Prednisolone dosage: I have been trying to come odd... - NRAS

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Prednisolone dosage

14penny profile image
27 Replies

I have been trying to come odd prednisolone only low dosage 2.5 so I have tried taking it every other day but have been getting weird depresive feelings but I am lucky to have a consultant face to face review a couple of days ago and he said what I was doing was very dangerous and to go back on them which I am doing but am still not feeling that great, so I am putting it on hear to see if anyone has had similar problems I am 73 14 penny😃

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14penny
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27 Replies
KittyJ profile image
KittyJ

I didn’t have similar problems but then I didn’t taper as quickly, please take notice of your consultant and taper as they tell you, dropping half your dose isn’t good but hopefully you will pick up again now you’re taking more but contact your doctors if you don’t improve 🤞🏻

RAGuy profile image
RAGuy

I had a similar experience with low level prednisolone. They can have this affect, it is a known side effect for some people, fortunately not the majority.

The jump from 2.5 to zero was too much and I had to reduce by .5mg gradually over a period of time. It is important to have medical guidance as you reduce, once you have the need to come off them.

You should be able to stop taking them comfortably. Do not stay on them if you do not wish to take them but softly, softly with the supervision of your RA team should not be an problem.

I hope this advice from a mere youngster in his 60's is useful!

Runrig01 profile image
Runrig01

prednisolone can be very dangerous tapering off especially at the lower doses. The reason fir raper is to nudge your adrenals awake, to produce their own cortisol. Pred switched off the HPA axis, and can be slow to recover, and in some cases never recover, as in my case. I developed adrenal insufficiency from long term pred, and now require steroids for life. I’m going to attach a chart of common low symptoms which can occur, and mean you should return to previous dose you felt well and contact your team. I was only diagnosed adrenal insufficiency, when I suffered a severe stroke due to an adrenal crisis, so it’s really not o be messed with. I was taking 4mg at the time. You need clode supervision at these lower doses. I wish you well

Low cortisol symptoms
precious123 profile image
precious123 in reply to Runrig01

I agree so much with what you are saying. I too have tapered down per my doctors advice and instructions. Slowly at .5 at the time. My adrenal glands have not woke up either. I will be on 7.5 the rest of my life. As I have tried to taper from that and cannot do it. Pain is horrific when I try to go lower. This stiff is no joke but it has given my life back so I am ok with this. 64 old peggy.

Runrig01 profile image
Runrig01 in reply to precious123

I take it you have adrenal insufficiency too. Do you have your emergency injection. I’ve had to use mine a lot as I suffer severe migraines with repeated vomiting. It’s shocking how a little stress has you spiralling downwards 🤗

precious123 profile image
precious123 in reply to Runrig01

no as long as I stay on the 7.5mg a day I’m ok. Just can’t wean down further. I have tried but pain is too bad. Sorry you are so bad. I’m thankful it’s not any worse for me.

14penny profile image
14penny in reply to Runrig01

Thanks for reply No I do not have an emergency injection I did not know there was one, I will find out as the overall pain is really horrible

Runrig01 profile image
Runrig01 in reply to 14penny

the emergency steroid injection, is to prevent an adrenal crisis when you get low cortisol symptoms. Everyone dependant on steroids should carry one. If you’re vomiting or can’t take oral steroids for any reason, you should inject. Here’s some info on it, usually an endocrinologist will prescribe the initial one, then gp issues ongoing need for them.

addisonsdisease.org.uk/the-...

14penny profile image
14penny in reply to precious123

Thanks for reply I am now taking 2.5 and have been told by my rheumy what I was doing was very dangerous so I will keep on taking them every day but the aching is horrible. 😉

Hisue profile image
Hisue in reply to Runrig01

My rheumatologist recently added 2mg/day to my Rinvoq, telling me it’s no problem to stop that low dose at any time! Is she sadly uninformed? I seem to find one bad rheum after the next…. In the USA.

Runrig01 profile image
Runrig01 in reply to Hisue

if your on it for less than 3 weeks, you can stop suddenly. Any longer you need to taoer, as the HPA axis needs cia ing to wake up.

