Hello Peeps. I have recently got my dose of pred down to 7mg by dividing the dose during the day. I found taking the whole dose of 8mg in the morning no problem but it was hard to reduce down to 7mg even slowly. Now whether this is the right approach but without any help from the professionals ( first appointment with a rhuemotologist tomorrow) I decided to divide the dose into 5mg mid morning and the other 2mg top up in the mid afternoon. My body didn’t seem to kick back and surprisingly I felt fine and have been doing this for a month or so. However my GP says it’s not ‘usual’ to not take a whole dose at once as it can sometimes damage the adrenal gland? It was his advise not a critism I must add. Do any of you do this as I do and do you find this a good way of taking it? Reducing to 6mg is another matter!
As I said first appointment tomorrow with a rheumatologist it was 99% confirmed a few months ago by letter that I had PMR through the Pain Management Consultant who sent info to Rhuemy with raised blood markers. After 18 months of ‘having PMR’ my markers started to raise this is why I got confirmation by mail from the rheumatologist. However, I’m really worried of how it’s going to go tomorrow, what to say etc, with all the negative things I read about about these Consultations with people coming out thinking ‘that was a waste of time’. So, Peeps any advice on this one too.
Sorry to go on...... thank you for listening. Hope you all have a good day.
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Suffolklady
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I've been splitting my dose since I was on 20mgs, found getting down to 15 no probs, Rhuemy didn't comment when I told him what I was doing though I've to stay at 15mgs till he sees me in two weeks as he doesn't think I'm progressing as I should. That surprised me as I think I'm doing well, started walking the dogs and taking them training, still very stiff though, hands knees and ankles but hey ho I can walk and cut up my own food which I couldn't do before!
I’m glad that you are having success with this way too. I have heard on here people do it but you know the powers to be most of them think by the text book and we are all individuals not words on a page. My stiffness is easing and my bloods are coming down more to normal I don’t know if this will last but hey ho I’m alive.
Oh, good on you clever girl! I am happy it's been working and hope "they" (the powers that be!) say it is okay to continue this regime! If it works, it works! And you are down to 7mg! Wooo Hoo! Good luck tomorrow, hope all goes well!!!!
Keep a positive attitude and visualise the Rheumy being warm, welcoming, educated, compassionate, interested, collaborative, etc. etc. etc. S/he may be an eejit, but you will have spent today thinking only positive thoughts and not worrying about how the appointment might go awry tomorrow! Hahahahahahahahaha. xxx
Oh mamic1 how your positivity will help tomorrow I will think of the good I might get out of it but I am afraid to say if they contradict my methods as I don’t know the ‘ins and outs’ so I feel I might want to argue my point and get shot down. As you rightly said he might be really helpful and welcoming after all I want is advise of where I go from here I don’t have to take it, it’s my body not his. Waited four months for the day so if I get intimidated I will do the old thing when you get nervous and imagine him in the undress state lol....knowing my luck he will be short fat and 104, no disrespect to short fat 104 year olds. Thanks for support.
Hahahahahahaha! Love it! I know a lot of short, fat, 104 years old's who are totally cool! Sure undress him/her, that always works! Hahahahahah
No worries if they do contradict your methods... listen to what s/he has to say and then weigh it against what you know to be true for YOU! And you are right, it's advice, you do not have to take!
I’m going to go in his room tomorrow and burst out laughing if he is short and fat and full of wrinkles. If he’s talk dark and handsome that’s a different matter I probably won’t hear a word of what he’s saying lol.
If s/he is "a knowitall", albeit short hairy dumpy and/or opinionated, do the domestic listening routine. Roll your eyes, say 'yes dear' and do your own thing anyway, no point in arguing. Works for me 🙄
I take half at 7:30 am & half (or the greater amount) at 11:00pm. Currently at 4mg. Splitting made such a hugh difference in pain & stiffness in morning. I used to wait for noon-1:00 for my body to feel good.
Your GP is waffling. No, it isn't "usual" to take the dose split but it is increasingly being advised by doctors for chronic illness where it may work better,
The single daily morning dose advice is based on a study done in The Netherlands (I think) which found there was greater adrenal suppression when a single dose of 5mg was taken in the evening than when 15mg was taken in the morning. So 8.30am was felt to be ideal and mimicking the morning spike of cortisol that is natural and normal. (There is another in the afternoon - but somehow that never gets a mention!). It makes sense to tell patients to do that when they are on a short course of pred - there will have been little effect on the adrenals and they will go back to their normal job easily. We are on high enough a dose of pred for long enough to suppress adrenal function (above 10mg and for months if not years, anything longer than 3-4 months is enough) so it is immaterial. Then use it so you get the best result for you at the lowest dose - even if that means taking it in a split dose.
To be honest - if the rheumy complains about a patient who has successfully got to 7mg without any professional guidance I would choose not to see them again! Personally - I think that you should remain at the starting dose until the bloodmarkers are heading to normal range and the symptoms are significantly improved before starting to reduce.
