Hospital up date … all change and its getting frightening

[mad-country-lover]

Hi chaps

On my last post I said why I had been admitted to hospital , and was being kept in to have my Preds drastically reduced from 25mg per day down to 5 mg per day.

to have a PET scan, I was told it needed to be done under supervision,

I have had a lot of conflicting information as have been seen by 2 Rheumatologists and umpteen interms, my agenda was changing daily

before last weekend after being dropped by 10mg preds I had to have the painkilling meds changed as was pacing the floor at 3 in the morning and night staff would only give me 2 more paracetamol which did nothing, they were changed the next midmorning to Lamaline which I have since found out are paracetamol opium and caffeine, plus another small one I was told this was a paracetamol to back it up.

last Monday I had a blood test, potassium was normal so that was the blood pressure meds my GP had changed me to 3 years ago.

Monday late afternoon I was told we should get a date for the PET scan tomorrow and they wold try and get me a single room as I was sharing with a woman with some sort of dementia so not able to sleep for more then 1 1/2 hours at a time .

On Tuesday afternoon one of the consultants came and said I could go home that day??? as they have decided I could drop 5 mg per week of preds on my own at home , then come in for an appointment on the 10th of may.. if and only if I was down to 5 mg of preds per day they would then book the PET scan then...…., I was absolutely speechless.

I ended up being discharged on Tuesday as could not get any one to pick me up Monday. I was told the head Rhumatologist would come to see me at 11 with discharge papers , appointment dates , prescription etc.... A young Interm popped in to see me and wish me luck, she said they had only just all been informed I was being discharged, and wanted to reassure me that it was not dangerous to reduce another 10 mg of preds on my own at home... its only dangerous when some one has been on a higher does. I questioned her about the reduction from 10 mg to 5 mg she said it would not be a problem , I said what about the pain side, will what I am on cope with that.. she said can you see your GP if you need stronger, its a 3 week waiting time for an appointment of a 2-3 hours sit in the waiting room to be seen... so she said I will see the main Consultant and get her to add some meds for you when you reduce to 5mg. I have a blood test done every week and was told if the inflammation rises they would phone me ????

A nurse finally came in at mid day with the paper work went over it as fast as she could, gave me a letter to give to GP, prescription, dates to reduce the preds . Monday down from 15 to 10 mg following Monday 6th of may down to 5mg next appointment 10th of my .the Pet scan could be a further 3 weeks so I am looking at 4-5 weeks on taking 5mg of pred

when we went to get the prescription the chap in the pharmacy said don't take the paracetamol at the same time as the Lamaline ???? they had not added the low does paracetamol to the list, but had put the 1.000 mg on it that I was on initially, by the time I got home I was in agony as 3 hours late taking the painkillers, I have no idea what strength of paracetamol they were giving me so have cut some in half and have been taking 250 mg... its just about working.

I have managed to get an appointment with the private rheumatologist tomorrow night and have some one to take me , so can get him to sort out the meds,

but Im worried sick about being on my own for two weeks and dropping down to 5 mg of preds. has any one else ever had to do this at home so fast, and any advice or questions I should ask the Rheumatologist tomorrow night would be gratefully received

sorry its another long winded post, I hope its understandable, preds were bad enough for me but opium as well oooo la is some thing else

take care xx

[YuliK]

Oh you poor, poor, soul. It seems to me that you have no other choice other than to follow the instructions of the hospital consultant.

Try and stick it out and get your PET CT over with ...

Stay strong 💪 and I'm wishing you a less painful journey.

YuliK 🌹

[mad-country-lover in reply to YuliK]

Thank you Yulik

I know I will have to continue and go through with the reduction as I do need this scan, not all my symptoms are in line with PMR,( that was highlighted on here ) I have been told while in hospital that they need to do further investigation to know if its just ?? PMR or that ….and something else underlying, in which case it can be treated accordingly.

Also if it was not for the advice and help I have had on this group I would have just continued assuming it was the norm with out asking more questions.

it was here my potassium levels were highlighted, after being told by my GP they were high due to being transported to the Lab ( all of 10 kilometres) which 3 years ago I just excepted, after the advice here I was able to question that more, the hospital worked out it was due to the GP changing my blood pressure meds that are known to increase potassium levels with some people, and my GP ignored that.

