Oh dear, still haven't got the hang of this site, must try harder. So, not sure where exactly I'm posting this. Also, it's long, sorry, and complicated, sorry, sorry. I'm hoping some kind souls will manage to make sense of it and maybe offer some thoughts of their own. So may kind people on here, I'm so grateful to you all.
Anyway, I've been on Prednisolone 50mg for seven weeks now. Tried reducing by 10 mg after 3 weeks (GP very insistant that I drop), got all sorts of "Is it a flare? Is it withdrawal symptoms? Is it just my own existing conditions confusing the issue" So after 6 days, having consulted different GP, went back up to 50 for another two weeks. On 26th July dropped by 5mg and was due to discuss with GP today whether to drop another 5mg tomorrow (I'm aiming for 10 mg a month but in two two week stints of 5mg drops) I'll slow down a bit from 30 to 20, obviously and then very carefully.
To complicate matters I've been having heart irregularities for the past few years and have been diagnosed as having a long QT interval (which can be very dangerous), atrial fibrillation, bigeminy or trigeminy and lots of ectopics. I'm not going to try to explain them here because it'll just be tooooo long (and I'm sure some of you know what they are anyway) . Then I had a heart attack two years ago. However, I was rehabbing quite well by myself and found that the more exercise I took the less the heart troubled me. Then GCA struck and it all fell to pieces.
Blood sugars soaring (despite me being fanatical about low carbing), dry throat so drinking lots of water, and peeing for Britain all day and night, can't sleep - one hour, honest ONE hour- last night, also restless legs all the time I'm lying or sitting still, and heart rate all over the place. And of course highly immunosurpressed. I've been told that if I get any sort of infection that I need to go on high dose antibiotics. Unfortunately, many many antibiotics can, and do, lengthen the QT interval so I can't take them, so I'm supposed to be self isolating. What's more my heart has been stuck in a round of AFib and Bi/tri geminy for about three weeks, which has never happened before. So I called 111 on emergency number on Sunday 4th. Got put through to our Local on call service and talked to a real doctor, who sent a message to my GP to say I needed urgent blood tests. Which duly happened on Monday this week. Tuesday, I found out electrolyte levels were OK and the duty GP that day said probably best wait to speak to my own GP on Thursday to discuss pred dosage and the heart problems.
But everything got very much worse on Wednesday and I wasn't sure I should leave it overnight. so I phoned 111 and got the on call doc for our area. She was adamant I needed to go to hospital re the heart probs, and I should call an ambulanec. So I did. They came did an ECG and found I was in critical Afib. They didn't tell me at the time, and said later if it hadn't calmed down they would have had to have taken me to A&E (shudder), luckily it did calm down to what they considered a fairly "normal" type of AFib. Suggested I stay calm, stay out of A&E and they'd arrange for a doc from my own surgery to phone first thing in the morning, plus the fact that I was talking to my own GP in the afternoon was good, they said as he could get everything started re referrals and tests. Because I really, really need referring to a cardiologist again.
And now the bummer. I took out the dustbin this morning and on the way back in I tripped on two exposed cable ends (disconnected, not live!) that stick up about an inch above ground level, left by the grrr*!builders. In fact I had put a yellow bucket over them precisely so that I didn't trip over them, but unfortunately, the yellow bucket was no longer in the correct place, probably due to the wind, and I tripped base over apex and crashed to the ground. I literally "Kicked the Bucket" flying (misplaced though it was). Hurt so much at first I couldn't move. Then managed to crawl into house and phone for an ambulance. So of course I got taken to A&E - but this time they put me in an isolation room and let me stay there with the door firmly closed and a big red notice saying Precautionary Measures , so I felt reasonably safe. Had a CT scan of whole ribcage area, but not the upper abdomen, they said that would need a different scan and I'd have to go back as an outpatient. Nothing broken. But they found nodules on a lung, so I'll have to go back anyway in three months. They said that I could have a mild infection, so needed to prescribe an antibiotic. Luckily I'd done some searching myself by this time and found that Amoxycillin doesn't prolong the length of the QT interval, which might be of interest to anyone with the same problem. So I've come home dosed up, frightened, still shocked and utterly despondant. Might have to UP my dose of Pred back to 50mg rather than continuing to taper. But for how long? Anyone got any ideas. So, so fed up. Gosh it's late, don't suppose anyone else is still up (except perhaps the Pred Insomniacs Club) Think I'll go upstairs now and cry into my bedsocks! Sorry again about length.
Written by
Blondgrassblowing
To view profiles and participate in discussions please or .
