help - good mattress, dark quiet bedroom, no screens for 2hrs before bed, a good bedtime ritual, regular sleep/wake times etc etc - and it’s still up and down.

I’ve reached that point in my Pred taper where I’m waiting for my adrenals to kick in and they’re taking their time so, as expected, I’ve been feeling very fatigued.

I’m now in the middle of tapering via DSNS from 6.5 to 6 and this morning I’ve woken with some aching in my hip joints. I already had some in my shoulders and neck but was just seeing how it went...

Meanwhile I’ve also been reintroducing foods on the AIP diet including, recently, raw goats milk and sprouted grain bread (regular dairy and grains would be too strong at this stage). I thought the goats milk was ok but looking at my journal more closely I can track the possible start of a build up of inflammation to that.

So I’m going to experiment. I’ve taken an extra 5mg Pred this morning (11mg total) and my plan is to take 10mg tomorrow, 9 the next day and so on until I get back to 6.5 (Tuesday) and see where I’m at then. I’m hoping this will whack it with a high enough dose to mop up any puddle of inflammation and get back on track asap.

I’m also going to cut out both the milk and bread until I get the Pred taper back on track and continue with the sleep ‘hygiene’.

Fingers Xd all of this will reset things in a good way!

I’m so grateful to be able to share this here and I’d love to hear any thoughts, suggestions or advice you might have on any of this.

Thank you! 😊

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I couldn’t presume to advise! I think you are wonderful. You may want your Adrenal capacity checked, but having failed a Synacthen Test, I am no further forward really.. Endocrinologist seems keen on the alternate dose idea for getting the Adrenals going. I am not so sure for me. Keep on going, you’ll win.

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Thank you Jane!

So having failed the Synacthen test what do you do now? Play the waiting game...?

I asked my GP about the test and she suggested waiting until I'm on 5mg or less as she thought it wouldn't tell me what I want to know yet and we'd want more evidence of there being a problem, e.g. Addison's, to be worth the bother of coming off Pred etc that it would involve. She's wonderful and I trust her.

What is the alternate dose idea? I'm curious about that...

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On day you take Pred, next (or alternate) day you don’t!

Supposed to nudge the adrenals into working, but like Jane I’m not sure it’s very good for underlying PMR.

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Worked for me - but if you are a person for whom pred has a 12-hour antiinflammatory effect, it won't!!!

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OK - good to know!

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What dose were you on when you did the alternate dose thing and how long did it take?

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You aren't supposed to do it when above 10mg/day. I used 17.5mg enteric coated on alternate days and it was fine - and I really had next to no side effects. I just couldn't get any lower and then I had some signs of blurred/double vision. It is very likely I have large vessel vasculitis.GCA as I had had jaw claudication and scalp tenderness originally that went away on its own. ADD isn't recommended for GCA so I was told to go back to daily doses and for a time was back to 15mg.

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OK thanks DL...don’t think I’m ready for that either! Maybe on a much lower dose if the adrenals still haven’t woken up I guess a point may come when it’s worth a try but I hope not!

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Hi Dorsetlady I hope life is good for you. Can you advise please long story very short taken me 19 months to taper from 60mg to 10 mg managed to get down to 6.75mg major relapse groin pain knee etc feeling really rotten gone back up to 10mg. Where to next? Also only managing 2 hours of sleep a night really struggling. Like all of us just want to be feeling better and getting our lives back. Just off to get bloods done again GP orders monthly not sure if necessary any comments gratefully received

All good wishes

From Margaret

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Hi Margaret,

Just recovering from total hip replacement last Thurs, 10th, so life is in the slow lane again for the moment, but other than that - good thanks.

Took me about same time to get from 60mg to 10mg as you - but then another 6 months to get to 6.5mg. Not sure how quickly it took you, but in hindsight - too quickly. Many find the drop from about 8 mg down difficult.

From just above 12mg I started using my slow taper - see attached, and reduced by 1mg only until I got to 6mg - then 0.5mg a time.

I used to get blood tested every couple of months just for interest really.

This you need to see if 10mg gets rid of your pain, about a week should tell you. If so, then try again - the slower the better really from now on.

As for sleepless nights, I took Nytol (otc) every 3rd or 4th night just to break the cycle when I was bad early days (GPs suggestion), or speak to GP or pharmacist. At least it you can get a few good nights it’s makes day times better - although a catnap is good - if circumstances allow!

healthunlocked.com/pmrgcauk...’s-simple-taper

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Thank you so much for prompt reply most helpful as usual. I do hope you have a good and speedy recovery. I bow to your advice and knowledge it is so useful to be able to chat and reassuring

All the very best take good care

From Margaret

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I was on 6 mgs and still failed. The Endo wants me to power down to 3 mgs in about 4 weeks. I have since had a flare and have returned to 7 mgs eventually. I think they just guess, but he did send me a syringe and Hydrocortisone. He has never met me, just read about me in GP and Rheumie correspondence.

