Hello BLF friends
Hard to go back to my 7.5mg dosage I am still on 10mg and I have low blood sugar, I could feel the cravings and shakes coming for the last 2 days. It is one of the side effects of withdrawal unfortunately so I found this morning this good link to help me at out at 5.30 am and the fruit juice calmed me.
mayoclinic.org/diseases-con...
Have a good day xx
Fran
Good morning Fran ... I write this as I'm still awake trying desperately hard to fall asleep as not managed to so far all night ... my feet and bottom half of my legs have swollen once again ( something which I suffered terribly with when I had my bad 3 weeks in hosp back in Feb) . It fills me with dread when they swell which has happened twice since leaving hosp so this is the 3rd but got bad pain at back of left leg at the bottom above the ankle oh just another thing to be seeing doc about ..Your up nice and early which I'm usually just getting up myself at this time not trying get in bed lol xxx any nice plans for today Fran?xx hope your well and you sort your preds out !!either way you have Great day with your mum and take it easy.. mel xxxx
So sorry Mel, did you see the doctor about your legs? Is it water retention? Oedema..or vascular problem, they gave you injections in the tummy in hospital? legs up in the air, support stockings my dear Mel.
If you don’t have any at home anything that can strap those legs a bit, not too hard mind and your feet should be above your head, so plenty of cushions books magazines under those legs.!!
Make an urgent appointment..you shouldn’t suffer like that 💕
I woke up early because I had the jitters..meds and their side effects..Of course I am still at Mum’s, I’ll go and see the pharmacist for advice, take my blood sugar I think, eat more carbs..
At 11 am I have to take Mum to the bank and to the jeweller’s because we bought her some nice clip on earrings for her 90th and they are too tight.
Then we’ll have a bite to eat in town. I don’t know if she will be able to walk we’ll have to take a taxi. It is a very hilly town and she lives at the bottom of the hill!!
Then I have respiratory physio at 5pm.
Let me know how you are getting on xx
Fran
Hope you are feeling a little better now Fran and wishing you a good day.
Take care and hope your mother is well too. Xxxxx
Hi Carole
Still shaky..I sent an email to my doctor..we’ll see..maybe I have to increase the pred again..it is one of those things when you have to self-manage your dosage..
Have a good day Carole xx
Petes on 10mg pred per day and that’s where he will stay.
Enjoy your day xxxx
Ah! Good to know Carole..Well there you are, reducing is very difficult..I reread my plan and just took another 2.5mg for now until I get some answers. It said be aware than it is better to increase than decrease if you are starting to get unwell.
I have to see a new endocrinologist at Geneva Hospital, waiting for an appointment..
Thanks for that info xx
Fran
You take care Fran and hope you get your appointment through soon. Xxxxx
Horrible to feel so poorly Fran. Hope you're feeling better now. I find the Mayo Clinic very helpful around a number of conditions. Im sure you're right about increasing rather than decreasing though it sounds like you really want to get back to where you were before. Steroids are such a mixed blessing aren't they? Hope you are able to have a nice day, thinking of you, xx 
Hi O2
Thank you so much for your kind words.
Mayo is great I find.
It did settle me to increase by 2.5mg this morning.
I phoned the medical secretary of the new endocrinologist about my hospital appointment she said 21st December. I said I am unwell presently, I don’t know how to manage the change of dosage, can you put me on a cancellation list.
She said she was going to phone my surgery, get my file and ask the doctor to see me earlier. Very kind lady.
I was relieved..
So it is wait and see!!
Well the sun is still shining and Mum is ready!
Hope we’ll laugh all the way to the bank😉
Talk to you soon xx
Fran
It's a good job you are so well-informed about your condition Fran. I often wonder how people with complicated illnesses who either can't or won't understand them, survive.
Can you pin down what caused the dip in blood sugar ?
Morning Billiejean
I just got your notification on this one..Thank you for your concern 🌸
I don’t know enough unfortunately I just live and learn..
