Stopping Prednisolone

[John_Mills]

In June of this year John finally stopped taking predisolone after a lengthy reduction programme. (7.5mg of predisolone is the equivalent of what the body produces so once you get below that level you are depending on your own adrenal gland to provide some of the steroid.) For about 2 years he was on this dose then gradually he reduced to 5mg, then 2.5mg then John was taking 2mg and then 1mg for over a year before he stopped. Since stopping completely John feels as though all his joints and muscles are very stiff much more than before...has anyone else experienced this after stopping predisolone.

[Jim-Bornac]

Yes. Been off prednisone for years and It did not get any better for me.

[PatriciaAnn]

I managed to get down to zero, after a long battle with reduction. I felt OK and didn't experience any aches or pains. However, after six months I started with all the signs and symptoms I had when first diagnosed. I was having a flare and the CellCept stopped working (or couldn't cope on it's own). So now I take a daily maintenance dose of 5mg along with my 100mg Azathioprine. It was a great feeling to be Pred free, but for me it was a price too high to pay.

[Jane1869 in reply to PatriciaAnn]

Hi do you have mg x

[John_Mills Volunteer]

This is what worries John..a) it won't get any better b) He will eventually have to go back on them ;-(

[Hidden]

John, I'm going through the same thing, 2 ibuprofen and co-codamol (strength dependant on pain) not doing much to help. Got resp appt in October so going to speak to consultant then, but he did mention a 2.5 mg daily maintenance dose in July when I saw him :-(. x

[Jim-Bornac]

I never went back on prednisone. Have learned to live with it.

Plus my neurologist does not believe in prednisone. He's a real hoot.LOL

[Dbis22]

I was on 8mg about 9 months ago. A Registrar dropped me very quickly to 4. Now I am properly supervised and it's nice and slow. Now down to 2mg and haven't felt worse joint-wise etc. for years. The plan is to get me down to zero for Christmas day. I am reducing by 1mg every 8 weeks. Not at all sure how I'm going to cope with this. I'm taking far more Tramadol than I would like. The goal is admirable .... just not necessarily with MY body!!

[BooBoo39 Volunteer]

Was very interested to read how much corticosteroid (prednisolone) your adrenal gland should naturally produce. about 7.5mg you say. My recent flare up after four and half years relative remission started at the end of May this year. Prior to this i was experiencing increasing joint stiffness primarily knees, ankles, tops of my feet and lower back.Once my CNS/Cerebral Vasculitis decided to kick in for a major flare up i was immediately started on 40mg Prednisolone whilst i was in hospital although i was in excrutiating pain in my brain and spine which was unresponsive to copious pain killers i did notice that my joint pain had deserted me sometime into the fourth day of treatment. But i did not know if this was the effect of all the pain relief. Over the next few weeks my dosage was tapered on the Prednisolone ;- 2 weeks 40mg/day, 1 week 20mg/day , 1 week 10mg/day, At this stage the tapering did not get any further as i was re admitted to hospital after only being home 5 days and in all that time other than occasional hours whilst on 40mg/day i was still in unimaginable pain in my head and top of spine. It was decided the tapering had been too steep. I was started back on 40mg/day for 3 weeks after the first week back on 40mg the pain became responsive to pain relief.Then 1 week 30mg/day .1 week 20mg/day . 5 days 10mg/day. 5 days 5mg/day. 4 days 2mg/day. and then should have been 4 weeks 1mg/day. BUT 2 weeks in to 1mg dose nearly there ! It all came back last week now back on 40mg/day again tapering to be decided.

The interesting thing re John's 7.5mg point is that at the first regime of Pred although never pain free it started to escalate somewhere in the 10mg zone. on the second regime the pain settled quicker but again issues re stiffnes and pain in spine and brain and other symptoms confusion dizziness were jumping in around 10mg-5mg taper. And after dropping below 5mg all my joint pain i had felt prior this flare up returned .

There is definitely something re the <7.5mg dose and it's affects on my individual case.

Re the joint stiffness although i had been checked for arthritis and thankfully negative earlier in the year i wonder if the vasculitis possibly makes us more susceptible to joint inflammation which inadvertantly is settled by the Prednisolone. Or maybe for me it was just the high level of pain relief i was on to try and soothe my swollen brain which i suppose could have eased joint pain in an Elephant and there was no wonder i had no pain in my knees ... Ha Ha

Very interesting point John re 7.5mg i will now investigate further unless you have any case studies you can quote?

