Trying to taper very slowly again , advice on changing pred time from night to morning.

[Greensleeves]

Hi friends

I’m doing Dorset Ladies Taper plan again , this has previously gotten me down to 3mg 3 years ago , recently had to increase dose to get through a rough patch .

Currently on 8mg , awful perspiration so from experience don’t feel I’m taking enough Pred , but will stick at this dose..

GP remarkably told me to reduce at 1mg per month, she’s very clever indeed, gets her patients off in 2 years or less !

I’ve been taking them for over 10 years and doubt my adrenals will ever fully function again.

I take my dose around midnight but want to start taking in the morning again, with all my supplements.

I have gastro enteric coated pred and have to take Omeprazole for gastritis .

I swapped from morning dose to night time dose several years ago , but can’t remember how I did it .

Any suggestions greatly appreciated, my husband thinks I should miss the night dose but I feel that isn’t a good idea going by current symptoms.

I am aiming to reach 5mg again, I’ll be happy with that.

many thanks 😊 x

[piglette]

GPs who say they get their patients off steroids in two years or less really worry me. I assume there are loads of people wandering around in pain!

I take my steroids at around 2am with a piece of hard cheese. I think if I were changing from evening to morning I would take my evening dose and then the morning dose the following day so you have less than 24 hours between the two doses. Be careful taking all your tablets st the same time. For example you should leave two hours between taking your vitamin D with calcium and your steroid tablets. Your pharmacist can probably help.

I had terrible perspiration when I started steroids but it improved on reduction. Several people have mentioned getting it at around 7-8mg. I wonder whether it may be something to do with the adrenals, but I may be wrong.

[Greensleeves in reply to piglette]

Thanks for your advice P , I am so tired and thought even though taking the night dose usually works well, I’d feel better taking everything together in the morning and not having disturbed sleep .

I wasn’t aware not to take my supplements together, I have been taking Vit D , garlic, , Omeprazole and probiotics etc with breakfast!

I know when I’ve had this perspiration before I usually need more Pred , so I think you’re right about that . My baseline seems to be 7.5 mg , any extra stress and the sweats start .

Your suggestion is great and will hopefully help counteract my adrenals complaining , a quick temporary boost .

It is extremely sad how many people are suffering unnecessarily because of GP’s and rheumatologists not understanding quite how awful this is . Thank you and take care x

[piglette in reply to Greensleeves]

I often think that we are quite lucky with PMR and doctors, when you hear of some of the horrific things that are happening due to inept doctors.

[Greensleeves in reply to piglette]

P you’re right , we’ve been through an awful experience due to what i can only call gross negligence. Still trying to make sense of it .

You can’t beat the system, they stick together.

Writing letters of failings and getting nowhere .

I’ve learned now to trust very few and question everything. x

[piglette in reply to Greensleeves]

I so agree. Goodness knows how you fight it. It horrifies me how people seem quite happy in giving an appalling service. Police, NHS, banks, insurace companies, airlines etc etc. My postman is fantastic on the other hand.

[Greensleeves in reply to piglette]

I think people look up to any form of authority and don’t like to question. We’re almost programmed to do as we’re told by these people.

The doctor is always right! Well no actually I’ve noticed quite a few very clever, highly functioning professionals lack common sense.

Thank goodness your postman is great P , one less thing to worry about. x

[piglette in reply to Greensleeves]

You are right. A lot of doctors have made themselves into little gods. I am always arguing with my GP. I suppose most people don’t question things.

[Rachmaninov2 in reply to piglette]

I question things but it doesn’t go down well and more often than not makes things worse.

[piglette in reply to Rachmaninov2]

I think I probably have a black star against my name. I have worked with the pharmaceutical industry for the last thirty years, so I probably have an advantage when they tell me rubbish about drugs. They don’t like to be questioned is the trouble.

[Greensleeves in reply to piglette]

You’re right they don’t like to be questioned. Good for you for questioning them.

[Greensleeves in reply to Rachmaninov2]

important to keep questioning, they’re only human like us x

[piglette in reply to Greensleeves]

My father was a bacteriologist, luckily he worked in a laboratory except once a week when he went to the hospital to see his pals! If we were ill he used to say take an aspirin or put a bandage on it!

