As I wrote in episode 1, I am trying to taper my daily prednisolone to zero after a year of treatment starting at 20mg. Although my lung inflammation has benefited greatly in this time, I have developed severe daily episodes of sweating, tachycardia, extreme fatigue, nausea and shaking.
So my goal is to reduce by 0.5mg every 2 weeks, getting rid of these symptoms without jeopardising my lungs.
The past 2 weeks have been a really mixed bag. The first few days were about average. Then i had a few days of real improvement, when I was able not only to potter about the house without discomfort, but I could walk up to a mile or so. To have a few days without the sweating, nausea etc was a relief.
But on day 12, after another walk, I had another severe episode and yesterday was bad all day. Today too has started badly. Because the symptoms show such a clear daily pattern (best in the morning, increasing fatigue and hot flushes during the afternoon, easing at bedtime) I anticipate another day sat with a cold flannel draped over my head, watching 1950s films on YouTube and the birds in the garden (its not all bad!)
Tomorrow, it's down to 4mg. A luta continua!
Mike x
Written by
whisperit
To view profiles and participate in discussions please or .
YAY Mike 😍...I love your attitude...just reading your posts helps me put up with my stuff 🤗... my fingers are crossed for you...am so glad you're keeping us posted
On my stroll last Saturday (before my meltdown), I saw a Hobby hawking along the riverbank, and this morning, a woodpecker has finally graced the garden feeder (he is hammering away at the peanuts as I type). These, and the virtual presence of friends like you, are the things that help me to keep going.
Hi Mike, sounds like you are achieving great things. I don't want to put a downer on it but if today started out badly and yesterday was bad do you think you should give your body more time to adjust before you reduce further? I know I'm sounding like a boring old worry wart because I know how great the sense of achievement is when you manage to reduce by any amount. It just sounds like you are having some tough side effects?
Not trying to tell you what to do, just concerned for you.
I appreciate the concern, happytulip, your thoughts are very much mine too.
On balance, my reflection is that I've been having these symptoms throughout the time I've been on pred, and in fact, the worst periods have been after 4 or more weeks on the same dose. So continuing the taper is no tougher than keeping on a steady dose from that point of view.
But rest assured I'll be straight onto the phone to see the on-call GP if things are going pear-shaped!
You have discussed this with your doctor I assume? Your adrenal glands have to start to take up the slack once you get below about 6 or 7mg and produce cortisol, the body's natural corticosteroid. That takes time - and even 0.5mg every 2 weeks may be too much.
They are all common side effects of pred - have you tried splitting the dose? That has helped a lot of people with such problems.
Thanks, I am very grateful for your expertise, PMRpro.
I've discussed this over the last 6 months or so with every medic I have spoken to, and told them I think it's related to the pred and my own cortisol production. My rheumy has said that he doesn't think this is the case, and the others have said to do whatever my rheumy says. So I have gotten very frustrated.
A split dose sounds attractive, but I thought that we are supposed to take the whole dose early int he morning as this best mimics the natural cortisol cycle? x
The way that suits you best is the best way to go! Actually, although there is a dollop of cortisol produced in the early morning, other spikes are released at various times, including in the afternoon. A single dose of steroid is also non-natural. Some people take their pred 2 or even 3 times a day (usually because their doctor didn't know any better) but the single dose is felt generally to combat the inflammation most efficiently. But it isn't written in stone. In some people the antiinflammatory effect of the pred doesn't last the full 24 hours - it can be anything from 12 to 36 hours. Everyone is different - and there really isn't a one size fits all approach.
I really need a tutorial from you, PMRpro. I get a spike of symptoms about 30 mins after taking my pred, so it seems likely that they are due to a steroid surge. What I have been wondering is why I would get other symptom spikes later in the day - late afternoon and evening is typical. As I type, it's 21:30, and my face is so hot you could fry eggs on my cheeks. Could this be my body trying to boost my cortisol level, but being disorientated by the pred and overshooting? Or is that my cortisol levels are now chronically low and the symtoms are due to excess production of some sort of cortisol stimulant? It's driving me nuts!
