Symptoms when tapering from high dose Prednisone

[Sunburst001]

Kia ora. I’m keen to tap into the experience of others here about how tapering from high levels of Prednisone might be experienced in the body. I started 60mg Prednisone in early November 2024 for 4 weeks for GCA. At that point, I was given a textbook tapering schedule – 50mg for 2 wks, 40 mg 2wks, 30mg 2 weeks, 20mg 2 weeks, then some 2.5mg reductions to 10mg, and 1mg reductions down to zero.

Sounded all good – until I got started. Setting aside the various ASE’s that had popped up during the 4 weeks on 60mg, a whole new ballgame started on about Day 10 on 50mg. It felt like episodes of low blood sugar – weak and shaky, hollow feeling in stomach, blurry vision, fuzzy brain, hot flushes, bone wearying fatigue etc. (It turns out I had steroid induced diabetes so it was definitely NOT hypoglycaemia, it just felt like it). I even tried putting sugar in my tea and stuffing myself full of carbs (I’m usually on a KETO diet), but all to no avail.

It got way worse when I dropped to 40mg after that fortnight. I was pretty much horizontal from about 7am to 3pm – after which I started to feel more human. I was overseas (in Australia) and sought advice from a GP over there. She tested for all sorts of things and came to the conclusion that it must be some adverse reaction to reducing the dosage of Prednisone. She advised going back up to 50mg and holding until I got back to NZ and could get some home-based advice.

I definitely started to feel better once I’d gone back to 50mg. Absolutely nothing like my pre-Prednisone self, but I was functional again.

It has been a very muddled and frustrating journey since that time as the public system hasn’t been able to cater for my apparently outlier experiences. In order to get the best for my health I have now jumped ship to a private rheumatologist – thanking my lucky stars that I have the medical insurance and financial resources to do this.

The private rheumatologist said she hadn’t come across a patient quite like me (I’ve always seen myself as a special snowflake – now I have professional confirmation. ) I had been attributing the experience during that aborted taper as “Prednisone withdrawal symptoms”. She is of the view that this really isn’t a thing at such high dosages. This is much more likely at the lower levels when you are approaching levels of Prednisone that are closer to the levels your body is expecting, and would be produced if your HPA axis had come back from its overseas holiday,

Her view is that my experiences when tapering were most likely ASE’s from the high level of Prednisone that I was on.

But – why would things have improved when I went up to 50mg?

Is there such as thing as Prednisone Withdrawal Symptoms when you are on high doses?

While battling with the public system, I put myself on a much slower alternate day dosing regime (50mg one day, 45mg the next) and took about 2 months to get down to 40mg. (Was soundly scolded by nurses in the public system for this, but they had no reasonable alternative)

Not feeling great by any means, but I’m here. I’ve now taken a bold step and reduced to 35 mg this week. The rheumatologist also advised adding in Methotrexate as her view was that, given my experience so far, I was not going to get very far in tapering off the Prednisone without some support. I am now also on 20mg MTX as of this week.

And, to be completely clear, since the first week on 60mg Prednisone, I have had absolutely NO twinkle of any kind of recurrence of my original GCA symptoms. Not a hint. Zilch.

What are your thoughts about the symptoms that might kick in when doing a taper at those high levels? The internet has all sorts of ideas about this, but I’m really interested in hearing from people who have trodden that path.

Withdrawal symptoms – or just some more side effects of Prednisone?

Ngā mihi

[DorsetLady PMRGCAuk volunteer]

Is there such as thing as Prednisone Withdrawal Symptoms when you are on high doses?

Most definitely - I felt it on occasions at higher doses - I also had GCA.

As you say lack of knowledge from your medical team.. and there is absolute no point in reducing if symptoms return on a particular dose, it’s just bound to exacerbate the situation.. and to be honest I doubt you did yourself a lot of favours by reducing the alternate day system. It may have got you from 50mg to 40mg but we think it’s harder in the body.

Personal opinion, had you been allowed [known] to taper more slowly you would have managed it.. and there probably wouldn’t be a need to add in any other so called ‘steroid sparing drug’

As for -But – why would things have improved when I went up to 50mg?

Simple answer because that’s the dose your GCA required at that particular time - not the lower one you were previously on - so at too low a dose your body was complaining.

Your GCA is not cured just because you are on prednisone- all the drug does is control the inflammation caused by the underlying illness, and you have to learn to balance the dose in relation to how active your GCA is… Early days that’s more difficult because the Pred is fighting on 2 fronts - trying to get the built up inflammation pre diagnosis under control and mopping up the daily shedding of the substances [cytokines] that cause the inflammation/pain [as explained in my intro post attached to your previous post].

