I am in my early 50's and was diagnosed with PMR in late 2023. I have been on Prednisolone ever since.
About 10-12 weeks later my vision became blurry, I was drowsy and felt spaced out.
I was sent home by my employer and signed off by my GP in February this year.
I continue to have the same symptoms and I am fatiguesd all the while. My mood swings and I can't think straight or multi-task at times. At times I cannot even get a sentence out, forget things and struggle to find words.
Has anyone else experienced this? Is this a side effect of Prednisolone?
I am still off work and going around in circles.
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Naim1
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Yes, all these can be side effects that reduce as the dose slowly decreases. I had these symptoms too and actually took the Pred at bedtime so I could sleep through the worst before waking at the crack of dawn. I was 54 and had to stop work. Unfortunately nobody tells you about this aspect of having an autoimmune condition and the steroids so many people are left worrying that there is something terribly wrong. What’s worse is that people are often given unrealistic expectations about recovery, the worst being that you take these pills and carry on as normal. Things do get better but it can take a long time and requires the Pred not to be reduced too fast.
What dose are you on? It would really help people replying if you could fill out your bio with symptoms prior to diagnosis, starting dose of Pred and how you’ve reduced and also how your symptoms have changed.
Pred can alter your focus and it will keep changing with dose. Nevertheless, do get your eyes checked.
DorsetLady will be along with her welcome post that has good information for those who are starting out or have got to a bewildered stage.
I had pain in my neck & shoulders, this progressed to not being able to sit up and get out of bed 'normally' due to pain in my sides and chest.
A few months later (having seen various GP's) I was unable able to lift my arms up past the horizontal position. I needed assistance to get dressed. This would normally get better after a few hours but return.
While having various tests (and awaiting others) I completley seized up in the work place. in Octber 2023, I could hardly walk or move. The pain went to the backs of my legs and hips. It then didn't go away.
After more blood tests the plasma viscosity was elevated . I was diagnosed with PMR and I was prescibed prednisolone.
Within 36 hours all symptoms dissapeared. I was initially on 15mg a day in November 23, this was then reduced quickly over a few weeks.
Having got down to 5mg a day all symptoms returned. I then increased up to 10mg a day and the PMR was under control.
Having been on the 10mg since January 2024, I started to feel weird around mid-January 2024. I have been back a number of times to see my GP and he prescribed ant-depressants, despite me insisting I am not depressed!
I have been off those for some time so I am convinced the Prednisolone is sending me loopy!
Firstly, your reduction plan was too ambitious which is why your symptoms came back. The Pred only counters the inflammation from the autoimmune onslaught that carries on regardless until it is ready to stop which is not usually under 2 years. The idea of reduction is to find the lowest dose that controls your inflammation. It isn’t good to career down the ladder, hit a relapse and go back up as experience of others shows it tends to become less effective. Doctors are generally terrified of Pred and this is a common approach that can do the patient no favours.
Back to your head symptoms. I did find that the Pred effect did accumulate which is why you may have started to feel groggy a couple of months later. However, DL’s comment reminds me that before I was diagnosed with GCA (a PMR relative that needs higher doses) I was forgetting sentences mid way through but not just that, not even remembering why I was talking to someone. It felt like I couldn’t think in a straight line. My memory was shot and I was thinking I had early onset dementia. Although Pred made me groggy and drunk the clouds lifted on the rest of it. GCA is inflammation of the arteries of the head. It is really difficult to know what’s your issue but GCA shouldn’t be ruled out hence suggesting you get your eyes tested and mention possible GCA to focus their mind.
Can you also see a different GP? On the whole GP’s don’t see a lot of GCA and early symptoms similar to yours can easily be dismissed because they are not specific. I think giving you antidepressants even when you say you are fine is poor. Do you have any other symptoms anywhere else in the body, especially the head, no matter how silly or insignificant ?
Just a thought - I experienced symptoms like you describe on two occasions when I upped the pred for a flare (GCA then PMR). It seems to be a rare? phenomenon that increasing a dose to a one you were fine on before can bring on these horrible vague symptoms. Anyway, this was the conclusion of my rheumy who is well regarded on this forum. As soon as I started to reduce, it gradually improved.
Another thought - being on 10mg since January is a lot. Not sure why you are. The alternate day 2.5 taper is stupid, but there are other approaches on the forum and guidance - either a one mg a month, or a 1mg slower taper.
As for depression prescription when you are not depressed SO BAD- ask to see another GP.
Can I ask what dose you started on -and what now. That does sound quite extreme for PMR doses.. and as your symptoms do sound a bit GCA ish , just wondering if it’s a mix of illness and Pred.
As SnazzyD mentioned see my info post -but a bit more detail on you -on bio please would help us give a better answer -
Are you on any other medications started at the same time as the pred?
These can be a side effect of pred but usually at much higher doses. However, PMR itself can cause them and so can several other medications that are often used. You were messed about badly - fast tapers never end well and doctors won't listen however often we try to tell them!