Update next morning: I am sticking on 4.5 for now, after a bad night. I had plenty of time to think about the mechanism involved and wonder if it goes something like this: after natural cortisol production kicks in again, any drop in supplemental prednisolone is interpreted as a drop in cortisol and the response is to hike up cortisol production to "compensate". But overall, this results in a much higher than normal steroid level and the nasty symptoms of flushing, tachycardia, nausea etc are the result. So the solution is to hold the pred level steady for longer and reduce more slowly. The experiment continues....x
Production of cortisol is a very complicated feedback set-up - it involves the hypothalamus, pituitary and adrenal glands and a load of hormones and other substances.
(don't know your science background - it's probably gobbeldy gook to most people!)
So any change in one factor in it affects a load of others - and they swing around until they settle down again. I think of it as being like those circular swing things on children's playgrounds - if one child jumps off it rocks around until it finds its balance point again. It doesn't come to rest at all if one child after another jumps on or off - and it is much the same if you try to reduce pred too often or in too big a steps.
Thanks again PMRpro. That paper has some interesting nuggets; especially about how the different systems are attuned to different types of stress. It's prompted me to go looking for some more academic papers on the clinical applications.
Your problems are different to any I've heard of before but my experience with Pred over 3 years is to go slow when reducing. I was successful cutting back the higher doses but so far this year it has taken me 3 months to cut back from 5mg to 4.5mg. From May to August I'll be taking 4mg per day then August to November alternating 4mg/3mg each day.
I take my Pred at lunchtime mainly because I take a lot of meds at breakfast and supper time.
Thanks knitsandie. It's really useful to hear how others manage this, and your schedule may be much more realistic than my plan! If you don't mind saying, what symptoms do you have if you reduce too quickly? x
I have been so tired, I've fallen asleep easily during the day, lacking in energy, a feeling of being 'cold to the bone' and of nausea if I have reduced too quickly.
I've taken 5mg/4mg on alternate days for 3 months and had a little of the lack of energy for a week or so at first. Since last weeks rheum appointment I'm now taking 4mg each day for 3 months and if that goes ok I will take 4mg/3mg on alternate days for 3 months.
I am expecting some lack of energy for a while but as long as it's not too bad, I will continue to reduce.
i know that at my rate of reduction it will probably not be till the end of 2018 that I am at 1mg but that's fine with me if it gets my body producing its own cortisol. I have been taking Pred for 3 years after all.
Yeah, that's an admirable attitude. I guess I am still struggling to come to terms with everything that has happened since I became ill. I still have this self-image as a fit bloke who now just needs to stop these nasty drugs to get everything back to how it was before....#reality check....!
Whisperit I can identify with your last post re self image. Sometimes I look in the mirror & wonder who is standing in my room. It definitely is not Goldilocks who has slipped in, rather The Wicked Witch from The North, matching hairstyle & all ! Sometimes it is a real shock when I see my reflection, all my self delusions shattered in one fell swoop! At least vanity is a thing of the past & I can laugh when the little ones point out 'all those brown face spots in total horror'! Sorry Whisperit vanity is still there, I have in fact totally hijacked your post! Sorry!
Take Care of yourself & don't push too hard, best wishes X Pixiewixie
Thanks pixiewixie. I always thought the wicked witch of the north got a bad rap. My nose is so red and shiny I am a hiring myself out as Rudolph the Reindeer next Xmas. There's got to be a business idea in here somewhere - Lupy Lookalikes maybe? x
Thanks whisperit I laughed at such a unique business idea. i wonder how many here could sign up & whom would they represent?? As for Rudolph he is very popular .... just think of all your Christmas carrots & fairy dust. Anyway thanks for the 'cheer up'! Think reality check definitely needed!!
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.
