prednisone

[Robstevens1970]

Hi,

Could someone please tell me what is considered a high daily dose of prednisone?

How long on a higher dose are you at risk of the side effects of regular usage.

Thank you!

BW

Rob

[Nadine99]

My husband started on 60mg per day in 2010 at the beginning of the GPA journey. He's now down to 5mg, only taken 14 years but does up them when needed, then down again.

[PMRpro]

A low dose is usually considered to be under 7.5 to 10mg/day. 15mg to 30mg is considered moderate dose and higher than 40mg is high. But to some extent it also depends on context, what disorder and how it is being used, In vasculitis a doctor may call 5mg and under low because those doses tend to be longer term.

Many adverse effects can be managed or even avoided when you know how - I have been on pred for over 14 years, the majority of it at over 10mg and a few years at over 15mg and can't identify any purely pred-related probems. Everyone is a bit different.

[Robstevens1970 in reply to PMRpro]

Thank you that is helpful, yes reading other stories it is a very individual thing.

[Suffolklady in reply to PMRpro]

So it’s not affected your skin then or adrenal function?

[PMRpro in reply to Suffolklady]

My shins are dry and the skin thin but otherwise quite livable with for 71. I haven/t go low enough for adrenal function to be an issue but many people get to low doses and off pred without any problems. It all depends on the context and why you are on pred. For some of us it provides a decent quality of life - and for a lot saves lives and vision, The side effects pale into insignificance then,

[beatrice1955 in reply to PMRpro]

Can you explain how to avoid adverse effects from prednisone? I'm starting on 60 mg for GCA. Am very concerned.

[DorsetLady in reply to beatrice1955]

It really depends what they are …and just because they are listed, doesn’t mean you’ll get all of them..

Gaining weight, which seems to be most people’s issue can be controlled by cutting down on carbs..

..and if you have GCA you’ll get plenty of advice on the PMRGCAuk forum -

See this for starters-

healthunlocked.com/pmrgcauk...

[PMRpro in reply to beatrice1955]

DorsetLady has replied for me - but we'll welcome you over at the dedicated PMRGCAuk forum where lots of people will help you cope with things.

[DorsetLady]

Many sites say similar to this /

WHAT SHOULD BE THE DEFINITION OF CONVENTIONAL TERMS FOR GLUCOCORTICOID DOSES?

Answer

We suggest the following terminology:

* Low dose ≤7.5 mg prednisone equivalent a day

* Medium dose >7.5 mg, but ≤30 mg prednisone equivalent a day

* High dose >30 mg, but ≤100 mg prednisone equivalent a day

* Very high dose >100 mg prednisone equivalent a day

* Pulse therapy ≥250 mg prednisone equivalent a day for one or a few days.

I was on 80mg for 2 weeks, then 60mg for another 8 weeks before tapering to zero over next 4years when I had Giant Cell Arteritis.

Been off them for over 7 years -no great issues when on them (as PMRpro has said most side effects can be avoided/mitigated) - and certainly no long term issues

[Robstevens1970 in reply to DorsetLady]

Thank you for your reply, glad that you are off them now without issues.

It seems that consultants and doctors are always highlighting getting off them asap but I guess more to suppressing one’s immunity then long term usage effects?

BW

Rob

[DorsetLady in reply to Robstevens1970]

Many doctors seem to be scared stiff of them - and yes I can understand that - some people do have side effects... and there are loads in the information leaflet, but not everybody gets every one!

I had already lost sight in one eye with a late diagnosis of GCA, and the 80mg saved my other one... as did the few weeks at 60mg... and no doctor suggested I rush off them, because they knew I needed them.. ..

...all a matter of perspective from some medics - they wouldn't suggest you rushed off cancer or heart drugs, but ai issues are viewed differently. What some don't seem to appreciate is that left untreated inflammation can do a lot of damage...

.. our mantra on the PMR/GCA forum is - you need what you need, and as long as you need it. Pity it's not a bit more acceptable to some doctors...