And of course - you can always omit to mention the times...
Thank you PMRpro for your advice and explaination I need to absorb it to understand all this Adrenal thing. Everyone is different but it’s hard to argue with, or I should say disagree with my GP as he’s a strong character and so I just listen and ask questions. At the end of the day I thought as I walked out ‘well I’m doing okay at this moment in time so why I’m I going to change’ What reaction tomorrow will be interesting but I will take as much as my ‘mushy brain’ can absorb.
I DO take my 6 mg as one dose, along with my other Medications, in the morning. I actually take one of them, Tacrolimus (my anti-rejection drug,I have had a Kidney Transplant), an hour before I eat. All the other drugs are taken after breakfast.
This seems to work, for me, and my Doctors/Consultants, tell me, that my results are generally stable. I have been on, in the past, drugs that I have had to take throughout the day. Clearly it all depends on the type of drug, the individual and, I strongly suspect, the exact 'Cocktail', of drugs, you are on. However if this works, for you.......
I haven't 'spoken' to you, for a while, Suffolklady How are you? Well? Well as well, as you can be, oh well! Sending you my best wishes.
Hi AndrewT. I’m doing okay at the moment. Trying to soak up as much of the sun as possible and this helps the old body. Got down to 7mg with good pain results but have back issues that could overlap with PMR especially in my neck head and shoulders so I’m wondering what what, if you know what I mean? I do have lots of other medications and it’s a juggling act as to what to take when Incase they interact. Isn’t life great lol.
Hope you are getting on okay even though I know we all struggle to different degrees.
Yes you are right, we do all Suffer, to some extent. Yes Back issues, yes Joint pain, yes Aches, Pains and Gas/Constipation. I'm never sure which is my 'Condition' and which are 'Side Effects', of the Drugs. Either way I, like you, am Lumbered with them. Still we are ALIVE, some years after being told we would NOT live. So yes it can be hard, painful and, just plain, 'Difficult' sometimes but hey...….
You may not wish/want to tell me this and, if you don't, please don't but....Where abouts in Suffolk, are you? I only ask because my Father, and Step mother, live near Bury St Edmunds. Not that I have been there, for some time now. I'm sure that you know, how it is, with families. I'm also not too far from the Suffolk boarder, if I go North. As I said, I'm NOT 'prying', just interested, that's all.
I live in Clacton-on-Sea, in Essex, in a Supported Living flat. In my case this means that there is always 'someone' available, should I need any help. Generally speaking I'm quite Self Sufficient, within the flat, but do need assistance, when out. I do, and always have, take care of my own Medication though, I believe, our Staff do assist some of the residents in this respect.
On a lighter note- I have found a way around the 'Ever Present' peg shortage. I have bought wooden Dolly Pegs, no-one else has these, so they Must Be mine. (I don't mind others using them, when I'm not, if needed.)
Thank you for your, very prompt, reply. I am away, this weekend, though I might be able to use, our friend's, computer I'll, most likely, reply to 'Posts' next week.
Morning AndrewT. Hope you had a good weekend sorry I never got around to answering your question the other day but I have had a lovely relaxing weekend in the garden soaking up the sun, doesn’t it feel great to feel that sun on your back. Does the weather affect people’s pains, the heat is good for me the rain is a killer?
Never thought you were prying lol. I live on the Suffolk/ Essex border in a village but not far from the A14 so it only takes about 45 minutes to get to Bury St Edmunds from here so not that far. Haven’t been there for a long while but it’s a nice town. I lived in Clacton for about 25+ years so a good part of my life. My elderly mother( although she’s fitter than me) is still living there so I’m down there often. Not my most favourite place on earth. I like where I am now in the countryside.
Keep hold of those pegs lol, you never know when you might need them. Catch you soon take AndrewT
That's bloomin' Telepathy, for you! I was just about to type you a Message, when your reply Popped Up.
I know what you mean, about Clacton, though, where I live, it's mostly either older people, younger children or us. I can see Mike, Patience and Mat, all of them in Wheelchairs, causing a riot can't you? Come to think of it Patience's, seemingly endless, Grand-Children could 'ave the lot of 'em!
Sorry but I must cut this short, I go to an Art Group- at the Stroke Club- and have a cab booked for Nine-thirty.....and I haven't even washed up yet!
I think that if you have found a way to reduce your medication that suits your body you should stick with it. Sorry if we have been moaning too much about disinterested Rheumatologist’s, I have an engaged, interested and very skilled one. It makes all the difference. She is the second one I have had. Sometimes it is worth shopping around a little. Our disease is not “ sexy”. Good luck with yours.