This link gives some info on whether a flare or steroid withdrawal symptoms -

healthunlocked.com/pmrgcauk...

.. and do have a look under FAQs [all in alphabetical order] for GCA stories etc

[Sunburst001 in reply to DorsetLady]

Thanks for that perspective and another helpful link.

I'm curious - why might an alternate day dosing approach (50g one day, 45mg the next....) be hard on my body? Is it harder than the approach that has a mix of new dose and old dose days over the course of a few weeks?

I'm also keen to explore your perspective that what I referred to as withdrawal symptoms were a recurrence of the GCA symptoms. My experience at 50mg and 40mg was completely different to my original experience in the weeks leading up to my diagnosis and start of Prednisone treatment.

From reading others' stories I think I was extremely lucky and got off quite lightly. I had a tenderness at my right temple, which gradually led to R TMJ pain, jaw pain, restricted jaw opening, tongue claudication. The temporal artery became palpable - like a juicy fat worm with nodules. The level of overall pain was only medium. No scalp pain or headaches. I felt generally quite well.

After tests in Australia showed my ESR was normal, I attributed the issues to my TMJ. I've had two arthrocentesis procedures on my L TMJ and the right one was beginning to line up for some attention - I even had a procedure booked with a maxillary facial surgeon. The inability to chew led me to my own GP who decided to test my CRP - it was 36. That led to an urgent referral to local public hospital Rheumatology Unit who saw me super quickly, did some doppler imaging and popped me on 60mg prednisone. They sent me out the door then with no patient information and inadequate monitoring.

I did have a temporal artery biopsy which was negative (I did note they only took a 5mm section). However, based on symptoms and response to Prednisone they decided to continue treatment with a GCA diagnosis. So - lucky in that the whole journey from first noticing the tenderness to getting treatment was less than 6 weeks - and with no significant pain.

I certainly didn't have any of the weak and shaky feelings, hollow feeling in stomach, blurry vision, fuzzy brain, hot flushes, bone wearying fatigue etc that started on Day 10 at 50mg.

Are you thinking that those are symptoms of GCA breaking through? Even though I had nothing like that prior to treatment?

Noho ora mai

[DorsetLady PMRGCAuk volunteer in reply to DorsetLady]

Like a few more on here, not a fan of the alternate day of reducing.

Some Rheumies seem to like the alternate day approach - and it is mentioned in some guidelines.

But as I’ve said many a time, some of us think it is harder on the body….and not sure how it really helps the patient. You are up one day, down the next -whereas with a slower taper the lower dose is introduced more gradually -and was originally designed because smaller doses weren’t readily available… or people hadn’t thought about cutting tablets.

At least when you are reducing using a slower taper that we advocate when you start at day 1 you are on higher dose and end the period [say day 28] you are on the lower dose… with the alternate day you are in the same position on days 27&28 than you were on days 1&2.

To me that doesn’t seem like progress… but perhaps I’m missing something!

As for TAB they do only take a very small sample - that’s standard procedure - and very often does give a false negative result, so you aren’t alone in that… but as we always say symptoms should still be treated at GCA.

The issues you mention following drop to 50mg could be the Pred, or the GCA grumbling, or I would hazard a guess at more likely a combination of both… sometimes it’s very difficult to know what is to blame. Pre certainly can cause blurry eyes, and maybe the shaky feeling it’s is a powerful drugs- and it takes the body a while to get used to it [or it being withdrawn]. Fatigue, fuzzy brain [aka brain fog] can be signs of any autoimmune disease, and hot flushes can be attributed to both the illness and the drug.

see this from another a/i forum but applicable to any similar illness -

lupus.org/resources/lupus-a...

And this from another member a few years ago-

healthunlocked.com/pmrgcauk....

[Sunburst001 in reply to DorsetLady]

Thank you Dorset Lady. Gradually appreciating (but not liking 😉) the complexity of this situation. I tend to think that at 50mg and 40mg it would be unlikely to be a flare. More likely to be something related to the Prednisone. While I'm driven to greater understanding of what's causing what, I'm not sure at the moment that it would change the current course of action - ie a much slower taper on Prednisone - and see how it goes. Ngā mihi

[DorsetLady PMRGCAuk volunteer in reply to Sunburst001]

Unfortunately studies show that approx a quarter of patients with GCA are likely to flare within the first 12 months. This link gives a lot of info - but doesn’t seem to acknowledge at the simplest way to stop that happening is not to employ too quick a taper.. 🤦🏻‍♀️

pmc.ncbi.nlm.nih.gov/articl....

