Steroid reduction

[Craftnut68]

How do you reduce steroids from 15 to 12 .5 when you don't get a 0.5 tablet. I am new to this site and very confused re reduction. I had a small stroke end oct 15 which resulted in loss of of peripheral vision on both eyes and consultant did MRI scan and stroke was due to blocked artery. Consultant ant suspected GCA at same time I was diagnosed with PMR and was started on 60mg steroids for 4 weeks and then a reduction of 5mg every 4 days until I reached 10mg and then GP suggested after a week to go to 9mg but esr levels were rising and he put me back to 10mg but I'm in lot of pain again and I'm sure he will suggest going back to 15 next week. But the tapering down from there is confusing me. I'd be grateful for some suggestions on this

[piglette]

The coated version of pred is available in 5mg and 2.5 mg tablets, so easy to go from 15mg to 12.5mg. If you have the uncoated version you can always cut a 1 mg tablet in half, you must never cut the coated version in half though.

[Craftnut68 in reply to piglette]

Thanks piglette if I get to stage where I need a 0.5 tab I'll as GP to prescribe the coated tabs

[piglette in reply to Craftnut68]

Unfortunately the smallest coated tablet is 2.5mg. The advantage is that they do not cause the stomach problems caused by uncoated ones.

[DorsetLady PMRGCAuk volunteer]

Hi there,

If you've reduced from 60mg to 10mg in 6 months or less no wonder you are having pain and higher ESR readings. Much too quickly I would suggest. It would appear your inflammation is not under control anymore, so you need to take a level of Pred which gets it back under control.

If you go back to 15mg you need to make sure you stay at that level until things settle down again.

When, and only when you feel ok again, then start reducing again. So long as you have white uncoated tablets, they can be easily cut with a pill cutter, only a £1 or so from any pharmacy. You can get either 5mg or 1mg tablets, so you end up with 2.5 or 0.5 - useful when you get to really low figures.

However if you have the coated tablets, which some people get if they suffer from gastric problems, these cannot be cut.

As you have come down so quickly, it might be worthwhile just reducing by 1mg a time. Many doctors are in too much of a rush to reduce the levels of Pred sometimes, and it doesn't always work. In fact, it invariably doesn't work, not in the case of PMR or GCA.

[Craftnut68 in reply to DorsetLady]

Thanks Dorset Lady I personally thought the dosages were coming down very quickly from 60mg starting 17th November for 4 Wks and then every 4 days by 5 mg until I got to 10 mg on 6th Jan when he said we would go slower but on 13th Jan he put me down to 9mg but due to esr going back up to 30 he asked me to go back to 10mg where I've stayed but esr went up again to 45 and last week it was 39 I'm due to have other blood test next week. Reading posts I'm just so confused as to the road I'm travelling

[DorsetLady PMRGCAuk volunteer in reply to Craftnut68]

Hi again,

Unfortunately lots if us are confused, particularly at the beginning. There is not much meaningful information in the public domain regarding GCA & PMR. Trouble is, lots of doctors don't come across it that often either, so it's often the blind leading the blind!

Another problem, there seems to be no hard and fast rules about these illnesses either, different people seem to get different symptoms and certainly not all the ones listed, and some are similar to other illnesses as well. And most people on this site have PMR, less have GCA, and some have both, which also means that the response to some posts re PMR aren't always applicable to GCA - and visa versa!

Having said all that, my over-riding advice to all would be - try and learn as much as you can from different sites and books etc, come to terms with the fact you have an illness that could likely last between 2-5 years typically, maybe longer in some cases. Learn to look after yourself by pacing yourself, taking gentle exercise, and saying NO sometimes!

It can be life changing, but that doesn't mean you cannot still enjoy life, just at a gentler pace and perhaps a bit more forward planning!

Take care.

[Craftnut68 in reply to DorsetLady]

Thanks Dorset lady it has certainly been life changing for me I feel my life has been totally put on hold due to the fatigue, agitation, light headedness and dizzy turns and I worry that I'm not being treated right.