It is a classic withdrawal symptom..and prednisone can give temporary diabetes.. I was given an information booklet and an emergency card when I started on the treatment.
Well at first I didn’t click really. I did a lot on Monday, had a good walk, carried a lot of shopping. I put my sudden hunger and jitters to that.
But I am always borderline on blood sugar. I fell in the street once in London and the lady at the bus stop insisted on calling the ambulance. They took my blood sugar and told me off. Ask me if I had had any lunch, I said yes it was 4 pm. They told me you must stop for a cup of tea and biscuits. Took me back to A&E, fed me, measured again and sent me home.
The doctor hasn’t answered my mail so I read any credible source I could find on tapering down
and you can lower on alternate days for people who find it hard, I was even given 1 mg tablets to taper down, I probably went too fast from 15mg over 5 days then 12.5mg over 5 days and I was on 10mg for 3 days when it started. So yesterday I went back up to 12.5 mg, I am going to wait until I am stabilised, then decrease by 1mg on alternate days for 7 days. Then onwards to get back to my 7.5mg.
Hopefully the doctor will have got back to me by then..I have to think of the journey back on Monday. I am supposed to increase dosage when I travel, it is an additional stress for adrenal glands insufficiency sufferers, which I now have as a result of years of steroids inhaling..
So there you are my friend.. and how does being home feel like?
Take good care xx
Fran
Fran, steroids have really given me grief for the last month. In an attempt to limit that damage, my consultant hurried up the withdrawal process and 72 hours later when I left the hospital I was hit with a double whammy of reacting to the steroids still in my system and an increase in breathlessness from the tapering too quickly.
I did point out to him that I'd had a bad reaction in the past from tapering too quickly but didn't have the facts and figures in my head. I've foubd these now ( I keep medical notes) and will bang him over the head with them when I see him next.
Hope the rest of your tapering goes okay but nobody knows your body better then yourself when it comes to these matters.
Ah you too Billiejean 🙃.. I think doctors are eager to get us down to the minimum required because of longterm effects but it is a shock to the system..
Doctor hasn’t answered my email so far.. I listen to my body and juggle with packs of different dosages while I’m waiting for my hospital appointment..🤣
Best of luck with your consultant xx
Fran
He's not a man who likes to be told he's wrong but I'm tired of the way consultants/doctors never have to take responsibility for their actions and just carry on regardless. So I'm going to point out his inconsistency with the steroid tapering and how much added discomfort that caused me. And if he can't handle that then maybe it's time for me to move on.
Well there are ways and ways of presenting facts, remember you need him on your side..my daughter tells me manage up! I said what’s that? She said you make them believe it was their idea in the first place..figure that one out Billiejean 😃..cheers 🍷
I take your point Fran and this attitude usually dictates all my interactionswith him. I have a week to decide how to present him with the facts I want him to be aware of. But you know we shpdn't really have to be massaging the egos of these people. Your daughter is wise but when you're in a temper wisdom goes out of the window Luckily I have a week to calm down.
Too right!! 😃..yes she usually tells me that when I’m getting rattled..one week should do it sweet Billiejean 🌸🌷🌺
Happy fran,whilst you are on your travels and doing so much what would be the consequence of returning to your original steroid dosage at least until you get home where you can manage your withdrawal in safer and more familiar surroundings.I realise you are very keen to go through this regime as part of your ongoing health management and knowing nothing about your condition this is just a shot in the dark from an uninformed but concerned friend.good morning,what the hell am i doing being awake at this hour of the day.......skis and ever attentive/opportune scruffy xx
Hi Skischool
Thank you for being up early 😉
You are right..although there is always something to deal with 😃 ..some test, some exacerbation, for which I should raise the dosage etc..then tapering down again..so I should stop ranting and get on with it.
Thank scruffy too xx
PPFE from the land down under 
Up and down
Maintenance dose of prednisone - how effective? 
