Prednisolone withdrawal: I’m slowly withdrawing... - PMRGCAuk

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Prednisolone withdrawal

Nosmell profile image
Nosmell

I’m slowly withdrawing from prednisolone, now down to 4mg - and this week I’ve been hit with depression and fatigue. Has anyone else experienced this? Thanks.

55 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Have a look at this post on adrenal glands, might explain why you are feeling like you are - healthunlocked.com/pmrgcauk...

Nosmell profile image
Nosmell in reply to DorsetLady

That’s a very good article - it’s starting to make sense, which is a relief. x

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Nosmell

Yes it always helps, if you know why something is happening....and it’s not just you.

The previous year we’ve had aside, you may well have the effects of sluggish adrenal function. It can make you vile physically and mentally. As you’ve been on higher doses the adrenal glands haven’t had to work so they switch off. Once you are below around 7mg you really need to to start doing something to make up for the shortfall of the artificial cortisol (Pred). Often they take a while to do this. I remember at 10mg feeling pretty darned good but then the low doses made me feel empty, exhausted, emotionally all over the shop, weak and unable to deal with much. You need cortisol to get you through everything from normal daily life, stress, illness, shock, so too little can be at best feeling tired to at worst life threatening. The idea now is to reduce very slowly so that you don’t overdo it and get the adrenal glands working at their own speed which can be weeks, months or longer or never. One of the volunteers has recently done a bit about all things adrenal which I can’t find. Until she posts it for you try this about Secondary (not primary!) adrenal insufficiency. patient.info/doctor/adrenal...

PMRpro profile image
PMRproAmbassador in reply to SnazzyD

Isn't the link in the FAQs post?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to SnazzyD

Hi, I did link it.......🌸

SnazzyD profile image
SnazzyD in reply to DorsetLady

Yes but doofus here didn’t think to look in FAQ’s but looked for the title in the list on the right. I know now.

Nosmell profile image
Nosmell in reply to SnazzyD

Many thanks! The link explains everything - I find that problems become a bit easier, once I understand what’s happening. Take care and thank you again. x

SnazzyD profile image
SnazzyD in reply to Nosmell

Indeed but it does come as a disappointment when one is lead to believe that once under 10mg it’s all unicorns and fluffy clouds. My Rheumy told me I should be “feeling human” by then.

PMRpro profile image
PMRproAmbassador

It is a common effect of poor adrenal function. The adrenals stop producing cortisol while you are at pred doses above about 8-10mg. That has to start up again but it can take some time as you reduce the pred dose slowly. In the meantime - you can feel quite rubbish ...

If you are anything like me you have been hit by the deathly fatigue caused by your adrenal glands having to start working for their living again. I found not to reduce any more while you have the fatigue. I must admit I did go up 1mg as it was getting intolerable. It is not a good idea to increase unless you have to, as you will only have to go though it again when you decrease I found.

Nosmell profile image
Nosmell in reply to piglette

Thanks so much, Piglette.... that’s very reassuring. I have taken an extra mg today and will do that for a while.... then I’ll take alternate days of 5mg/4mg. I have MS which has a fatigue all of its own (and I felt so much better on higher Preds!) I’ve been Googling adrenal info, but will definitely look at your link. Take care - onwards and upwards. x

piglette profile image
piglette in reply to Nosmell

Hope it all goes well, with MS as well that is uphill.

Nosmell profile image
Nosmell in reply to piglette

Sorry - not thinking straight (as usual) as I thanked you for a link, which someone else posted. This is a very helpful site. x

The fatigue and depression are very real issues - especially the depression . Doctors often refuse to acknowledge it saying it is not known at such small doses . But it DOES happen . According to my spouse I have been aggressive and violent at 6 mg though I do not recollect it that way at all ....... Please reduce very slowly and most important is to take feedback from those around you in terms of whether they find anything amiss in your responses . Learn to accept that feedback because in all reality it could be true. Also try to read and obtain positive reinforcement in a pointed manner to remain calm and positive . Remember this IS a passing phase and you will cross these treacherous waters eventually .

Just make sure that you keep the relationships important to you close to your heart and draw energy and support from them ...... All the best and you WILL manage to cross this phase .

Nosmell profile image
Nosmell in reply to Iwillwin123

Thank you so much. I have a lovely husband - he understands me, and I him! The fatigue and depression have knocked me sideways. How long have you been trying to withdraw? x

Iwillwin123 profile image
Iwillwin123 in reply to Nosmell

Have been oscillating at 4 mg / 3.5 mg with flares coming up repeatedly for 6 months now. Started at 60 mg and tapering since 2018 .

Nosmell profile image
Nosmell in reply to Iwillwin123

You’re on a very long road....I do hope flares slow down - then disappear. Take care. x

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Iwillwin123

As an ex GCA patient, my comment would be you are at too low dose....and the fact that you have been flaring on and off for 6 months confirms that (sorry if that’s not what you want to hear). 60mg to 3.5mg within 3 years is quick (despite what doctors think).

