After 2 years I have managed to taper down Prednisolone to 6.5 mg. PMR pain seems pretty much under conytol although I still have lower back and leg pain which both the rheumatologist and the orthopaedic consultant say is due to wear and rear and for which I will soon start physio. I have suffered with anxiety since a child and have been on an SSRI for about 25 years. Until recently it has been manageable but since I hit the 7 mg mark I have been feeling a lot more anxious and also quite tearful. Is this just me or have many of you experienced this?
6.5mg and Anxiety: After 2 years I have managed to... - PMRGCAuk
6.5mg and Anxiety
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Jomaur
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DorsetLadyPMRGCAuk volunteer
Quite likely to be adrenals struggling -anxiety is a sign of that…this gives more info -
healthunlocked.com/pmrgcauk...
very slow taper and patience is usually the only answer to get them functioning better, but you could discuss with GP if anxiety is really ramping up.
Yep I was just going to post the same - the adrenal glands are where the emotions come from - pain down front of legs called shinsplints and back is also adrenals. I also was a sensitive and anxious child - and if that is the case then you may be in a position that you need adrenal suppost always but ...........I was also running on adrenaline due to low thyroid hormone being under par through my life - so could be that too.
You replied to me rather than original poster , but they will see it -so no probs.
That is interesting about adrenals causing pain down the front of the legs, as I put a question on here a few days ago about that, although mine for the most part is at the lower part of the front of my legs. I am on 4.5 coming down slowly to 4, so could well be adrenals doing this.
I had Sepsis in 2017 and then again 2018 due to chronic UTI problem I have - they sent me out of hospital on 200 mg of HC - it took me nearly two years to come down to 30 mg and then my body had a reaction and I had to switch to methyl for the anti inflammatory component.
Thank you. I have talked to my GP about this and she is very sympathetic but I’ve found that the medical profession is not keen to talk about the negative effects of Pred!
Really, some of them seem to delight in telling you all the bad things about Pred…
well the GP who started me on Pred never mentioned any of the side effects and considering I was already on medication for hypertension and anxiety it might have been sensible to have discussed it, Interestingly the orthopaedic consultant I saw last year for my back pain said that Prednisolone was the most horrible drug. The rheumatologist I saw didn’t”t even recognise that Steroids can cause Insomnia!
🤦🏻♀️
Saints preserve us!!! Honestly - if pred is the "most horrible drug" he really has led a sheltered life! Though I do have to say that orthopods are hopeless at pharmacology. They are very good on healthy people breaking things but they have many shortcomings when faced with the complex medical patient needing their care.
And given the amount rheumies need to use pred in the absence of an alternative you'd think they might at least read the PIL ...
Well I paid privately to see him as the waiting list where we are is endless but will not be booking another appt. All he seemed interested in was telling me to swim three times a week. Really in public swimming pools in January? A medical person who doesn’t acknowledge that steroids can interfere with sleep does not deserve my confidence or hard saved for money!
Where do you live? Maybe we can point you to someone a bit more knowledgeable.
Just outside Chester.
If MrsNails is looking in, maybe she could suggest someone in that neck of the woods. I believe there are some good ones at Oswestry. The NW is a bit of a dessert!!
I find it the other way in the UK - they'll tell you all the negative possibilities but never agree it has a lot of positives.
I agree - I looked at the side effects list of my steroid and found only one and even that wasn't weight gain as I lost a bit of weight as the inflammation went down in my body - I would not be able to live without my methyl pred for Lupus and thyroid problems.
Be reassured that this is rather normal with adrenals needing to wake up. I have been tapering to 0.5 mg for a few weeks now, and have only just stabilised emotionally. I seemed to have spent most of the festive period weeping at the slightest provocation.
Thank you - glad to hear that things can improve.
I was on pred before PMR and always struggled reducing around 5/6mgs resulting in Lack of enthusiasm , depression and social withdrawal . With PMR I am getting the same symptoms but a few aches too ( c reactive protein now 4 ,was 77), so feel it’s steroid withdrawal symptoms not PMR.
Me too. I’m in my fourth year on Pred for PMR/GCA. Struggled when I reached 5mg. Now doing an extra long taper in the hope no flare. I too feel anxious, I feel shaky inside but it’s not visible. Again, reaching a lower dose. Currently 6.5 and 6. Will soon be taking more 6 than 6.5. Mood swings are awful, hate feeling low, not me at all. Weather doesn’t help. Summer will soon be along and hope it’s another good one. Good luck to you, you’re not on your own
Jomaur• in reply to
Thank you. It’s reassuring to know that others have felt the same.
