At long last I can sleep!

[Suet3942]

I am doing a slow taper to 5 mg which is the lowest I’ve ever got to (fingers crossed) in 9 years. For the last week I have been sleeping properly and I actually feel tired in the evening which has made me realise that I hardly ever felt tired. Hoping it doesn’t get worse as the dose decreases. Don’t want the deathly fatigue. I do feel very stiff though and hoping it passes as I get used to the lower dose. 🌷🌷

[Hidden]

9 yrs, wow, At the end of this year it will be my third year. Currently taking 7mg for the month. I did the DSNS method, sadly, it didn't work for me, so now trying each taper for a month and only reducing by 0.5mg at a time. Arms and shoulders a bit painful but that is even on a higher dose too, so putting up with that. As long as GCA doesn't appear again I'm content. Unfortunately, mood not been good for a couple of days since lowering from 7.5mg to 7mg hoping that will go away soon. Good luck with your taper.

Anne

[Suet3942 in reply to Hidden]

Good luck Staplehurst.

[SheffieldJane]

Normal sleeping is so wonderful, everything feels better. Gentle stretching feels really good to me ( for the stiffness) perhaps we are emerging from the chrysalis?Good luck Sue! We didn’t sign up for all these years. 🌻

[Longtimer in reply to SheffieldJane]

Had 6 hours sleep without waking last night because of taking an Anti-histamine for the first time. I have terrible rhinitis...blocked nose, dry mouth with cold sores, dry eyes etc....had this for months....all these extras are tough to deal with....

[SheffieldJane in reply to Longtimer]

Ditto! I have all these symptoms.

[Longtimer in reply to SheffieldJane]

Have you found anything that helps...I am due to start Duloxitine which can cause drowsiness, so don't want to add to that...today went out, but felt like I was struggling to breathe, especially with a mask on...has got worse last few months....Talking on the phone....sniff, sniff, sniff!.....so embarassing....

[SheffieldJane in reply to Longtimer]

I use an ointment for my nose and Salivix pastilles for the dry mouth. I have Thealux Duo drops for my eyes and also use a goopy ointment because sores can appear in the corners, of my eyes. I am resigned to these symptoms being with me until I can stop Prednisalone and Tocilizumab. I don’t have cold sores but would use the ointment that you add at the first tingle. It’s a pain! Constantly treating to keep it at bay. I get the remedies on prescription. At the moment though my nose ointment is German made, totally in another language like Turkish on the tube and natural sounding ingredients. It is working better than usual . I googled and found it, so it’s worth trying different products.

[Longtimer in reply to SheffieldJane]

Thank you for that, haven't been to G P or spoken to them for myself but will have to....I have a weird looking big toenail....lady who cuts them thinks I should show GP....a weird yellow/black colour and part has fallen off!...whatever next to collect!

[SheffieldJane in reply to Longtimer]

I have this too. I associated it with the psoriasis I have in my feet. It predates PMR by years. I wasted a small fortune for years, on anti fungal treatments. Apart from cutting them and using an chiropodist’s tool for the thickened nail, I just hide it under nail polish. I can make them look good. I know as we get older we need to take particular care of our feet especially with diabetes.

[Longtimer in reply to SheffieldJane]

Yes agree about wasting money on antifungal treatments.....the tiniest bottle is more than £10 now....didn't do a thing....it doesn't bother me just looks unsightly....least of my problems really....unlike the Rhinitis!

[MrsNails in reply to Longtimer]

Have you tried Tree Tree Oil?

I had a messed up big toenail - many years a friend stood on my toe (accidentally) she was wearing wooden clogs 🤦🏻 it was never the same again…..

Then halfway through Chemo it totally disintegrated - have you tried finding Open Toe Shoes in December 🤦🏻 I couldn’t bear to wear shoes 😖

So eventually it regrew but it looked thicker & yellowish. Tried everything - l had to have antifungal tablets for persistent oral thrush but they didn’t help.

So at the start of Lockdown - no more nail varnish & kept it in the sun as much as possible & treated it with Tea Tree Oil & eventually it all grew out……

Once we were back in the real world l wore a false toe nail to cover it up.

I still treat my Nails 💅🏼 with Tea Tree every time l change my colour 💅🏼

[Longtimer in reply to MrsNails]

No I haven`t tried that but will now....thank you.....👍

[Pr0jection in reply to Longtimer]

I had bad rhinitis as a result of smoking most of my adult life (I gave up 10 years ago) and started taking the first generation of antihistamines, the kind that make you drowsy. Works for me also with the lack of sleep due to taking 7.5mg prednisolone. I usually take a quarter to a half tablet before going to bed and manage about 3 hours sleep before the inevitable bathroom break, then get another 2/3 hours, maybe more. It's enough to keep me going through the day. I'm trying to get to 6.25 very slowly over a period of 7 months. If successful I'll try the same method to get to 5mg.

[Suet3942 in reply to SheffieldJane]

No we didn't Jane. Little did we know!!

[PMRpro Ambassador]

Great - but keep it SLOW, maybe even slower, and then the fatigue might be less awful. Rod Hughes said he likes to keep people at 5mg for up to 9 months to let the body catch up and then he finds the rest usually goes more easily.

I slept like a log last night - first time it was so soundly for months. Hope it lasts!

[Suet3942 in reply to PMRpro]

That's great Pmr pro. Long may it continue. I will heed your advice if I'm lucky enough to get to 5mg .

[Viv54 in reply to Suet3942]

Good Luck, i long for this,a good sleep makes you mentally stronger to cope with the pain !

[MrsNails]

Good Luck 🍀 Sue

Best Wishes

Angela x

[innasway]

OMG!! I can't believe you used my own words: "deathly fatigue"! That's how I was describing the way I felt before I went on Prednisone. 14 years and counting. Sleep? What's sleep? Forget about it!😜

[Telian]

That beds great for you. I’m in my 9th year now on 8mg and very little sleep. However congratulations to you - take it really slow now and finger’s tightly crossed. 🌺

[Amkoffee]

I don't want to worry you but excessive sleepiness can be a sign of adrenal insufficiency. This can happen at the dose you are on.

[Suet3942 in reply to Amkoffee]

Yes I'm aware of that bit at the moment it's not excessive. Just normal bedtime tiredness.