Reductions early days on GCA doses are easy, lower doses not so...

as I’ve said many times, it took me almost as long to get from 10mg to zero, as it it to get from 80mg to 10mg.

PMRpro profile image
PMRproAmbassador in reply to Iwillwin123

That's your body telling you that you have reached your destination: the lowest dose that manages the symptoms. The more often it happens the harder it will get - if 4mg is enough, stay there, if not, go back to 5mg for a few months before trying again. It will happen when you are ready

Fatigue and sometimes depression at the beginning of each 0.5 reduction , currently back at 4mg after not managing on 3.5. No actual pain but weakness in my legs, arms and hands. Everything is such an effort so yes like Iwillwin I have been told that I’m being aggressive when I’m not meaning to be. We plod on together on here 😌

PMRpro profile image
PMRproAmbassador in reply to Bridge31

Just tell them it's the steroids ... ;) 'Roid rage!

Snerd profile image
Snerd in reply to PMRpro

Hahahaaaa!

Thelmarina profile image
Thelmarina in reply to PMRpro

😂😂😂

Absolutely totally uncharacteristically for me. It's scarry. I was however feeling physically okay so continued tapering slowly. I came off pred altogether after 10 months I am 7 weeks in to zero pred and feeling much better. I am prepared for a flare up but it hasn't happened yet. Good luck

Morning nosmell

I’m the same as you: currently on 4mg, on my way to 3. And so fas so good.

The last time I was tapering I got down to 2 and then felt really unwell; tired, lifeless, etc, and the gp cranked me back up to 15 (even though I had no PMR pain!). He said I probably reduced too quickly.

However, a following blood test showed my sodium level to be low. Once I increased my sodium intake I felt normal again. So I’m so hoping that this time the lower dose Pred I get to, that I’m okay.

Maybe it’s just a generally tiring week for you? Maybe get your gp to run some blood tests?

It’s all such a journey, is it it?

Nosmell profile image
Nosmell in reply to Doraflora

Thanks so much, Doraflora! Your experience is very similar to mine! No pain, just 🙃! The best of luck 🤞.... I’m up to 4 now again - and a blood test is an excellent idea. We’re in this together! x ❤️

Doraflora profile image
Doraflora in reply to Nosmell

Onwards and upwards!

Btw: I asked for a blue steroid card today, which apparently we should carry with us. No one at my surgery had told me this🙄

Nosmell profile image
Nosmell in reply to Doraflora

I’ve never been offered one, either, Doraflora! 🥴❤️

PMRpro profile image
PMRproAmbassador in reply to Doraflora

The blue one is outdated - new one to downlad:

addisonsdisease.org.uk/news...

Doraflora profile image
Doraflora in reply to PMRpro

Thanks for that, PMRpro. But You think our surgery would know about this one? 🤔

PMRpro profile image
PMRproAmbassador in reply to Doraflora

They are supposed to - a directive was issued in August 2020:

england.nhs.uk/2020/08/ster...

"Failure to take the actions required under any National Patient Safety Alert may lead to CQC taking regulatory action."

Sorry to tell you that I am down to 2mg and feel just as you do. It is a hard road to walk. This morning, I forced myself to take Lily,dog, to park for an hour. I sat for about 10 minutes, but walked very slowly the rest of the time. I know it is god for me to go outdoors walk and even chat with some others who had their dogs there. The dogs can run free, so don't have to constantly pull on a leash. The river and the birds are real treat. Last week I saw 4 swans, very unusual. It will gradually get better for all of us, until then be strong, rest when you must and do some sort of exercise. :)

Nosmell profile image
Nosmell in reply to Noosat

I hope you’re “regulated” very soon. My MS restricts exercise, sadly. Thanks so much for your reply. xx

Doraflora profile image
Doraflora in reply to Nosmell

Oh, I’m so sorry to read about the MS, Nosmell. That’s a double whammy for you.

I don't remember depression as such but I do recall that 4 mg was for me physically a difficult time. That was the stage when I felt like I was walking through treacle, for example. I think there are a number of stages we all experience, although perhaps at different doses, and 4 mg does seem to be one of those places where a lot of people begin to feel different and not as well. As the others have said, give those adrenals time to start working, and cut yourself some slack if you simply cannot do some things. It does get better!

Nosmell profile image
Nosmell in reply to HeronNS

Thanks so much - I’m not the most patient person! Take care.

Thanks so much - I’m not the most patient person! Take care.

