Getting off Pred.

[lnem]

I've been diagnosed since 2002 with WG/GPA. Just wondering if anyone else has been able to get off Pred.complelely. My specialist (rheumy) has said I'll probably never be off it. The idea of this really depresses me! I'm down to 7.5 as a maintenance dose but would love to be off it.

[beljac]

It is a very slow process but can be done 1mg at a time, patience is what it takes. My husband has Wegeners/GPA and is too down to 7.5 mg with issues. We reached out to someone that has managed to get down to 1mg but it took two years, so as you see it takes time and patience. Talk to your doctor about the different methods of the Prednisone taper. Good luck

[sasefc]

Like you I have wg/gpa. I started on steroids nearly 3yrs ago. I started on 60mg a day and I am now down to two mg a day and they hope to have me off them early next year. Mine affects my lung and kidneys. I am under a kidney specialist. So i don't know if mine may be slightly different. Good luck and I hope you get to taper down. X

[shanat19]

Like you I have had GPA since 2002. I was originally on a high dose of prednisolone as part of an aggressive treatment plan, gradually reducing over many years until I was on a maintenance dose of 5mg per day for years. I have been off prednisolone entirely now since about 2010. One of the things that I have found is that one doctor may say one thing, one doctor another. They judge things through their experience of previous patients, but we are living creatures and no two are the same. It may not be the case that you don't come off prednisolone entirely. And if you don't, there is obviously a valid reason why.

[Jase222]

Hi I have MPA and was down to 5mg at one point , then I had a chest infection and went back up to 15mg and now I self medicate , my doctor said it was like the holy grail , it's poss to get off it but very few do and it can take years

Good luck

[Hidden]

Hi Inem,

I don't have GPA but the the stand out questions for me is are you on any other treatment/ immunosupressants, how much experience does your Rheumy have of GPA and are you happy with your treatment overall.

If your Rheumy thinks you will never be off it then they won't have the motivation to help you achieve that.

GPA is such a rare disease that you really need to attend a specialist centre to make sure you are being treated as well as you can be.

Best wishes

Keyes

[lnem in reply to Hidden]

Hi Keyes,

Thank you for your reply. I agree with your observation that if my rheumy thinks I won't get off Pred. that it lowers my motivation. I am currently taking 500 mg of mycophenolate ( reduced from 1000mg) twice daily. Lot of issues with pain. This leads me to think if I mention it to specialist he will want to increase the Pred again. While I understand that it is a life saving drug I just hate the idea of being on it for life. My nephrologist seems to have a better attitude towards reducing but you know how it is they don't like to step on each other's toes!

Thanks again. lnem.

[Hidden in reply to lnem]

Hi Imen,

Why did they reduce the mycophenolate? Was in due to side effects? I would have thought reducing your pred would be more of a priority.

I know what you mean about Dr's communication. Have you ever thought about being referred to a multi disciplinary Vasculitis Clinic? There are a few dotted round the country ( Aberdeen, Birmingham, Cambridge, London to name a few ). Theoretically the care there is better because all the services are under one roof and the communication is better. Worth a thought anyway.

Best wishes

Keyes

PS have just seen your other reply, good luck in Nov with your specialist. I think that Cambridge welcomes phone calls from other hospitals looking for advice if you can't get a referral there.

[lnem in reply to Hidden]

Hi Keyes,

Thanks so much for replying again. Tbh I think maybe I'm just not the type of person who questions the medical profession enough but that is changing. The myco was reduced when I last asked to reduce Pred! do you have any tips on the sort of questions I should ask? I have had a stroke which affects my right side though not as bas as it could have been also a pulmonary embolism which was very serious (6weeks in hospital ) I'm trying to get more mobile which is hard enough as the pain is a big factor also. Sorry to rant on.

Best wishes lnem.

[Hidden in reply to lnem]

Rant away Inem, although I wouldn't call it that!

I don't know if you have ever looked at the Vasculitis UK website, it has a very good Vasculitis Route Map and the helpline is wonderful, they can advise you on treatment and whether there is a vasculitis specialist in NI.

It does seem a bit strange to have reduced your mycophenolate when you are still symptomatic. 500 mg twice daily is a low starting dose. I suppose the question to ask is how many GPA patients does your Rheumy treat and what type of experience do they have in Vasculitis. I totally understand these are very difficult questions to ask, especially if you have been seeing your Dr for years.

Your medical history does sound very complex, are your stroke and PE thought to be related to your GPA? Have you ever been offered treatment such as Rituximab ( I am assuming you are ANCA positive? )

My experience of the past 2 years has taught me that the NHS is very good if you are critically unwell but sometimes isn't so great at managing rare, complex conditions. Dr's need to treat a critical mass of patients with vasculitis to gain the necessary experience in treating it effectively. Of course things should just fall into place but quite often we need to ask probing questions and be our own best advocate.

Good luck, if I can help in any way please let me know. I did try to message you via this site but it wouldn't let me.

