Like so many now I can't contact my GP very easily to talk things over and I need some advice. I've been diagnosed with GCA (18 months ago no re-curring symptoms after 40mg pred and reduced down to 4mg) but then PMR started up slowly and diagnosed last Feb then up to 7mg, didn't work went up to 10mg and divided into two 5mg am and pm which worked like a charm. Have been on 9.5mg for about 6 weeks, reducing by .5 in about 4 weeks now trying to go down by another.5 to 8.5 mg. I've felt really good up until this point but taking 5mg in the morning then 3.5 in the evening - I now feel horrible. Mainly low blood sugar symptoms and fatigue together with muscle weakness (was planting out bags of bulbs 3 days ago). My info sheet on pred withdrawal suggests this is what it is. Should I go back or grit my teeth and hope my system adjusts? Your kindly help is much needed.
Help! Is this pred withdrawal?: Like so many now I... - PMRGCAuk
Help! Is this pred withdrawal?
Could be withdrawal; my body was certainly more aware of drops at lower doses. Depending on how much Pred you actually absorb, it could also be your body feeling the lack of the natural cortisol replacement (Pred) because your adrenal glands are very sleepy still. It can be a transition stage where you aren’t getting quite enough but the adrenal function just isn’t there which can make one feel dreadful. It feels like you have nothing in the tank at all and I felt generally achey ( not stiff) and fluey. Late afternoon i would be weepy and soo tired. My long naps had to be reinstated and early morning rising was impossible. If I had really overcooked it I would feel nauseated, kidney area pain and a gut upset. Even an adrenaline rush from nearly falling over would make me jittery and tired for while. I had to reduce 0.5mg every 6-8 weeks and below 3mg it was even longer, sometimes 14 weeks.
Gosh! You have just described how I am feeling. I am on weekly injections of Tocilizumab and was advised to do a rapid Pred taper ( currently at 9 mgs) PMR then LVV/GCA diagnosis ( 4 months ago). I thought I would be insulated, tapering quickly from 40 mgs ( Pred side effects, concern). I honestly feel like death. Not sure what to do next.
Well I would imagine your body will still notice the drop in steroid even if the inflammatory IL6 is being kept at bay for you.
The question is, am I achieving anything by sticking with this regime? If I am, then I can handle it. Sparing the insidious effects of long term Prednisalone, I hope. How are you these days SnazzyD?
Oh dear, these situations with dog’s dinner symptoms are just appalling. By that I mean one has no clue what is what amongst some powerful agents and with no finish date for any of it, it is harder to bear. One feels dreadful but can’t easily pinpoint what it is, all the while worrying that one of those things might need urgent action because to leave it might be damaging. I’ve had a few of those times. In your case you’ve got Actemra, a white knuckle ride Pred reduction, possible infection, possible adrenal function issues, possible after effects of the cold thing and of course the autoimmune thing. If it were me I’d try to get a hang of whatever might seem most controllable. Now I’m not you, not your doc blah blah, but the thing that is the most controllable is the Pred and I’d be asking for a super slow drop through the adrenal waking phase. A symptom/activity/dosing diary is really useful in these periods where it feels like a Groundhog Day because patterns often emerge. Actemra holiday?? I did that with one of my cancer drugs once, but I was lucky the effects wore off quickly so it was easy to see its influence.
Me? Well, I’ve been on zero Pred since beginning of August. Currently having a minor dog’s dinner episode trying to work out what might be autoimmune, Covid effects from March (99% certain I had it) and possible reinfection 2 weeks ago (not as bad), a dip in adrenal function and possible inflammatory effects of my life long cyclical Neutropaenia every three weeks. I was doing so well before Covid hit, though I’m sure Pred saved my bacon then.
Was trying to get my haematologist and rheumy to entertain the idea of IL6 production during cyclical thing but they were interested but wanted to shunt it over to eachother.I feel so much better with no Pred in my system but am taking careful notes with a view to doing a trial of 0.5mg at strategic times. The Rheumy did at least ask for a scan of my axilliary arteries and temporal because I was suspicious of LVV early 2020, but there was a cockup and I only got the head. Ironically I think I got Covid during that scan last week in Feb - two docs standing over me for 45 mins and one said she just come back from holiday...Anyway, that’s the short of it. It’s a game innit?