[Mayadill in reply to Rachmaninov2]

I suspect in certain places I've got piglette's black star too. I just wasn't brought up to tolerate being messed around by BFs. if my misspent life has taught me anything (doubtful), it's that you have to be prepared to push it, not take no for answer, which of course when you're ill is the last thing you feel like. But I think the not questioning docs isn't just because some people think of them as authority figures but because of the belief medical degrees make them intellectually and morally above lesser mortals, sort of modern-day priesthood.

[piglette in reply to Mayadill]

Interestingly enough the doctors who really are impressive and deserve our respect are a lot easier to get on with than those who are not so good at their jobs. I have got through four rheumatologists who really were second rate with no common sense. The first one I saw, who diagnosed PMR, was private and he took to giving me bear hugs whenever I saw him!

[Mayadill in reply to piglette]

Absolutely and true in the other things you mention, banks and so on.

[Greensleeves in reply to piglette]

You’re right some of them are arrogant and think themselves beyond reproach. The private rheumatologist must have felt sorry for you being in pain. , I think those bear hugs sound just about tolerable .

[piglette in reply to Greensleeves]

They were definitely nothing to help the pain!! I told my lady GP about it and she suggested that I move away from him.

[Greensleeves in reply to piglette]

Good idea , I had a couple of inappropriate experiences over the years too . You know when something isn’t right, i always make sure I’m not alone if it isn’t a female.

Bear hugs forPMR are not wanted.

[piglette in reply to Greensleeves]

Even thinking about him now gives me cold shivers down my spine. On top of that he was a rubbish rheumatologist.

[Mayadill in reply to piglette]

in such a situation squealing could be useful. One wouldn't have to drop the idiot in it if he was temporarily useful. "I'm terribly sorry, i thought i saw a spider. I really can't stand creepy-crawlies."

[piglette in reply to Mayadill]

A private doctor with rooms to himself, presumably rented by the hour, in Harley Street. What do you do? Go to the police?

[Mayadill in reply to piglette]

It's a bit hazy because they're concentrating on 'intimate examinations', but I think in fact any patient can request a chaperone for any consultation.

cqc.org.uk/guidance-provide...

[piglette in reply to Mayadill]

In my case I would have had to ask for a chaperone in advance.

[Mayadill in reply to piglette]

Sorry, then I got something wrong. I had the idea you said somewhere you saw him more than once and it happened each time, thought something like you must have had to go back for verdict based on tests or more tests or whatever.

[piglette in reply to Mayadill]

The first time was fine and I took a friend. He then kept telling me to come back. He used to check my thighs for some unknown reason and used to rub his hands up and down them. One wonders how often this happens and people say nothing.

[Mayadill in reply to piglette]

Oh piglette, that is so appalling. A hug is over the line, but that is just so far out of court - one wonders indeed.

[piglette in reply to Mayadill]

I have never mentioned it to anybody until now apart from my GP. In my case it was probably nothing much compared to some people, but you do understand why people say nothing.

[Greensleeves in reply to piglette]

I think it goes on and isn’t reported because nobody would believe us P .

It’s affected me to the point I won’t get certain things sorted out.

It is disgusting and so disappointing.

[Mayadill in reply to piglette]

A self-serving and possibly sexist power-structure comes into it, yes.

[Greensleeves in reply to Mayadill]

yes May , I believe in each horrible experience it has been a power thing on their part .

[Mayadill in reply to Greensleeves]

I'm sure that's true but I was actually thinking of the entire infrastructure, the confidence they will be believed and protected by those higher up the pecking order, which is of course true as much of clinical idiocy as of personal criminality.

[Greensleeves in reply to Mayadill]

Exactly so , they’re so sure of themselves and being protected by their colleagues, they believe they’re above the law and common decency.

What about “Do No Harm “.

It was sickening to see one of these chancers on a tv documentary about junior doctors, students saying how honoured they were to follow his lead . I thought little do they know what this person is capable of . His medical knowledge and experience is undoubtedly right at the top , but his failings as a human being and morals are disgraceful.

