I have been pretty poorly - landing up in A&E needing to have my heart reset. Heart rate was 236 and blood pressure extremely low.
They don’t know what caused it but could have been a Mast Cell Activation reaction to Amoxycillin.
I upped my Pred dose from 5.5 to 10mg for about 5 days I think. Then a doc said that she’d like to see me come down again because it may be inhibiting healing. Came down to 8 for two days, 7 for two days and now on 6 - which I take at about 9am
I am waking up at around 3 to 5 am sweating and feeling a bit delirious at times.
I am also very shaky and weak.
I’ve been in and out of A&E with heart racing, shaky and horrible horrible anxiety
Not eating much - no appetite - but last night had a chicken thigh and pak choy. I try eat little meals all day - protein / a little veg / fruit (blueberries and apples.
Cortisol issues or hypoglycaemia?
Should I take my Pred at a different time?
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Slosh
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Oh hello Slosh old friend! I am sorry that you have been through such a horrible, challenging time. What about taking your Pred when you wake up with the awful sweats. As you know, that is when the inflammatory substance is released into the body and as you are awake anyway you could try zapping the Cytokines with Pred. Have your blood sugars been done recently? You are also coming into Synacthen Test or at least morning cortisol test territory. I would seek to have these potential issues tested out. You do sound as if you are suffering because your Pred dose is too low but I suppose your doctor is having to prioritise all your health issues. Tell her how much you are suffering. Here’s me thinking that you were off in the land of the well. Oh these diseases! 🌸🌸🌸
Hello there, poor adrenal function at a time when you need them to work can cause low blood sugar and low sodium and high potassium. I remember someone on this forum had a huge problem with getting frequent very low blood sugars related to low adrenal function. Try keeping a snack by the bed and see if it helps. I suspect the pop up to 10mg shut the adrenal glands down from whatever they were able to muster at 5.5mg. When your body goes into panic mode because it is registering low cortisol, it really feels like one is dying. A rapid reduction on top of everything else may have been a bit much for your body to adjust to with ease. Also, people here, me included, often note that allergy symptoms increase or develop on lower doses. Given Covid can increase Mast cell activity as well as the low Pred phenomenon could be a double whammy. It is recommended that at low doses Pred is taken in the morning so I wouldn’t change it unless told to.
Thank you. When you say morning for low doses - what sort of time. Should I take it a bit earlier - can’t stand that shaky / faint - anxious / heart racing feeling and it lasts for ages. I tend to only feel vested by the afternoon.
2am is the ideal time to take pred - working by the time you get up because the inflammatory stuff is shed in the body about 4am, Taking pred at 2am means it is there waiting and the inflammation never gets going. It is also ideal for getting a very low amount of pred in the body at midnight which is when the switch for the adrenal production of cortisol is turned on by there being very low levels of steroid in the body.
So sorry a bit confused - should I take some before midnight as well as at 2am - because it I took it at 2am it’s unlikely that there would be any still at midnight following.
No - taking it before midnight is what suppresses the return of adrenal function, If taking it at 2am doesn't last the full 24 hours and you are splitting it already, take the smaller part enough after 2am to carry the effect through the 24 hours. Lunchtime may well be late enough.
It doesn't matter what TIME you take the pred, the effect lasts the same amount of time. If you are managing 24 hours now, then taking it at 2am will still last the same amount of time. So why would you start splitting now?
Morning Slosh. I've been taking my Pred early morning 02:00-03:00 for many months now and I have generally got through the day with no problems. I take it with Greek Yogurt and a Banana. On 4.5mg at the moment. Take care hope all goes well.
I may struggle to change mine to that time - because there are very few easy snacks that I can eat, - I have Mast Cell Activation Syndrome with Histamine Intolerance.
Took my blood sugar this morning at 5am after waking up sweating again and it was 5.9 - a bit high for fasting
I will keep testing two hours after meals today and each morning - just to gather data.
As DL says - if the time you are doing it works, that's fine. But if your mornings are bad, taking pred at 2am makes them better. Most people improve quite a bit by evening anyway so it would balance out. It is what works for YOU that matters
Reading this thread with interest although I’m not on pred and don’t have PMR but Stills.So inflammation starts early hours….. is this why I wake up with swollen painful joints at 6am that ease as towards the evening?
Most likely - the inflammatory cytokines that cause morning stiffness are mostly shed about 4-4.30am. Not sure what triggers/governs the timing though.
Don't know if they have investigated that - there was a study in RA patients about timing of pred and morning stiffness. It resulted in the development of the delayed release format of pred (Lodotra/Rayos) - which I use, never have morning stiffness!
I’ll report any success but it makes total sense. Thanks again and sorry to digress when my issues are insignificant compared to those in this original thread.
I think that I could now be having a ‘flare. Can’t tell with everything going on. From yesterday afternoon feel like I’m running a low grade fever. Also getting a bit achy.
Shall I go back up to 10mg - sick day rules? How long would I need to do this and then how should I taper?
I worry to mess around.
I’ve been on 7 for about 4 days now.
I think there is extra inflammation from the Nast Cell Activation being a bit haywire and all the reactions.
Nhs gp wants a 9am cortisol test.
Will increasing Pred affect the results.
So confused - just can’t figure this out. But feel inflamed and just horrible.
With Covid so recently I’d agree with PMRPro that it could be a big factor. You are less than a month away from it. Although we are told that Omicron is less severe in the acute phase than Delta, the drawn out after effects are still very much a feature for many and long covid is still very much a thing. At this stage you wouldn’t be classed as having long covid yet because you are still only 4 weeks away. I had all your symptoms, including mild fever and intermittent wonky heart rhythm continuously for 3 months and then every few weeks for 7 months. My 18 year old nephew who is a sportsman still gets puffed going up the stairs and has intermittent racing heart from covid at about the same time. At 7mg I’d expect your adrenal glands to be likely still too suppressed to produce anything exciting so upping the Pred will just make them less responsive. I found 7mg to be the worst for poor adrenal symptoms because it wasn’t enough for the day let alone anything extra but still too high for the adrenal a is to get the idea it was time to shine. Reducing very slowly was how it got better.