[John_Mills Volunteer in reply to BooBoo39]

No case studies, I was told by somebody who would know, but I can't remember who. I've just quoted it ever since! Of course it takes a variable time for the adrenals to cut back in and it's alway possible that the corticosteroid producing tissues have atrophied in part or altogether. There is a test to assess your natural steroid production, but I don't know much about it.

Most hormone producing glands have a feedback mechanism so that the level of circulating hormone is monitored and production is increased or lowerered to maintain the correct level. In some cases, like the thyroid gland, the level is steady to maintain base metabolism - like the tickover on a car. In other cases, like adrenalin (also produced by the adrenal gland) the level goes up and down rapidly to raise and lower metabolism to meet emergencies - the fight or flight hormone which in turn is controlled by the pituitary gland - an extension of the brain.

Natural hydrocortisone production is fairly steady (at around the equivalent of 7.5 mg pred - if my informant is correct!). But it can rise fairly rapidly to cope with physical stress - injury or infection. It works by controlling the inflammatory processes and the immune response. These processes are very important for repair and fighting infection - but sometimes you can have too much of a good thing, as in vasculitis or rheumatoid arthritis. So artificial pred will reduce the inflammation in joints due to the auto-immune effects of vasc or RA. Or something like that! But I bet you already knew all that!!

[Tony-LakeDistrict]

Avascular necrosis

After 2 years I finished taking Prednisolone christmas 2009, starting at 50 mg and slowly down. In the last 14 months I have had 2 new hips and a new shoulder, caused by Avascular necrosis, which I am told is an affect of taking the steroid "Prednisolone" for a long enough time.

Another side effect was Steroid-induced diabetes, which disappeared within a month of stopping the steroid

[nannie in reply to Tony-LakeDistrict]

I have been struggling with steroid induced diabetes for 18 months. Started on tablets but quickly went on to insulin. I have found this harder to deal with than 9 years of WG. I was down to 5mg prednisolone but have been put back up to 10mg. I do feel marginally better, but feel so fat, I can't bear to look in a mirror. Now they are suggesting rituximab.

[John_Mills Volunteer]

Large doses of prednisolone over a long time can cause damage to bone by inhibiting the bodies routine bone maintenance regime - usually described as "brittle bone disease" But the effect is more often seen in hip joints braking down and even worse, the vertebrae collapsing thus trapping nervesand causing chronic pain. For that reason, anyone taking high dose pred (above 19mg) over any length of time should take a calcium/Vit D supplement such as Adcal and possibly an Alendroate drug to prevent osteoporosis. Periodic dexascans might also be advised to monitor bone density.

[vivdunstan Volunteer in reply to John_Mills]

A bone scan showed I have osteopenia, which is the early stage of osteoporosis. I'm only in my 30s. But I'll never get off my steroids, and am unlikely to get down as far as 10mg daily as things stand. I've been on a high daily dose permanently since my huge relapse in 2004. I'm too young to take an Alendronate drug (not prescribed by the NHS for women in my age group) but chomp on calcium daily - yuck

[EmmaC in reply to vivdunstan]

Hello vivdunstan, I'd enquire again about an Alendronate drug, I'm 29 years old and I've been prescribed Alendronic acid to take weekly alongside my daily calcium tablets. My prescription was given by my Rhuematologist (never know how to spell that!), and is on the NHS. Hope this helps

[vivdunstan Volunteer in reply to EmmaC]

Thanks Emma. Yes that helps a lot. I'll ask again.

[Hidden in reply to vivdunstan]

I agree with Emma, i was put on alendronic acid and calci chew too,they say to look up what foods have calcium in too, so that if you have a day with calcium enriched foods you can drop one of the calci chew,but the alendronate is important

[Sam82]

Hi ive had a rough road with high dose of pred for the past four years, as soon as my pred dose was dropped my scleritis would flare up again despite taking predforte and acular eye drops. However this past two months my optham prescribed me optilast eye drops, so I dropped my pred dose fully down to zero and carried on using optilast. I've had no joint probs (thank God) only mild aches and pains here and there, nothing which painkillers couldn't control. However, my sinus pain did flare up, really badly, with a vengeance lol! So I'm back on 3.5 mg of pred! Got to say it felt sooo good being off pred, it was a relief from the usual side effects of paunchy bloated belly, moon shaped swollen face and neck. Another which really helps me cope is taking a hot shower or bath every morning and evening, honestly the temporary heat treatment from the hot water is so soothing on aching muscles and bones, really helps!!

[John_Mills Volunteer]

I would be concerned about the sinus flare. If you have been taking high dose steroids for four years, it might have been masking the fact that your WG is not actually under control.

[PaulBingham]

I have had Wegeners since 2006 with a relapse/flare in 2009. Throughout this five and a half years I have been on Prednisolone/steroids with varying dosages.