I was on no other medication prior to Prednisolone, I was fit, healthy (ish) and active.
I was started on 15mg a day then reduced over a 5 week period from 15mg to 10mg, then to 7mg & 5mg. The PMR came back and I was put back up to 12mg (PMR symptoms cleared up) Then reduced to 10mg (PMR under control).
In early January my GP advised I take 7.5mg then 10mg on alternate days, however very quickly the PMR flared up again & I have now been on 10mg a day since mid January 2024.
My 'side effects' have been with me ever since. Not getting worse but not getting an better. I can't work because of the 'side effects' My Occupational health unit won't let me back in work and I can't work anyway as i'm on my backside.
No, not prior to pred - were any started at the same time as the pred?
Many doctors automatically give patients a PPI to protect from stomach effects, as well as calcium and vit D supplements and also often a bisphosphonate to protect your bones. Did your GP give any of this sort of "added extra"?
But your GP's approach to tapering has probably led to some of the problems. Below 10mg the recommended steps are 1mg at a time - they should give you 1mg tablets to make that possible. Some people react very badly to this alternating doses approach - their body can't cope with the changes from day to day.
The PMR didn't "come back", the symptoms did. PMR isn't the illness, it is the name given to an underlying autoimmune disorder that causes the immune system to be unable to recognise body as self so it turns on it and attacks it by mistake, as if it were an invading virus or bacterium, creating inflamamtion in certain regions of the body. The pred cures nothing - it combats the inflammation to relieve the symtoms but that only happens while you are on enough pred for the level of disease activity.
The underlying autoimmune disorder can cause the problems you describe, so can pred and so can other medications and if you are unlucky, you may get a double or even triple whammy.
Have you only seen your GP? I think you may need to be referred to a rheumatologist - because I'm not sure this is pure and simple PMR and your GP doesn't appear to know a great deal about PMR - he hasn't even read the literature and guidelines (or he thinks he knows better).
my GP advised I take 7.5mg then 10mg on alternate days,
To be honest , even though it is mentioned in the guidelines it’s not a good plan for the majority of people…
Usual advice is 1mg every 4-8 weeks depending on disease activity and patients wishes - something many doctors seem to ignore - especially the second part!
Agree with PMRpro, think you may have more going on… second opinion required.
No other meds started at the same time and no added extras. Other problem is since February, had to wait a total of 8 weeks to get back and see the GP as 'no appointments'. Had to fight to get seen.
That is NOT good enough for ANY patient with a chronic disorder that isn't well-managed and stable. I would have turned up to the practice and politely requested an emergency appointment.
Oh I know! It is the spectre of the NHS as it is at present that makes me so reluctant to return to the UK and my daughters. Seen same day and always the same GP - turn up and wait in a single handed practice. If a specialist appointment is cancelled by them, rearranged asap. Always offered the earliest appointment available in the entire region for scans - you might need a day out but it will be somewhere lovely and I get free transport on our integrated public transport system. Medications available to me that NICE won't approve. And all free except a 1 euro prescription charge and even that can be claimed against tax!!!
I'm so sorry that you have been through this awful time. I'm newly diagnosed so not offering advice, there are many on here that have expertise and invaluable experience who will help and support. I just wanted to say, hang on in there, I had to go private for a one off help but understand that you are unable to work atm so that may not be feasible. You have a fight on your hands to get the treatment you deserve but you have my best wishes and support.
Prednisone can cause depression. I had that effect from it years ago. But it went away after I stopped taking it. I've been on Pred for 2 1/2 years now due to PMR and GCA. I have trouble speaking and thinking of works frequently--that is a side effect of Prednisone. Blurry vision also. Read as many posts on this site as you possibly can to educate yourself on how to manage this. It's the only way I've been able to cope.
Good morning Naim1🙂I am sorry to hear you are suffering.
A good gp is worth her weight in gold.
Some people need a very slow taper and a different approach to managing their pmr.
I hope you get the help you need. It sounds such a difficult time.
Folk on here are v knowledgeable. It would be good if you can ask your gp for a different plan in tapering pred and how you take it.
I’m in my early 50’s and was diagnosed with PMR in Aug-23.
After the initial relief from 15mg of Pred I started to get bad side effects. Nausea, dizziness, brain-fog, mood-swings and tiredness. There were so pronounced I needed to take vertigo tablets, Anti-Depressants and PPI tablets.
It was 5 months before I could go back to work, in Jan-24. Now I’m currently on 5.5mg / day, functioning @ work and symptoms are largely under control. I’m still a long way from being ‘normal’ and as my doctors told me recently this journey is hard but you will recover!
I found reading the forum posts and advice from PMR experts really helped me understand what I was experiencing and how to work with my doctor.
I was put on high doses of prednisolone around 20 years ago for pyoderma gangrenosim. It was an awful time. The first and most noticeable side effect was massive weight gain. At first I was dismissive of this thinking I would shed it when I came off them but I was on Pred for much longer than I anticipated and it was very difficult to shift the weight afterwards. I think all the running and cycling I did when I did come off them probably was a big contributor to the knee trouble I suffer from now.
