Side effects on Prednisolone

Hello All. I am new on here having recently been diagnosed with PMR. I bought Kate Gilbert's book so I could find out more about it and also found this forum. I am nearly 54 and my rheumatologist, Dr Rod Hughes, thinks my PMR is stress-related. I have a very demanding boss (I am a PA in the City), I had a total hysterectomy with complications in January then lost someone very dear to me in May, plus my wonderful father who is 91 next month has dementia, so I shoot up and down the motorway a lot of weekends (4 to 5 hr round trip) to see him and try to help my sister look after him. It breaks my heart to see him the way he is. My hubby is wonderful and very supportive but I am not much fun to be around. Anyway, Dr Hughes put me on 5 mg of Prednisolone a couple of weeks ago to see if it had an effect on the muscle/joint aches and pains but it did almost nothing other than make me wake up in the early hours and also sweat profusely. I saw him again yesterday and he has increased my dose to 15 mg daily and I have to go back to see him in approx 2 weeks to discuss how I am feeling by then and what we do next. I have been working from home for the last couple of weeks as I have been in so much pain but have to go back to work on Monday as my boss is getting increasingly stroppy about my not being in the office, although I am doing loads from here. I am worried about going back into the office because the pain is at its worst in the mornings and I wake up soaking wet so will have to wash/dry my long hair every day and have my breakfast then pills, all before I leave for my commute - a 1.5 hr each way mix of walking, train and tube. And when I get there my boss will have no sympathy if I don't feel well. At the moment I feel absolutely exhausted by about 4.00 pm. I can't give up this job because we need my salary but I am feeling stressed about it all, which doesn't help the PMR. Sorry, I am rabbiting on - I actually came on here to ask if the side-effects of Prednisolone increase or wear off as you increase or taper the dose - although I started the sweating thing as soon as I went on the 5 mg so I am worried that 15 mg is going to make it a lot worse and make it more difficult for me to work. Any advice would be much appreciated - I am feeling very low and emotional about all of this. Thank you. Warm wishes, Susy

50 Replies

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  • It is possible you had not had PMR long enough to get to the sweats stage before you were put on 5mg - because I had far worse night sweats pre-pred than post-pred. They did progressively get worse over the 5 years, they practically didn't exist initially, only becoming bad at a later stage, and improved a ot once I was on 15mg of pred. Maybe the underlying cause of the PMR did not get active enough until it coincided with you being on pred. Certainly, for most people, once you get to lower doses - and 5mg is a low dose - the side effects do fade.

    I DO understand your problems about work so what I'm about to say isn't pie in the sky - but your health does have to come first and you will recover better if you can remove a few of these layers of stress because PMR and stress do not make good bedfellows. And both the PMR and the pred may well contribute to "brain fog" that make your boss even more critical - even PMR without pred left me reading the paragraph I had just translated half a dozen times to be sure I hadn't made a mistake! It doesn't help productivity

    Your boss may be getting stroppy - but you do have some rights. Have you seen this thread?

    healthunlocked.com/pmrgcauk...

  • Thank you so much for your reply, PMRPro - I really appreciate it, hearing from someone with your experience and knowledge. I will hope then that maybe now I am on 15 mg the sweats might in fact subside a little, or certainly when I start reducing. I have bought six flannels from Amazon and a Neal's Yard face spray - thought I would keep a flannel and the spray in my briefcase or handbag for the commute in case I get too sopping. I have to deal with clients/visitors a lot so having sweat dripping down my face and wet hair might be difficult.

    Thank you for for your understanding. My job and boss are the biggest stresses in my life, for sure. I have worked as his PA since I was 20 (we have moved around various companies as a "package") and in his younger days he wasn't such a bully but the more power and money he has amassed the worse he has got. He is one of the top dogs (appropriate word) in our organisation and in his field in the City and although I have spoken on the 'phone with HR and they say they will be supportive about possible adjustments to my hours or job when push comes to shove they won't stand up to him (more than their job's worth) and neither can I. I wish I could just tell him to shove his job where the sun don't shine. Thank you for the attached thread - I read that recently with great interest and when I meet with HR next week I will mention the Equalities Act.

    Thank you again.

  • The others have articulated what I was thinking too.

