Hi, I was diagnosed with PMR, 8 years ago and was down to 2mg of prednisolone, however 3 weeks ago I ended up in A&E being told I’d developed GCA, after CT head scans and blood tests. Also had a temporal artery biopsy. I was prescribed 60mg of prednisolone, tapering gently so still on 50. My problem is the treatment, i.e steroids, is making me ill in other ways, completely spaced out, jittery, fatigue, confusion, need to sleep, nausea and bloating, has anyone else struggled with this, does it get easier or do have to live like this until steroid dose comes down below 15mg?
High dose Prednisolone and effects: Hi, I was... - PMRGCAuk
High dose Prednisolone and effects
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Karil
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Morning Karil, I've only got PMR not GCA so can't comment from my own experience but from posts made by others on the forum I think you will find things improve as your dose comes down. Others will be along later and you will probably find some related posts have come up for you to read.
Hi I have both. What is your reducing time ? I did 60 for 3 weeks then reduced by 5 mg every 3 weeks till I got down to 20 then reducing by 1mg it's going to take some time. Good luck .this is a excelent forum so be guided by the experts on here .
Yes, it can feel pretty wretched on high doses as it affects every bit of you. Yes, it does get better with dose but I was already finding it a bit better by 30mg. I won’t say normal but not this out of control feeling, poor sleep. If one can avoid panicking about it as if it is something terrible as opposed to just feeling terrible it helps. This can be hard to do when one isn’t sleeping properly and the brain is in constant fight or flight. I was so ‘drugged’ and uncoordinated a few hours after taking Pred I had to take it at bed time to sleep through the worst before waking at the crack of dawn when the stimulant effect kicked in big time. The physical effects are helped by a very low carbohydrate diet and low salt content. This helps the hunger due to wild blood sugar swings which can induce you to eat lots of carbs. Yes, your face will go round and fat will sit at your neck and belly but again, that is not forever. Hang in there!
I felt exactly the same as you when I began my treatment for GCA. I felt so much better when I got down to 20mg and began sleeping and being a bit more ‘normal’. I had quite a few adverse effects on higher doses and had to take Betablockers to counteract these. Just hang on in there and try not to stress about it as that makes you feel worse!
DorsetLadyPMRGCAuk volunteer
Hi,
Sorry to hear you have been diagnosed with GCA, and yes I recognise many of the side effects you describe… apart from the nausea and bloating. But for a while I could talk for England according to my late husband… and regularly got told to ‘give it a rest’ nicely [most of the time].
Yes it does get better as you reduce, and as you get accustomed to all that extra cortisol racing around your body.
As I said to someone yesterday in another thread - although sometime it’s not easy -
Pred is a sight saver - that's all you need to tell yourself when you think it's an enemy........in my case not enough to save right eye... but it did the left.. so indeed my good friend.
Things will and do get better -maybe have a look at this re sleep -
healthunlocked.com/pmrgcauk...
Thank you DorsetLady for the link and for replying. So good to know that what im experiencing is not unusual and I’m eager to learn from what others have struggled with before me.
Maybe have a look at these link re GCA experiences - and more info -
healthunlocked.com/pmrgcauk....
healthunlocked.com/pmrgcauk...
When you feel up to it, have a potter though the FAQs [although don’t try and take in too much too soon] and if you have a query or worry- just ask… there always someone around to help.
ha ha I have been told that just 6 mg makes me talk for England. Trouble is, I've already built up a head of steam before I realise that I am doing it. 🤐
If PMR and pred taught me one thing, it is to be more tolerant of other people who are being annoying, they might not be able to help it. 
🤣 yet I was same talk for Briton ,I used to warn them ,”I have got verble dioreea,shits 🤣🤣 but the worst was my really explosive TEMPER 😱
I felt everything you describe. I do wish I had been warned. At times I felt I was going crazy. I was grateful to be alive and maintain sight at first but depression kicked in later. I recall writing a note about an appointment (day 2 of 60mg) and writing like a five year old. Quite frightening. Hang on in there. It will get better on lower doses. If insomnia persists on even lower doses seek help from your GP. Good luck and take care.
we are all very individual. I was fine at high doses for GCA (but they did dissolve my muscle!)