I have suffered awful anxiety on prednisolone on top of other side effects and succumbed to a course of anti depressants in December. Things are improving all round. I am pacing myself well, especially during this winter as I basically want to get through it in one piece without flaring. The hardest thing is allowing your body to dictate what you do, not your brain. On the advice of my GP I referred myself to NHS funded counselling which I had the first session last week. I am currently on 12.5mg a day for GCA.
My GP referred me to NHS counselling last week, I had my initial telephone assessment yesterday and hope to begin in approx. twelve weeks time. I hope you find the counselling beneficial. It’s just finding the kind which is best for you.
• in reply toBluey-1
What was your starting dose for GCA and are you using the very slow taper ?
Bluey-1• in reply to
I started on 60 mg on 29/6/22 (see my bio). Had a couple of blips between 20-17.5 mg. Started 12.5mg on 8th Jan for 4 weeks after a successful month on 15mg. All ok at the moment now sleep is gradually getting better. Bloods all good. It’s the acceptance of this illness and pacing that is a challenge. I was a very active sociable person before GCA and I struggle with the changes. I’m taking things very slowly, have good support from the medics and working on enjoying each day when I’m feeling good. I’ve just done a 1.5 mile walk around the block and know that’s enough for today. When I overdo it….well, I know about it! Reading my body seems to be the important thing in trying to manage this condition.
• in reply toBluey-1
What symptoms are you getting with GCA? So you haven't got PMR too then.
Bluey-1• in reply to
I haven’t got PMR. I had headaches leading to visual disturbances, painful jaw when eating, tension in head while brushing hair, weight loss at diagnosis for GCA at the end of June 22 but none of those symptoms now. I get very fatigued if I over do it or don’t get restful sleep. I have suffered some muscle weakness, jitteriness and anxiety since diagnosis. Is that the GCA or the steroids? I don’t know. My inflammatory markers have been consistently at 1 for CRP for three months and I’m doing ok since taking anti depressants and gradually improving sleep. Maybe the gradual lowering of steroid dose is helping with sleep. It was literally a nightmare on the high doses. I’m not complacent. I do know that I’m susceptible to the slightest amount of stress so the pacing in crucial to avoid going backwards. Treat yourself as a princess is said often here so that’s the advice I’ve been following. I’m plodding on at a slow pace and keeping my fingers well 🤞
• in reply toBluey-1
Hello again, your CRP is brilliant at 1. My last blood test I was 3 for CRP and I think 6 for the ERS....both of which said satisfactory. It's hard to know whether it's the lowering of pred or the adrenals not doing what they should and start to produce the cortisol we need to keep I all sane. I get cross with rheumys and docs when they continually say we must get you off Pred. It's dangerous to do so and symptoms would all return. I've definitely decided again taking Methotrexate to help reduce the steroids. So in March when he mentions it again he's going to get a big fat NO thank you. Just hope using another much slower tapering method I should be okay this time round....what do they day, 'third time lucky'.
Take care and try hard to stay as stress free as poss, cause at the end of the day what does stress do, only ruin our health....easier said than done. We all experince stress during our lifetime, it's how we handle it I suppose.
Sounds like your body chemistry on pred is playing havoc with your emotions. I have been on some form of anti-depressant since ‘91, and cannot do without them, but I have to say that aging has increased my overall anxiety. Steroids have made me testy and touchy as well.
I always thought that anxiety would decrease as you got older but it seems there are just more and different things to be anxious about and the whole thing about having PMR and having to take steroids is anxiety provoking. Pity the medics don’t pay more attention to the effects of steroids on mental health instead of making them sound like swallowing a couple of pain killers each day.We woukd still suffer them but wouldn’t have to act as our own drs to find out why.
There’s so much we don’t know until we begin to experience the side effects. Having pmr is scary because it is up to us to monitor our own symptoms and manage our steroids accordingly. And we are all different.
"it is up to us to monitor our own symptoms and manage our steroids accordingly"
It isn't really - our doctors should be taking a lot more interest but with creaking healthcare systems it is a whole new ball game.
right! i see my doc every two-three weeks and he still says i know best what is going in.
You are very privileged - actually seeing a doctor! And every few weeks???
Medicare pays for a lot of my private doctor. And meds. I am grateful. Also living in a densely populated area.
I certainly found these doses under 10mg caused me to feel anxious with a short fuse due to feeling overwhelmed by not much and feeling vaguely fluey. My adrenal glands were certainly not working well as I also had fatigue and a walking through treacle feeling. I thought it was just the high doses that did this but no, the low doses as well until your body realises it has to produce its own cortisol. Unfortunately the only to do that is to keep being low in dose until the penny drops. I retreated from life to cope for months but I am happy to say it came good in the end. The key is to not over do it while you’re waiting and reduce very very slowly. Do read DL’s link.