I would give yourself a bit more carb, ideally wholemeal but whatever you can muster and see if that helps. Like a banana before bed.
As PMRPro suggests, stick with the 5.5mg (unless told otherwise) because otherwise the test will be meaningless. My Endocrinologist said even 5mg can suppress the adrenal axis in some people, so if the result is a bit rubbish, there’s still hope. What it will mean is that some of your symptoms will be your body not having enough cortisol to cope with a frenzied immune system.
It would be better to stick at the dose you are at until you have had the basal cortisol done - and remember not to take pred in the 24 hours before the blood sample is taken, And be patient! We don't recover from anything as fast as we did - and Covid has its own rules!
To be honest - I'd be very suspicious of the Covid and its left-overs. It doesn't have to be a severe infection and you appear really unwell in order to then develop Long Covid. You don't recover from it quickly.
What sort of arrythmia have they labelled it as being? I have atrial fibrillation - have had it since I first developed the symptoms of PMR and the cardiologist is confident it was the autoimmune part of PMR that damaged the electrical cells in the heart that govern heart rate. I have it as paroxysmal a/f - irregular and intermitteent episodes that last up to a couple of hours and I'm on enough medication for the heart rate to stay below about 130 so I just wait it out. I did have a bad episode just before OH died - 190 and blue-lighted into the ED - put down to exhaustion and stress.
But you beat me - my first severe a/f episode (reaction to i.v. diazepam, has happened twice more) my heart rate went up to 232! And the doctors were goggling at it. When your heart is beating that fast, the blood isn't being pushed around the body effectively and your BP does go very low. I also find that even with my short and relatively moderate episodes I feel quite rubbish the following day - really tired out. Your heart has been working hard like runnig a race, it needs a rest and it is telling you so. Plus everything Snazzy has just said.
I don’t know what kind of arrythymia it is. St George’s A&E is sending my records to my surgery in Rye. Have a scheduled appointment for next Thursday - at this stage a telephone consult.
Had a shock this morning with thinking one of my son’s dogs had gone missing. Was pale, shaky and trying desperately to calmly control my heart rate for about two hours after that.
So do you think it could be Covid related - like ‘long Covid’
I had lots of blood tests in A&E - I went more than once because of the extreme shakiness / weakness and not been able to catch my breath (but O2 Sats good) they didn’t mention that they picked up anything untoward but they don’t communicate much.
It certainly shouldn't be ruled out - there seems to be a lot of evidence that Covid is triggering some form of autoimmune disorder which has a lot of parallels with PMR and lupus but is lumped under "Long Covid" by a lot of non-experts. My arrhythmia is definitely worse in a flare - the inflammation really seems to feed it. And stress can bring on episodes of arrythmia and tachycardia if you have it in your history. And Covid seems to have a lot of inflammation floating around.
I’ve had this Arrhythmia episode once before about a year ago - but it resolved before I even got to A&E - there was no ambulance available and had to eventually take a taxi to A&E in Rye.
That time they admitted me to watch Troponin levels and at the end thought that I was over medicated for my thyroid (100mcg) and was dropped to 75mcg.
Once again very grateful for the wisdom and advice on this group.
HiSorry I haven't commented in a while. Thought I'd just add to this, as you're saying Covid seems to be related to inflammatory disorders/ auto-immune etc..
You might recall I thought my PMR might have returned last year. Well, my Rheumatologist diagnosed seronegative inflammatory arthritis. She was about to put me on rheumatic drugs for this in July when my inflammatory markers started normalising, then gradually, over a few months, the symptoms went away. She is still being cautious as inflammatory arthritis can wax and wane but it's looking a lot like a Reactive arthritis caused probably by the AZ Covid vaccine. I was fine after the Pfizer booster. I'm wondering if anyone else has had this? I've now had Covid a few weeks ago and so far so good.
Not so much related - as a cause of the problem, I think there is a difference.
We have someone on here with palindromic rheumatism - inititally diagnosed as PMR but it comes in "batches" and moves round. Episodes can last from hours to months and appear in various areas but it goes on, rather than resolving as the initial cause resolves as reactive arthritis. Reactive arthritis tends to be thought of as in response to bacterial infections - interesting your rheumy thinks a vaccine can cause it.
I had a flare after the second Moderna jab, nothing after the 3rd Pfizer jab - although I have been in a major flare for the last couple of years and particularly the last 6 months due to stress.
That reaction sounds like the sort of thing I got when I had a shock when I had poor adrenal function. The not being able to settle all the fight or flight things for hours was part of it. It sounds like you’ve potentially got a few things all coming together such as residual acute Covid effects, flare, poor adrenal function, long Covid effects of over reactive immune system. Someone medical needs to make a decision on what you do with your Pred either keep reducing or cut your losses a go up to 10 or above and start again slowly. If it’s the former you need to really rest and not over exert your body until your cortisol production has caught up. My life was very tedious for months until my system adjusted and you’ve also got Covid on top. As, I suggested, perhaps try a bit of carb before bed to see if you are getting low blood sugars from low cortisol.
Have a Zoom appointment with a private Endocrinologist next Wednesday evening. Unfortunately have lost confidence in NHS and have no relationship with the new gp practice in Rye. But am going for a 09:00 cortisol blood test.
I will try some carb before bed - thanks.
I have to start work next week - fortunately from home and phasing in slowly.
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