[Suffererc in reply to piglette]

OMG. That is awful. Had a couple of nasty appointments post natally but one now dead and the other gone back home. Always ask for females now or wait for appointment where I see a female

[Greensleeves in reply to Suffererc]

me too , I’ll only see females.

It shouldn’t be this way.

Let’s hope as more female doctors come through things will change.

Piglette started quite a discussion here .

x

[Suffererc in reply to Greensleeves]

Yes. It is only when someone says something you find out how big the problem is 😊

[piglette in reply to Suffererc]

I think there are a lot of them around!

[Greensleeves in reply to piglette]

unfortunately I agree P , it’s quite unnerving.

When it happens to you, you do lose faith .

[Greensleeves in reply to piglette]

One time I didn’t think a chaperone was necessary to check my throat P .

Another time my husband was sitting at the doctors desk while I was behind the curtain “ having my eyes checked “ !

Couldn’t believe it, I can’t deal with these things at the time, I freeze and wait until I’m out of there . I’d signed a waiver that I didn’t need a chaperone as my husband was with me and he was checking my eyes for Blepharitis. Nothing personal.

He’d obviously been accused before of not using spatial awareness .

[Greensleeves in reply to piglette]

Horrible experience for you P , I am sorry. The last time something like that happened I didn’t tell anyone apart from a nurse friend, because he was high up in the hospital and I wouldn’t have been believed . She wasn’t surprised though. It was a power thing with him , because he knew he could get away with it. I am glad you told your GP , they must despair and it’s unfair on the decent one’s.

[Suffererc in reply to Greensleeves]

but your GP should have said something on your behalf to him. Even they are afraid of rocking the boat

[Greensleeves in reply to Mayadill]

Spot on , I agree.

[Bobbury in reply to piglette]

That’s me too. I have to question everything the doctor says now. Previously it was yes sir no sir. Now it seems I get a longer consultation because now I get better explanation as to the why’s and where fors. It works for me though!

[Greensleeves in reply to Bobbury]

some enjoy you questioning others don’t glad you’ve got a good one . It’s empowering for us and it works for you.

[Flutterbies57 in reply to Greensleeves]

I’m well into questioning authority nowdays . 😂 .

I am in a very similar situation to u Greensleeves. I have had it about 10 years , was down to 3.5 , was about to go down again, but had to go up again for a couple of weeks , then slowly down . Had to do this twice. It is winter here and I am perspiring more than I ever have before. It is really horrible . Someone suggested to you , you probably need to go higher if you are sweating so much . Do others agree that it is a sign to go up again . I am always in agony for other reasons , so never know what to do now .

[PMRpro Ambassador in reply to Flutterbies57]

Was it better at higher doses? At this stage it can be either too low or due to the adrenals not keeping up ...

[Greensleeves in reply to Flutterbies57]

Hi Flutter , I’m sorry you’ve had it so long too and had to go up in dose .

The pain is awful, if it stays after a reduction I believe we are having a flare and do need an increase.

I’ve found the perspiring can mean you’re under a great deal of duress , and haven’t got the extra reserves of cortisol. I don’t know if we should go up , I’ll admit that I have done when it’s been unbearable. In this case the slowest taper possible and holding unit you’re comfortable is the way forward , unless you use steroid sparers .

I have refused these with all the meds I’m taking . I’ve reduced right down before and I’ll do it again.

It’s very difficult , as you’ll know, but if we can get as low as possible then that’s something great. I doubt my adrenals will ever fully wake now, I was so close until I caught Covid 3 years ago. . Each booster knocks me back too .

We can only keep plodding through reducing very slowly at our own pace.

It’s very warm here , which is unusual, I hope your winter is a mild one .

I’m glad you question authority too , I quite enjoy it, I respect their training and knowledge but remember they’re human beings and capable of making mistakes and poor judgment. Sometimes dangerously bad ones .

I would personally go back to where you are comfortable, stabilise and start dropping 0.5mg per week, when you’re ready .for PMR steroid reduction. You’re doing great. . I’m staying at 8mg for a while now until settled.