Regards

Keyes

[Doghouse]

Hi , I was diagnosed in 2012 with GPA . I started on 50 mg prednisolone got down to 5mg then had a slight flare so prednisolone was put up to 10mg, I'm am now back down to 4mg. My one consultant suggested I drop my preds my 1mg per month , my other consultant suggested I drop my 1mg every 2 months, due to the fact we are coming into cold weather which affects my joints and I'm going on holiday in December and I don't won't too risk another flare so this time it's very slowly does it. It's been 12 months since I last had rituximab and I don't have anymore planned fingers crossed.

Good luck with your reduction

Doghouse.

[Katie18]

hi I have Churg SS and have just managed to get off pred after 3 years. its very early days so im touching lots of wood. It needs to be very slow - when you get to 5mg a reduction of just 1 or even half mg every six - 8 weeks. in the latter stages i did alternate days 1mg then a half mg.

Some people dont ever come off completely but remain on very low doses - as thats what they need to have a good quality of life. Sometimes being on pred for a long time affects the body's ability to produce natural steroid.

The key is listen to your body, lots of patience, when you drop even a small amount you may struggle for a week until your body adjusts. Id tell your consultant that is your aim and discuss the options with both them and your GP. Best of luck with it. Small doses are not very harmful to the body so dont get despondent - and it may be that you have to weigh up the options for the best outcome for you. This disease affects everyone differently. hope that helps

[PMRpro]

I have a vasculitis (polymyalgia rheumatica) but it is always dealt with by rheumatologists and although pred is the only thing that manages the symptoms until it burns out most doctors seem desperate for us to get off it far too fast which leads to flares and ending up yoyoing the dose which just leads to other problems. I know a lot of people who would like to swop to your doctor!

But to get to the lowest dose often needs a VERY slow rate of reduction to avoid steroid withdrawal symptoms which can be mistaken for the original disease. I take a month to reduce from every day one dose to every day a dose just 1mg less - it avoids the withdrawal problem - but if I go too low the PMR surfaces. I'm brilliant at 5mg, 4mg seems just very slightly too low. I'd got to 3mg, but after about 2 months the symptoms appeared again. Back to 5mg.

[PMRpro]

I have a vasculitis (polymyalgia rheumatica) but it is always dealt with by rheumatologists and although pred is the only thing that manages the symptoms until it burns out most doctors seem desperate for us to get off it far too fast which leads to flares and ending up yoyoing the dose which just leads to other problems. I know a lot of people who would like to swop to your doctor!

But to get to the lowest dose often needs a VERY slow rate of reduction to avoid steroid withdrawal symptoms which can be mistaken for the original disease. I take a month to reduce from every day one dose to every day a dose just 1mg less - it avoids the withdrawal problem - but if I go too low the PMR surfaces. I'm brilliant at 5mg, 4mg seems just very slightly too low. I'd got to 3mg, but after about 2 months the symptoms appeared again. Back to 5mg.

[lnem]

Thank you all for your very prompt replies. I have an appointment with my specialist in early Nov. so I'll have another chat with him. As I live in N. Ireland I haven't been to a specialist clinic but I know of people who have travelled to Cambridge from here,so maybe that's an option. Again thanks for the prompt replies.

[Hidden]

I have WG/GWP and like many others, have been pred. free for almost four years. As has been said, it's essential to taper but suggest the regime should be considered in percentage terms rather than in active ingredient quantities over four or more weeks per drop. e.g. 10 mg to 7.5 mg = 25%, 7.5 mg to 5 mg = 33%, 5 mg to 2.5 mg = 50% drop etc., so the body gets bigger 'jolt' when moving to a lower dose. Thus, it's better to use the smallest possible drop to achieve a similar percentage.

Before dropping below 5 mg it's essential to ensure your body is producing sufficient quantities of natural cortisol as it can often be impaired after long term use of prednisolone. This is done using a simple blood test first thing in the morning.

Once down to 2.5 mg I extended the time interval rather than the dose. e.g. 2.5 mg every other day for two weeks then every third day for two weeks, then every fourth day etc. I took approximately 6 months to taper from 15 mg to zero and whilst I've no comparative evidence it was a more robust method, I suffered no withdrawal or side effects.

Healthy wishes.

[lnem in reply to Hidden]

Thank you Martin for your very extensive and easy to understand explanation. It has been very helpful.

Best wishes lmem.

[Chris-Bromsgrove]

Hi Inem

Some very valid points have been made about the difficulties of weaning off pred. However your consultant may also be thinking about ensuring you have sufficient medication to protect you from vasculitis flares. I have MPA which has been in drug controlled remission since 2012, with no flares. However my nephrologist, who has a wealth of experience in treating vasculitis will not entertain reducing my 5 mg Pred maintenance dose of because my ANCA PR3 remains high. That puts me at greater risk of flare ups and it is likely to remain like that for the duration. I would rather not be on the pred or the 2 grams daily of Mycophenolate but I am thankful that it is giving me a good quality of life.

[lnem]

Hi Chris

Thanks for your input also. It's very difficult to gauge whether to push for reduction or not. Although everything seems stable (according to bloods) I haven't got a great quality of life at the minute. Almost every day is a struggle (pain - wise) and I just want to get to as normal a living as possible. Maybe I'm focusing on the Pred when I shouldn't be but I just hate taking it. I intend to have a thorough chat at my next specialist appt. in Nov. and will report back. Once again a huge thank you to you & everyone else who replied to me.