[Nap1 in reply to DorsetLady]

Amen DorsetLady

I have a problem with doctors that don't know what to do with us so they look to reduce our life saving drug. If only they read one of the websites and forums that we do. They either don't care enough or don't want to spend the time. We are our own advocates and must do our own research. How else would I know my herpes simplex lived inside my temporal artery and became active a month ago and is creating havoc with my blood numbers?? Or that it only lives in the TA and no other arteries. So I can't reduce because of numbers, and herpes inflammation but perhaps thre GCA is just doing fine. I have to wait and see. Also learned that the HSV may be active indefinitely. Also learned from the pro that our more reliable blood test is the CRP since the ESR is useless after 4 hours if not tested. Keep writing and reading. Also helpful is the prednisone forum. Thank you all. Craftnut take charge of yourGCA.

[DorsetLady PMRGCAuk volunteer in reply to Nap1]

Hi Nap1,

Unfortunately it's true that lots of GPs have never heard of GCA or PMR. No-one in my original surgery diagnosed either for 18 months, however, once I was diagnosed (after losing sight in one eye, by A&E duty ophthalmologist), my designated GP soon got to grips with it. Could have been guilty conscience I suppose, but what ever it raised the profile of GCA in the surgery!

My current GP, maybe older and wiser, seems to be up to speed with things. But I would certainly agree that we as patients have to take more control of our illnesses than some others do.

As you say, knowledge is power!

[PMRpro Ambassador]

A reduction of 5mg every 4 days is far too fast for a patient suspected of having GCA - 5mg every 2 WEEKS is more normal. Most people would take a good 6 months to get from 60mg to 20 mg - and a study has shown that there is still evidence of inflammation even then after 6 months above 20mg even though the blood markers are normal and the patient has no symptoms. This applies for both GCA and other forms of vasculitis.

This paper from one of the top PMR/GCA specialists in the UK and his former group in Bristol and aimed at GPs to help them manage PMR/GCA better

rcpe.ac.uk/sites/default/fi...

suggests a reduction programme whereby the patient is kept at 10mg for a year after reaching such a low dose - but they also take 6 months to get to 20mg and then take another 3 months to get to 10mg. Far far slower than what you have been told to do and they find it results in flares in 1 in 5 patients instead of 3 in 5.

There really is no point at all in rushing the reduction - all that happens is that you have problems and it means a return to a higher dose and often that cancels out the benefit you had from the hurry. The others have also suggested a return to a higher dose - you must get the returning inflammation under control, that may need 20mg. Only then can you reduce slowly - with a very close eye on the symptoms, which are king. It doesn't matter what the blood markers are doing - if you have symptoms at all you must stop reducing immediately and mark time. If 15mg works to manage the symptoms all well and good. But you must stay there for at least a couple of months to make sure you are really stable. When you reduce so fast you have no idea where you got to the change-over point where the dose was enough. You need a month at each new dose to be sure - and sometimes even that is not enough. This is a tortoise and hare business - who won the race?

[Craftnut68]

Thanks PMRpro you seem to be so knowledgeable in dealing with pmr/gca I read that it could take at least 2 years on steroids to get this illness under control but the rate I was going at was very quick . I have read loads of posts on the net and I am now just do confused and worried by the whole affair this coupled with severe agitation and dizziness caused by the steroids is getting me depressed. I had muscle pains fir a good eighteen months before all this happened in October and wonder if I had been diagnosed with par then and put on steroids would I have had the little stroke which I was told was caused by a blocked artery. This condition made me feel so alone as I don't know of anyone else who has developed this.

[Celtic PMRGCAuk volunteer in reply to Craftnut68]

Craftnut

"This condition made me feel so alone as I don't know of anyone else who has developed this."

There are a dozen or so support groups where people with PMR and/or GCA get together over a cuppa and a chat etc. If you click on the following link, you may just find that there is a group near you, in which case you need never feel alone with this condition in the future:

pmrgca.co.uk/groups/

[Craftnut68 in reply to Celtic]

Hi thanks for your reply unfortunately I have no support group near me I did find this link on the Web and have phoned the help line a couple of times which I found very helpful and now this site makes me realise I'm not alone with this condition

[olive2709]

Most of us have never met a fellow suffer , that's why this site is so good no matter what questions you have ,or how daft it seems to you someone knows what you mean.