    Are you sure you can't manage? It is actually quite amazing how things cost a lot less when you don't have to power-dress and be immaculate all the time and pay a fortune to commute into London!

    As DL says - if you crumble completely you will no use to anyone - least of all to your bully of a boss.

  • Thank you - you are really making me think.

    Certainly the annual season ticket is a cost we could do without!

    But we have a very large mortgage, taken out based on our two salaries when we got married 10 years ago and stretched ourselves to buy this, our first house together (we had both been through traumatic and expensive divorces in the past before we met). We would have to move if I left this job and the City and right now I couldn't bear that - to leave our home.

    I am in the process of organising my father's move into an assisted living complex so maybe once we have got him in there that might help with that side of things as there is a restaurant and 24 hr staff so it would be less of a worry. Then we need to get through his 91st birthday and Christmas. I think in the New Year we will have to have a serious think about what we do next because I know you are right and health has to come first.

    Thank you again.

  • Hello and welcome tempers. Your boss is an absolute disgrace and failing totally in her or his duty of care towards an employee. I suspect that recovery for you will be extremely difficult with your pressurised and brutal sounding work environment. You have quite enough on your plate with your bereavement and also the gradual loss of your dear father ( my mum had frontal lobe dementia for 10 years before she died 3 years ago and was my total responsibility for the last 7 years of her illness). I have been ill since then really, diagnosed with PMR in March of this year.

    PMR feeds on stress - loves it! You need to sit down with your lovely hubby and reorganise your lifestyle. You will be no good to anyone if you fuse completely. There are people on this website who can barely get out of bed. I was one of them, rescued by prednisalone. Yes I sweat too, usually when I'm rushing about and don't give myself time to calm down. Or someone is piling the stress on to me. I can feel it begin to run down the side of my face. I've got a short bob and sometimes use dry shampoo which makes my thinning hair look thicker.

    Is it possible to be frank with anyone at work about this horrible condition that nobody seems to know about until they get it?

    Is there an occupational health presence or a personnel department/ HR?

    Sometimes diseases like PMR are a wake up call, an opportunity to examine your life and make some radical changes. Decide what is really important to you as a family. PMR is not life threatening but sometimes our lifestyle is.

    I lead a much simpler kinder life now and experience moments of pure happiness, in spite of feeling frighteningly awful some days. For instance painting a pink zebra with a mane of real feathers with my two year old grandson, totally Zen, nothing more to prove.

    Sorry for the lecture but your story struck a real cord. Go well.

  • Hi Susy,

    Very sorry to hear your trials over the last few months, which have undoubtedly led to your PMR.

    I have utmost sympathy and high regard for anyone who can remain in a full time stressful job during PMR. But, it is an illness and you have to treat it as such, and so do your employers - however much they don't want to! If you don't address this with both your immediate boss, and the HR department you are going to get to the stage where you are unfit to work - full stop. I'm sure your boss would prefer you to do less hours in the office, maybe with a stand-in when necessary than be there full time and not functioning properly. That's not helping you - or him!

    You really do have to get some help on this, and discuss the sensible options for your immediate future.

    Take care.

  • Many here can attest to my panic and despair about a year ago about this sudden condition onset and my job.... I spent so many hours weeping, stressing, fighting, bargaining, with how to manage... Long story short? I wasn't well enough to go back. I lost the job. We had to make a lot of adjustments, but when it's your health or your lifestyle....stress certainly makes it worse. I had a very stressful high intensity lots of travel job. I fully intended to retire there. Man, I wasted so much energy trying to control something I really had no control over. The biggest take-away for me with all this?? SLOW DOWN. I feel like the universe has been saying it over and over to me all year. Your focus can't be your job. It has to be your health. This board has helped me more than I can say. I wish you the best.