[Robstevens1970 in reply to DorsetLady]

Oh my you’ve been through it, I feel very lucky at the moment compared to others..yes I agree if it keeps you out of hospital then it’s worth it!

[DorsetLady in reply to Robstevens1970]

Come through unscathed by Pred…..

[piglette]

I got side effects on 20mg, 14 of them at last count!

[Robstevens1970 in reply to piglette]

Oh dear sorry to hear that. I guess it just effects people so differently, I’m down to 20mg now.

[piglette in reply to Robstevens1970]

You should have seen my reaction to the Covud vaccinations!!

[Bcol]

I've been on Pred for around 3.5 years now, started on 30mg and now down to 1.0mg and not had any adverse reactions.

[eh66]

I was on a maximum of 90mg but it was tapered to over 3 months, once the immunosuppressants kicked in - I had had 2 double infusions by then. I was pretty glad to be off them; I didn't sleep well and it made me eat continuously. I put about 7 kg in that time.

[Erichtheviking]

My son got moon face, huge belly and cataracts, had to have ,both eyes done- age 36 😬 due to side effects of pred, taken for excema, 30mg.

[Robstevens1970 in reply to Erichtheviking]

Blimay, your poor son, with just 30mg? Cataract issues seems to be a common thing with this steroid.

[Investigator1]

Hi Rob, I was on 2 x Pulse sessions of Pred when first diagnosed in December 2019 then on 60mg for about 3 months then tapered down quite quickly coming off them after 18 months, it was probably a bit rapid because it’s left me with a lazy adrenal gland which causes issues with stress, low sodium etc but I just try and get on with it. Nick.

[Robstevens1970 in reply to Investigator1]

Pulse being a high infusion? Hope your on the mend now, yes just getting on with it is all one can do isn’t it? Bw Rob

[Investigator1 in reply to Robstevens1970]

Yes Rob 500ml for me, they didn’t know if my kidneys were being attacked by the GPA or the Ibuprofen the GP (5 visits) had told me to take the previous 3 months for headaches and body pain. Turns out the Kidney Involvement was highly likely to have been the Ibuprofen. Nick.

[Robstevens1970 in reply to Investigator1]

I see, I’ve just had an additional 500ml infusion today. Vascilitus is a very confusing disease, just coming to terms with it.

[KirstyW1999]

I have adrenal insufficiency , as my adrenals stopped producing cortisol and aldosterone due to my first round of high dose steroids. It is rare , I now take 5 mg daily religiously and under the care of endocrinology,Prednisone is a necessary fighter of vasculitis , it fights disease inflammation, I was just unlucky

Also have osteoporosis.

[Robstevens1970 in reply to KirstyW1999]

Thanks for the info, yes a necessary evil, best wishes for your recovery.

[Investigator1 in reply to KirstyW1999]

That’s interesting Kirsty, do you have difficulty with stress and low/high sodium, I do but don’t take steroids any more. Nick.

[KirstyW1999 in reply to Investigator1]

Hi, Nick

Yes, as I dont produce my own cortisol , which would normally produce extra to cope with stress and help the heart .

I find it very exhausting and I feel ill when under stress

Yes, sodium levels are affected, the levels checked by blood test when diagnosing insufficiency also glucose levels.

[Investigator1 in reply to KirstyW1999]

Yes it’s a swine, I got a bit dehydrated yesterday and woke up at about 1am feeling dreadful. I got the fluids into me but as you well know you can overdo it so it’s a fine balance. I have got a lot better during the day though, but it goes like that sometimes.

[yogarita1955]

hiI'm on 6 tablets a day as I can't take any other tablets I have been on them 4 years seem to be OK don't like to think about side affects as I can't come off my symptoms are back if I reduce it has thinned the skin on my legs I have to be careful not to bang on things

[Robstevens1970 in reply to yogarita1955]

Yes I think if you look at all the side effect symptoms of taking them it is quite scary. Everyone seems so differently effected by them.