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What a nightmare! I find it all very puzzling. Are they still trying to make a diagnosis or what does the result of your Synacthen test actually mean?

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I honestly don’t know. I just hope that the function will recover as I reduce.

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🤞🌟🙏💕

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Just to say enjoy your time with your family. xxx

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Thank you Telian and you with yours. X

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Thank you - It's sooo exciting....X

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I have been on pred for 10 weeks now I hate the stuff told my respiratory medicine specialist I wanted to come off it he said how quick I said as quick as I can with least side effects. ( I was having huge adrenal issues) done said take 10mg eod for a week then take 5mg eod for a week then stop. I'm currently into day 6 of the 10mg eod and so far so good. Anxiety, fatigue, ance and foggy head are all the sides I'm experiencing. Good luck

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My respiratory specialist refuses to put me on Pred despite it working wonders for me and even said that pred is only effective for Asthma and not COPD. He said long term Pred use is inadvisable for COPD and despite me having bladder cancer and a general anaesthetic has been deemed too dangerous for me, still no Pred has been prescribed as a short term cure to enable me to have this life-saving op.

Am now awaiting an assessment on my ability to go under a General Anaesthetic with no pre Steroid treatment despite the anaesthetist mentioning Pred as a possible help.

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That is a absolute shame. Sometimes I wonder if these guys know What there doing. The original specialist I seen told me to take 10mg for 8 weeks and didn't mention a taper down dose or anything. It's absolutely messed my life up these last few months

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I have had asthma since birth, and diagnosed COPD 2 years ago. Have been on Pred 13 years for GCA. Never been told it's dangerous?

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Really? Try googling "use of pred in COPD" and have a look at some of the medical literature links that come up. It is frequently used for exaccerbations...

healthline.com/health/copd/...

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Is your Pred prescribed for Asthma or COPD ? Are you in US or UK?

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I’m so impressed with your attention to life’s details! Do you follow a specific diet? I was so strict at onset of PMR 18 months ago! Those days are long gone! Two holiday parties in Boston almost put me in a carb and sugar coma! Back to NJ tomorrow with a strong desire to correct my bad habits!

I try to avoid carbs and just have 2 squares of very dark, low sugar chocolate every day. I’m always hungry so I eat frequently. Gained a few pounds I lost at onset of PMR. Dr. said I need the weight because I have osteoporosis.

Your post inspires me to do better!

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Thank you Sandy!

Oh yes parties and holidays can be our undoing! They can be stressful in other ways too.

I try to prepare in advance so I know what I'm going to eat and drink to avoid temptation...or just plain hunger!

For 9 months I've been following the AutoImmune Protocol (AIP) diet and lifestyle. It's an approach specifically designed to eliminate unwanted inflammation in the body. The diet is very restrictive, especially to begin with, so it's not everyone's cup of tea!

I was desperate and determined to do everything I could to help my body be as well as possible, even with PMR and other conditions so I've stuck with it. It's worked extremely well for me and I'm SO glad I found it.

If you're interested there's a lot of information about it online if you search for What is AIP?

I've written about my own progress with AIP on this forum in a series of posts with the subject 'Wish Me Luck!' and 'Wish Me Luck! Update #1' to 'Wish Me Luck Update #5'

Avoiding carbs and processed sugar is definitely a good thing on Pred. A small amount of very dark chocolate can be beneficial too. I've just successfully reintroduced the 85% dark organic chocolate after 8 months without it and it's such a treat to have a little square or two after dinner!

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I will def investigate AIP. I was obsessed with diet at the beginning, eliminated all alcohol (still no desire to have it) and followed all advice from Dr. and forum experts. I’m 18 months in, tapering to 1 and 1/2 mg Pred, have the dropsies and still need lots of rest. I know I have an autoimmune illness!

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Certainly worth a try if you’re willing to do it. You’ve done very well to get down to such a low dose in 18 months. Good for you!

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Thanks!

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I’ve been studying it. I can’t give up dairy because I have severe osteoporosis and calcium in pill form leaks out through my urine.

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Hmm, that does makes it tricky but you could do the rest of it! I'm sure you know that there are other excellent food sources of calcium - tined salmon and sardines, bok choy, oranges, kale, seaweed to name a few - all of these are AIP friendly. I realise dairy is so much easier and I'm certainly not in a position to advise you but I wonder if you could manage on these other food sources even for a few days to see if it makes a difference. Dairy is known to be one of the main triggers for inflammation but obviously you have to take care of your bones too! It really is a balancing act.

Another major inflammatory 'culprit' for many people is the nightshade family so you could start there...

I did a six week online course called SAD (Standard American Diet) to AIP in Six (weeks) to get me started and I found it extremely helpful and supportive. You might take a look at that. They have four health coaches who aren't medical professionals but all have various autoimmune diseases and a wealth of experience and can help to answer these kinds of tricky questions. Just a thought!

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A key thing for me with the AIP diet is that it is highly nutrient dense so although it's restrictive I haven't experienced much sense of deprivation.