Take care x

[Mayadill in reply to Greensleeves]

The terrible danger of respect is you're respecting something that isn't actually there. PMRPro says somewhere in this post, couple of hours' training in PMR! If a doctor decrees something that seems a bit off, too many people assume he or she must have deep complex reasons for so doing, based on years on study of things they can't even understand, when s/he is actually talking out of his/her, from a position of almost complete ignorance. Of course the years of study exist but Medicine is far too large and complex a subject for that to mean that there are no gaping holes in the knowledge of an individual doctor. Best I think to make baseline fellow-human. As a fellow human this person might be anything a fellow-human can be, from brilliant and gifted and adorable to total blithering idiot.

[Greensleeves in reply to Mayadill]

Very true , I didn’t realise GP’s only covered a matter of hours on PMR . I hoped it was at least weeks or months. I remember when I was having my children all those years ago, a super “obstetrician “ telling me it was only part of her training before moving onto something else, then making the decision on what path to follow. So it makes sense they’d only skim over PMR .

I’ve had some in depth discussions re : PMR/GCA of late , the knowledge is indeed very limited, almost all medics believing there is no indication of any inflammation without raised markers.

Also without exception it was referred to as an arthritic condition.

It is extremely worrying, it’s a pity the good rheumatologists are few and far between.

[Mayadill in reply to Greensleeves]

Perhaps not literally 2 hours, but I seriously doubt it's much more. I think to put it in context, we learn things at school, college, work, and then by doing and using these things we're constantly reinforcing that knowledge until it's second nature, increasing it, linking it to other things, ,and of course some people simply have better memories than others. A chemist can really surprise you with the causes of the Industrial Revolution she learned in the Fifth Form! But with a rare disease what they learned is pushed into a cupboard, on the back burner, nothing to tweak it, question it, reinforce it. Maybe we should be grateful they remember anything at all!

[Greensleeves in reply to Mayadill]

Yes you’re right, they’ve all heard of it but few understand it.

They have to have a special interest in it or have experienced it themselves.

I’ve actually found pharmacists have a better understanding about Prednisolone for example and would realise the difficulty we face when tapering. More so than the average GP .

[Mayadill in reply to Greensleeves]

Nothing wrong with ignorance if you're ready to learn, happy to admit at least that you're not sure, you'll look it up, ask around. The basic crimes are as we said earlier, arrogance, refusal to listen, and of course dishonesty, things which bluntly go under the heading personality failings. Training does try to iron them out but I think we've all met people in all walks of life who say the right things to jump through the hoops but don't actually change.

[Greensleeves in reply to Mayadill]

Oh yes , they’ll talk the talk , you’ve made some great points there May .

There’s more respect for those who are happy to admit they aren’t sure , or don’t know everything.

Those who make the promises and let us down terribly can range from wider family members to Professionals.

I sometimes wonder why I’m only just learning this now.

[Flivoless in reply to piglette]

You are so right. Recently I have had to deal with two government departments, Probate Office and Court of Protection, a major insurance company and a large company that handles share dealing. All them have been utterly useless and extremely frustrating; Thinking it perfectly acceptable to take 4 or 5 weeks to reply to email (if the deign to reply at all - it normally takes at least three emails to illicit a response) and even then not really answering the questions or the information they give turns out to be completely wrong. Is this the price we pay for WFH? Or is that people had got used to being slovenly during lock-down and quite liked it?

[Greensleeves in reply to Flivoless]

Your situation is very like my current one Fliv , fighting these agencies to sort important life changing situations. It’s all a battle, I have actually asked why they’re doing something they clearly hate .

WFH , they’re nobody standing over their shoulders. I rang one Social worker, asked where she was as I was waiting for her , I could hear she’d got morning daytime tv on .

Little wonder my blood pressure is up and I’m feeling angry. Life shouldn’t be a battle but some of these people are making it that way .

Banks , Social services, utilities, emailing hospitals etc with serious complaints. The problem is you’re so wound up from the incompetence you have to apologise when you finally do find a good person.