Hisue profile image
Hisue in reply to Runrig01

Oh my, thx for the info- my USA rheumatologist told me I could stay on it indefinitely- like baby aspirin- she gave me a 3 mth refill script…

14penny profile image
14penny in reply to Runrig01

Thanks for your reply and the diagram it is very interesting I have had to take 2.4 every day as I was told it is dangerous to taper off to quickly and I can never come off it altogether 👍

Runrig01 profile image
Runrig01 in reply to 14penny

My stroke which was caused by an adrenal crisis happened whilst taking 4mg of pred. A dose of 2.5mg is less than your adrenals produce to cope through the day. They state 3-7mg is needed to replace missing cortisol. Also inflammatory issues need to be considered, as the dose may need to be increased, to cover both. Diabetics can test their blood sugar, unfortunately there isn’t an equivalent test to check cortisol levels, so we have to be tuned in to low cortisol symptoms and increase as needed. 🤗

14penny profile image
14penny in reply to Runrig01

Thanks for reply I think I will find out what cortisol I have and if i have to up mine

oldtimer profile image
oldtimer

I have tried 3 times to come off prednisone. Each time I tried I got to 4mg. Then it became an impossible and rather terrifying struggle. Eventually after a talk with several specialists I accepted that I was not able to produce enough of my own.I have been on a maintenance dose of 5mg since.

It is worth several cautious slow attempts but don't get to hung up on zero! Best of luck.

wilbertjellyfish profile image
wilbertjellyfish in reply to oldtimer

I've been told that I'll likely be on 5 mg forever now. I'm only 45.

Hisue profile image
Hisue in reply to oldtimer

How do they measure your cortisol to see if your adrenals are working properly?

14penny profile image
14penny in reply to oldtimer

Thanks for your reply and yes I think I will have to stay on 2.5 or maybe 5 as adrenal gland not working so it would be dangerous to stop taking them. 👍

Doodlereggie profile image
Doodlereggie

I too have been on maintenance dose of 5mg for last 10 years or so.My rheumy is quite laid back about it as I am nearly 80 and the risks of reducing outweigh the risks of taking.I am now on JAK meds so will ask when I see him in September whether to try and reduce.It is part of everyday routine to take the little red pill with breakfast,and keeps me mobile and almost pain free.So,I will carry on on this dose for now unless instructed otherwise.Good luck.

Mmrr profile image
Mmrr

I reduce by 0.5 mgs every 7 - 14 days depending upon how I am feeling. Slow and easy does it particularly at the lower levels.

Cottell profile image
Cottell

Hi,

polymyalgia started 2 and half years go, agonizing . Thank goodness for Prednisolone . 15MG start and down to 1mg, no resurgence or depression. Occasionally had to return to higher dose , when down to 5mg. 80 YRS and feel great !!

mistymeana profile image
mistymeana

Please don't try to taper off without full involvement of your doctors. It has to be carefully monitored to check that your body is coping and managing to take over and produce sufficient natural steroids. It can cause serious problems if not done correctly.

14penny profile image
14penny in reply to mistymeana

👍

Chrt profile image
Chrt

Hi Penny I,m now reducing my preds from 5mg to 2.5 after being on 5 daily for more than 2yrs but I get to feeling down sometimes along with no energy. I understand no fun is it! But I,m doing it under rheumy,s advice. The 1st time I tried to get doen the gp advice was done too quickly & 2 dys after being without I had the most massive flare in every joint except my elbows, it was before I,d seen the rheumy. I did have a flare a few wks ago about 3/4wks after I,d reduced to 2.5mg but only in 4 joints so thtx is being increased & I,m staying on 2.5 for next few mths rheumy said we,re going in right direction. Please listen to your rheumy & dont taper to quickly. Hope u feel more cheery soon :)

14penny profile image
14penny in reply to Chrt

Thanks so much for your reply it is so helpfull when you hear others in the same position 👍😃

14penny profile image
14penny

Thanks everyone for your replies and I have just been told by my rheumy it is very dangerous to try and come off the prednisolone as I have been taking it for 10 years so I am glad I had a face to face appointment as on the last telephone call I was advised to cut the dose in half for a month then stop which is a bit worrying and that was by the same consultant.😗

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