What on earth would we do with out this wonderful group

I hate to think where I would be now.

take care xx

[YuliK in reply to mad-country-lover]

You are so correct regarding this forum. It certainly is amazing. Great mods and admin, so much positive information. ❤️

Take care of yourself and let us know what develops.

Cyber hugs 🤗

YuliK

[whitefishbay]

Oh I’m so sorry. Do you have any friends that can come and distract you?

Thinking of you & hoping things will be better than you expect.

[mad-country-lover in reply to whitefishbay]

I live in France in the out backs , there are a few living around me with in 5 -10 kilometres range, I cant get any one to come and stay with me. my daughters both work full time in the UK and have children , they have booked to come over but in June .

This week end I plan on getting my self to the shops, iv ordered more fuel as I am continually cold, and prepare my self for Mondays next 5 mg reduction,

I will have a couple of friends pop in but it will only be a pop in, most work and have Gites to run.

So I will be on my own for most of the time.

I have not been able to concentrate on reading a book since last September, so might get my paints out and see if that helps,

and of course I have this group.

take care xx

[PMRpro Ambassador]

YOU MUST NOT TAKE MORE THAN 4000mg paracetamol per 24 hours. From all sources. The crossover from therapeutic to toxic to the liver is very narrow - especially if you are on any other drugs that are metabolised by the liver or drink ANY alcohol.

The company that makes the stuff decided 8 years ago it should be 3000mg/24 hours.

tga.gov.au/community-qa/rec...

So it isn't a case of not taking the tablets at the same time - it is a need to monitor the total amount you are taking in a given time.

If it were me, I would write a sheet that explains the history - pred dose for how long and speed of reduction with a heading that makes it clear there is a possibility of adrenal problems which should be taken into account if you are taken ill/collapse. Have it somewhere obvious in your bag and a few copies in various places around the house. Include a list of all other medication. Keep your phone with you - if you feel at all wobbly, call 112.

[mad-country-lover in reply to PMRpro]

Thank you so much for your reply it has confirmed what I have read in the past on here and what I was first told when in hospital. Until they changed their mind. It was a young inform who tried to reasure me it was safe to do it alone at home. I will be discussing this tonight with my appointment with the private rhumatplogist who sent me into hospital for more tests and the scans. I have one more question am I right that the adrenal glands will try to kick in when I reduce from 10mg to 5 mg of preds. Also I have enjoyed a couple of glasses of red until my hospitalisation. After being reduced by the initial 25 mg to 15 mg I really could not drink if I wanted to do that's been good. Also the feeling wobbly bit... I have had days from the start of my journey where I just want to collapse.even when on 25mg of pred I could barely face eating . I had a couple of days like that in hospital ..I just did not know what to do with my self .I did tell them and the only market was my BP went up to 144 over 87 and my bright red face went white they said that was ok.i had a couple of occasions where I nearly calls the nurse but as I felt in a safe place and did not want to make a fuss I held off doing so. So I don't know if I would be able to tell the difference between another turn like that or a problem with my adrenal system or if it were to happen whilst asleep in bed no one would know for days... I am so sorry to put all this on you. But any advice could help with my questions tonight with the rhumatplogist.

Thank you so much I really do appreciate your timetable care

Maddie xxxx

[PMRpro Ambassador in reply to mad-country-lover]

Adrenal wobbles can happen anywhere below about 10-12mg depending on the person and situation. If you are exposed to a high level of stress your adrenals are already possibly not able to respond enough - I notice that I can feel quite wobbly in high-stress situations and I'm at 15mg! And how long it takes the adrenals to recover is an unknown - it doesn't happen all at once, as the pred dose reduces the body detects there is less corticosteroid available to it and that is may not be enough. But the system is not just one bit - it involves a whole range of organs and hormones, they have to get into balance again and it doesn't happen overnight. Low BP is more likely than high - not that that reading was particularly high. Did anyone check your pulse/ECG at the time?

