Ra sufferer: I have been on prednisolone for some... - NRAS

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Ra sufferer

Rocky07 profile image
19 Replies

I have been on prednisolone for some. years now. I have been on only 5 mg for awhile its a horrible drug with a lot of side effects to name a few insomnia osteoporosis stomach issues dependicy but when your first diagnosed with ra its generally the first thing. you are put on anyway thats not what I wish to talk about I would like to know if someone can help me with insomnia I dont want to take Valerian or prescription drugs preferably natural and something that doesn't make you feel groggy the next day I am in Australia so I have to get it here and as for prednisolone it should have been researched and tested more thoroughly anyway good health to all

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Rocky07 profile image
Rocky07
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19 Replies

Camomile tea is what I drink when I have problems falling and staying asleep. I drink it without milk or sugar. I do sometimes add a stick of cinnamon. I hope this helps you too.

Take care & I wish you a peaceful sleep

AgedCrone profile image
AgedCrone in reply to

Got to part company with you here Suzanne....the only thing I ever use Camomile tea for is to inhale the steam if I have a sinus infection!

I find the taste so disgusting it would keep me awake hating it!

Sorreeeee to disagree!

AC

in reply to AgedCrone

Yes it does have an odd taste doesn't it? I've been drinking it for years. My mother used to make it for us whenever we had a cold or such. It was her cure all. I used loads of sugar then just to get it down..lol

sylvi profile image
sylvi

I was on steroids for years and only got off it 18mnths ago.xxxxx

AgedCrone profile image
AgedCrone in reply to sylvi

Good for you Sylvi.....I went loopy on Prednisolone so the doc just took me off it after a few days.

But from what I have read here it's alarmingly difficult to put up with the horrid painful side effects you have to put up with to get off it.

I'm sure if it were £10 a pill it wouldn't be prescribed like Smarties as it seems to be now,.

Have a good weekend Sylvi.......take it calmly & don't overdo it in your garden!

AC

AgedCrone profile image
AgedCrone

It's another good thing about this site, that those of us who managed not to get pulled in to virtually permanently taking Prednisolond can say so & hopefully alert those newly diagnosed to NOT to just take it without speaking to their Rheumy & rheumatology nurses about prescribing alternative drug far quicker before dependency kicks in.

Maybe even now you could make a strong representation to your doctors to start a programme to wean you off it?

Re your sleep .....after many years of working shifts & missing roughly two nights sleep a week I decided I had to stop stressing about it.....I'd read a book have a warm , drink or even paint my nails.....anything to relax your mind & stop worrying about not sleeping ....it worked for me (except maybe the nail painting Rocky)

Good Luck....stop worrying - something will eventually get you to sleep.

Ali_H profile image
Ali_H

Hi Rocky,

I've only taken it once for 3 days to kick a flare into touch so not much experience of this med but look at what time in the day you take it and shifting it to an earlier time in the day may (may not) help. Also do the same any iron vitB supplements if you take them as these help release energy so can make a person restless at night.

I use a sleep tea which is a Pukka tea (purple packet) which sometimes helps but my best sleep aid is simply 1/2 a Piriteze tablet at night which knocks me out. I do this for about a week and then stop and sometimes I will sleep well for weeks after as I've got back into a sleep routine and other times I have to take it for another week to get my sleep pattern going again.

All the best

Ali

Nanapapa6 profile image
Nanapapa6

I was on and off prednisone for three years but when I came off it I've been virtually bedridden and hospitalised twice, apparently my adrenal glands are not now making my own cortisol, it's been five months and no change, in acutel pain and bedridden

You said not valerian? Valerian is a wonderful herb, and when combined with chamomile makes a great sleep aid. The taste isn't great but you could get capsules too...

Try also L-tryptophan and / or Melatonin. They are gentle and natural and work really well besides.

Good luck with your sleep - It's so hard when you can't

Simba1992 profile image
Simba1992 in reply to

Melatonine is unfortunately not recommended for RA. Research on this. I can look up the link if you want.😊

in reply to Simba1992

Interesting. I have been taking it for more than 20 years and never noticed any issues. I guess it is individual..

Simba1992 profile image
Simba1992 in reply to

I had too for 20 years until I read the recent reasech. Evidently an exception in healthyness in RA, increases inflammation☹️

in reply to Simba1992

Hi Simba - I understand =) However, my inflammation is gone now, so I'm not worried about it for me. For others, it is good to know. Thanks

in reply to

One other thing I forgot was the sleep minerals we take some nights - it is a combination of calcium, magnesium and zinc..

Simba1992 profile image
Simba1992

LDN brought back good quality sleep to me. Have heard the same from other users. The first two weeks may be a little bumpy but after that amazing😊

in reply to Simba1992

How long have you been taking LDN? My neighbour has had lupus for years and started LDN last year. She will never give it up now. She says LDN was her life line.

Simba1992 profile image
Simba1992 in reply to

Over a year now. Same with me I will newer give it up😊eather. I am quite certain it also playes a central role in the controlling of my RA.

Rocky07 profile image
Rocky07 in reply to Simba1992

Hi simba would like to lnow more about your experience with ldn and if you know if you are only on a small dose of prednisolone will taking ldn help you get off it

Simba1992 profile image
Simba1992 in reply to Rocky07

Hello Rocky07,

I found LDN when reseaching after nontoxic alternative treatments for RA. You can find all the information you need to understand what LDN is about and the reseach being done on these websites ldnreseachtrust.org and ldnscience.org .I have been taking LDN now for over a year together with AIP diet and supplements and have not needed RA meds.

I know that many have been able to wean off pred with LDN since it reduces pain quite effectively. In RA however it often takes some time to kick in, but you can take it alongside pred until you feel you can leave the pred.

I think you should start out by looking at these websites first and if you have questions or like to discuss more I would be happy to help you😊 Best of luck, Simba

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