My consultant, probably like all consultants wants to get my dosage down as low as possible and as quickly as possible.

The two key issues for me are to ensure that by doing so I do not have a further relapse and to ensure that my joint pains are manageable.The first issue is monitored by blood tests, particularly the ANCA test. The second issue is critical for my quality of life. My consultant and I have slightly different aims,he wanting to gat dosage down while I am mainly interested in my QUALITY of life. Over the past two years I have experienced periodic intolerable joint pains and have self prescribed a higher dosage which does help, Joint pains can occur randomly or as a result of out of the ordinary physical activity from golf to gardening to everyday activities.

My consultants target is to reduce dosage to 5mg daily BUT my target is to have a dosage which gives me a good quality of life . If I can achieve this on 5mg all well and good,but if it means my having 7mg then I will do so. My body dictates the answer as to the exact dosage. Dosage by numbers should be the result of your individual body situation and not any dictatorial theoryof optimal dosage. We are all different and will probably always require differnt dosage decisions.

[mandijt]

I had been on pred 5mg and stupidly didnt taper them just took myself off them! The muscle and joint pain returned and affected every joint much worse than i had remembered them. However, the pain is managable and a small price to pay for me as i was desperate to come off them. I had been on pred for over 5 years and after a break of 3 years went back on them last year after a nasty flare up. I

[John_Mills Volunteer]

Quite understandable that you might want to get off the steroids, but below 5-6 mg it should be veery sloowly to allow your natural production of home-grown cortisol to come back on stream. Sudden withdrawal can cause shock - sudden loss of blood pressure etc which can be really serious.

[StephanieDiane]

After coming out from hospital I was taking 60mg prednisolone I have since been reduced after 17months to at the moment 2mg and hope to reduce to zero in the next couple of months, but yes I am suffering pain in all my joints.

[HiveMind]

I've been off Prednisilone for a month now (April 1st would you believe!!). Went from 60mg per day to zero over 3.5 years and I don't feel great.

Amongst other things I've developed very bad pains in all of my joints, the worst being in the ball joint of my foot, which obviously has put a stop to my visiting the shops! (I wish! That stopped the day I was diagnosed).

My doc has hinted that I might have to go back on them if nothing changes, which has devastated me. It wasn't easy getting off them in the 1st place. I'd deal with the pain if only I could stay off them for good.

It seems like the "goal" of zero preds is held up as the answer to all our prayers but once we get there, they move the goal posts!

It's still early days yet, so I'm hoping things will improve.

[HiveMind in reply to HiveMind]

As an addendum to my last post: things are going very well, haven't got the greatest amount of energy in the world but the joint pains have improved considerably.

However I went Gluten Free around the same time (my own decision) and I think this has helped enormously and as a benefit has helped me lose over a stone in weight (obviously coming off the preds has helped too).

(Also saw my consultant recently and he hasn't put me back on the pred!) Result!

[hannesjooste]

Hannes

I have WG or as renamed Microscopic Polyangitis with perepheral neuropathy - nerve ends in hands and feet affected - numbness and painfull. I am on 5 mg Pred (coming from 40 mg 19 months ago) and 150 mg Azathioprine. Although my muscles have recovered quite well I still have the painfull numbness. In the last 5 months I have a new symptom - the soles of my feel swell and are very painfull - Tramadol helps for the pain although I try to limit the use. I am now wondering if this is not due to a too low a dose of Pred and thinking of going back to a high dose to see if the sole problem improves. All my blood tests seem to be in check

[foweraker]

I have been off steroids for for the first time in 9 years since being diagnosed with vasculitus in 2009.

I have been in remission for around 4 years since having ritixumab infusions. And had been trying to get off steroids since that time. I gradually reduced them down to 2mg but could not get any lower without my body aching, fatigue, tiredness and brain fog.

I have had many tests to see if my adrenal system is working properly as when you have been on steroids for a long time your adrenal glands no longer produce Adrenalin as they used to, however these tests did not show I had any problems with my body producing enough Adrenalin.

I took drastic steps and totally altered my diet and started this off by detoxifying my body.

cutting out sugar, wheat, rice, potatoes, taking supplements, plus lots of alternative remedies. i do lots of green juicing, I drink apple cider vinegar, I drink natural Kafir a pro-biotic daily.. i have now been off steroids for 6 months for the first time in 9 years.

I am rebuilding my Immune system, I believe the powerful drugs that we are given and the damage that long time steroid use does to our body damages our micriobiome system.

It may be in my head that this has helped me come off steroids but it has worked for me so far!