Take care and good luck , I hope next week is better. x

[piglette in reply to Flivoless]

It is a nightmare dealing with anyone nowadays. It is always a pleasant surprise if a phone is answered in a minute even.

[LozzaSandstrom in reply to piglette]

My first doctor experience when I was diagnosed was 2 years and the next doctor literally 3 weeks later wrote me out a plan that ended in 10 weeks! I didn't see that one again!

[Greensleeves in reply to LozzaSandstrom]

They’re unbelievable aren’t they ! Hope you’ve got a more understanding doctor now.

[LozzaSandstrom in reply to Greensleeves]

Yes I have a good one but to be honest as long as I have this forum I have pretty much all the support I need! I did get down to 3.5mg but I struggled on that - back up to 5 and trying 4.5 now - its a battle but although I hate the thinner hair and skin its given me more vitality than I have had for years and years - I bet its been here a long time. Very good luck with your journey on this - I too am splitting now 2.5 in the morning and another 2 around teatime (if I remember). Slowly but surely xx

[Greensleeves in reply to LozzaSandstrom]

I’m glad you’ve got a good doctor, I use this forum as my guide and muddle through as best as possible.

I’m guilty of not being proactive, but have been through a rough couple of years and the black dog soon settles.

These people are living it and know more than any GP who has had a couple of months training in PMR .

I wasn’t getting my daily updates but the tech people sorted it out quickly .

Your splitting regime sounds great, another member was interested in this due to night pain .

I’m long past worrying about my hair although my skin and healing has been an issue. I have been guilty of neglect, I’m pretty sure Biotin and collagen supplements could be helpful.

Take care you’re doing great xx

[PMRpro Ambassador in reply to Greensleeves]

"a couple of months ..." - more like a couple of HOURS!! If that ...

[Greensleeves in reply to PMRpro]

It scary PMRpro , that’s why I take what they say with a pinch of salt and get my answers here .

Important trick is to make sure I’ve got enough pred to do it the right way and not drop 1mg per month as recently told . This marvellous GP who gets her PMR patients off Pred in 2 years ! xx

[PMRpro Ambassador in reply to Greensleeves]

And leaves a lot of them sitting at home in pain because she won't accept they still have PMR. Getting patients "off pred in 2 years" as some doctors boast is due to nothing they have done ...

[Greensleeves in reply to PMRpro]

True PMRpro, she was blowing her own trumpet, I dread to think of the people still suffering and in pain.

Especially if their blood markers are normal.

I’m ignoring her and getting through the days . Staying at 8mg and might even go up to cope with granddaughter and recent events, before resuming my taper.

Avoiding stress is a key factor.

I will start my morning regime when settled.

What would we do without you and this forum .

We’d be lost that’s for sure .

Take care xx

[LozzaSandstrom in reply to Greensleeves]

Bless you - apparently Biotin is for hair strength not regrowth my friend who works in a health store put me onto something I will go and check what they are they are more for regrowth. I am using the Champo range at the moment, not cheap but have noticed an improvement - as we decrease it will help - being fat is annoying but not as worrying as having a see through head! Good luck to you too - we will come out the other side at least it goes in time xx

[Greensleeves in reply to LozzaSandstrom]

I didn’t realise I was so fat or looked as rough as I do until seeing a fat , middle aged woman on the doorbell Ring camera.

“ who is that “ I wondered, i even walk slowly. Need a good pick me up or a boot up the backside.

Have to ride this through and do our very best. Champo sounds good for our hair .

xx

[LozzaSandstrom in reply to Greensleeves]

Ha! I know right?! I do that with descriptions - about overweight old women and then think shit thats me!

[Greensleeves in reply to LozzaSandstrom]

It’s a shock , when you see people of a similar age looking fabulous, my Mum and grandmother were still turning heads at my age . The thing is I don’t really care , good health counts for everything. 😊

[Sophiestree in reply to Greensleeves]

Careful with Biotin as it will skew blood results, or stop taking it 3 days before your blood test if you know in advance, and then resume after.

[Greensleeves in reply to Sophiestree]

Thank you Sophie , I’m long overdue bloods but will remember this .