Thank you SheffieldJane. Oh I know there are some good Rhuemotologist around and hopefully I am going to get one of those. We go in these places expecting some answers but often come out bemused and baffled. But I’m going to do what Mamic1 said go in positive and keep my eyes closed lol
That makes me feel young, I like it lol. Have a good weekend. I will reply to your post soon. Clacton, small world I lived there for a good part of my life and only live 16 miles up the road now.
I too split my dose and have been doing so for over a year now. Think I got the idea off this forum as I was struggling to last 24hrs on a single morning dose. Split it third at night, two thirds in morning. Both my GP and Rheumy think this is odd but neither have argued with me. I’m currently on 9 trying to start the DSNS to 8. Cut my evening dose by 1mg and a week later I’m struggling so going to stick at 9 for a while. Will try a half mg next time. I’ve no idea how it works better for me overnight and last time I tried to reduce the night time dose same thing happened. Perhaps I’ll end up taking my whole dose before bed once I’m down to 4/5 .........dream on!!!
It’s so frustrating, as many of you know, when it comes back to bite when you’ve had a few (relatively) smooth weeks.
My rheumy appointment was mid June and I left feeling very deflated. He basically wants me to consider a steroid sparer eg methotrexate. He has at least given me the choice and I suggested I kept trying the slow reduction instead. He’s ok with that for time being (dx March 2016) but did say there would come a time when he’d say enough is enough! I knew it would be months until my next appointment so I just nodded like a dutiful patient and left. My next appointment is February 2019 so plenty time to go off piste!
I hope you’re appointment goes well and you don’t feel bullied. I just wish some of the rheumys would acknowledge that ours is a condition they don’t know enough about yet.
The consultant today suggest methotrexate but at the moment decided not to go down that route at this time. It went very well and I came out happy.
She was very informative but on a basic level but is doing the preliminary checks first. Not worried on me being on steroids until it’s time to reduce as it could cause a set back. She was more concerned about the Adrenal gland not functioning so therefore I’m having a check on that.
Hope you get on with the reduction as well as you can
I split my dose, the greater part at 5 am and the other at 5 pm. Seems to be working for me. I had suggested it to rheumy and she said sure, try it. Currently reducing 2.5 mg every 10 days and at 47.5 mg now, about to go to 45 mg.
How wonderful to be able to get to 7 mg on your own. Bravo!
I have never read about it hurting the adrenals. I will be interested to read what others say on the matter.
I have been splitting my doses for about 1 month and it works really well. I had to increase to 15 mgs over a month ago (flare I guess. )I am Now at 14. I take 5 mg in the middle of the night, whenever I get up. Then I take 4 mg. around 10-11am then try and wait as long as I can to take the rest. Usually between 4-6 pm. Have less pain a little more energy.
Keep up the good work taking care of yourself. Good luck with the Dr. appt.
Well today went very well and I had a positive experience with the Consultant SHE, don’t know why I thought it was going to be a man, was very nice and listened to what I had to say. Basically the splitting of predisolone was not a problem to her way of thinking so was happy for me to continue that way (which I was anyway) lol. She just advised me not to take it after 5pm which I don’t anyway. She is organising a bone density scan and also and Adrenal test to check its function, it had a name but I’m blowed if I can remember what it was, she also sent me for an X-ray on my shoulders which is the main pain source and my neck, so that is sorted. All in all I was very pleased with the way she dealt with me and never belittled me the way some consultants can. She never rushed me and was in with her for a good half an hour talking about it, came out thinking I wish I’d asked her this and that but this always happens even with note written down. So I’m staying on 7mg pred for the time being as she suggested and I’m happy with this at the moment.
I now have to wait for step two but I’m in the system and don’t feel on my own anymore although I know I have you guys for support which I thank you for.
Thanks PMRpro I knew I could rely on you lol. Yes if it’s the test for Adrenal gland function that’s it. So much to take in. I’m at Ipswich hospital Suffolk and it’s a brilliant hospital.
Don't you just love it when you get a Dr. that spends time with you, listens and doesn't have a foot out the door and isn't condescending! My Dr is also like that I actually like seeing her. She is a very interesting person to talk with. She actually remembers my grandchildren and asks about them.
Thank you Linny3 I have found someone who understands of course it’s the first appointment so it’s what happens next. Dr of course know nothing about about me in fact she thought I’d only had this for six months when I first went in so when I said no that’s not right she put her pen down and leaned forward and said you tell me your story. So I did! I liked her manner so I hope if I stay with her we will get this under control.
Hi. I am new to PMR, only on pred since mid jan. Have split dose since i started. As i nvr really had breakfast bfr 11 am or later, my first dose (originally 10mg) is around noon. Because i go to bed very late my second dose btw midnite and 1:30am (also originally 10mg)
Felt great. Too great and started to taper in feb. Tried taking all at once - around 1pm. Intolerable Pain and stiffness next morning so i went back to 2 doses. Have now tapered to 9mg & 7 mg. Split doses work for me and i will cont to taper from either dose as i feel it. rheumy said unusual but ok
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