You have been in the wars. It does sound like the medical profession is looking after you though. Hopefully you can get some tests done so they can ascertain all your problems. Falling over being thrown in really does not help, what a rotten thing to happen. As a total aside my brother used to look after the marketing of Amoxicillin when he worked for Beecham many years ago. He used to have bottles of samples and we discovered that if you took it before going out and getting drunk, which we did in our twenties, it stopped one getting a hangover!
Thanks piglette, you too were obviously wandering around in the early hours! Saw your reply and the "hangover avoidance technique" made me smile. I'd perhaps better not tell my friends grandkids about that!!!! I was so puch drunk through lack of sleep that I didn't reply 'till now, Can't even hit the keys properly 'till after breakfast.
Thanks SusyTe, Ohhhhhh! Someone to make me a cup of tea! From various friends who live alone (like me), that's the one thing they mention most - when you're just feeling so dead that the hassle of even just getting out of the chair, let alone going to the kitchen, seems out of the question, it would be so lovely to have someone just appear with a cup of tea.
Sorry to hear this, my goodness you have been through the wars.
Others more qualified will advise on heart issues etc, but I’d say definitely no reducing your Pred for time being, certainly until things have settled.
See how you are over the next few days, and if you feel your GCA is flaring, then go back up to 50mg initially. … it may well do, and undoubtedly you will get some backlash from the fall itself… so plenty of TLC…. and rest as much as you can.
Best wishes, and back to us for more help as and when.
Thanks Dorset Lady, I'll do that. Truth to tell, I don't think the 50mg had adequately cleared the symptoms and at one stage I floated this at the doc and asked about a week at 60mg, but she wouldn't hear of it because I had no optical involvement (had every other sympton, but no optical nerve involvement. (Thatwas my first, fairly rigid GP, have since changed to one more on board with slower tapers). I'll see what happens at the 45 I'm on now, once the fall shock has subsided a bit.
Have to phone GP this morning for urgent referral to cardiologist re heart.
Oh my. You are going through it. As a GCAer since June 2022 and with Afib/atrial flutter issues I empathise. Pred insomnia is grim on top of other health problems. I have nothing to add but to send you a virtual hug and good wishes.
I also had long standing afib - had an ablation in January which seems to have worked well although a bisphosphonate infusion triggered atrial tachycardia which has also resolved now - I also live on my own. It is horrid - Christmas dinner was a bit of steak done in the airfryer and salad, I couldn't stand long enough to do more! Or even walk to the pizzeria for my traditional meal on the 25th!!
And that cup of tea? I hear you! I have neighbours who would come if I asked - but Italians can't make tea ... I have a thermos jug for my camper. I make tea in it as if it were a teapot and can get 3 mugs at least before it is not hot enough to enjoy. Saves the effort 3 or 4 times????
Why do you think you may need to raise the dose? What symptoms are still there?
Oh, thanks for that. I used to have a thermal jug for soup, but it disappeared from my life some time ago (haven't a clue where it went), but I'd forgotten all about it. I also have a camper, but at the mo having a problem with the gas, so can't use the gas rings. Thermal jug sounds ideal. I'm hoping to get away for a few days at a time when things settle down a bit. I'm having to self isolate while I'm so immunosurpressed so my camper is like my little "safe" bubble. At least it will let me get out of the house a bit once I'm not so wobbly, Hopefully before cabin fever sets in!
Mine is quite new - I haven't used the gas at all yet, can't be botheres! Campsites in Italy have electric hookups and I have a kettle and fridge - all I need.
Hi Blondgrassblowing! So sorry to hear of your troubles. Heart problems plus GCA is a worrying combination, especially frightening when you live alone. Sounds like you have good medical support which together with this lovely forum is reassuring. I also miss the former me - long walks and camping adventures with equally energetic friends, the confidence and stamina I used to have. So, thinking of you, and keep telling yourself things will get better - eventually! 💐
Hi random901, I started replying to you just now, then hit the wrong button (twice) and got myself totally lost in the site! But thanks for the comment. I get so frustrated, especially as only seven weeks ago I was planning a campervan trip to Norfolk cycling and garden visiting (easy cycling in flatish countryside/electric bike - heart problems in past seemed to be able to cope quite comfortably with that). Then GCA arrived out of the blue and screwed everything up. I plan my garden in order to distract myself from thinking frightning thoughts about what could happen, but of course, stand no chance of actually carrying out those plans.
Don't give up on the garden, cycling and campervan planning. It might not be feasible yet, but I am doing same. Aiming for some time next month when quieter and less expensive🚐
Hi there, I can't add much more to what everyone else has said. Just wanted to wish you well. When I had spinal surgery last year and was left alone my son set me up with a one cup kettle which I had in the bedroom. Milk in a flask, tea bags,coffee, mug and spoons and I could make a drink from my bed. I only needed it for a few days but it was a real help. You can get the one cup kettles from Amazon or Argos online.