[Amkoffee in reply to piglette]

I've heard this about not taking steroids with calcium tablets. But I have to take steroids three times a day which doesn't give me much opportunity to take my calcium. Can you tell me why we're not supposed to take them at the same time?

[piglette in reply to Amkoffee]

Calcium reduces the absorption of the steroids.

[PMRpro Ambassador in reply to Amkoffee]

It is thought calcium in the stomach coats the pred tablets and reduces their absorption, it certainly can reduce it! And calcium and pred together in the lower gut means less calcium is absorbed - a double whammy,

[Rachmaninov2 in reply to PMRpro]

I guess that doesn’t apply to Pred. taken with yoghurt.

[PMRpro Ambassador in reply to Rachmaninov2]

Dietary calcium is fine

[Mayadill in reply to PMRpro]

So of course in hospital they give you the Pred and the Evacal together.

[PMRpro Ambassador in reply to Mayadill]

Of course ,,,

[DorsetLady PMRGCAuk volunteer]

No don’t miss a dose completely - either take as normal [or slightly reduced, but enough to get you through the night] and then start new regime in the morning.

Better to have slightly more than not enough, but as I’m sure you are aware the GE version does take a bit longer to get into system, so you may find mornings a bit more difficult until your body gets used to new timings…..

Ps -further to piglette comments re timings -see this -

healthunlocked.com/pmrgcauk...

[Greensleeves in reply to DorsetLady]

Hi DL , I’m up at 6 , so think the GE Pred should hopefully kick in by 10 am .

I may rethink this through and start this regime during the School summer hols , I look after have my granddaughter while her mums at work . I am exhausted but what can we do , I’d feel sad if she had to go to nursery .

Thank you for your advice and your wonderful taper plan. x

[DorsetLady PMRGCAuk volunteer in reply to Greensleeves]

Might be wise to leave to a quieter time..and can understand your feelings about granddaughter- but you have to consider your wellbeing as well… perhaps nursery just one or two days a week might be a possibility.

[Greensleeves in reply to DorsetLady]

Thank you DL , I think I’ll suggest this when she’s 2 , even a couple of mornings would be helpful.

Thank you and take care x

[DorsetLady PMRGCAuk volunteer in reply to Greensleeves]

yes agree

[tempusfugi in reply to Greensleeves]

Good Lord! Your grandaughter's not even 2 yet. I don't know how you manage it, Greensleeves. It's not easy looking after little ones in the best of circumstances, so well done for what you do. Do hope you get some rest yourself.

[Greensleeves in reply to tempusfugi]

Thank you Tempus , I’d fallen asleep on the sofa for a couple of hours.

Still taking the Pred late at night for now .

Take care x

[howtotaperdown]

HI, I've only ever taken the Pred in the morning, with breakfast with Omeprazole taken 30 mins to one hour before, with morning tea. However on this dose my nights are awoken by pain all the time (and sleep means healing) and so I would like to try taking some of the now 9mg in the afternoon or evening, or even the middle of the night at you do, I'm not sure my nights could be worse! Finding the right voice on audio books is my way. I've cut down dramatically on caffeine, 2 cups of tea then decaf Yorkshire after that in the day, and virtually no coffee (that mushroom stuff too!!) I did ask to take 10 mg Omeprazole rather than 15 or 20mg as the Pred came down as I have also read alarming things about that. The specialist said yes but seems indifferent. (article inThe Times, Tuesday Times 2 Health Column, Dr Mark's , I'll try and find it).

[Greensleeves in reply to howtotaperdown]

I have to take Omeprazole , I’ve got gastritis, it is very painful without it . I too have read awful things about these PPI’s , I’ve tried to taper off those too but the gastritis pains come back with a vengeance. Famatodine is another option but it isn’t strong enough for me with these lesions in my oesophagus.

I was looking at splitting my dose too , it seems very successful for some people.

I can’t deal with anything complicated at present and wanted to take all meds in the morning.

It’s very important you get your sleep, audio books are a godsend.

Worth looking at splitting your dose to get through the night. I found taking the pred at night perfect for this reason at the time.

Hope you find something that works for you. x