Two of your points resonate with me. I also feel as if I am wading through treacle and have also had to retreat from life in order to look after myself and avoid as much stress as possible. It’s good to hear that things have improved for you, and it gives hope to others.
It is rather tedious but I’d rather slow down and ride the choppy waters of making the body notice a cortisol shortfall than keeping up normal life and causing a crisis that needs an increase in dose undoing any good work.
PMRproAmbassador
As you reduce the pred dose and get to the levels at which the body has to start to produce a top-up of cortisol to function it can lead to anxiety and mood swings.
It is a horrible stage to be at. I used to be an intrepid driver but now am a quivering wreck in traffic. I reckon I have transformed into a slug most days as I have no enthusiasm to get off the sofa.
How long does this phase last?i started
On 15mg in June 2021 and am now on 3mg per day.
How long does it last? Unfortunately no simple answer - for some a lot longer than others. But now you are down to 3mg you can request a cortisol test from GP to gauge the situation…
It is - never got there myself but I still feel like that!!!! Not entirely true - the one place I'm happy is behind the wheel but it is a bit expensive to just indulge myself!
But do ask the GP to do a basal cortisol level - cortisol on a sample taken in the morning between 9am and before lunchtime.
Me too! I'd cry as a sad programme started rather than wait for the sad bits!! Anxiety about seeing people - more so going out, but even them coming to mine (although fine once with them).I can't remember the dose it started for me, but it settled down after being on 4mg for a while, so hopefully my adrenals are starting to catch up.
I hope you start to feel better soon x
Aah thank you. I feel the same about going out but once I am out I realise it does me good. Yes emotions a bit all over the place, reassuring to know I’m not the only one!
OMG I so recognise what you say here Purpleazalia, I seem to have cut myself off from very body and get so anxious in anticipation of being with people, but once I am with them I’m okay. Luckily my pony and my dog get me out and I find a more positive identity through them.
• in reply toPurpleazalia
I've kept a diary from day one of diagnosis. I write down every symptom I feel, then I can look back and see what dose I was taking. I also daily write down and tick the mg of pred. Dread feeling rough once I get to 4mg. Got to say most days I'm good, might feel a bit lightheaded from time to time, but my energy levels seem okay. Headaches, but sure that's from my bad neck/shoulder and the cracking in my neck when I turn my head. I know it's muscular and not sure if I've laid awkwardly, but it's been going on for several weeks now so decided to get a face to face with doc. The one that couldn't diagnose PMR....so this will be interesting on the 30th !!
Purpleazalia• in reply to
Wish I'd thought of doing that. I have kept a diary of my dose. It took nearly a year on 5mg before I could reduce to 4.5 then 4. The only time I've had light headedness was when I reduced to 3.5 in a straight forward drop around October last year. Unfortunately, after 3 weeks the PMR symptoms were returning and I went back to 4mg. I'm currently trying again with a tapered drop - on week 3 and no signs of PMR symptoms returning at the moment. Funny you mention the neck problems too - I had similar on 4mg and spent a couple of months doing gentle shoulder and neck exercises twice a day, and tried to be more conscious of posture when using the Internet on my phone - it is lots better at the moment . I hope your appointment with the doctor is beneficial! x
• in reply toPurpleazalia
Thank you. I'm not blaming neck on PMR....it can't be blamed for everything, age play a huge part too. I must try and adjust my posture while on my laptop. Don't use 'phone much for the internet, I prefer to type with to hands....used to be a secretary many year ago, so long ago shorthand too.....now I'm showing my age haha !!
I recently dropped to six and am getting palpitations..wonder if they go as my system gets used to lower dose?
I was getting palpitations at 7mg but not sure what was causing it. They seem to have eased off now, touch wood!
Arrhythmias can be caused by poor adrenal function.
Does that mean I should be wary of reducing the Pred (as the rheumatologist has suggested) until the arrhythmias have stopped. Hopefully.
If it was the pred causing the palpitations, I would have expected it to have been the case at higher doses, Are you sure you didn't? His reaction sounds to me like the kneejerk response of the non-specialist in heart matters who knows pred can cause palpitations so to him, the solution is take the pred away. I would certainly be very aware of what happens with each drop - if it is adrenal insufficiency they would probably get worse rather than better.
I have been taking 7mg for a long while and don’t think (can’t be sure) that I had them at higher doses. I don’t think that I mentioned them to the rheumatologist because I didn’t realise that they had any bearing on any of the inflammatory conditions.