[Craftnut68 in reply to olive2709]

Hi olive I posted for the first time last night and have already had several people reply to me which has been good as I know I'm not alone with this condition sometimes I just felt so down with it all I didn't know where to turn all I wanted to do was lie in bed with my head under the duvet and stay away from the world

[lesley2015]

This site has been a life line to me, diagnosed PMR/GCA in June 15, ups and downs like all of us, lack of sleep causes major issues, moon face and weight gain also - but always something on here to make me understand others are going through just the same thing and there is light at the end of the tunnel (I write this at almost 4am!) - aching tonight more that usual for no apparent rhyme or reason - it seems to be the way this condition works.

Best wishes...

[Craftnut68 in reply to lesley2015]

Thanks lesley yes I have the weight gain moon face and lucky if I sleep 3 hours a night if at all

There is no support group near me but I have found a pmr/gca helpline no in Scotland which I have used twice this week and found them to be very helpful

They told me of 3 groups in Scotland but none near to me so this site has been of help to me thanks

[PMRpro Ambassador in reply to Craftnut68]

Where in Scotland are you?

[Craftnut68 in reply to PMRpro]

Livingston

[PMRpro Ambassador in reply to Craftnut68]

Hmm, no, only know people in Fife, Dundee and Angus or north of Glasgow. Funny, there has only been one person near Edinburgh in all the years I've been involved on the forums and that was only briefly about 5 years ago.

My daughter lives in Rosyth.

[Celtic PMRGCAuk volunteer in reply to Craftnut68]

Craftnut, I'm so pleased to hear that you have already found and been in touch with the PMRGCA Charity in Scotland. Although you are not near enough to get along to their support group meetings, with any luck they will have made a note of your name and the area in which you live so that if they receive an enquiry from someone near to you in the future they will be able to put you both in touch. It's amazing how it helps to meet up with others over a cuppa - a problem shared is a problem halved as the saying going. Meanwhile, at least we have the wonderful forums where we can 'chat' with others who understand - even a virtual hug is better than none when we are having a bad day.

The others have given you great advice, especially about the need to slow down the speed and size of those original reductions. You have mentioned that you feel you are not being treated correctly. With GCA, you need to be under the continuous care of a rheumatologist, especially if it is your GP who you feel is not coming up to scratch. I'm sure the group in Scotland may be able to point you in the right direction as far as a good rheumatologist is concerned if you aren't already under one.

[Craftnut68 in reply to Celtic]

Thanks Celtic I will be seeing my GP on Wednesday and I now have a lot of info to discuss with him

[Cemmein in reply to Craftnut68]

Dear crafnut. I live in Edinburgh but filled my reply to you in PMR pros reply box by mistake so please read that as for you. I am another "PMRpro!" Good luck!

[Craftnut68 in reply to Cemmein]

Thanks Cemmein I live in Livingston do you have PMR GCA or both. Although I was told I did not have GCA as biopsy was negative I feel I may have it. I have been plagued last few days with pain over my shoulder blade and it makes me feel off balance, and light headed have joh ever experienced this. I have also past week felt as though someone was pressing my head behind my ear and it is a strange tingly feeling also get little shooting tingly feelings in my temple. I don't know if this is normal feelings due to the pmr or steroids I'm a terrible worrier if I don't know what's causing it. To PMRpro if you read this could you give me yours thoughts too as I intend to try and get my GP to see me face to face and I've lots of questions that need answered and I would like to be armed with some info many thanks

[Cemmein in reply to Craftnut68]

Hi craftnut68,

I have polymyalgia but my mother had both and had GCA with similar symptoms to yours. You simply must get your GP to see you ASAP & if not go to A & E ( take sandwiches & be prepared to wait for hours) but best if your GP should instantly put you on very high dose of prednisolone right away in case you go blind as this can happen very quickly. It doesn't matter which doc you see at the practise but you MUST see one tomorrow & tell them you are worried that you have GCA & need treatment right away. If they won't give you an appointment ( phone just as soon as the practise opens on the morning) just keep ringing back a& tell the receptionist you are afraid you are going blind & ask to speak to a doc on the phone or go to practise right away.