I started out at 8mg, went down to 7mg two weeks later with very little impact then reduced to 6mg this week. Result was I awoke with uncontrollable shaking, feeling really awful for a lot of the day better but tired by the pm. Slept great last night but have been freezing cold and shaking for about an hour. It seems to be debating but every day for the next two weeks??? And then what happens when I reduce to 5mg? The prospect is scary. Doctor is only available by phone and when he has time. Anyone else had similar symptoms? Is a case of bite the bullet and live through a relatively short time? Trouble is you know it's hanging over your head. Love going to bed (so warm and comfy), dread the morning.

Thelmarina profile image
Thelmarina in reply to penstress

From what I’ve read here reducing very slowly, half a milligram at a time using the slow method of reduction is all important at this stage. It gives the adrenals a chance to revive! Good luck 🌺

Nosmell profile image
Nosmell in reply to Thelmarina

How do I break such tiny tablets, to achieve half a mg? It sounds like a very good method, though. x

PMRpro profile image
PMRproAmbassador in reply to Nosmell

Pharmacies (and online) sell pill cutters - you get the hang of it. Mind you they do vary - OH and I both have the same make. I do fine with mine, can't use his for toffee!!

Nosmell profile image
Nosmell in reply to PMRpro

I will do some research! Thank you. x

Thelmarina profile image
Thelmarina in reply to Nosmell

Pill cutters - also I use my thumbnail 😀

PMRpro profile image
PMRproAmbassador in reply to penstress

Slow down - 1mg overnight at this level is a lot. 1/2mg at a time, and using ne of the slowed tapers will help make it feel less uncomfortable.

HeronNS profile image
HeronNS in reply to penstress

Because you are now entering the place where your adrenal glands have to start producing cortisol again you have to keep two things in mind. One is, of course, the PMR symptoms. But the other is having to allow adrenals time to get back up to speed. Just as a comparison, I got to 7 from 15 in approximately seven months. By the end of the first year I had just got to 3 but it took nearly another whole year to get to 2! And, btw, that seems with some ups and downs to have been my "lowest best dose" for about five years! Fortunately at these lower doses any side effects become much less troublesome and pred is generally viewed as being quite safe for long term use when low dose. Don't let your doctor rush you!

I know just what you're talking about! I'm working my way from 3.5 mg down to 3.0. Much of the time I don't have my old PMR stiffness in my hips, but I have the Deathly Fatigue that others have described.

I've been tapering slowly, and this is the first time I've been able to get down to such low levels of pred. I'm so glad that I can finally reduce my medicine, but the tiredness often makes it hard to appreciate. The article by Dorset Lady is very helpful. It sounds like we just have to struggle through this phase and hopefully the adrenal glands will finally start working better.

everyone's comments are so good to hear as i slide from 7 to 6 next week. i am tired most days. morning are best for me. Understanding what is happening and "going with it" has been a big psychological lift for me. Keep the feedback coming everyone.

Nosmell profile image
Nosmell in reply to Carver63

Yes - this group is superb. I hope withdrawing becomes easier for you. 🦋

HeronNS profile image
HeronNS in reply to Carver63

And if you find it difficult do try the half mg drop using Dead Slow Nearly Stop method. When I was tapering at about the level you are now I was using a modified form of DSNS method. In the very middle there's a day when you have one day old dose, one day new dose. I would repeat that day, but by making my old dose the current new dose, and my new dose would be a half mg less. So one day 7 mg, one day 6.5 mg (having been tapering to that point for a couple of weeks). Then the next day, one day old dose 6.5, followed by one day new dose, 6 mg. At that point I left the 7 mg dose behind and it was 6.5 tapering to 6. This allowed me to get the full 1 mg taper in the month or six weeks. At some point, and I can't quite remember when, but it might have been about 5 mg, I only tapered .5 for the full amount of time with no little fiddle in the middle! One of the sayings we use: "The lower the slower". It's always tempting when tapering is going well to drop a lttle faster. After all, what difference can it make, it's such a tiny dose? Actually even half a mg can make all the difference, and some people are even sensitive to quarter mg changes!

Nosmell profile image
Nosmell in reply to HeronNS

That’s very good advice - thanks so much. It’s all such a fine balance, isn’t it? x

HeronNS profile image
HeronNS in reply to Nosmell

We will all be experts in at least one tiny aspect of biochemistry!

Nosmell profile image
Nosmell in reply to HeronNS

Absolutely! Can you recommend the best pill cutter for tiny tablets?! xx

HeronNS profile image
HeronNS in reply to Nosmell

I asked at my pharmacy, expecting to buy one, and was given a free one (with a drug company logo on it, long since worn off). It works fine. I think it's one of those things the simpler the better. It took a while to learn to use it as at first I would end up with a half and a pile of crumbs. Then discovered if I held the pill cutter in the air, rather than resting on the counter, somehow the reduction in vibration (I presume) allowed two fairly accurate halves to be produced. I've used it a lot since first getting it in 2015.

Thanks so much! I will certainly buy one! It’s all a process of learning for us all! Take care. x

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