  • Thank you, SheffieldJane and DorsetLady, for your kind and supportive replies - I really appreciate it. Yes, my boss is a complete pig - unfortunately I work in a male-dominated environment in the City and that is what the top guys are like. Social psychopaths, basically. I will talk seriously to HR when I go back in on Monday (he's not in that day) and see what they have to say, but I know from the past that ultimately they will not be able to change his behaviour in any way. There is a possibility that my beloved Godfather whom I lost and miss so dreadfully may actually have left me something in his will which might help us to be in a better financial situation so I could leave, but because of probate we won't know until the Spring next year at the earliest. In the meantime I have to hang in there but maybe try to talk to my boss, if he will listen, about possibilities - maybe I could work from home on days when he is not in the office. He won't like it but something has to change or I will go under and have to be signed off sick. I have taken the PMR as a warning sign that I have to take a serious look at my life. Thank you again for the support. x

  • Out of interest - what is the sickness policy at your company? I know little about the private sector but is there an entitlement to any paid sick leave? You will be entitled to statutory sick pay anyway - which combined with the other savings might tip the balance.

  • That's a very good point, PMRPro - I have no idea but will look into it. If the steroids don't do the job then I might have to go sick anyway.

    I think part of the problem is that this is the only boss and the only job I have ever had - he got me when I was young and naive, just out of secretarial college, and was impressed by it all. He has dominated my life ever since. Now, 34 years later, I find it very hard to stand up to him or imagine working for someone else or in another field. He has worn me down and I have lost my confidence. Very similar to my first husband, who did the same, actually, now I think about it!

  • Poisonous people need to be avoided - they make us ill. If you look at them both they probably have very similar narcissistic tendencies.

    There is a book about that - Peace, Love and Healing by Bernie Siegel. We were given a copy when my husband had cancer - he pooh-poohed the concept and wouldn't read it but I did. I don't think it was coincidence he started to get well the day his mother died.

    I couldn't even imagine the hell of that sort of job - but then, I wouldn't have lasted 5 minutes with him!

  • You are right, and it is a toxic place in which to work. When you are inside the bubble it doesn't seem weird but I remember that when I went back after six weeks off for my TAH I was flabbergasted at the way the bosses spoke to and treated their PAs. Then you get sucked back in and it all becomes "normal" again.

    I will look up that book, thank you so much.

    All the other PAs say the same - ha!

  • Hi

    When I self Diagnosed myself Sept 2015 I had 2 months off sick and then had a further two months off before returning to work staggered over 6 weeks Week 1 x2 hours a day 2x 3 hours a day till I was back 7 hours a day.

    I work for a very large company and sickness policy is full pay for 3 months half pay for 3 months then statuary sick pay .

    As soon as staggered return was started I received full pay.

    I have been back to work full time since Dec 2015

    I honestly think I would not of coped without having that time off ,I had total rest and very gentle exercise.

    At the time I could not see how I could return to work but to do so I have had to reorganise my life and put myself first .

    good luck

  • Thank you, Rose. That is very interesting. It would be so much better for me if I could take time off. Glad to hear you are back at work now. X

  • What the others said, really. I know you say you need your salary. But what you don't need is this particular job. Can you find something else less stressful you could do, and as was said in this thread your expenses will go down if you leave this particular job. You sound like you are a very competent person, potentially a valuable employee for someone else.

    I'm not quite clear what your situation is regarding sick leave, and whether you are entitled to long term paid sick leave. If you are, or even if it's not all that long term, take it. Please, for your sake, your husband's sake, your health's sake.

    Perhaps bully boss, whom it seems has been taking you for granted for decades, will get a real wake up call when he loses your services for a couple of months - no working from home, no email or phone access!

  • Thank you, HeronNS. I really appreciate all the replies and am going to have a serious think about all this. I will talk to hubby this evening and also find out about sick leave for starters.

    Bully boss thought the world had ended when I had my total hysterectomy in January and was off for six weeks, but it didn't seem to make him appreciate me, he just felt sorry for himself and annoyed at the inconvenience. Stupidly because of pressure from him I went back to work too quickly.

    I would love to find a job locally in Surrey, not necessarily as a PA but making use of my organisational and people skills to help others somehow, rather than just run his life and pander to his huge ego.

  • I'm sure you can find something. Just wondering, though, while you are on the lengthy sick leave I hope you are able to take, why not look around for some sort of volunteer opportunity with a local organization you believe in? It won't help the pocketbook directly but it could lead to contacts that could help you in the future, as well as being very good for your self esteem.

  • I was planning on doing some volunteering if I ever got the chance to leave this job, funnily enough. I wanted to work for Look Good Feel Better, but I would need to retrain as a beauty therapist, which is what I wanted to do before my Father enrolled me in a secretarial college I hadn't even seen because he said if you have secretarial skills you can always get a job. Bless him - he meant well.