I used to really struggle with sleeping. I was working long shifts at the time and would return home absolutely exhausted but would struggle to sleep.
I was definitely moody, sometimes borderline depressed and was very touchy with my work mates and family. I think that would sometimes be made much worse by the lack of sleep. I was also constantly hungry and trying to not eat too much maybe made me moody.
I would say try to get into a routine of sleeping and waking if you can, get plenty daylight and fresh air so I guess walking and gardening etc as these were things I couldn’t do much working long unsociable shifts.
Prednisolone, I’ve been told, is a wonderful drug and relatively cheap but it comes with a lot of side effects, perhaps ask your doctor if there is anything that can be taken as an alternative, there often is but it it can be expensive so doctors are reluctant to switch.
Incidentally my dog has been on small doses of prednisolone for a skin condition for almost 10 years and she displays some of the symptoms you describe too. Good luck.
Prednisolone, I’ve been told, is a wonderful drug and relatively cheap but it comes with a lot of side effects, perhaps ask your doctor if there is anything that can be taken as an alternative, there often is but it it can be expensive so doctors are reluctant to switch.
For me, it certainly was a wonder drug.. it saved the sight in my left eye after I had lost that in the right one due to a very late diagnosis GCA. I did gain weight, but soon lost that [and more] as I got lower on the Pred.. and no other major side effects… and most can be managed or mitigated.
As for a replacement, for PMR and GCA there really isn’t a true like for like one, there may be steroid spares, but they all have side effects…and TCZ [a biologic] was only trialled for a year in the UK, so that’s all it is approved for in GCA.. and certainly not for PMR.
I am soryy you have these symptoms. For me the symptoms you describe appeared BEFORE Prednisolone, and they come back when I taper too low. They are not constant, but after a few years I can see that the symptoms—brain fog, incomplete sentences, forgetting words, fatigue, difficulty concentrating (no multitasking)—appear when I'm overexerted, both physically and mentally. The latter especially happens in new situations with many people I have to talk to and relate to. Otherwise, I am very extroverted. The symptoms are the reason I can't work and can only do some consulting. So, just to add to the discussion, these symptoms can also come from GCA/PMR itself, as seen in other autoimmune diseases like lupus. However, the week after a dose increase, I am always a bit jumpy and irritable
I had symptoms exactly like yours & about 10 mths ago I was started on 15mg prednisolone. After only 1 dose my pains went away & have not returned. Gradually I have been reduced each month, 12.5mg, 10, 9, & 1mg each month so that I am currently on 6mg. I was also prescribed Calci D tabs.
I have encountered the horrible 'moonface', tiredness, & lately, thinning hair (that is depressing.) My eyesight did seem blurry so I had a test & my prescription had changed.
I am reliably informed that all will return to normal when I stop the steroids & only hope that is so. Meanwhile I am just so thankful to be pain free & trust that I will not have any flare up or have to increase the meds so that I am on course to see an end goal.
...so, further to my last post, I saw my GP on Friday. Explained how my cognitive issues have got no better ( but peak & trough) since late January & early February this year when my Pred dose was increased to 10mg every day ( up from10mg & 7.5mg on alternate days) due to a flare up.
I have passed on all the information and advice given to me gained on this site including how others have similar cognitive issues.
So in agreement with the GP we are going to slowly reduce the Pred ( as per the % reduction advice on this site ) to see if the cognitive issues improve.
If my PMR symptoms flare up again ( currently in check) and my cognitive issues improve then I have a problem, however at least it may indicate that my noggin does not take kindly to Pred.
Just to recap, I'm very fatigued on waking in the morning and find it difficult to rouse.
I can get exhausted after mild activity
At times have to sleep mid morning or afternoon
My vision is blurry ( like i'm wearing someone elses glasses!)
Find it difficult to find the right words at times.
Have a sense of being ' puddled'
At times find it difficult to multi-task
Brain fog.
A combo of the above ebs & flows. Some days better than others but has not gone away since onset late January this year.
I have a very physical & mentally challenging job working at times long hours.
The above has meant I cannot work & have been on sick leave since early Feb.
Think there are quite a few on the forum who could say the same though a lot of us aren't as badly affected. It is a pain - given pred is the primary approach for PMR>
I’m younger and honestly feel just as incapacitated on steroids as I did on untreated PMR which is saying something. My dose was lowered far too quickly and certainly experience the same symptoms you describe. It does improve with each steady slow dose but after a year and on 6mg, I still feel ruined. You are not going mad and antidepressants are not the solution.
There was a small study done last year which showed c.70% of patients were cognitively impaired. It was worse in the younger participants but all over 60. They hardly recognised young PMR sufferers yet alone understand how it may affect them. Time will tell but I’m pretty sure PMR is affecting my brain and have noticed a real deterioration on steroids. Hang on in there - this forum is always here for you
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