You might find you feel better at 50 mg...you never know...I actually miss the feeling of being energised at those high doses now that I am at a very low dose with sluggish adrenals.
So unpredicatable. Not the life's adventure I dreamed of for my later years!
ugh! Your last sentence, I keep saying that. Not quite the retirement that I had expected. But at least I am still here, hanging on.
How are your dissolved muscles doing now?
thanks for asking...no noticeable improvement yet...possibly will improve once off steroids completely..but doc says might not....one adapts
Good morning, I have GCA and experienced the variety of scary things apart from nausea that you describe. I was very concerned about it as I wasnt sure what was going on until I realised it was pred side effects and not part of the illness. As Snazzy D says it starts to get a bit easier at 30mg. One thing I found vital was to get a sleep in the afternoon. It helped enormously as I found my sleep patterns became very hit and miss. Also to avoid any stressy situations helps.
I can fully relate to your story . I was diagnosed with GCA and given 60 mg of Pred. The same day I flew to Paris and started the meds. Wow ! How did I feel. I don’t know how I got through the holiday but I did. You will probably reduce at 10mg a time and will feel so much better with every reduction: I did. Good luck and keep your chin up and if I remember correctly, I felt brilliant around the 20mg mark, and did well .
Karil, I was diagnosed with GCA a year ago and was on 60mgs of steroids. Despite being surrounded by a strong network of knowledgeable and helpful family and friends, no one could understand what I was going through dealing with the steroid side effects. I developed what I referred to as sundowner’s( term used with dementia / Alzheimer’s). I’d be energetic upon awakening but by late afternoon, I was a basket case. I’d frequently just sit in my sunroom and begin sobbing. I felt like a zombie. I had some dark thoughts. I was usually in bed super early because i needed to be alone. I didn’t want my family see me crying so often.
In hindsight, I still can’t believe that my Rheum didn’t counsel me on what to expect from side effects and that I would get better. Please reach out when you feel overwhelmed. You aren’t alone. I’m at 5mgs of Pred now. I’m finally feeling like my mental health is being restored. Now I’m dealing with aches and pains but certainly much better than where I was. Hang in there. It can be really tough but you *will* get through it❤️
Birdfriend, thank you for replying, this is exactly my experience of 60mg of steroids. I see to the dogs about 0630 and feel the best I am all day, then sleep again until 0900 and seem to just go downhill from there. Having survived 3 different cancers, I consider myself fairly self aware and mentally robust but this experience has just knocked my self confidence and I feel lost, spaced out and so weary. It is good to hear that I’m not alone in struggling with these symptoms and I thank everyone in this forum who has taken the time to reply.
I sympathise with anyone who is or has been on high doses of pred.....whilst it's a saver in many ways ( sight being one) I struggled with such low mood and needed some counselling yet was started only on 15mg! There were other usual side effects too of course, brain fog, moon face etc, but I remember the depression well, where I would just sit and weep. So I do respect anyone going through/who has gone through higher doses.....For the record, I'm off the pred now (since May 2022) and feel like I have my life back these past few weeks, am feeling the best I've ever felt in a long time, so stick in there everyone....there is hope for us all 🥰
I have recently been diagnosed with GCA. Was on 60mg for one week then dropped to 40mg for 4 weeks, now on 30mg. Those higher doses did my head in, I felt wiped out most of the time. No nausea or feeling bloated but I do generally watch my diet carefully, low carb, and have my last meal at around 6pm. On 30mg I feel more 'with it' but still quite tired. As others have said, it's par for the course and has prevented blindness. The GPs don't tell you all this. We're lucky to be on this forum.
I have to say I enjoyed it. I was put on 40mg. The relief from the pain and stiffness of PMR that I'd had for a year, then the GCA symptoms of headache, jaw claudication, not being able to open my mouth wide enough to eat, the feverishness etc all disappeared and I was able to sleep normally - such bliss!
I enjoyed having so much energy that I could get things done around the house we are doing up, go shopping, go out with friends etc without the total exhaustion afterwards. Now I am down to 1.5mg I am getting some stiffness and things are not so easy. I would welcome a high dose again! Maybe I'm just weird.
