Tapering : Any help please. 64 W diagnosed Aug... - PMRGCAuk

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Tapering

Breester
Breester

Any help please. 64 W diagnosed Aug last year with PMR. From 20mg tapering 1mg less per month, am now stuck on 13mg. Each night interrupted sleep because inflammation just reaching through and constant head & upper body sweating. I take Pred every morning about 5:00 am. Now at 13:00 inflammation of back of neck and around eyes, seems to be lifting, but most mornings feel like sort of vice sensation around head & usual tingling in limbs, makes me fed up & slow to get going. I live in France & my rheumatologist has not heard of gradually reducing over a month.

Sometimes does it take longer than 4 weeks to make 1mg reduction & you need to stay on same dose for 2-3 months? Will the sweating go away. Does anyone take anything to help them sleep through the night? Any advice/experiences welcome. Thank you.

17 Replies
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PMRpro
PMRproAmbassador

Have you ever tried splitting the dose? It is difficult to say whether this simply you have reduced a bit too far for now or whether the anti-inflammatory effect of pred isn't lasting the full 24 hours for you - or whether even this is not just PMR but the headache at the back of your head and around your eyes is signalling this could be GCA. If you split, the usual is about 2/3 in the morning and the rest later in the day at a time that means the effect extends to a good 24 hours.

Provided you have enough pred in stock you can reduce using one of the tapering plans without asking the rheumy - you are ever only about a month behind at the short end of the process. And since it seems to be taking a long time for the pred to work - have you tried taking the dose before bed? Ideal is supposed to be 2am for plain pred - then it is ready to work by the time the inflammatory substances are shed in the body at 4am so it has less to do anyway and so the effect is achieved much sooner.

Breester
Breester
in reply to PMRpro

Thank you for your reply. I often fear GCA & rightly or wrongly keep 20mg tablets ready if my sight radically changes. Rheumy & optician have ruled this out, but still similar symptoms to GCA persist. I worry.

My GP told me sleep would be interrupted if I took Pred before going to bed. But I agree with you it’s too late @ 5:00 as I lose most mornings.

I will experiment with the couple options you suggest.

PMRpro
PMRproAmbassador
in reply to Breester

It stops some people sleeping - but not everyone. One lady had the wobbles a couple of hours after taking her pred and her GP suggested trying taking it before bed so she slept through it. Worked a dream.

I use Lodotra, you take it at 10pm and it is made so it releases at 2am - it isn't that that disturbs my sleep!

Daffodilia
Daffodilia
in reply to PMRpro

Use Tropics Sleep Solution and temple balm to help with sleep

I wonder if your dose is now a bit low. I get sweats as an early warning symptom that a flare is nearly on me. Before any pain arrives! But that is me. I am sweat free unless my dose is getting too low.

Hidden
HiddenModerator
in reply to Mary63

I agree. Night sweats are one of my first signs these days and if I nip it with a quick burst it helps. If I ignore my body starts to tell me.

Breester
Breester
in reply to Mary63

Thank you for your reply it looks like night sweats are linked to too low dose.

Breester
Breester
in reply to Mary63

Thanks for your reply this helps me to sort out my dosage.

I really would want my symptoms looked at by a specialist who understands GCA. I don’t know how the medical system works in France but GCA constitutes a medical emergency. It doesn’t always present typically or show up in blood tests. Certainly stop tapering and increase a little.

Thank you for your reply. I’m experimenting with my routine. Emergency service here locally is excellent and if GCA symptoms worsened, one hopes .....

It could be pred withdrawal symptoms you’re experiencing (these symptoms seem to arise within the first week after a dosage drop). Or as others have suggested, you may not be experiencing a full 24 hours of anti-inflammatory effect, may not be getting a full 24 hours of relief. Perhaps you’ve dropped below what is needed to control the current inflammation being generated by PMR, causing a flare (that is more likely to be symptoms that emerge weeks after a dosage drop, and for me, increasingly more painful symptoms).

Figuring it all out requires listening to your body, tracking symptoms and taper details, and inflammation markers in the blood if accurate and reflective. Sometimes it’s a matter of hot and miss, or testing out adjustments for improvement. Dealing with life’s stresses effectively and with confidence, control and calm also helps (good luck with this last one...I’ve yet to master it). You don’t want to yo-yo your dose so better to go back up to dose where you had symptom relief and stay there for a few weeks to mop up the inflammation if you are flaring, than creep up and down in your dose.