[SnazzyD]

Well I had withdrawal symptoms even on those doses. I felt quite fluey for a few days. I also reacted to Pred in that a couple of hours after taking (uncoated Pred) I felt weak, drunk, sweaty, panicky, wobbly and downright weird. A bit like a hypo. It was so bad for a few of hours each time that I took it at bedtime so I could sleep through that bit before the Pred whizz kicked in and woke me few hours later.

My take on your ‘low blood sugar’ and diabetic levels is that you had both. The Pred forces the liver to break down glycogen to make glucose which raises your blood level. Your body puts out an insulin spurt to combat it so your sugars drop and you feel hypo. This is before you eat anything so add in and carbs you cause another spike and your insulin shoots up again to give you another low. You can end up on a rollercoaster blood sugar train and it can feel an awful, plus you end up piling on weight. This can lead to apparent diabetes because your blood glucose looks permanently high. Healthy eating isn’t enough and many of us have to cut carbs strictly, particularly on high doses. The same happened to me and once I cut out carbs severely (not keto) although I felt ravenous I didn’t get that horrible hypo feeling all the time. Some need a few more carbs than others but on the whole it’s less than you expect but refined carbs are an absolute no no. It does settle as the dose goes down and some have managed to reverse this ‘diabetes’ eating like this. Some do end up diabetic because it has ended up with either insulin resistance or an inability to produce insulin adequately after so long with induced high blood sugar.

[Sunburst001 in reply to SnazzyD]

Hi Snazzy. Thanks for those insights. Interesting that you use the term "withdrawal symptoms" when describing your experience at those higher doses - you mention feeling fluey for a few days. Did that fade away until you took your next tapering drop? Your experience in the few hours after taking the Pred sounds totally unpleasant.

I've been really interested in measuring my BGL since discovering I had diabetes. I'm only just over the line in being diagnosed and now on Metformin. I'm not required to be taking BGL readings, but I'm something of a nerd and love being my own lab rate, creating spreadsheets and generating graphs. May as well turn this thing into a project and have some fun.😉 I'm now using a constant glucose monitor (CGM) which sends readings to an App on my phone and produces all the graphs a girl can want.

From that, it's very clear that I'm not at all hypoglycemic - I just feel that way and find it handy to use that as a way of describing to people how I'm feeling. It's pretty much constant from about 6am through to 4pm which coincidentally lines up with the period during which my BGL goes through an elevated cycle. It's also (I think) roughly similar to the period in which your own cortisol levels would naturally be their highest. I'm wondering if that has a link to while I feel at my worst during that time as I taper down.

I barely eat carbs - and it's been that way for about 20 years. Would be less than 50g a day. Never eat anything that actually looks like a carb - bread, rice, pasta etc. All my carbs come from vegetables. I rarely, if ever, eat fruit. I have worked with a dietician and we came to the conclusion that there was nothing I could do to control the BGL with my diet. My body seems to be able to generate high BGLs out of thin air. 😉

Every best wish

[Viveka in reply to Sunburst001]

People on the forum have used CGMs to monitor pred-related glucose spikes. We found that during the day when the pred is most active the spikes were worse, but towards the evening they improved. (Though when I tried this on levels above 9mg it didn't apply). This corresponds roughly to the cycle you mention above - though 6 am would be before pred, I guess.

[Sunburst001 in reply to Viveka]

Yes - indeedy. I started wearing a CGM last week and it's given me hours of fun! I do have a reasonably gentle upward and then downward curve from breakfast time to dinner time. I probalby take Pred about 6am and breakfast at about 6.30 - 7.00. I have spotted some other threads on BGL and will have a good read when I've got a bit more time. Ngā mihi

[SnazzyD in reply to Sunburst001]

Ha ha, there’s plenty of people who carry out nerdulant activities here! Like you say, one may as well have some ‘fun’ 🙂. If you search on words around blood glucose or monitoring here you will find others’ results. There are a few with patches.

Cortisol is highest in the early morning having reached a nadir roughly around midnight that triggers the adrenal axis to crank up the process.