When I got GCA the first time, I'd already had PMR for a while and been on Pred for around a year or more. During that time I'd reduced my Pred from 15mgs to 11mgs. When I tried to reduce to 10mgs I suddenly got a very weird headache that didn't respond to painkillers and that made my scalp painful to touch on the left hand side.
I went to see the GP, he recognised the signs and put me on 60mgs immediately. The following morning I was walking the 3/4 mile to the train station for my commute to work (* see below), when I suddenly found myself keeling over into someone's front hedge! I managed to extricate myself, then smoothed my suit down to get off the inevitable leaves and twigs, and then carried on, but found that every so often the world would tip one way or the other, and I ended up going from lamppost to lamppost like a drunk till I reached the station. Getting home was the same, and even though I worked in an office and was sat down all day, I found that my desk seemed to be mobile and trying to climb the walls at times.
I started using a walking stick again just to keep me upright, as I never knew when the earth would suddenly move for me!
This carried on till I managed to reduce to around 30mgs, and after that the world stayed more or less in one place and my walking stick went back into the closet under the stairs. But those first few weeks on 60mgs, then 50 - 40mgs, were rather interesting to say the least.
So it's not the end of the world, and whatever angle it seems to be at the moment, it will return to normal once your dose comes down a bit. All the best, and keep us informed of how things pan out for you over the months ahead.
(*) The other day I spoke about my commute to work involving a 400mtr walk to a bus stop as part of my commute. This is because I live just north of London, and worked in IT, and after acquiring PMR in 2009 I worked in 4 different jobs, each one requiring a different commute.
At the time of my first GCA episode I worked in Fenchurch St. By the time I had my second GCA episode I was based in Canary Wharf, and my last job before retiring was in Twickenham. So please don't think I'm making up the different scenarios I've found myself in over the years.
I felt much better below 30 or so. Saving my eyesight was quite a motivation. Be gentle with yourself and rest lots.. it does get better!
I am sorry that you are experiencing all those miserable side effects. I, too, had that. But, it does get better. Hang in. All my best to you.
Hi Karil. I too was diagnosed with GCA (biopsy proven) and was on 60 mg of Pred. for 4 weeks. I was the Energizer Bunny. Felt on top of the world, could do anything. Except sleep that is. A couple of hrs at night then up for 4/5 hrs then a nap in the morning and again in aft.
I did get used to this cycle and did a lot of cooking/baking in the middle of the night. After getting own to 30 mg my sleep returned to normal and there was no pain in head or jaw.
I am now at l2mg still with slight moon face, did lose 50% of my hair, small wounds take forever to heal and bruise easily. The Pred did give me type 2 Diabetes and now on metformin. I am not overweight (125 lbs) so this diabetes is not lifestyle induced but steriod induced. I hope it resolves itself as I taper down. I am on very slow 7 week taper scedule now.
Things will definitely get better. I take my pred in a big spoonful of yogurt. I stay away from carbs and anything sweet, including sweet fruit. I stick with berries. If I am going to have carbs, I make sure to eat them last. Ideally salad first, protein second and carbs last. The thinking is that it will take the carbs longer to get ito the system because the salad and protein will get there first.
Take heart, things will improve. Take a good long time tapering.
Groda
As it relates to this particular thread, I’d like to get feedback from this wonderful group regarding whether or not you were educated about the side effects of steroids and given any type of ongoing counseling as you experienced, in some cases, some very serious mental health effects. I live in Chicago and was treated at a major Academic University Hospital.
My diagnoses was initially overlooked despite a 4 day hospital stay due to terrible headaches, ear pain, jaw pain etc. but was then diagnosed when a neurophthalmologist reviewed my chart. Biopsy( positive), 60 mgs of Pred and nearly instant relief.
As I mentioned earlier, I suffered side effects that seriously made me question my sanity. I was so depressed and ‘crazy’. At times I felt like I was underwater and the world around me just continued to move on. I had thoughts that my life as I knew it was completely over and, if so, what was the point of anything. I didn’t share my darkest thoughts with my husband or kids because I didn’t want to frighten them. I just cried instead.
Anyway, I could go on but my point is that no where along this hell journey did I have a doctor take my hand and say how are the steroid side effects. Let me explain to you *why* you feel so mentally unhinged and that , over time, it will get better.