Do you have near neighbours? Even if you don't know them well you could ask them to react if you don't appear in the mornings. But you are seeing the rheumy later - see what he feels first. And don't hide your fear from him. Keep a diary too, of symptoms and other factors to see if there is a pattern.

[mad-country-lover in reply to PMRpro]

Pro

I Just cant thank you enough for your advice

They did my blood pressure , pulse and I could see a heart rate thing on the monitor , this was done 3 times per day.

The day I was feeling ill it went up from 112 which is the lowest its ever been up to 144 which is ok I know, it did go down that evening to 134 which is the normal reading reading for me.

Again the reassurance here for me is blood pressure , I now know if it drops down then that is a sign I can look for if I get symptoms iv not had before.

I went through all sorts of side effects when the meds were dropped 10mg over night, so I know what that feels like and am ok about it.

Pain killers.. as long as I can function enough to look after my self then that's ok.

I will talk to the Rhumy tonight and see what he has to say, I then have the week end to try and sort something out even if its to get friends to phone me on a rota every morning , I do have a neighbour but he lives alone and works funny hours, some times nights as he works for the fire brigade out here , then does some sort of landscape gardening. I go months with out seeing him .

Stress is my lap top that works when it feels like it... and a tax form that I think will be done this week end before the next reduction on Monday.

I will let you know how I get on tonight

Take care

Maddie xx

[mad-country-lover in reply to PMRpro]

I had the appointment last night with the private Rheumatologist

He was ok about the fast reduction of pred in preparation for the PET scan.,,,,,,, He said it should not be a problem for the adrenals until I get to 5 mg of pred????? then gave me an emergency number to call if I was feeling unwell or could not cope with the reduction ( which is contradicting what he had just told me) He said I also need some one with me or some one I can phone any time day or night who can take me to emergency's if necessary…. which I have arranged. and three friends who will take it in turns to phone me first thing in the mornings while im alone ,I am also paying for a friend who is a carer , to travel 7 hours up country to come and stay with me she cannot be here until the 7th of May, my schedule of dropping to 5 mg is on the 6th of May ) The Rhumy was not pleased that the scan would not be booked until my next hospital appointment on the 10th of may at which point I would have been on 5mg of pred for 5 days he said that was just not acceptable , so he had written an ordinance with a phone number so an appointment can be booked urgently over the phone on Monday morning.

he also gave me another prescription for Lamaline , which is 300mg paracetamol 10mg Opium 30mg Caffeine , I have been taking 3 per day since dropping the first 10mg of pred 25mg down to 15 mg plus 250 mg of paracetamol. he has said I can go up to 6 lamaline and 4 1.000mg of paracetamol per day if necessary . but I am now aware of the maximum does of paracetamol per day so will be very mindful of that one.

The appointment went at a rate of Knotts last night, it was all of 20 mins , the one question I never had time to ask as he was opening the door for me to go in mid sentence was …… instead of dropping a whole 5 mg of pred the next two Mondays could I divide each one up so I would be dropping less the 1 mg per day over the course of the week . and would that help ??????? ( I would really appreciate your thoughts on that )

I know it all sounds absolutely Ludacris even barbaric what they are putting me through, but my feelings are that if I don't do what they are asking I will never get to the bottom of this. again he said there is either something else underlying as well as the PMR , or all symptom's could be due to something else ?????quite what they don't know.

your advice on blood pressure being more likely to go down if im having a problem with my adrenals, I will be buying a blood pressure monitor to use as a guide , I am not worried about my blood pressure going up, but as it has never gone down in the past.

again thank you so much for all your support and guidance , if you had not questioned my blood results and symptoms several months ago I would have just carried on as I was thinking it was all normal as that was what I was being told by my GP and the first Rhumatologist

Kind regards Maddie xx

[PMRpro Ambassador in reply to mad-country-lover]

I don't think it is ludicrous - bit barbaric maybe! I'm not impressed by his rather cavalier attitude to paracetamol though. Please don't!

Otherwise - all seems very reasonable to me, Does the Lamaline help? You could try more smaller drops but I'm not sure it will make that much difference given the speed you will need to go.

I'm really pleased you have someone for back-up - but surely you have emergency services to take you to hospital if necessary?