Tell them if they don't give you a steroid & you go blind it will be their responsibility. Also this you have had some steroids recently your ESR test will probably only be below 20 but they don't always realise that.

Good luck! Better to be safe than sorry!

[Cemmein in reply to Cemmein]

PS the shoulder pain will be due to PMR & the dizziness might be due to steroids but the tingly feeling in your temple & behind your ear sound more like GCA therefore more dangerous . You will know you can often get PMR & GCA together. Good luck!

[Craftnut68 in reply to Cemmein]

Thanks Cemmeinii I'm off to have esr bloods taken just shortly

[Cemmein in reply to Craftnut68]

Good, do remind them 1) that once you are or have recently been on steroids they will get a low reading and 2) just because you have a low reading you can still have PMR/GCA anyway. Best to rely on clinical symptoms even though it's not so good being on steroids believe me it's a whole lot better than suddenly losing your eyesight!

Good luck! C

[Craftnut68 in reply to Cemmein]

Hi Cemmein had bloods taken will see what results are tomorrow. The prob I had was although I was put on 60mg for 4 wks when esr was at 78 it reduced down to 16 and GP started reducing steroids by 5 mg every 4 days. And esr then started climbing again and got back up to 47 I tried to get my GP today but he won't be in until tomorrow . Hubby going to try and speak to him and arrange for him to see me . I've been on 10mg for past 6 wks during which esr went to 30 then 47 then last week it was 39

[Cemmein in reply to Craftnut68]

It does sound as though you need to up your prednisolone. But obviously I can't really tell. I think you should take your husband with you & write down all the questions you need to ask you GP & maybe he tell her how Ill you are. Whatever you think obviously.

Good luck. Let us know how you get on. We're all thinking of you . C.

[Craftnut68 in reply to Cemmein]

Thanks Cemmein I have an appt face to face with GP tomorrow and GP knows my hubby is coming in with me. I'll post he I get on.

[Parijm]

I have cut tablets with a knife, not always an exact science but you can buy a cutter in the pharmacy eg Boots have them. My rheumatologist said Pred is available in 2.5 mg, although I have only had 1mg & 5mg prescribed.

[Craftnut68 in reply to Parijm]

Thanks for this info I have 1 and 5 mg but understand from a previous reply to me if you get the coated tabs they come in small doses but you cannot half them

[Craftnut68 in reply to Parijm]

Thanks for this info

[paddyfields]

You can get 2 and a half prednisone tablets uncoated now. A lot of doctors don't seem to know this and we'll say that the two and a half size is has has to be coated and is expensive neither of which is true

[Ipsy71]

Hi

1mg pills available plus pill cutter about £3 from Boots , I sure other Chemists have them, but the most important thing is this site it has been a source of good information ie. Vit. D and calcium for side effects of steroid , walking as a form of gentle exercise to help the feel good factor ,very slow reduction of steroids, listening to what your body tells you and acting on it. Eat healthy food to give your body the fuel it needs to fight this thing, include a few nuts every day for their source of selenium and mineral.

Be kind to yourself .xx

Ipsy 71

[Charlie1boy]

Hi,

Seems you have got some really good and helpful advice from this forum -as usual I might say! I have had pmr for 14 months, and have received plenty of help.

If you have not already done so, I would suggest you get yourself a copy of Kate Gilbert's book "Polymyalgia and Giant Cell Arteritis: a survival guide". You can get it on Amazon relatively cheaply, and I feel sure you will find it a help.

Also, there is a booklet from pmr-gca-northeast.org.uk called "living with PMR&GCA". This is also very informative and doesn't cost a lot.

If you do get these, you will,for sure, realise that you are not on your own.

Wishing you all the best.