Honestly, as a person who loves information, if I had just been counseled properly I could have handled this much better. In hindsight, I can’t believe I went through a near psychiatric break without proper supervision of my side effects.
I’ve recently begun to share my experience with others. I continue to be amazed at the anecdotes I hear of either a friend or their loved one’s steroid experience.
Again, I’ll forever be grateful to Pred for saving my eyesight and quelling my excruciating pain. However, I think that proper information and counseling regarding side effects would go a long way in helping us through the very difficult and often frightening side effects.
This group is a wealth of information and a comfort to the soul. ❤️
Birdfriend, so much of this resonates with my experience. I live alone, and so it was frightening to be sobbing and shouting like an alien me. Still not quite right on 20mg pred but handling it better, thanks largely to education from others on this site. I had no warning from the med world of potential nasty side effects, just the (undoubted) benefits of steroids for my GCAPMR.
Oh my Birdfriend, you have summarised my experience and feelings so eloquently. I remember saying to a friend that it was like being in a glass box watching the world continue its activities with my hands pressed against the glass wall, powerless, feeling hopeless, isolated. The friend was shocked but I didn’t think really understood. Why should she? Unless you’ve experienced high dose steroids and suffered the full gamut of side effects you wouldn’t know. A relative who had 4mg daily for less than a week for a different health issue begged to come off them! I did go through some dark times that first year of GCA. Still up and down on the energy front, today is day three of a slump but I will pick up again. It’s a funny old game and we are all individuals so react differently.
I have been so troubled by my experience that I’ve decided to take action. I am a healthcare lobbyist in Illinois. I regularly analyze legislation and interact with hospital CEO’s and other health care professionals. I also regularly discuss policy with our legislators. Fortunately I was able to hang on during this past year of GCA hell and still maintain my business.
I have connected recently with several legislators who suffer from auto immune illnesses and have experience with the prednisone journey. They fully agreed that we need to do more to support people who suffer in silence with auto immune and provide education for coping with our very difficult journey.
I’m confident that we will make some progress legislatively and/ or receive grant money through the state budget to create supportive resources for our community members in need.
I’ll keep you posted as to any progress we make. ❤️
Let's face it. Overall, none of the doctors I talk to have a clue how to handle the prednisone. It is only our fellow sufferers that have gone through it and a few wise counselors on this forum who understand. My rheumatologist was wonderful in diagnosing my GCA but then quickly, like every other doctor, advised quickly reducing the prednisone. Not understanding any of that, this forum cleared up everything even though at the beginning I was totally in a fog as to how this all worked. It was my neuro-ophthalmologist just half a year ago, that told me there is no problem staying on a very low dose of bread for the rest of my life. Granted, I am 82 years old so perhaps I am not so worried. I immediately went to 2.5 mg of Prednisone but that was after I had already been off the prednisone as I was using TCZ. So all I am trying to say is it is this website and forum that have all had some experience and they know how to keep us on our feet. Thank you to all of you and good luck in our recoveries.
amen sister. My husband is a doctor and even he didn’t know / fully understand this hell scape. My heart breaks for everyone going through this❤️
If you want wider feedback you need to post the question as a new thread. Only a small number will see it here in the middle of an existing thread - just the way HU works.
thanks! Will do
Hello Karil.
I was diagnosed with GCA early in December, and put on to 50 Pred daily. I have come down 10mg a month, and been told that at 20mg I the decreas 2.5mg every 2 weeks, and when I reach 10mg, just reduce 1mg monthly.
I am bloated, tired and cannot walk as I used to. Even a simple slope is difficult. I have tried to book an appointment with my GP for 4 weeks, and have now been told that she is on leave for the next 2 weeks. Hey;ho. I just need to talk to someone who understands, but I am still unsure that she will.
Good luck with your progress.
Jodi
Just a word of warning -reducing every 2 weeks is too quick for many. It can take that long to be really sure current dose is sufficient-if it’s not and you reduce there’s a significant risk you’ll flare. 3 weeks is absolute minimum, and 4 weeks is better..
Thank you so much Dorset Lady.