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Thanks for all the info. I did eliminate night shades for about a year. Reintroduced tomatoes but don’t eat often. Occasionally, I’ll eat potatoes. Mushrooms are OK, too. My Rheumatlogist says there is no research that supports causal relationship between night shades and inflammation. Tom Brady disagrees!

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So do a very large number of people who've eliminated nightshades and experienced a big positive difference in their AI symptoms! My rheumatologist does actually acknowledge this but I think he's exceptional, and of course it's not the case for everyone. And yes, mushrooms are fine. You've been doing your homework :)

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Found all these posts helpful. Thank to everyone. Am I right in thinking nightshade are tomatoes and potatoes? Are there any others?

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The Nightshade family includes potatoes, tomatoes, aubergines, peppers (bell peppers, chili peppers, paprika, tamales, tomatillos, pimentos, cayenne, etc) and goji berries 🥔🍆🍅🌶

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Couldn't possibly advise you, just to say I admire the sheer determination you have with your diet - good luck - always read your updates. :) :)

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🙂🙂

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I’m at the same point. Struggling a bit trying to settle at 5mg. Got here before and went back to 7.5. Got ticked off by my doc for self medicating! Told to get back to him if I got stuck again, so we’ll see.

Not been as good as you on diet, but have reduced carbs, dairy and red meat a lot. Eating lots more greens. Lost 2kg in last 4 weeks, now got to make sure it stays off😂

Will follow your progress, so keep at it😊

Thanks for your input and good luck.

Pym

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Do you drop in 2.5mg steps? You need to try smaller steps - 1mg tablets are essential, especially if you are using enteric coated pred which you can't cut. Using 5mg and/or 2.5mg plus 1mg tablets allows you to drop 1/2mg at a time - and you may well find that you can get as low as 5.5mg by doing so. 1/2mg can make a major difference between it working and not working!

And if you have a flare - what plan B, other than more pred, does the GP have in mind?

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I’ve come back from 7.5 at 0.5 a time every two weeks. Not sure what doc has in mind if this doesn’t work!

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Try slowing down - every 2 weeks isn't really long enough to be sure the new lower dose is enough. Were you still OK at 6mg? 5.5mg?

He may have to accept that what you need is rather more than 5mg!

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I got to cope quite well at 6. 5mg for a week now and whilst I’m still trying to do my daily exercises and stretches. I went to yoga this week and a cycle ride today, but it’s hard work. I’ll try keeping at this level for a couple of weeks. Perhaps I was trying too hard.

Thanks

Pym

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Sounds like you’re doing well! It’s such a balancing act and too bad that your doc has that unhelpful attitude. Maybe you can build his trust so he’ll treat you like an adult 🙄

Adding other colourful veg 🌈 to the greens whenever you can is really good for the gut microbiome which is what it’s all about when it comes to controlling inflammation. Congratulations on your weight loss...excellent!!! 👏😃

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I told you last time, you were WONDERWOMAN, and I endorse it again. Such motivation and discipline! I saluteyou.

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Thank you!!! 🥰

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The issue that I have found with tapering is stress and holidays make it harder for me to taper. I have to wait until summer (when I'm not teaching) or when there is less stress because that makes a huge difference for me. I'm stuck at 5 mg (2.5 at night and 2.5 in day) but can't get past that until the stress in my life kicks down. I'm 67 and still LOVE teaching art to my 500 elementary kiddos (some as young as 4!) but it is so stressful and takes a lot out of me. I Just spent three weeks unloading and loading a kiln with ceramics which is a pain. I suspect this may be my last year teaching...we shall see! I love your diet input, thank you!

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Wow! I can relate and I simply don’t know how you do it! I’m 68 and an artist and find it a huge challenge just to make my own work let alone teach 500 kids!

The unloading of a kiln I also get although I’m a painter but I did a lot of ceramics in the 60s/70s. I’ve also taught in art schools but not with little kids, so a different kind of demanding.

Now just mixing paint is hard work and sadly, even though they’re very beautiful, I’ve had to shift to watercolours because my beloved oils are just so toxic.

I’m sure the kids generate a lot of positive energy and delight as well as stress but I know I couldn’t do your wonderful and challenging job! I think you’re absolutely amazing!!!

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Sounds like you’re doing your best xdbx. What about trying a visualisation at bedtime to help with sleep? All the best.

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Oo yes! visualisation can be very helpful and anyway is just a lovely thing to do! I often make it part of my regular bedtime routine. Daily meditation is wonderful too, and noting gratitude for something at the end of the day...🌸😊🌟

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So just to report back if anyone is interested, I did the ‘mopping up’ experiment and it went well. I was on 6 mg and flagging a bit so last Thursday I upped my dose to 11mg and tapered fast by 1mg a day back to 6mg on Tuesday and I’ve been on 6mg since then. Now it’s Saturday and I feel a lot better than I did before the big mop up!

Fingers Xd that 6mg is enough for now. Time will tell...

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