Hi,
I was diagnosed with GCA in June by my GP due to headaches and very high blood test results. I was initially on 40mg prednisone then reduced to 30mg reduced again to 20mg. I have just reduced again to 17.5mg for one month. I have lots of back pain and generally feeling really unwell just wondering if this is normal.
I would say not unusual for the reduction regime you’ve been following …. which most would say is much too quickly.
5mg a time rather than 10mg would have been more sensible down to 25mg, then 2.5mg - but it’s done now.
Trouble is when you are reducing in too big a step, you aren’t sure what dose is right for your illness.
If you were okay at 20mg, then probably a good idea to go back to that -and get things back under control-hopefully it will be enough. If not, you may a bit more.
Once you find the dose that gives relief -then stay there for a month, and then reduce in smaller steps -usual advice is not more that 10% of current dose -so maybe 2.5mg if in 20s and upper teens, but then 1mg (or if you only have 2.5mg tablets then halve them to give 1.25mg).
Also have a read of this for general info -
Hi Lynlea and welcome 😊
I agree with DorsetLady, this sounds a rather fast reduction. I was also on 40mg for GCA and the doctor had me reduce 40 - 30 - 25 -20 - 17.5 -15. I found this well fast enough!
As regards feeling unwell, this may be because of steroid withdrawal, or you may need a higher dose at the moment. As it’s early days, I would definitely go back up to 20mg for a while as DorsetLady suggests. You are looking for the lowest dose on which you feel well, which is always a bit of an experiment…..only you know what your body needs and at the moment that seems to be more than 17.5mg.
Good luck and let us know how you get on xx
I can really sympathise and suspect, like me, you may have been tapered a little too fast. My sympathies when it ends up making you feel lousy – from personal experience it's miserable!
After 2 years of PMR, I was diagnosed with GCA around the same time as you and initially prescribed UV pred for 3 days, followed by 50mg per day for 4 weeks. The rheumie then wanted me to taper every 2 weeks 50 – 40 – 30 – 25mg. Which I did, but by the time I got to 25mg I was feeling distinctly unwell (massively fatigued, weak, wobbly, lightheaded, spaced out and just generally really "off") and had the gradual return of various little GCA niggles and some muscle/joint pain that were uncomfortable but didn't seem to get any worse as I reduced.
She wanted me to continue dropping by 10% (or as close as I can get to 10%) every 2 weeks, but after a few days I was barely functioning at 22.5mg, so (based on excellent advice from forum members here), I requested I stay at 25mg for a few more weeks to see if my system might "catch up" and level out a bit. Which it seems to have done. I still don't feel wonderful, but not quite as wiped out and a waste of space as as before.
I dropped to 22.5mg a few days ago and so far, not too bad. I will do 4 weeks at each dose before dropping again. We agreed it's better not to flare and get into a yo-yo situation, but my rheumie is concerned about my cumulative dose of pred (around 14gm over 2 years) and the associated risk factors that entails. It's definitely a balancing act to keep pushing the envelope gently to get lower versus pacing the disease reduction (hopefully it's reducing too!) and not flaring. As I gather from other info on the forum here, flaring is quite common in GCA, particularly in the first 12-18 months.
Hope you're able to sort out your dosage and get back to feeling a bit better very soon.
Thanks for your response just feeling a bit lousy at the moment, awake every morning at 4.30 and all the side effects from steroids and omeprazole.
Oh I can definitely relate to the sleep issues and other side effects for sure. You really do have my sympathies. Not fun one little bit.
Intellectually I understand that my system is taking a hammering at the moment with the GCA and the steroids, and so feeling "not right" is to be expected. However, that doesn't usually help me feel any cheerier when I'm having an "off" day (which is most of them). Lots of "I want my Mum" days for sure… Hugs.
You could ask to try a different stomach protection med - another PPI or an H2 antagonist such as famotidine might help.
I have asked for a different stomach protection been prescribed pantoprazole will see how I get on with it.
Hi you said you were diagnosed by Gp , have you not seen a rheumatologist?? Or had other tests, seems a little gung-ho to me
Hi, I was diagnosed by GP due to blood test results esr 103 and crp 43. I was referred to rheumatologist who advised to reduce steroids from from 40mg to 30mg then 20mg after two weeks. I stayed on 20 mg for 5 weeks and have been in 17.5 for one week. I will reduce again to 15mg in September.
If you’ve only been on 17.5mg for a week it could still be withdrawal symptoms, but if it goes on much longer it’s likely to turn into a flare -see this link -healthunlocked.com/pmrgcauk...
..if it is a flare-you need to get things back under control, because if you reduce again without doing that it will just get worse.
..and please don’t assume just because Rheumy advised the taper it’s perfect. ..they can get it wrong as easily as a GP.
On another point if you are awake at 4.30am it might be worth taking you Pred then with a spoonful of yogurt - and give it time to get into your system whilst you try and nod off again.