It was the Rheum Consultant that said drop initially 10mg every 2 weeks, and later 2.5 mg every 2 weeks. each time I reduce, I have to return to the previous level, but do this to prove to the doc, and consultant that I am following their instructions.
Next time someone actuually talks to me, ~~I will stress what is happening, and then continue in a way that works for me.
Keep smiling.
Unfortunately that’s what it states in guidelines… but as we know it doesn’t always work in practice.
Many of us patients and/or ex-patients know that a slower taper causes less relapses. And every time a patient relapses then a return to a higher dose of Pred is required. So inevitably they end up taking more Pred and longer to get off it… But what do we know 😳.
..and actually if most doctor read a bit further, they’d see this wording - In all cases, taper schedules should be individualized based on the patient - or similar, but too many seem to conveniently ignore that.
Dear Karil, I really feel for you, what a horrid development in your recovery from PMR, especially as you have probably been doing exactly the right thing in tapering down over the years. I was always confident that GCA was unlikely to develop once on steroids for PMR and have come to know through this forum that it is not always the case. It has been one of my greatest fears as I taper below 6 mg after over seven years, having felt totally berserk at the high doses my gormless GP started me on ( 50 mg!) .
It is time these steroid treated conditions were BETTER researched so that we are not the restless Guinea pigs we become, or should that be hamsters on a wheel! I am glad you have had such good responses and support from this forum which has been a great source of information, support and friendship to me. Stick with us xx
dear Karin
I am so sorry you have developed temporal arteritis , are they sure of it .? Your inflammatory markers should be very high and also did the temporal biopsy confirm this ? I am not a medical person but I have had P MR for 3 years now ( it developed straight after Covid ) and I also have other things wrong with me which have made doctors think of rheumatoid arthritis or other related things . I am still not sure exactly what I have got wrong with me though ….
GCA is pretty serious so you may need the steroids in high doses for a while but the sooner you can reduce that high dosage the better . Steroids are awful
And after 3 years I have put on about 9 kg . Plus they do make jittery , on edge, almost crazy ( I was a bit crazy on high steroids ) . I need them but I would LOVE to get rid of them . Try to reduce as much as you can with the help of a good rheumatologist: all good wishes to you and I hope this is just a short parenthesis and you can soon get back to a very low dosage .
It is possible to have GCA without having very high markers - in some cases they may even be within what is called normal range. And the biopsy is also not 100% conclusive - if it is positive it is certain it is GCA but if it is negative it doesn't mean it isn't, it just means they didn't see the giant cells they look for and there are several reasons that may be the case including the GCA isn't in the temporal artery or there are what are called skip lesions where there are areas with no abnormal cells. Then they must go by the symptoms.
Thank you PMR pro . You are right , I have been told the same thing . Ithsnk you for your reply .
t’s just horrible to be on high doses of steroids though and I know that full well . Also my mother had the same as me ( PMR ) and I know what cortisone does to your bones : her bones were like biscuits ….
But I would encourage Karil to go down As much as she can and as soon as she can . Following medical guidance of course.
very similar to myself and had horrible side effects particularly with other medications, I am now down to 17.5 but it has taken 8 months plus 2 unsuccessful goes at methatrexate. Along with other medical problems life is not so good but I'm i working on it
Doublef, thanks for replying, I’m sorry to hear life is not so good at the moment, I hope it improves for you soon. I was put on Methotrexate about 4 years ago but reacted badly to it so returned to Prednisone. It’s sunny here today, always helps me, stick with it my friend.
I'm sorry you have GCA, but thankful you were diagnosed before you suffered any permanent damage. Mine was 'discovered' only after I lost some sight....which I never would have if I had been on prednisone. I experienced all that you are except the bloating. Some days, when I reflect, I really don't recall clearly....I should say some months. Just give in to it and when you think you hate the side effects the most....remember that that white pill will save your sight.
I was so thankful when I found this forum and knew I wasn't alone. There were so many wonderful people walking this road with me but even more important; I read about the people who were at the end of the journey. If they made it, I knew I wasn't doomed to anything. I truly empathize with how you feel...but if you are tired~rest, if you seem confused~try to close your eyes and thoughts. It isn't easy, Karil, but it is so worth it and we will all be here with you...and for you. My best to you...💞
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