Hi all - I went to South Africa on 10th and landed up in hospital on 11th with viral pneumonia.
Was on 3 x 200 mg cortisone - IV - per day.
Hectic antibiotic - IV.
Then Tamiflu and then another antibiotic and Symbicord inhaler.
Was sent home with cortisone tabs to taper down and then for some unknown reason (madness) when I stopped those - I did not start my usual dose of Pred (6mg). I felt no PMR pain and so feeling rather excited I wanted to test it - so about three days with no Pred. Legs got heavy and I suddenly thought 'oh dear what have I done! - didn't consider the fact that Ivd been on steroid treatment go two years and can't just stop.
Became quite light headed and faint - Well I landed in A &E in South Africa on Christmas Eve on a drip - 200 ml cortisone. Apparently IV cortisone not the same strength as Pred?
Felt OK on Christmas day in the afternoon. Took 8mg Pred that night.
Felt OK on Boxing Day. Boarded a flight
- took 6mg that night.
Landed at Heathrow and felt quite faint - needed to ask for assistance.
Went to my daughters - Slept all day. Took 8mg on night of 27th.
Still felt wobbly and my right arm felt as if there was a band around it and heavy. Mostly lay around.
Went back to Crawley on Sat by train - exhausted - still wobbly and a cold burny type feeling in my legs. Took 7mg last night.
Cold burny feeling - like through my veins a bit worse.
Am I under medicated - physiologically or over medicated?
Not sure if my heart is ok.
Anyone else ever experience this cold burny type feeling - as if it's all in the vascular system of legs?
Thanks - wise ones.
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Slosh
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Hello, what a rollercoaster your body has been through. My first thought is forget PMR it’s your adrenal function I’m worried about. You were on 6mg before the bomb dropped, probably still not low enough for your adrenals to even think about working properly. Also, at this level, you don’t have enough of your oral dose sloshing about to cope with even a normal day sometimes. The advice of endocrinologists is that if you have an infection or some event that challenges your body you have to increase your dose and you’ve had just that, with knobs on. The high iv doses in hospital were also to stop an adrenal crisis as well as help with the infection. A severe infection like that doesn’t just get fixed quickly and on you go but takes weeks to recover from and on to of that you had a long haul flight. To go back to your old dose let alone stop is concerning. I think in view of these symptoms I’d want to know that there is a medical professional keeping an eye on you and perhaps you need a higher dose to smooth out the massive swings in dosage your body has undergone.
Thank you for your response - I really appreciate it.
I am tired, out of breath and the unbalanced sort of dizziness is also concerning me.
Maybe I'll email my Rheumy?
Do you think that even with having the 600mls / mg IV for 3 days and then the 25mg for 4 days and 10 for for days and then nothing for 3 days and then the 200ml/mg IV on Christmas Eve - that my levels are too low?
I couldnt say how much is right in your case, I’m not a doctor. The doses of steroids you've been having don’t last in the body for ever and would have certainly kept your adrenal glands asleep, making the need for onegoing support even more necessary. However, it might be wise to see your general doctor to listen to your chest and get to the bottom of your breathlessness, check that you don’t have any secondary infections, decide what dose of Pred you need or any other investigations so they can see the wood for the trees. The feelings you are getting may not be PMR at all. I would suggest it is a bit more urgent than waiting for a Rheumy to get back to you by email because you have been very ill. Also, it is good for a doctor here to know what has been going on in case you subsequently have a problem in some way, rather than them having to play catch-up.
I believe if you ring a GP and ask to be seen on the day because it is urgent, they have to see you. When I worked in general practice a couple of years ago that was the case. Some people knew this and abused it but I don’t think you’d be in this category because you’ve been seriously ill and not out of the woods with complicating factors.
Pred doesn't stay in the system for very long, although the effects linger a bit longer. Hence the need for daily doses. Cortisone isn't as strong, as far as I know. I think people who have to take hyrdocortisone because they cannot tolerate pred actually need to take several doses in a day. I second those who think you need to be under the care of a physician while things get sorted out and your body rebalances.
You cannot wait until later in the week, you may well collapse before then, sorry to say that but it’s a possibility! You need to be seen as soon as possible even if it means going to A&E
So have been thinking - could my sugar levels be off? When I was admitted to hospital for the pneumonia my sugar levels were 7 - so a bit elevated.
I took 10mg of Pred last night at 10:30pm.
This am I woke - went to bathroom - chatted to my housemate, went back to my room and took my Levothyroxine with water. Watched something in YouTube - then went downstairs and made a cup of tea - felt fine. About half an hour after that I started to feel a bit faint / light headed - and that cold burny feeling in my veins started. I know that I am sucking at straws - but so confused about it.
It is probably just one of the 80+ effects noted with pred - lots of people have mentioned some form or other. I took my pred early morning and if I went shopping, did more than usual in the late morning I had wobbly feelings like you describe. By rearranging my timetable I would be at home when they happened and they were far less obvious, often didn't even notice. One lady started taking her pred before bed - all senses of wobble happened while she was asleep...
How are you feeling today, Slosh? I've just reread your post and, wow, what your poor body has gone through, you really do need to take it easy for a few days, and take a normal, helpful dose of pred at a regular time. Hope 2019 brings you better days.
Slosh darling I am worried about you. Please please get seen today. You could have a bit of pleurisy or secondary infection and goodness knows what your pred levels are doing. Please please get seen urgently. Update us???? Xxxxx
You really need Medical Intervention, as some of the others have already said.
When l had surgery 3 years ago & had Hydrocortisone IV in Theatre, l continued on my Pred infact it was increased slightly for 2 weeks.
When l had Chemo & was on Dexamethasone for 5days each cycle l continued on Pred (though as an extra bright bouncing bunny!)
Hydrocortisone & Prednisolone work in different ways, the Hydrocortisone is shorter acting & doesn’t have the same anti inflammatory properties as Prednisolone.
You really do need to be seen as soon as possible.
The A & E Doctor thinks my symptoms could be steroid 'rebound' ?? And the PMR flaring.
Said my body had been through loads also told me off a bit for stopping the steroids.
I am wondering if the cold /burny feeling in my arms and legs could be inflammation of my vascular system. I can only describe it as if I've been injected with something.
So glad you’ve been checked out, time to rest & recover and no reducing of Pred for a good few weeks until you feel better.
Book to see your own Doctor too to keep an eye on you. What a terrible time for you taking ill in South Africa, then your journey home.
Rest & Relax now & endure you take your Pred.
All The Best for 2019 🥂
PS Ask your GP to check your CRP Levels if they didn’t do it at the hospital, it’s probably raised as you’ve been so ill but might be worth monitoring it for a while.
My Mum was a long time Asthmatic on Prednisone, she eventually was able to wean off them but developed an Addisons Crisis & subsequently had to remain on Hydrocortisone, 3 times a day until she passed away. However, if she ever had a Chest Infection/Asthma her GP always gave her Prednisone for a set amount of days but always had to remain on the Hydrocortisone as well.
You’ve paid a tough price but are now an expert by default & experience can sometimes be a bitter teacher.
Don’t beat yourself up, l know when l was on the Dexamethasone with the Pred l was High as a Kite, very difficult to live with I imagine but it was only 5/6 days on each Chemo Cycle!
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