[mrfacts]

prednisilone! is there alternative medications you could use, as the side effects of prednisilone can often cause more than they help, even in small doses, but it is your decision and you go with what makes you happy!

[Robstevens1970]

i just go with what the consultants say, I’ve been on them for 8 months, I’m not sure of alternatives? Would rather use something less abrasive.

[AtopicGuy]

I can't help thinking the elephant in the room, here, is age. The risk of many conditions increases rapidly (in some cases, exponentially) with age, regardless of whether the individual is on steroids, or not. All good epidemiological studies work hard to compensate for age (along with many other factors). Are age-compensated data for the side-effect risks of prednisolone available? I find it hard to believe they're not.

[Robstevens1970]

I agree age plays a massive role with the steroids adverse reactions. At 53 I guess another 20 years of usage could bring into play other issues mentioned in this post.

[Reboundman]

blimey this was a popular thread - I guess we’ve all been on it at some point with our unique condition! One thing to bear in mind is it’s the mg per kg of body weight that’s important. The mg on its own isnt an accurate measure of dose - so if pure a small lady (say 50 kg) then 50 mg of Pred is twice as potent as 50 mg for a 100kg person. Keep active, keep positive = keep well everyone 👍👍👍👍

[Robstevens1970 in reply to Reboundman]

Yes I think it’s pretty much a standard recipe..get what your saying regarding weight to dosage. Yep through gritted teeth! BW

[KirstyW1999]

I have recently had another flare of GPA. I have hade retuximab , but the doctor didnt want me on to give the higher dose pred as I have osteoporosis so I only had 30mg . It meant that It took longer for me to feel better. 60mg hits harder.After my first course of pred 9 years ago I had osteoperniania re bone density scan my, first scan, after next scan score was osteoporosis.

I personally dont feel aging caused it or my adrenal insufficiency

I have always been fit and healthy.

I suppose everyone is different and there are lots of thing to take into consideration.

[Hidden]

Funny and scary story here. I was DX with GPA in 2017 and spent 3 weeks in the hospital. My kidneys were trashed so I had to start hemo dialysis. When my Nephrologist came around the dialysis center to see his patients, he asked me how I was doing. I told him I wasn't getting any sleep. He asked how much prednisone I was taking and I said 100mg a day. He flipped and said WHAT!!! I told him that's what the discharge doctor put on the discharge instructions. He says, that's not what I told them. He told me to take the 50mg pills I have and cut them in half and take 25mg daily. I was on the 100mg for about a month before that happened and I gotta tell you, I was bouncing off the walls. I sat on the couch at night talking to the walls while my wife slept in bed. Anyway, I took the 25mg up until 2019 when all my GPA meds were stopped. Been in remission since then. My neph has me on 5mg a day because I told him I felt lethargic during the day. It does help.

[Robstevens1970 in reply to Hidden]

Jeez! that’s a big mistake! Glad there was a happy ending!

[TiffanysPancreas]

I'm currently on 40mg a day for what is possibly autoimmune pancreatitis and I'm having all the side effects. Dr just told me to start weaning off. not sure what else I can take or what to do from here. Was never told much info from Dr when I started 3 weeks ago but have read from other groups that 40mg is a high dose and you should also be taking calcium & vitamin D to prevent osteoporosis

[Robstevens1970 in reply to TiffanysPancreas]

Hi Tiffany, yes I think 40mg is high which is what I started on. Yes I’m puzzled as to why you haven’t been prescribed the other medication to counter the steroids.

I’m on omeprazole for gastrointestinal side effects with calcium carbonate tablets daily along with one dose of alendronate acid a week to counter osteoporosis. I would definitely bring this up with your consultant, you should have a plan to come down from 40mg set for you.

If you are experiencing side effects such as stomach and joint pains I would see your Gp, ask questions and don’t suffer in silence.

Hope you get things sorted.

BW

Robert