[Sunburst001 in reply to SnazzyD]

Thank you - yes I caught a glimpse of those threads and will digest when I have more time. Noho ora mai ra

[Obscureclouds]

sounds like you were put on the same tapering regime as me. Thanks to Pred I was feeling really great and so full of energy until I hit the 30 down to 20 taper. I had the blurry vision, hot flushes and extreme fatigue but as these were my initial symptoms before diagnosis of GCA/LVV I put it down to them returning so upped my Pred to 25 for a week and began a lower taper by alternating days and then two or 3 days of the lower dose. It took a while to get back on track physically. When I saw my consultant in January he was pushing me to go onto MTX which I decided wasn’t for me at this stage. However when I was l looking into MTX as a sparing agent for LVV on line I came across comments that tapering for GCA/LVV was best done keeping to a regular daily dose so I asked the GP pharmacist to prescribe 1mg Pred as well so that I could have greater control over my gradual taper. I’m on 12 mg now and due to taper to 10 in April but will go to 11mg first. I’ve also bought a pill cutter so that I can reduce/increase by 0.5mg if necessary. As for what symptoms I might expect, I anticipate that if the Pred dose is too low for what my body currently needs it could be a return of any of my original symptoms which as well as those mentioned above included jaw ache and clicking in my head. I never had any headaches or muscle/joint aches and pains but I also consider they may also occur at some point. Unfortunately, I’ve come to realise you never know with this funny old illness. Good luck

[SnazzyD in reply to Obscureclouds]

I was a great fan of smoothing out the dose drop staircase too. So much less traumatic on the body providing the dose is adequate for the illness itself.

[Sunburst001 in reply to Obscureclouds]

Hi there. Your comment "you never know...." resonates with me. I've come to see after reading people's experiences that the GCA and treatment protocols are not a "one size fits all" world at all. So many variations and differences.

Interesting that the blurry vision, hot flushes and fatigue were part of your initial symptoms of GCA. I didn't have anything like that, so it hasn't ever occurred to me that what I'm experiencing might be GCA poking it's head through. Something to ponder on....

I also have a pill cutter which I've used when tapering off unrelated medications. Such a handy thing - although it does make the bedroom look like some kind of drugs lab!

All the best

[spoof99]

I have been on Pred since the end of January started at 60 and now on the same taper as you. I have been at 40 since last week, going to 30 next week...I haven`t noticed any negatives yet if anything I feel a little better!

[Sunburst001 in reply to spoof99]

That is such a good news story! And more evidence that this is not a "one size fits all" kind of experience. Do you have any secrets to share? Seriously - did you do anything to support your body to handle the Prednisone at those higher doses?

Ngā mihi

[spoof99 in reply to Sunburst001]

No I didn`t do anything special, I have learned much about PMR and GCA in my short time here and the biggest takeaway is that there is no one size fits all with this illness the range of symptoms or lack there of is mind boggling no wonder it`s a tough diagnosis!

[Sunburst001 in reply to spoof99]

Thank you. May it be onwards and upwards….. 🌺🍀🌺

[Obscureclouds in reply to spoof99]

In case you didn’t read my post above take care if you are planning to go from 30 to 20mg in one hit. At 30 mg I felt great could walk 5 miles and a lot more with no problems and do 4 Aqua fit classes per week with no after effects. Still waking up very early so some days I’d be up from 4am and still feel full of energy at 11 pm. I know that was down to the Pred. I had repeatedly asked for advice from Rheumatology about the ongoing rate of reduction with no response so it was against my better judgement that I did the drop to 20mg and got hit with extreme fatigue etc. Good luck

[spoof99 in reply to Obscureclouds]

Yes I did see your post and will be very careful at the 30 level....

[Viveka]

You are grappling with the tricky issue of what is pred and what is GCA. At high doses, pred is a likely culprit. It can knock you off your feet or make you feel great (short term euphoria). All the symptoms you describe could be the impact of pred on your system. Also there could easily be no rhyme or reason to it. 50 might have that effect one time, another time it wouldn't.

They could also have been GCA not being under control although personally I would be looking for more defined GCA symptoms. However these are not necessarily the ones that brought you to the docs in the first place. In my case they completely changed over time. I went to the docs (after first covid vacc) with mild headache, flu-type feeling and TA swelling. Over time at various flares the symptoms are now flu feeling and the range of classic scalp symptoms.

The suggestion I have for everyone is to keep a symptom diary to understand the patterns and how they may change and also when things are random. X

[spoof99 in reply to Viveka]

interestingly I feel like I am sick this morning, like a head cold, sore throat....

[Viveka in reply to spoof99]

Hi spoof, just for clarification in GCA it's DRY symptoms eg shivery, weak, shaky but not sore throat, coughing or blowing nose etc. Not everyone gets them, but plenty do and I find they are one of the worse aspects of a flare. (Perhaps you're getting a cold, hope not.)