[mad-country-lover in reply to PMRpro]

Hi PMR

At the moment I am taking 3 Lamaline tablets per day each contains 300 mg of paracetamol I am backing that up with 500mg of paracetamol . the ground glass in hip joints has returned today, I had that when first on 15mg of Pred per day, that went when it was increased to 20mg .

So some symptoms' are slow coming back as I had the preds reduce Thursday the 18th of April.

They seem to love the barbaric approach over here , when I was abruptly taken off Celebrex 200mg after taking them for 2 1/2 months last December, and having to go 6 days with no meds for another blood tests just to confirm the first blood test that's when every thing escalated, I did not think I would see January.

I am hoping being on 5 mg of Pred and the option of increasing the Lamaline to 6 per day. (I will of course watch how much paracetamol I take ) I will not go right back to square one.

I have an emergency number for the hospital in Poitiers , weather or not that will take me or I will be put through to the consultant I wont know unless the call needs to be made, in which case an ambulance would be called immediately.

I was naughty enough to open the letter I am supposed to be taking to my GP as intended to photo copy it. that has all the dates and detail on... also my Rhumatologist had not had an up date from the hospital so I was able to show him that last night.

will keep you chaps posted

take care and thank you all so much for your time and concern

xx

[PMRpro Ambassador in reply to mad-country-lover]

Did Celebrex help? Does the Lamaline? If either of them help it is a suggestion there is at least some non-PMR pain there.

All the best.

[mad-country-lover in reply to PMRpro]

Initially I was put on Celebrex sue to a muscle spasm in my leg , it went the next day Gp then wanted a blood test so the Celebrex was stopped for 4 days, after 4 days I was stiff all over and could not get out of bed. was put back on Celebrex plus codine and paracetamol, was feel in extremely ill and in dreadful pain. I then waited 2 months to see a Rhumatologist , who diagnosed PMR and prescribed 15 mg of preds. but I had to stop the Celebrex abruptly (she said they clearly are not doing any thing ) wait 6 days for another blood test just to confirm the previous reading and then start the Preds. that was when I was reduced to sleeping in the arm chair I could hardly move and was in the most awful pain all over, could not get dressed etc. the preds did not work that fast with me it was 3 weeks before I could move around. I could not lie down in bed until I was put up to 20 mg. that then went up to 25mg.

I remember putting my blood test on here back in December, as the white count was also up and of course the potassium levels.

White count went down to normal , but it took a couple of months to get the inflammation levels down.

But the unwell feeling just lept coming back.

all blood are good now.

[PMRpro Ambassador in reply to mad-country-lover]

Strange - sounds to me as if they were doing SOMETHING! Or am I missing something?

[mad-country-lover in reply to PMRpro]

Do you mean the celebrex

yes taking them for the first 4 days were ok, stopping for the first blood test they never really worked when I started taking them again.... then stopping them after taking them for 2 months for the rheumatologists blood test really sent every thing into overdrive .

[PMRpro Ambassador in reply to mad-country-lover]

That happens for some people when they have to stop pred for some reason or if a silly and furious taper lets in a flare - after that it can be far more difficult to get things under control again. I've have often wondered why - even some doctors admit it. And I think it may be why some patients need pred for so much longer. There are people who manage to steadily reduce without a flare.

[Jan_Noack]

So it's that important you have the Pet scan? I can understnad why low pred for a scan (any scan actuallY) as the pred stop the inflammation , and its the level of inflaammetion they wont to see if its causing blockages etc.. but that may not be the reason. I myself just didnt do the scans..have put my life in a higher risk situation..but I need that pred..LOL (You'd think I was an addict). I've been trying to taper faster than my body wants me to as wel.. but I'm paying for it..and its been amost 2.5 yrs as well! Persoanlly I'd be querying why the sacn cant wait, unless they want to do an emergency op straight away..which is what I'm guessing

[mad-country-lover in reply to Jan_Noack]

Thank you for your reply

I was admitted to hospital for 10 days and had all sorts of tests and scans, they know there is something else underlying here but they don't know what.

I did think about asking to slow this down and come off the pred at a safe reduction, but am constantly being told over here in France that reducing this fast is not a problem ???? even though I know different.

