long term prednisolone use

[Gardeninguy]

Is anyone currently on long term prednisolone use and at what dose? Has it been effective and any side effects ?

[Warrior4104]

Yes I am. I started prednisolone 2 months ago with the dose of 20 mg per day (Thats not too much) but long term.

As you pass by 3 weeks, steroids are said to be as long term .

This month my consultant adjusted the dose in a tapering form because my asthma was a lot better.

He advised 5 mg for two more weeks and after that I will stop taking it. One week has passed, one more to go!

So it was a total course of two months+ two weeks.

It is effective for me. The inflammation is reduced. I also have bronchiectasis along with bronchial asthma so prednisolone helps me a lot to breath while I am on a flare.

Regarding side effects,

-I see acne on my forehead, it really bothers me. My doc said it will reduce as I stop taking steroids after its course completion.

-Puffy face, though I was weak before steroids so it is not a problem for me.

-Bone pain, yeah this is a problem, make sure to keep your dietary intake up. I started consuming milk and bone pain reduced.

-While tapering you might experience some irritability, but, it was okay for me.

Best wishes!

Sufferer197104

[Wheezeydarth]

I have been on daily prednisolone 20mg to 15mg for almost 3 years now im also on obviously crazy amount of other medication several inhalers and nebuliser as and when i need it. After the first 6 months most side effects pass as the body gers used to it my only known issue is osteoporosis bone density has dropped by 40 percent over both hips not good but have been on a few meds yoo slow it down. Sadly i have been told that i will probably always be on pred now as my body has stopped producing its own cortisone. Although even with my annual hospital 'holiday ' I have been lucky that my health hasnt stopped myself from working sometimes 7 days a week as a commercial plumber working all over the uk in restaurants to hospitals. I would however express caution to anyone who is starting long term prednisolone please try everything before even breathing exercises as its side effects are pretty bad. Good luck

[Mark-f in reply to Wheezeydarth]

hi

Did you have cortisol bloods taken , you should of done after that length of time … my 9am cortisol was 74 nmol .. think it should be around 550 …

My adrenals are totally shot , I now have adrenal insufficiency and am steroid dependent

[Wheezeydarth in reply to Mark-f]

Hi I wish i could get bloods taken or at least speak to someone but the NHS scotland is a bit of a joke they have been wonderful when i had gallbladder issues then told me i cant have my operation as no anesthetist would touch me as my medical history includes a number of resuscitations and plenty of icu 2 week holidays. I do believe though that iam now dependent on them i have tried to tapper off by myself breaking my 5 mg tabs in half just to see but by midday i would feel absolutely hellish so until i blessed with an appointment from someone even a cleaner i will carry on taking my meds.

[Mark-f in reply to Wheezeydarth]

hi

You definitely need endocrin input if you’ve been on long term prednisone, although it did take me 12 months to see one from referral by my respiratory team , they did all the relevant cortisol bloods once I weaned down to 5mg , I might add that this was no mean feat and took me a good 12 months .. from 10mg or pred to 5mg .. I had to wean at 1mg every 4 weeks … definitely ask your GP for some 1mg prednisone tabs.I’ve now been switched from pred to hydrocortisone by my endocrinologist.. it’s been a roller coaster but we some how get there in the end ..

Ask for a referral to an endocrinologist. Good luck

[Wheezeydarth in reply to Mark-f]

Thank you Mark i will ask GP for 1 mg prednisolone actually did try early last year to get some but was blatantly turned down by then GP telling me that it can only be respiratory team that can reduce my prescription a bloody joke considering each month i get 7 boxes of 5mg pred to take in which i choose when to increase no more than 60mg a day im supposed to inform my consultant when i do but alas since the cloud of covid i would have a better chance of contacting my dead granny than i do my consultant or any of her team. I my GP and a jnr doctor in my local hospital have tried also but no joy. Really do feel that i might have to go private just to get anywhere. Hope my plight is only mines and everyone else has a chance to be seen by proper respiratory teams. NHS Scotland mmmm. Like most things Scottish once a marvel an institute a place of swift recovery and medical genius. Now a sad shadow of itself where the poor nurses and doctors run from piller to post looking more and more tired and disillusioned by over manage by laughable bad management.

[Poobah in reply to Wheezeydarth]

There should be a PALS team at the hospital that you can complain to. That usually has the desired affect in these circumstances.

[Wheezeydarth in reply to Poobah]

Hi Poobah Thank you i have never heard of PALS definitely will be checking them out. Love forums best way to find information and ideas. Thanks again

[Poobah in reply to Wheezeydarth]

nhs.uk/nhs-services/hospita...

[EllenBristol]

I have been taking prednisone daily for about 25/30 years and now - oral corticosteroid dependant, since also being on a biological I have reduced them slowly 1mg a month to 12mg but my body won’t let me get any lower.

I wouldn’t advise anyone to take them long term, I have severe osteoporosis, broken both arms, foot, and ribs/fingers/toes regularly, plus bad teeth/very thin skin and of course weight gain.

Try talking to your medical team to come off them and explore other medical treatments if you can as the damage they cause is awful later on in life. In short courses they are fantastic and yes work well.

[Starstream20]

Hi, been on 10mg per day for the last 15 months, currently weaning off as have started bendrazmabs, down to 3mg per day now and hopefully down to 2mg next month.

Have felt good in this time but side effects are thin skin, have to be careful not to knock my arms even the shower hurts them. Also have gained a stone in weight and been told I am pre diabetic (prednisolone induced)

Bone thinning and cataract are also issues.

Hopefully the bendrazmabs will fully work and I can get off pred completely.

Hope the info helps 😀

[Mark-f]

hi

I was on prednisone 20/25mg daily for 5 years … I’ve got to be honest it’s ruined my body , osteoporosis, mental health issues ,anxiety, depression and now my adrenal glands have shut down so I have a adrenal insufficiency and am now steroid dependent but been switched to hydrocortisone by specialist endocrinologist..

But for me at the time my asthma was so bad , life threatening there really was no choice

[shirl13]

I was on and off pred from 1967 to 1989. In 1991 was back on them and have been on them ever since. My maintenence dose is 20mg. Negative side I've usual side effects. Plus side I'm still alive

[runcyclexcski]

I've been on 20 mg for a year and have gained 10 kilos. Once I went on Xolair I was able to start tapering down and am currently on 3 mg a day. Lost the 10 kilos. If there is a constant trigger to asthma, I do not think going off prednisone would work. I only was able to taper down after starting on Xolair. Tapering was done while monitoring cortisol levels.

Irritability is an issue on it, do not talk to people who annoy you while on it. I got into major trouble with my bosses and the HR while on pred.

[awilso]

Been on pred for 12 years now. Averaging 12mg per day, sometimes lower. A miracle drug which is meant that I am still alive and able to function. The only side effects I have are related to tapering, which I try to do every so often to keep myself “in range” therapeutically.

My endo who’s a specialist in pred doesn’t think there’s any problem with the 10-12mg range for my condition. I know people suffer terribly with Pred, but I never have, it’s my best friend.