[Sunburst001 in reply to Viveka]

"No rhyme or reason"......another handy phrase to keep up my sleeve. Yes, I do keep a daily log of medication taken and symptoms or anything else that's happened that might influence how I'm feeling. Over even a few months I have seen things come and go......... Very random.

[spoof99]

probabably just a cold....👍

[Sharitone]

Two-weekly reductions may have been the taper in your rheumy's textbook, but my rate of reduction was at half the speed - 10mg every 4weeks down to 30mg, then 25mg for 4 weeks etc. I don't think I had any withdrawal effects, but I did get side effects that I hadn't had previously on a moderate dose of pred, eg teeth very sensitive to hot, which has unfortunately stayed with me. Also sleep difficulties, which are only now, after 4 yrs, slowly improving.

[Sunburst001 in reply to Sharitone]

Ah - the teeth! Mine are super sensitive to cold. If I have anything like a salad for lunch I'm reaching for the Panadol. Have you found anything that helps - apart from toothpaste for sensitive teeth? My dentist was not particularly helpful.

[Sharitone in reply to Sunburst001]

Sadly, no. My dentist could also not help much. He thought it was nerve damage, rather than enamel or calcium problems. The most helpful toothpaste I have found is Sensodyne Pronamel Intensive Enamel Repair - I don't know whether that it available in NZ. It also seems to help a bit to take magnesium tablets. You can find sites online where it says that calcium needs magnesium to be at its most useful.

[PMRpro Ambassador in reply to Sharitone]

That was the only toothpaste that worked for me. None of the others did.

It is a known steroid effect

sciencedirect.com/science/a....

[Sharitone in reply to PMRpro]

Thanks, I think my dentist would be interested in that. Shame it doesn't offer any solutions! I'm also bothered by the fact that mine seems to have got worse recently. Maybe climactic variations also influence the degree of neurogenic inflammation. Also, when I came off pred for a few months 2 years ago, the pain did not clear up. I would give a lot to relieve it!

[Sunburst001 in reply to Sharitone]

Thank you. I have found a local supplier and ordered a tube. Fingers crossed. 🤞

[Grammy80]

I cannot add to the great advice you have already received. I was dx with GCA in 2019 and have been on the ride you are now taking. At this point I am taking 8mg plus continuing the Actemra I have been on since the fall of 2019. When I get to 5 mg...I'll be staying on that for the duration, I'm 84 and want to feel well and not worry about my sight...two specialists agree. We are all unique and that is why you should trust what your body is messaging.

Your body, your symptoms are the truest guide. Whenever I reduced, I always stayed on the lower dose for one month. I've been on low dose, back to 60mg and started the trip all over again. My quality of life is what I have fought for and don't care how much I am taking. I too now have steroid induced diabetes but feel happy that it is just the steroids and my pancreas is functioning well. My A1c is now 5.6 (States) which is lower than what my Doctor would find acceptable.

Listen to your body....doctors cannot always 'see' what the disease is doing...but your body will tell you. The slow and patient route is the best...I wish you the best and being on this forum truly saved me from getting depressed. You know you aren't alone, my very best to you.💞

[Sunburst001 in reply to Grammy80]

Hi Grammy80. Thank you - very wise counsel around listening to my own body and what it’s telling me. I’ve read your profile - goodness, what a journey you’ve been on. I like the way you describe yourself as a ‘gal’ - puts me in mind of a feisty sort of woman, which I think you are. Quality of life is a phrase I’ve seen you use several times in your writing. I’m 67 and still working full time. I call it my transition job. In New Zealand you can retire and get a universal aged pension at 65. I’m fortunate to no longer have staff responsibilities - I’m basically a spreadsheet queen amusing myself in the back room while others run around in ever decreasing circles. I have previously been in much more demanding CEO roles so really appreciate the almost zero stress nature of what I do now. And - a flexible situation in which I can often work from home rather than commuting into the city. But - I am finding that working is extracting a price - there’s a mental and physical load that takes its toll. As I was coming home from the city on Tuesday I started asking myself why on earth was I doing this? Clearly it was not delivering quality of life. Quite the opposite. Now a plan is forming………. Ngā mihi

List of the real luxuries in life

[Grammy80 in reply to Sunburst001]

I couldn't agree more....real luxuries are prescious and available at no cost. I'm hopeful that your plan forms and becomes action. Many on the forum learn that being good to themsleves is a huge positive step. I looked up your sign off.....best wishes to you also.