Best wishes. lnem.

[sreblem]

Hi

I have MPA with Kidney involvement I started on 60mg Prednisolone 15mths ago now down to 2.5mg. Hoping to drop to zero in 4 weeks time. Also on Azathioprine which if all goes to plan will also be reduced. I now have normal CRP and my last ANCA was negative.. Been treated at Edinburgh Royal which has a specialist Vasculitis clinic which has been very good, only which my GP had sent me to hospital long before they did.

[lnem]

Hi sreblem

Wow that's great!! I have stage 3 ckd although it remains quite stable with just the odd blip. I was lucky enough to be diagnosed fairly quickly but the specialist who treated me ( fantastic lady) moved over to treat children and I was without one for quite a few years. During which time I just muddled along. Hopefully I'll get things sorted in Nov. when I have my next appointment.

Best wishes lnem

[SABG]

Hi, I have GPA (1999) but only treated properly since 2004. Initially on 60mgs pred for 6 weeks and dropping gradually till now on 2.5mgs plus Mycophenolate 1,500mgs daily. I am now CRP normal and negative ANCA, so I keep asking if I can further reduce in the hope of completely coming off the preds. At last I am having a synacthen test in a few weeks time to check whether my adrenal glands are producing enough natural cortisone! It means being at a day-case clinic where I'll have a blood test, then the infusion, then 2 more blood tests at intervals of 30 mins and 60 mins. I then see the Consultant 2 weeks later for results, so I really hope the old adrenals are alive and kicking!! Good luck Inem, as you can see we are all different in our response to treatment, but like you I really want to come off the preds as I feel well.

[lnem in reply to SABG]

Hi SAGB

Thanks for your reply. Until recently I didn't know about the test for natural cortisol. Because of this I just took the information my consultant gave me at face value. Not so now! I intend challenging him about this when I see him early in Nov. thanks again I will let everyone know how it goes. Best wishes lmem.

[SABG]

Hi Inem, (love the pic of your doggie, I must get round to putting my Jessie on as my face!)

I will let you know the outcome of the proposed test....the thing is that when one has been on high steroids for some time and even though they are gradually reduced it does not always mean that one's own adrenals will produce sufficient levels of 'natural cortisone ' to sustain life so to speak.

If they don't and one stops artificial steroids suddenly, then a condition called Addisonian crisis can occur which is dangerous and why we are meant to carry a card stating that we are on steroids in case of ie accident/whatever and ending up in Hospital unconscious/coma... when we may not be given the daily prescribed dose etc.

But I am hopeful that as I am now on such a low dose that my adrenals will have started to produce natural cortisone...time will tell. I'll be in touch and I so hope your Docs will do the synacthen test for you too.

Take care, speak soon! x Sheila

[lnem in reply to SABG]

Hope all goes well for you Sheila. It's not actually a pic of my dog just a random one but you've put the idea in my head now so I think I'll upload one. Thanks for your very useful information. I hope to be able to use it at my appointment.

Take care & best wishes

Geraldine.

[SABG in reply to lnem]

Hi Inem, so sorry for not replying sooner but as of a few months ago I came off steroids completely and since then have been able to reduce my Mycophenolate to 1000mgs/day. I feel well with no side effects and I am so grateful to be able to reduce medication without GPA attacking me. I hope you are keeping well and have been able to reduce your steroids too? Since the end of steroids I am a whole stone in weight lighter!!! Take care xx

[lnem]

Hi Sheila

That's great news. I am currently on 5mg of steroids & 1,500 of cellcept. Waiting patiently on appointment for rheumatology-----should have been seen in August but no word yet. Have been feeling horrible for so long I can't remember what "normal " feels like. I could certainly do with the weight loss! ( if only ) sometimes I think that the extra weight is a part of the problem. Hope you continue to improve and stay well.

Best wishes Geraldine x

[SABG]

Hello Geraldine,

Many months ago I too was on steroids 5mgs (from 60mgs) and 1,500mgs MF but I persevered to come down as I felt well. Thing is that it does depend on what the blood results are and how you are feeling....I am feeling fine and so want to come off all medication as I feel I am in remission and want to be off off everything. Well I do understand that this is horrible for you and I never thought there was an end to medication but there is if you improve and feel better. I feel like taking a giant step and saying let me be drug free and see me in 3 months time. I cannot believe I still have GPA. I truly think I am cured of it. That is just my opinion Inem. I will post my doggie as my pic if I can!!! She xxx

[lnem in reply to SABG]

Hi Sheila

It's so good that you are feeling so well. I really hope you continue to improve. I'm still trying to post a pic of my real dog!! If you manage it maybe you can let me know! Lol. Geraldine x

[sreblem]

I have MPA with severe kidney damage. Started on 60mg 21/2 years ago now off steroids completely and was on azaprine which I am now off completely for 8 weeks all going well but keeping fingers crossed.  

[lnem in reply to sreblem]

sreblem

That's good to hear. I hope it all continues to improve.

Best wishes G.