I feel that if I don't do what is asked I will never find out what other problems I have, and I just cant go on the way I am.

On 25 mg of pred I have so many symptoms and have days of feeling very unwell, I cant eat on these days and just feel like I am going to collapse.

so as I am now half way there as already reduced to 15mg of pred , my feelings are to continue

take care xx

[Jan_Noack in reply to mad-country-lover]

ahh, well if you still had symptoms on 25mg pred, then I would do as they say too. It's not a problem only in as far as your adrenals should not pack it in and you shouldn't die from any lack of cortisol etc. The pain itself is nota medical emergency when they say "not a problem" they mean ..you should be safe mecially, ie not die as as result of the reduction

[Blearyeyed]

Am I right in my reading of your post , are you home alone dealing with this reduction with the possible side effects it might bring?

I don't know what the doctors at the hospital know about your home situation , but if you are alone could I suggest you ask your Rheumatologist at the appointment about wether it would be better to be readmitted while you drop so quickly , at least until the reduction is done and you can be sure you won't have any dangerous side effects , falls , or can get pain medication changed as soon as you need it.

If they expect you to make such drastic changes in your medication when you have BP and tachycardia issues as well you should really have 24 hour supervision or support while you do it .

I am so sorry for what you are going through , I understand the need for them to make changes in Pred for certain tests if you have other issues , I have been there myself over the last five months , so I know how painful it can be and how hard it is to cope with very sudden side effects.

Please take care , call for an emergency appointment or go back to the hospital if you are concerned , you need the extra care and help , and I think they way you have been treated is appalling.

Post as often as you need for help or support over the next few weeks , we will all be looking out for you and thinking if you.

Hugs , Bee xx

[mad-country-lover in reply to Blearyeyed]

Thank you for you reply

most I have answered when replying to PMRpro

As they do not know what is wrong with me , so at the moment it is not for an emergency operation , it is to see what else is going on.

My bloods have not been good in the past, but was told the last test was all good, but I have not seen the ones done in the hospital myself.

I will be updating my post, and also asking for advise fi I am worried, I have far more confidence with this forum then I do with the medical profession here in France oo la

take care xx

[Sailormo]

Hi I can't help with any medical info just want to whish you all the best,carnt believe medical people can be so unfeeling. Take carexx

[mad-country-lover in reply to Sailormo]

Thank you sailormo

My Private Rhumatologist gave me a letter and phone number to get the scan booked ASAP ie for when I have reduced the Preds to 5 mg ,And I am aware I must be taking just 5mg per day for 5 days before they can do the scan , he did this as he is in disagreement with the Hospital. (The hospital have given me an appointment for the 10th of May , I would have reduced the Preds to 5mg per day on the 6th of may. so at the appointment on the 10th they would then book the PET scan ???

Yesterday my friend who is extremely fluent in French ( her profession here is a business translator ) she phoned the hospital direct number, scanned all documents and letter to the hospital for the scan date, and was told her call would be returned yesterday afternoon with a date and time . She still have not had that call . I know she is working flat out so don't want to bother her by asking to call again just yet.

This week I reduced the Pred from 15 mg to 12 1/2 , not down to the 10mg as stated by the hospital, I was hoping it would not be quite a shock to my system , when being reduced over night from 25mg down to 15 mg in hospital was absolutely dreadful .

I am in more pain by dropping the 2. 1/2 mg but have not yet increased the pain meds, I am hoping to hang on till I go down to 10mg of pred at the end of the week.

I am still on my own at the moment , I have a friend coming for 2 days tomorrow and the infirmary nurse coming on Thursday morning to take bloods.I will also be discussing the fact that I am on my own and where I have left a key out side the house if necessary as I will be here alone from Friday night until another friend arrives for the week on tuesday 7th of may.

I am hoping to get the scan date soon which I know will not be at short notice, I then intend to stay on 10 mg of pred , and not reducing down to 5 mg until 6 days before the scan date .

and am also hoping it will be before my friend leaves on the 14th of May

I will keep you posted

thank you so much for every ones advice and support it is really appreciated

regards

Maddie x