It might be worth reminding Sarah that you have been on pred a LONG time. For new patients and, therefore, in the trial where all the patients were newly diagnosed the taper in 6 months was perfectly possible and easy becauses they'd not been on pred for long and so adrenal function was more likely to step up.
Adrenal function will only return in response to a low pred dose, there is no alternative to that, but you probably need to slow down. Some people get there at higher doses than others.
Oh dear, not good.....you are on the drug that was the other choice for me...and injection too......talking to nurse today, but you may have answered one of my questions about how fast to taper.....could you be tapering too fast possibly?......I would ring the nurse for advice if able to. My sister with RA had problems like yours, rang the nurse they stopped it......good luck, keep us posted.....
I found reading your post really helpful as I am in a similar position to yourself (I'm stuck on 9ml). Does anyone know if taking cortisol supplements is a good idea when struggling with Pred reduction?
Pred is a cortisol supplement, a very powerful one. The only way the adrenals learn to work is by taking away the Pred and ideally the brain realises this, tells the pituitary gland, also in the brain, to put out a hormone which then tells the adrenal gland down by your kidneys that it needs to make up the shortfall depending on the demands made of your body. The chain of events needs to work seamlessly and there is no easy fix, like a toddler learning to walk. The trick is doing it slowly enough that you don’t hit an adrenal crisis which can be a medical emergency but at the same time taking away its toddler’s walking aid in a way injuries are minor.
Having thought about your question about a supplement, if you mean something to stimulate the adrenal axis, I have no idea. Which bit of the chain do you tickle and by how much? If you suddenly get a large output of natural cortisol on top of Pred, does that mean you are effectively upping your dose that then shuts down your adrenal glands because it thinks it’s had got plenty.
Thanks. That's really helpful.
There are no supplements that stimulate adrenal function - whatever the supplement sales people say. Some that have appeared to work in the past were actually ground up bits of animal adrenal gland - but that isn't stimulation but potentially replacement. And the provenance??????
That sounds very dubious! I have no intention of taking cortisol, but as far as you are aware are there any supplements that should be avoided while suffering from PMR and taking Pred? Thanks
Depends what you call supplements I suppose. Most are useless - other than vit D and vit K2 which are useful. There are various things like echinacaea and others that are said to boost the immune system - last thing you need! Liquorice is supposed to be avoided.
Really check anything for interactions with anything you are given by the doctor - and ask here. If it is strong enough to have an effect, it is also strong enough to potentially cause problems.
Thanks for your reply. As well as calcium and vit D, I take magnesium, collagen, cod liver oil and pumpkin seed oil. Do you know if any of these should be avoided while on Pred?
I don't think there are any contraindications but whether they are useful is another matter. If you are taking cod liver oil plus anything else you do need to be sure you aren't taking more vit A and vit D than you need.
Yes you're right - I'll check it out. I'm just keen to do anything I can to counteract the affect that taking Pred long-term is having on my body.
Thanks for your reply. I'm still not sure what to do. I was on 10mg pred for 6 months without attempting any tapering and no symptoms at all - stiffness zero. OK down to 9mg going at snail's pace .5 every 6 weeks. It's a sudden reaction almost instantly as I go down to 8.5mg. I'm tempted to go back to 9mg but I'd like to know how and when to stagger downwards.
When you are ready - and not before. You keep trying to find out. But having only started at 10mg, you were never going to have as far to reduce as if you had started at 15mg. Most people would be pretty happy at 9mg at this stage.
I'd be more inclined to say it was doing too much with PMR at the same time as reducing below the dose you need to manage the inflammation and symptoms! It really is a rather different matter to GCA! You won't have noticed the PMR side while on GCA doses, now you are in the PMR realms you still need 9mg at present - you will get lower - just not yet!
Is it possible that, once under about 10mg, splitting the dose is not as effective as taking it all at once? I have always taken my dose between 1.00am and 3.00am (depending on when I wake up for a bathroom visit). This way, I feel good all day, and if I start to get exhausted or achey during the evening, a hot bath and an early night with 2 paracetamol works for me.
I have managed to avoid flares (now down to 3mg) by only reducing when my body feels up to it, not on any "schedule" (even DSNS-type plans suggest a fixed schedule for reducing). I got "stuck" at 7.5mg for 3 months and now seem to be stuck again on 3mg - I feel bad whenever I try 2.5mg, so am happy for now to stay at 3mg almost indefinitely.