I began lowering .5mg once I got to down to 10mg, but you may want to consider a smaller dosage drop. I tend to try Tylenol first to help determine if it truly is PMR related pain, or if I’ve over done it in the pool or spring cleaning. I started taking my pred at 7am...sore until noon if not longer. Then started splitting dose 2am and 2pm, worked a charm but hard to get up at 2am, eat something, take dose (uncoated) without dropping pills, interrupting my sleep, or my husbands. No Lodotra here in Canada, so I found enteric capsules online, and stuffed my am (2/3) dose inside them. I take the capsule at 11am and meds are on board by 2am. Take second dose (1/3), at 11am. To get where I am now took almost 2 years. I’ve flared 3 times in that period, but much better now than those months after diagnosis when all was so new.

Lastly, a good doctor really helps, and medical supervision is important when trying to figure things out. Advocate for your health if you need to. You know your body best. You’ll get there!

Breester
Breester
in reply to PMRCanada

Thank you so much for your considered reply. Sometimes hard to discard GP & Rheumy advice, but this time I must. I’ve seen on this site others splitting their dose. Last night I took 10mg at midnight, slept well only waking because of night sweat, (usually wide awake hourly) and immediately better function in the morning. At 2pm as you suggest will try 4mg, and work from here.

As you imply it’s a long process of trial & error and I’m in such a hurry to reduce, doesn’t help me in the end. Best regards

Hidden
HiddenModerator
in reply to Breester

I am afraid pmr and time are in charge of how successful tapering is. Can I ask if you have something to eat for supper? Or a pre bedtime snack. As well as pmr flares causing night sweats changes in blood sugar can too. If you are eating quite a low carb diet you can dip while asleep and as your blood sugar rises head sweats can start. Vice versa too. A high carb diet can raise blood sugar too high and head sweats. If you low carb then a split dose may help as the pred will release as your blood sugar falling.... And vice versa if normal high carb. I hope that makes sense!!

Breester
Breester
in reply to Hidden

Thank you for your reply. I’m afraid so far, I have given into my craving for eating as & when. Before PMR I never snacked & never paid attention to my diet, now I find I binge eat resulting in weight gain. Slowly though my craving for food is diminishing I hope coinciding with lower dose of Pred.

Back to your question. I take Pred on an empty stomach. Yesterday for the first time I took 2/3rds Pred @ midnight empty stomach (last meal @ 6pm) & 1/3rd just now after lunch.

Are you suggesting small snack just before bed? Thank you for your consideration.

Hidden
HiddenModerator
in reply to Breester

Yes.... If you can bear some celery with full fat soft cheese or peanut butter, the latter does digest more slowly then it may help. It is hard at higher doses but try lower carbs generally with good full fat products like olive oil or Greek yoghurt. It helps with weight gain. Good luck.

dietdoctor.com/low-carb

PMRCanada
PMRCanada
in reply to Breester

One additional note, you should take your pred dose with food (assuming it is uncoated tablets). Half a banana or Greek yogurt is what I found easiest. I usually take my split dose 12hours apart as that is when I would start to feel the inflammation coming on, and I did check with my (wonderful) GP before starting a split dose. I believe the reason doctors recommend full dose first thing in the morning is because it best replicates our natural adrenal function making the possibility of return of adrenal function down the line better. It’s a matter of managing the inflammation as best we can....sometimes a .5mg increase in dose does the same thing in one dose.

Also, I’m afraid the night sweats have never gone away for me, regardless what dose I am on or when I take it. From about 4am-7am I sweat around my neck and down my cleavage. I sleep with cotton sheets and comforter and this helps. I also have thinning hair and skin that bruises easily. These are manageable and the only real side effects I’ve had, other than some brief insomnia and mood swings at my starting dose (20mg). I count myself very fortunate.

I have made a complete lifestyle change since my PMR diagnosis (May 1/18), with the help of my daughter who is a nutritionist. I was already overweight, had OA in my knees and high blood pressure. I adopted a low carb/sugar/salt diet and lost 30lbs which I’ve kept off. I go to deep water exercises twice per week, and in the warmer months more often, along with walking, playing golf and pickle ball. I try to get rest and stay stress free as well. I’m off my hypertension medication and delayed a total knee replacement.

I also found the help of my therapist most beneficial, especially in the early months as I came to eventually accept my fate at 55. I had just married, moved and retired early when 18 days into it PMR symptoms emerged. I was angry and resented my condition/body and how some people around me were responding. Much, much better now!

Hold fast, be patient with yourself...this is a journey of years, not months. The folks on this forum are very helpful and understanding and a great resource. We “get it” like others don’t. Post anytime.

Breester
Breester
in reply to PMRCanada

Thank you for your kind words, & the people above. I now have some new practical strategies & also better knowledge of what is going on in the body. In a foreign language this has been missing for me: follow an instruction & not fully understanding why I should.

I have hope now.

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