[Craftnut68]

Hi Charlie boy1 I got this book from Amazon for my kindle and an information pack from Scottish branch of pmr/gca and already lots of support from this website thanks for your input

[pollyg263]

pill cutter, I use one cut mine in half and into quarters. when I am on 3 ,3/4.

[4sibbs]

My mum is on a reducing dose of half a Milligram a month her GP does it by alternating the daily dose e.g. 9 one day then 8 the next.

[Jora]

My main condition is Rheumatoid Arthritis, though it was Polymyalgia-onset. I'm normally on a dose of 7.5 mg ( as well as other stuff), but have to increase the dose when I have a flare). When that is over, I reduce again. To get from, for example, 10 to 9.5 mg, I take 10mg one day, 9 mg the next , so that it averages out at 9.5mg

I take Omeprazol to protect my stomach from uncoated medication, whether it's the 1mg Prednisilone, or the other drugs in my Arsenal.

I hope that's helpful. Jora

[Craftnut68]

well know the feeling arsenal is a very apt description

[Hidden]

Hi Craftnut68,

I am just along the road from you in central Scotland. I don't have PMR/ GCA but spondyloarthropathy which had a Polymyalgic presentation and I have problems with inflammation in my Aorta as well.

I help out on the Vasculitis UK helpline ( GCA is a form of Vasculitis ) and know of a very good Consultant in Glasgow who specialises in Vasculitis. Treatment in Scotland can be very hit and miss for rare diseases.

Feel free to PM me if you would like the name of the Consultant, it sounds to me that the person you are seeing at the moment has a very poor understanding of your illness.

[Craftnut68 in reply to Hidden]

Thanks Keyes I have never broached seeing a rheumatologist with my GP but I see him on Wednesday and see what he says then. I had no real reason to believe my GP had a poor understanding of my illness until I stumbled on this website and started reading. I did have a temporal biopsy done which came back negative but I now feel I have GCA as I get little stabs of pain in both temples,behind my ears and on top of head. This of course may be me just worrying about things. Thanks for the offer of consultants name but I would have to get my GP to refer me there I'll see how things progress

[Hidden in reply to Craftnut68]

GP's don't manage GCA as its beyond their level of understanding and training to do so. Are you no longer seeing the Consultant who diagnosed your stroke and suspected GCA?

The problem with Temporal artery biopsies is that the Giant Cells that are the hallmark of GCA don't occur in all sections of the artery, you can get " skip " lesions. Also if you were on prednisolone before having the biopsy that can affect the results as well. I was at a meeting recently where they presented the results of the TABUL study ( Temporal artery ultrasound ). I was astounded to hear that sometimes veins are biopsied by mistake and that some pathologists don't recognise giant cells, eg they thought the biopsy was negative but it was actually positive!

I think in your situation I would be insisting on a referral to an appropriate specialist and refusing to take no for an answer.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Hi Keyes,

I found the only person who managed/manages my GCA was my GP - past and current. I saw Rheumy 6 months after diagnosis by ophthalmologist, his disinterest was palpable! The only interest he did have was directed towards my arthritic shoulder!

Needless to say I didn't bother to see him again!

[Hidden in reply to DorsetLady]

Thats why it's important to find a Rheumatologist with experience in Vasculitis, they do exist!

[PMRpro Ambassador in reply to Hidden]

I don't think I wanted to hear that Keyes! Even if actually it does confirm a few suspicions I had...

[Hidden in reply to PMRpro]

Lol.....there aren't as many as there should be though!

[PMRpro Ambassador in reply to Hidden]

How do you know? I'm a martyr to understatement...

I have emphasised in the past that a TAB is only a) as good as the surgeon and b) as good as the histopathologist. Never mind the ability of the system to get it done speedily enough.

Ah well!