I was given Pepcid (famotidine) for GERD and it worked extremely well with no obvious side-effects.
Will speak to GP as still having stomach problems with pantoprazole. 🙂
I am in Seattle in the US, but here they are definitively trying to get away from the PPIs in favor of the H2 blockers like Pepcid. Too many long term negative side-effects with the PPIs.
I did receive letter from rheumatologist today which outlines plans for tapering. It also recommend I may need H2 blockers instead of PPIs due to side effects.
I also wake up every morning at 4:30 like clockwork. Then find it impossible to get back to sleep. Could this have anything to do with inflammatory dump that happens around then?
Very likely……
Withdrawal effects, particularly with a steep taper, can cause general feeling of unwellness. If you have just tapered you could try toughing it out at 17.5 for a while and see if it all settles. The things to look out for are the GCA head/eye symptoms which would indicate your dose is not enough. You could ask GP for ESR and CRP blood tests which may show how your inflammation is doing. These do not always show if there is a bit of inflammation and they can lag behind symptoms, but if there is a major GCA flare they should be raised - (according to Dr Hughes.)
Thank you – that's really good to know. Makes perfect sense when pointed out, but I must be a slow learner (I think I can blame THAT one on the pred!) as I hadn't joined the dots before to realise that my feeling lousy could be due mostly to withdrawal symptoms from the pred levels dropping so fast, rather than necessarily blaming it all on the GCA. Also makes sense why I've started to feel a little better after "marking time" for a while. You've made my day!
This is what I say in my post re steroid withdrawal v flare -
“ Steroid withdrawal (or body getting used to new lower dose) usually shows immediately new dose is taken - and lasts between 2-5 days, but should then disappear.
It varies from a general feeling of being off colour to a return of symptoms pre diagnosis. For some the effects can be eased by paracetamol. It’s one reason why the various slow tapering methods were devised.”
Personally I never had a return of GCA symptoms as some do, but as I got below 15mg I did feel yucky, short tempered and clumsy -almost pre menstrual -but it fortunately only lasted 2-3 days.That’s when I started devising my slow tapering plan …
Oops. Thank you for the gentle reminder! 🤭 Yes, I remember reading your post about the difference when I "just" had PMR and was at lower doses, but for some reason I didn't make the connection this time (as I said, slow learner!) because it tricked me by not wearing off after 2-3 days. And after 14 days I dropped again before my system got used to the new dose, compounding the problem each time. A lesson well learned for sure.
Like so many others, I am so grateful for your slow tapering plans. They worked a treat when I was tapering at lower doses for PMR as I never really had anything that could count as a major flare then. I will definitely be using slow tapers again, perhaps once I get under 20mg.
You can use a slow taper anytime -it’s just that on higher GCA doses it’s not usually required -but you could always adapt and reduce over 2 weeks rather than 4… Just a thought…
Definitely worth experimenting with a little. Thank you for the suggestion!
There’s always a way around … just needs a bit of lateral thinking 🤔
Thinking? With a pred brain? Now that'll be interesting!!
As well as the immediate withdrawal effects I think there can be a longer term general yukkiness associated with higher levels of pred - and what level will depend on the person. I have found this going up pred also - when I increased because of a minor flare I felt increasingly ill every time the dose went up. This started going from 6mg to 10mg - a level at which I felt quite well when tapering down - and got worse. We thought it was GCA but it can only have been pred.
Your steady taper seems to be working well. From what I have read flares are most common under 10mg. Mine happened at 6 but it was after third vaccine and I wish I had given it longer to see if it would have settled itself.
For me, I have learned it is best to go slow and steady with the taper (I tend to use the national guidelines, though may go slower 4 down) and not react to niggles unless they progress into clear GCA symptoms.
Thank you. Really interesting to hear about the general yukkiness aspect of high doses of pred. I realise now that other than the Wonder Woman Effect (and also sleep disruptions and an overall jitteriness) at the really high doses, that I actually didn't feel too bad then otherwise. It's only as I've been steadily reducing that I started to feel worse. Interesting. But from what you're saying that makes sense now. And also highlights yet again just how individual our responses to these illnesses and their treatment can be!
My rheumie said a similar thing about ignoring the niggles too unless they progress to clear GCA symptoms. Makes more sense now.
Contrary to what some people seem to think (not present company) we DON'T say increase for niggles - only if they get worse with time which is a sign that you are hatching a flare. Just niggles that are stable and livable with are OK - ones that are progressing aren't.
I guess the trick is to be able to quickly spot the difference between an ongoing niggle and an increasing niggle so any potential flare can be nipped in the bud before it gets out of hand. We're all different and I know in my case at least, that it takes a bit of time and experience to learn. But having information from this forum makes it a lot easier. Thank you!
My apologies Lynlea if I've been rabbitting on too much in your post. But I hope some of the information will be helpful for you too.
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