My friend who is on here has asked a question..... - NRAS

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My friend who is on here has asked a question.....

sylvi profile image
7 Replies

Can anyone advise my friend who is on here(but i can't remember his HU name) on withdrawal of predisone. How long does it take, what are the side effects,what is the long term damage caused by them. ANy info you can give him will be helpful.xxxxx

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sylvi profile image
sylvi
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7 Replies
PFKAAde profile image
PFKAAde

Hi sylvi

I'm not a doctor, and they would be best placed to answer those questions, but IMO I would have to say it depends!

On how long your friend has been on it, what kind of dose, their own body and it's response to corticosteroids, their adrenal function, what they were taking it for and I'm sure lots more.

What I can say:

Coming off it, for me the key was reducing the dose as slowly as patience would allow. There seems to be an effect when reducing corticosteroids that with each reduction there can be a rebound effect that is either a slight increase in disease activity or an actual effect of reducing the steroid. Symptoms are very similar so telling them apart isn't easy.

Most literature seems to say to reduce by not more than 10% of the total in one go, for me that was too fast, the following regime was useful, and bear in mind you can split the 1mg tablets to provide 1/2mg. And also that if you are on 30mg then a 1mg reduction may be fine, but then leave it for a week or two before reducing again. Once you are on 10mg then 1mg is 10% which was too much to sustain for me.

So assuming a dose of 10mg / day and reducing by .5mg

Old dose for 6 days / new dose 1 day

Old dose for 5 days / new dose 2 days

Old dose for 4 days / new dose 3 days

Old dose for 3 days / new dose 4 days

Old dose for 2 days / new dose 5 days

Old dose for 1 day / new dose 6 days

New dose.

Doing this you 'shouldn't' need to wait in between reductions, so once you get to a new dose you can then reduce again.

It takes time, but then so does having to keep increasing it again because you feel so awful.

Also this almost certainly will be slower than the docs say you need to go, and for some they are no doubt correct, for the rest of us it is much less painful.

Side effects, short-term were increased appetite leading to weight gain, water retention, swollen face, general feeling of 'oddness', emotional / mental problems. And a million others.

Longer term, thinning of the skin, bone density reduction (leading to osteopaenia/ porosis), adrenal function compromise (leading to lifelong 'maintenance' dose), possible glucose intolerance / drug induced diabetes symptoms and again a million more.

Of course not everyone get any obvious long-term effects at all and others draw the short straw, like with every other drug.

Also bear in mind that if your friend has only been on them for a short time the above reduction regime my be slower than necessary, it all depends.

It's been years since I was on them and am not aware of any lasting damage (but who knows?).

Good luck to your friend. 😀

Ade

Edit: incidentally the above regime can be adapted for any other drug you are trying (and struggling) to reduce. I am doing something similar with morphine now that I have got down to a relatively low dose because reducing by > 10% and sustaining it is a killer.

Mandalou profile image
Mandalou in reply toPFKAAde

Excellent post Ade, what a kind person you are to take such time to help someone.

Mx

orchidcass profile image
orchidcass in reply toPFKAAde

Nicely done ade :) haha you are clearly not on steroids cos you can explain all that without a million tangents, like I keep doing! Damn roids lol

Jeanabelle60 profile image
Jeanabelle60

I suppose health care providers can all be different but I have been reducing my Prednisolone intake buy 1mg per month. I'm down now to 1mg at the beginning of August. I have felt no side effects at all except that my disease has come back at me with an awful jolt. All medications, including Bio's, have not worked or I have not been able to tolerate them, I'm sero negative BTW. My Rhumatoligist has kept me on steroids for 18 months and is now weening me off them so that I can try Gold injections after my cruise in September. My wonderful Rheumy nurse Bronagh is going to be given a steroid injection so I can at least enjoy my first holiday in 6 years! All the best, Jean.

orchidcass profile image
orchidcass in reply toJeanabelle60

Oh lovely hun yes get that shot and enjoy that holiday. You so deserve it. Bring back lots of memories xx

orchidcass profile image
orchidcass

Hey Sylvi, tapering off Prednisone/prednisolone is a very individual thing and should be led by doctors. There is no hard set rules because it all depends how the patient reacts to the lower doses, eventually to complete withdrawal. I'm currently on high dose for longs has been four weeks at 40mgs, then I have to taper down by 5 mgs for five days then another five and stay at 30mgs for 2 weeks, then start tapering down by 5mgs each week, imeant to get down to 10mgs and stay there on maintenance dose to control the RA....but if I was to go from ten mgs to nothing i would then go down by 1mg every few days till I was off completely. To be honest I cant seem to get down from 40mgs without getting really ill....and I'm still swelling with the RA, even on all that?! But that's a general route for long term tapering from steroids, hope this helps

minka profile image
minka

many thanks to you all for reply to syl for me i was on 5mg sort of on and off and found enven though it was ok at first it started to get to my ligaments especialy the knee ligament and ankle ligament then when i started to still continue to take them me bones in my back started play up and teeth started to split and i was also taking adcal d3 suppliments so i just stopped taking them started taking half then just stopped dont know what my rumi nurse is going to say but had to any further info with this update would be grate!!!

ive looked on other sites on this stuff and its real poision look for predistone withdrawal problem on google I know not everyone is the same.

everything started again but in my ankle then into my knee Then whilst you are trying to hold up with better leg thats starts to go also

again many thanks regards john

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