Hope you get everything under control soon. I am a long term semi insomniac. I have trouble getting to sleep. However, got into a bit of a routine now as I find best sleep time for me is after 3am. I then sleep until meds and 7am then do a meditation which helps me fall back to sleep until about 10am. I stopped worrying about my weird sleeping habits and all my neighbours know I am not available until after 11am 😊
Hope you feel better soon. The yellow bucket scenario made me smile as that's just the sort of thing that I would do. The more I try to avoid something, the more likely it is to happen. Karma I guess.
Today I will mostly be hunting down the tiny live shrew that my cat Gandalf decided I needed in the night. So far it's 2-0 to the shrew. Cats eh!
Anyway hope you get good advice and feel better soon x
Hi S4andy. I seem to have similar probs to you re sleep, also long term insomniac, couldn't get to sleep, then would wake again after about an hour and a half and stay awake 'till about 6am. Then might get another hour or two. I followed Michael Mosely's seleep deprivation plan and it did mean that I eventually managed to get to sleep quicker (mind I was going to bed at 2.30 am and forcing myself outof bed at 7.30) and it still works, but only if I go to bed really late. If I get into bed at say 10.30 pm I don't even try to go to sleep, I just do puzzles or read until much later - it was 4.00 am last night!!!! Then I only slept for about 90mins. It's SO boring!!!! Plus of course I'm wandering around like a Zombie for the rest of the day, brain on minimal function, memory almost non existant. Also, I now try to nap during the day, especially after eating, but even if I do go to sleep I wake after about 20mins.
The Yellow Bucket Affair - reckon I was born under a Dark Star! I would love a cat, always had cats all my life, but when my last fluffpot died in in 2009 I decided to go travelling, so didn't get another. But now that it seems my travelling days are over for the foreseeablle future - I'm very tempted. However at the mo I keep getting carted off to hospital (five times in July), so perhaps I'd better resist just for now. Mind there's a Puss called "Digger" on the Eden Animal Rescue Site ......
I'm so sorry to read about all your issues and hope things get a little easier in time, as you eventually reduce the pred dose. In the first year after I was diagnosed, I ended up in A & E twice with 'paroxysmal' AFib, but not since. I hope you get the cardiology referral soon.
I hope you get over the fall as soon as possible. On Monday, after my Rheumatology appointment, I crossed the road opposite the hospital to get a bus back to the train station and tripped on the pavement edge. I fell all my length and crashed into the bus shelter with my head (I think the shelter was polycarbonate, not glass, as it reverberated! 🤣) I gave an elderly man inside the shelter such a shock - he was shaking like a leaf 🌿 and I had to calm him down, as well as myself! A woman saw me fall as she approached the bus stop and said I should go back over to A & E, but I declined! I called in at Boots and a kind assistant got out the First Aid kit and gave me a plaster for my knee 🩹. I am so lucky to have got away with a few bruises, a grazed knee and a lump on my head, which is getting smaller.
So you will realise why your post 'spoke to me' and I wanted to wish you well. ☕ Here is a virtual cuppa for you! 🌻
Rugger, if you are on anticoagulants for paroxysmal a-fib, I was, a “lump on my head” required a check to make sure no sneaky brain bleed is occurring.
Thank you so much for your concern. It's 5 days on and I seem to be alright, thank goodness. I'm not on an anticoagulant and have been crossing my fingers for the last 8 years. I have had an irregular heart beat for as long as I remember, since childhood and was reassured by a Cardiologist that the effect was benign (I forget just what it was called), so I reckoned that if I hadn't had any problems for about 70 years, I could get away without adding in yet another medication.....
Crumbs Rugger, that sounds awful. You poor thing. At least you weren't on anticoagulants, so the "Help I'm going to bleed to death if no-one finds me" wasn't an issue (maybe). I did without anticoagulants for a few years, then I had a heart attack two years ago. So after that I thought I'd better do as I was told! This was when I was 73, before GCA arrived. Just a gentle warning.
A fib is sneaky and you often don’t feel it. …then a stroke . You said you had paroxysmal afib. So did I. It got worse over time and I had a successful ablation last Spring.
Oh goodness that's a heap of trouble. I hope it all gets sorted soon and you recover enough to get some joy out of life again. A little excursion in your camper van would do wonders I suspect. Sending hugs and good thoughts from Aotearoa NZ
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Covid Sick Day Rules
Feeling a bit down and lonely today so logged on here to connect with 'my (PMR) tribe'even though I should be doing other things
Plaquenil for PMR
Is it PMR pain if only right side
hallo