[Craftnut68 in reply to Hidden]

Hi Keyes I saw a doc to on Friday 13th November who told me I had had a small stroke and started me on clopidogrel . I got a phone call at home on sat 14th from a consultant who told me results of my MRI scan showed it was due to a blocked artery and he said he had been renewing notes from the previous day's visit yo other doc and he suspected gca and polymyalgia and he would phone my GP first thing Monday which he di and arranged for me to be prescribed the 60mg prednisolone. He also phoned eye clinic and asked for temporal artery biopsy to be done Asap . Clinic could not do biopsy until Friday 20th by which time I was on the steroids for 3 days. I was never given a follow up from consultant and I got a phone call from eye clinic doc 2 weeks later to say biopsy was negative so I could stop the steroids straight away and no need to taper down by which time I had been on the steroids for just over three weeks. I saw my GP the following day who said due to pmr I would not be stopping the steroids. I was never given a follow up appt from stroke clinic doc or the eye clinic doc only had consultations with my own GP. I would have thought eye c,induced would at least given me a follow up appt to check if peripheral vision I had lost had got worse or improved (which it hasn't ) this is why I have felt so alone with this as I haven't seen my GP since either although he has given me telephone consultations. Our surgery no longer makes face to face consultations

[Hidden in reply to Craftnut68]

You have been failed on so many levels that I am speechless. You are totally right, you should have been followed up. I have never heard of a GP's surgery not offering face to face consultations.

All this makes me believe that it is more important that you receive a truly specialist input now. I have been referred all over the UK by my GP so it is possible. Sometimes we need to ask lots of difficult questions and push to get the care we deserve. If I can help in any way please let me know.

[Craftnut68 in reply to Hidden]

Thanks Keyes. This is why I've felt so alone in all this feel as though I've been kicked into a corner and forgotten about. We have to phone surgery first thing in morning and leave name and phone no with receptionist with brief summary of why you want GP to phone back. GP normally phones back within 2 hours and gives phone consultation and leave a prescription at reception desk if he feels you need one. If GP feels he needs to see you he will make surgery appt. my GP has been asking me to make blood tests to have esr etc checked and phone next day for results I haven't actually seen my GP since 9th December . I have other blood test on Tuesday and to phone Wednesday for results and whether GP wants me to increase steroids. Thanks for offer of help.

[HeronNS in reply to Craftnut68]

When in doubt go to an ophthalmologist. My regular eye doctor is an ophthalmologist and when I went to him a couple of months ago I explained why I was seeing him a year earlier than usual and he took even more care in his examination of my eyes, and in the course of the appointment gave me far more information about GCA and prednisone than my GP (who hadn't mentioned GCA and had only recommended that I see some random optician at an eyeglasses shop to check my eye pressure). It turns out I have no signs of GCA but my ocular pressure is up enough that he wants me to return after four months to keep an eye on things (so to speak).

[PMRpro Ambassador in reply to HeronNS]

Sorry Heron - even they get it wrong! If you read Craftnut's post above you'll see she too got the eye person who doesn't know that a negative biopsy does NOT mean it isn't GCA. One of supposedly top PMR/GCA rheumatology consultants in the UK told a patient on this forum she didn't have GCA because her biopsy was negative but she - luckily - insisted on further investigations because she felt so ill. PET showed inflammation in the arteries in her chest, including the aorta.

[HeronNS in reply to PMRpro]

Yikes!

[Mojo63]

It takes a long time to reduce in my experience and the slower the better reducing say 1mg per month. I found no problem reducing using coated 5mg & 2.5 also 1mg not coated. I started with this illness 5 years ago. I will have been off Steriods 12months in April!

Please read my post 'Sixteen months in'

Hope your eye sight improves, got my vision back!

[Annodomini]

I got an effective - and cheap - pill splitter from my local pharmacy. If I split a 5mg tablet that gives me 2 x 2.5mg tablets. At the moment I am taking 2 x 1mg tablets plus half a 5mg tablet which gives me (if my arithmetic is right) 4.5mg daily dose. You could make up your 12.5 daily dosage with 2 x5mg plus half a 5mg tablet. Hope I haven't confused you. Sometimes I confuse myself! By the way, you can't split enteric coated tablets.

[Craftnut68 in reply to Annodomini]

Thanks for this Annodomini and your arithmetic is right