My a/fib is due to the autoimmune part of the PMR having damaged the cells in the sinus node. It is worse with inflammation so more pred improves it!
But if you are having palpitations, they need to be checked out. There may be nothing to see on an ECG unless it is happening at the time and it rarely is - have you got a fitbit or smart watch?
No I don’t have either, technology wise they are a step too far for me.
Just wondered, they'd give a good monitoring. I use a pulse oximeter to check pulse rate and that also shows an indication of the "shape" of the heart beat. That's just put it on your finger and press the on/off switch!
I haven’t heard of those, can you buy those in places like Boots, and are they reasonably priced? It would be more my level of technical expertise. 🤔
Boots does sell them but they are cheaper in the obvious online store. They are very easy to use.
They come in various prices
boots.com/boots-finger-puls...
amazon.co.uk/pulse-oximeter...
Thanks PMRpro. I had a thought, are they the things that nurses use , rectangular shaped that clip on the finger? Or have I got it completely wrong?
Exactly!
Oh, I can manage that!
Nurses don't even have to be able to count anymore - just take the reading off the oximeter!
That made me think about the need for calculators. Although I have one I never use it, I much prefer to use pen and paper to add up. Call me old fashioned but I find it just as quick.
That’s because we did mental arithmetic as youngsters-and it sticks.
Nowadays they don’t, and need to rely on technology to do if for them!
Can remember when I first used an adding machine at work I used to double check the figures to make sure try were correct!
It’s strange because I was terrible at Maths per se but good at mental arithmetic. But you’ve definitely got to keep using it or you do loose it.
What happens when that technology breaks down?
I love your last comment, it made me laugh.
Sad really!🤔…
As scientists we were always to roughly check the results manually to get the ballpark answer. Oh so easy to be out by a factor of 10, 100 or even more if you get the decimal point in the wrong place! It is thought that may have been what happened to the space shuttle Columbia. Either that or someone mixed decimal and US units ...
Perhaps I’m not so sad then!
But as you say a decimal point in the wrong place can cause havoc .. as the saying goes -rubbish in. rubbish out!
Indeed!
I was extremely interested to read your post and all the replies! I am bipolar and until I got to 6mg ( now tapering to 3.5) I felt my anxiety was semi under control but not any more 😩. I am needing a lot more help from my psychiatrist and therapist to just exist. I’m being positive and on that note I’m 66 years old and at present skiing in Austria and I’m so unbelievably pleased with myself 😂. Rest day today…… good luck Jomaur and anyone else who is suffering anxiety- there is light at the end of the tunnel!!!
I'm sorry your anxiety has ramped up. So has mine. I've been on .5 clonazepam for 20 years, but suffered with anxiety since a child as well. Now my GP wants me off the clonazepam, which helps keep me on an even keel. I see him today for other PMR related issues and will ask again for a refill on the clonazepam. He wants to prescribe an anti-depressant/anxiety drug. My thought is, with what I'm going through right now with the PMR and a flare and an intestinal virus, this is not the time to take me OFF of anything. Also experiencing difficulty swallowing which goes along with anxiety or even PMR-related things. It seems I've made this post about me, but so anxiety can cause so many symptoms. I have such pressure on both ears and sometimes cannot hear (especially in places of white noise). Sometimes it feels as though ear drums are going to explode. Jaw pain (not sure if GCA), but also could be from clenching. I have a terrible time connecting with my Rheumatologist. Of course, all this causes more anxiety. Do SSRI's work well for you? My thought is, at least for now, "doc, if it's not broke, don't fix it."
I agree with you that now is not the time to start altering your medication. I feel that my SSRI is not working as welll as it did but my dr is not keen for me to change it at the moment. If this is my adrenals causing the increased anxiety then there really is no point in changing. Like you I am also suffering from a few other medical problems. Since being diagnosed in 2021 I have fallen and broken my humerus in three places, been diagnosed with AFib, had. Covid and also have a problem with my lower back and legs that causes me pain and prevents me walking far or standing for long. I am soon going to start physio for this having already tried physio with another physiotherapist and chiropractice.I have also just finished treatment for varicose veins in my legs.I shouldn’t be surprised that anxiety is rearing it’s ugly head but it’s really not welcome!Hope things improve for you.
Like you I was always anxious as a child, I put it down to not having any brothers or sisters and moving houses a lot. I have also been on antidepressants for years now, but I’m not sure they were much help while taking Prednisolone or tapering but if it will help you once I stopped the steroid I really began to feel so much better and my anxiety became much easier to manage. My hair fell out which may have been because the adrenals weren’t fully operational but 6 months down the line and everything seems fine. Just be patient and maybe increase the antidepressants if the doctor agrees. Good luck.
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