Has anyone been on prednisolone for over 1ye... - Vasculitis UK
Has anyone been on prednisolone for over 1year I am still on quite high dose of 15mgs after 1 year.any problems?
I've been on Prednisolone for 15 years now. Initially I was on an extremely high dose. After a year or two we managed to start tapering me down, and I reached a low dose. Then my disease relapsed in 2004. I have been on a very hefty dose ever since then, while we struggled to control my cerebral vasculitis.
To be honest I don't have a problem with Prednisolone. It has made me extremely overweight (gaining 40kg) and develop early Osteoporosis. But it is keeping me alive. And I know how bad I can be when I try to lower it too early. I would much rather take it and live.
John took prednisolone for 10 years .. hefty doses for the first few months..then tapering very slowly ... finally reducing to 10mg 3 years ago then very slowly tapering to zero last year. John has not had any problems really with taking prednisolone and took all the extra medication for Osteoporosis. He has had 2 Dexa scans in 10 years and all seems to be ok. Sometimes, we find that some people with Vasculitis are advised by the medical profession to reduce their prednisolone too quickly and the result can be a relapse or extreme fatigue. I am afraid it is all about getting the balance right for you and how your particular type of vasculitis is affecting you. John says that Vasculitis is like a crocodile at the bottom of the river and when it comes to the surface you have to hit it with a wacking great stick to knock it back down to the bottom again (usually with IV Cyclophos and Prednisolone) then you have to keep it from coming to the surface again by tapping it with a smaller stick ( smaller doses of steroids and milder immune suppressants) . It all depends how stubborn your corcodile is?? Some crocodiles become docile and stay at the bottom and need less and less taps with the stick but some keep trying to raise their head above the water. Occasionally a crocodile can lie very docile on the bottom for years with no taps with a stick but can suddenly raise it's head again for no particular reason, that is why no one who has had vasculitis and is in full remission should totally be signed off from the hospital/consultant. Even if they only have a check up once a year and they must always monitor how they are feeling on a regular basis.
We also find that some people will take 2.5 or 5mg of prednisolone for the rest of their lives but they can live a relatively normal life on this dose and are not overcome with fatigue or become unwell so often.
hope this helps
Susan
I love the crocodile analogy. I ‘m just coming up to 5 months of my initial treatment for MPA and it does seem my steroid dose has been dropped a bit too quickly. I was fine until I went down to 10 mg of Pred, then more bouts of fatigue started creeping in, followed by a minor flare (first since the treatment started). I’m now back on 20 mg. If I’m on this dose for a while it is at least reassuring to hear that it is no big deal. It does appear in my case the cyclophos stick has not been bashing the crocodile hard enough. My ANCA levels have come down but they remain persistently high. My consultant is going is going to give it a couple more final whacks and if that doesn’t sink it to the bottom then it looks like she may end up breaking a branch off the Rituximab tree.
Thanks Chris
Love the crocodile analogy too.
At work we used to complain about spending too much time fire-fighting problems by "shooting crocodiles instead of draining the lake". I reckon it applies to Vasculitis too. We just need the medics and drug companies to get a move on and work out how to start draining the lake 
The body produces about 5mg of natural steroid each morning but extended use can suppress this function so when considering tapering it's best to get a test done to ascertain this. To be honest 15mg isn't a huge dose but like John, I've been able to get down to zero after 4 years and my bone density is fine. As Susan suggests, tapering needs to be done slowly and in a carefully controlled manner. It took me 9 months to get from 10mg to zero. Bear in mind that a 5mg to 2.5mg drop is a 50% decrease so rather than reducing the dose when on low levels (say <2.5mg) it can pay to reduce the frequency of the dose e.g. 1 tablet every two days then 1 every three then drop to 1mg each day then every other day etc.
Healthy wishes.
Thankyou for all your answers. Just a bit worried about prolonged use and also not sure if shoulder and arm weakness a sign of steroids or vasculitis flaring up again!!!!
Hi,
I'm glad to say that I am completely off steroids (April this year) but it wasn't easy to do. To be honest I've never felt better but I know things can change in an instant. And if I become ill again no doubt I'll be straight back on them.
I was on 60mg initially in the hospital and tapered down over 3.5 years but it took me 3 attempts to finally get there.
One year on and at 15mg is amazing! You seem to be more fortunate than most of us. Some Vasculitis patients never get off steroids but, as Vivdunstan said, it keeps you alive.
Towards the end, I began to have unpleasant side effects from the steroids and they were effectively working against me instead of helping me.
To quote the words of a well know song "The road is long, with many a winding road..........."
I love the crocodile analogy too..exclllent.
I have been on 40mg for two years and have developed Cushing's Syndrome. Like others I have tried to taper but after a couple of days I have flared. Everyone tolerates preds differently. Preds have really impacted my physical ability not to mention how I look, not weight gain but actually how I look....Cushing's Syndrome does that. But I always remember its worth it is worth it when I kiss my children good mornng each day.
Good Luck in the tapering
Sarah
I have been on Pred for 10 years, firstly with a 5 day IV when I was very poorly, then on 60mg daily tablets, now reduced to 7.5mg daily, I have been on this dosage for 2 years, weight has now reduced to normal, I feel fine, only side affect which I put down to preds is cramp in my legs/feet and hands and the restless leg syndrome mostly in the evening, otherwise as a maintenance they are keeping me more able to cope on a daily basis.
I was diagnosed with WG in 2009 and was on a hefty dose of Prednisolone but after 3 years I am in 10mg and struggling to get any lower, I put on 5st but have lost a stone through reducing the Prednisolone.
Dea Scot,
I can't really add much, to what's already been said, but I have been on Pred. for fifteen years; high dose to begin with and now 'stable' on 6mg.
Hope that you remain 'well', best wishes
AndrewT
i have been on predisolone for 2 1/2 years gradualy reduced from 60mg am on 5mg now, also azothiprine 125mg. I need to lose weight and am struggling with this, I can be very good on 1500cals per day, and the weight has not budged for 2 years. it has just started to come off now, and think that co-incides with cyclophospmide leaving my system, as I have had constant diarrea ever since I started that treatment 2 years ago, my digestive system has suddenly reverted to normal, and at the same time the weight has begun to come off. My doctor was going to start reducing medication after 2 years, but the p-ANCA titre suddenly became weakly positive, after being negative for ages, so he is keeping up the medication. I am a bit tired of taking 10 different types of pill each day, but must go along with medical advice. I want to live! good luck and good health to everyone
Thankyou all for your replies,helps me come to terms with prolonged use of prednisolone.thankyou.