Thanks. Yes I'd wondered about the split dose. A 5mg morning and 5mg at about 10.30pm really did the trick for 6 months, seemed to work fine 5mg/ 4mg but 5mg/ 3.5mg has caused instant reactions. I take your point about listening to the body -but I don't know what it's saying to me!
Ok here’s another thought, not that you need yet another, but still on adrenal matters. So, once the adrenal glands really need to start working the endocrinologists say the full dose needs to be taken in the morning. This is to allow a low or no level of Pred in the bloodstream come the night, when the main trigger happens for making cortisol for the morning. If you have none there, the message would be a strongest. Perhaps by splitting it, some of the dose is still about at night, so when cortisol hour comes round, the brain registers there is some so makes a half hearted effort. This is making the assumption that for you 8.5mg is actually quite a bit lower than for someone else who is absorbing more.
I found 10mg - 8mg not bad at all and I felt really excited to get back to normal life, then wham! At that point I was taking it pm (long story) and it wasn’t until I got to 4mg that I saw an Endo who then told me to change to am dosing. Who knows if my journey to that point would have been easier if I had gone to am dosing earlier, quite possibly but I was too scared to rock the boat anyway. My personal hunch was that I had to get out of what felt like a no man’s land of a dose and carry on going down. Once I got to 6mg after a missed summer of chronic fatigue and feeling fluey the clouds started to lift. From there it was much easier, not easy, but not the same misery. There was no way I could have done a job or had an active life, but then not everybody gets this as acutely.
Now this makes sense! I was worried about continuing the split dose so I'll try the whole dose in the morning. Strangely, after the diagnosis last year of GCA (no sign of PMR then but may have been suppressed by pred dose) I tapered by 1mg a month from 45mg right down to 4mg with no side effects apart from feeling progressively better and free from the horrible high-dose side effects. Thanks for the endo's info.
"even DSNS-type plans suggest a fixed schedule for reducing"
Not really - I always have emphasised that for some people you may need to stop at any point of any step. It isn't fixed in that you can start with 4 days between the new doses - or at 7 or, if necessary, even longer. And I also say you must listen to your body - it will tell you if it isn't ready.
Hi I am new to the forum but have found these discussions so helpful. I want to offer my own experience with tapering my doses of prednisone. I became so ill before PMR was diagnosed I could barely function or get out of bed. Once I found a rheumatologist he prescribed 20mg doses of prednisone. It was a miracle. We began to taper about 6 weeks later. It was hard to move from 20 to 15. I had symptoms again and felt awful. I found the following after much trial and error. I could not taper quickly. I had to come down .5 at a time. I had to take the prednisone in the morning to avoid sleep problems and get the best results. I had to stay on each reduced dosage for at least a month. In fact it took a year to go from 10 to 9. Moving very very slowly with reductions, always taking in the morning and believe it or not, strong caffeinated coffee for the first two weeks of reduction. For a while I had to go back to 10mg because my body just would not adjust but after a year of 10mg without reducing I tried again. This time it worked. I am now on 8 mg which is also hard. I am very very tired and even have shortness of breath and indigestion at first when I reduce each time as well as some minor pain. But eventually this does go away. I now know the difference between arthritis pain and PMR. It’s subtle but different. I hope this is some way helpful. This blog has certainly helped me. In summary; go slow, take in the morning, reduce in small increments, go back if after a month you are not improving, try caffein for short time when first reducing. Do not reduce again until you have adjusted and feel normal.
Thank you for this. I know that everyone reacts differently to tapering but it really helps to hear others' experiences. I'm persuaded now that I shouldn't split my pred dose and shall try tomorrow morning on 9mg.
I also forgot to mention that I take synthroid and my thyroid Med had to be adjusted as I taper down my prednisone. When I would taper down my heart would sometimes flutter and my sleep was interrupted as well as indigestion. But after my thyroid was adjusted it all evened out but it took at least a month.
I have reduced slowly, .5 at a time over the last 5 years. It took a long time to get below 10, but I am now going between 3 and 2.5. . Over the last few months I have felt myself fading away........energy wise that is not weight wise. I have a lot of new weird and wonderful symptoms which I did not really relate to pred, but maybe to another problem I have Fibromyalgia or Ehlers Danlos. Is it ok to go back to 5mg for a week to see if I improve, and if I do not improve, I can go back to 3mg ?
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