  • Aha! The Universe is telling you what needs to be done. :)

  • Hello to my namesake! I was 52 when diagnosed and still struggling 4.5 years later. I share rheumy with you too! He is very good, so hang onto him! This is all quite a shock at the beginning and it takes time for it all to sink in. Have a look at some of my previous posts where I am dealing with work and therefore stress issues etc. It sounds like you may need to check out what you are entitled to at work, because this journey isn't always smooth, and you may need reduced hours, time off sick etc.

    Regarding the side effects- the sweating was something I had a lot of especially at first- I found this wonderful towel thing that is for golfers but keeps cool and you can use it at night to cool you down. The sleeplessness is something that is still with me and I take Amitriptyline which really works for me- if I forget to take it, I don't sleep!!

    Hope this helps.

  • Thank you, Suzy - I really appreciate your reply and will take a look at some of your other posts. Funny that we share our rheumy! He is a good man. I was scared to begin with that I might have MND, as my Mother suffered from that dreadful disease, and hers started with pain in her joints and weakness, but he has reassured me totally that it is not that. I will look for a towel like the one you mention - it sounds great! If the sleep problem continues I will look at Amitriptyline, although last time I had that it sent me a bit weird and I felt like I had a hangover the next day.

    Thank you - very helpful.

    I think I might change my profile name to SusyT - nicer than tempers.

  • Now I can't figure out how to change my name, so it seems I shall remain tempers, which is actually part of my surname and my initial - in case anyone thinks I am grumpy. ;-)

  • Think you can change your name - have a look at the help page - see right of your name, along top. If it proves too difficult, you can always ditch your existing profile and make another - easy peasy for a career girl like you!

    Take care, and good luck in whatever you decide to do.

  • Managed to change my name to SusyTe (SusyT was already taken apparently, unless I buggered up the process somehow). Thank you, DorsetLady. This forum and the people on it are simply wonderful. I feel so much better now I have found you all. I am sorry that I won't be able to contribute much to other posts as at the moment I don't have much advice to give, being new to this. Thank you to everyone for being so supportive. x

  • Looks good to me!

    You will be able to contribute in time, by just being there to support others is good for all of us. We all feel a little lost at the best of times, and knowing there are others out there who feel the same makes it less lonely. Even if you can't give advice at the beginning, you can give support, and that's just as important.

    Take care.

  • SusyTe - what DL said!!!!!

    Even at the beginning of the journey you will have something to contribute - us oldies may have forgotten those nasty early days!

  • Thank you DorsetLady. x

  • Hi

    I think most has already been said. But just to chip in - I struggled for over a year with my stressful job, even tried reducing hours, but high dose of steroids and all the side effects, 3 flares and just no life, always exhausted - took the enormous decision to give up. I am 57 so no pension, my husband doesn't earn a lot, so things are tight. BUT so far we are managing....... I have not had a flare since I gave up work and am reducing slowly.

    Health is so important without it we really have nothing - so consider carefully and be kind to your self.

    Best wishes

  • I had GCA 5 years ago and struggled on at work but once I had my appointment with Rheumy and she witnessed how I was struggling I was signed off work and I was off until I was able to reduce without flare ups.

    Five years later I have it again this time it's taken longer to get under control and I had to go on to half pay at work but my job was left open for me. I am now slowly returning to work but my GP and OHS have recommended I do a less stressful role but I'm not sure there is one!

    If not I will look at reducing my hours to part time. After all the years of loyalty you have given do not feel guilty by putting your health first.

  • Where tempers/SuzyTe works sounds like the sort of atmosphere where if you left you would no longer exist after a week. No company will erect a memorial saying "She suffered in the cause of the office"...

  • You are right, at least with regard to the bosses - my fellow PAs in my area are lovely, thankfully. My boss is going to hang onto me as hard as he can 'though - he is a big baby who hardly knows his own bank account number and thinks the world will end if I am not seeing to all his affairs. He seems attached to me by some sort of cord - he calls me all the time when he is out of the office, even at 2.00 am his time when he's travelling, just to "touch base". None of the other bosses do that. Very weird. Not going to be easy to loosen his iron grip. 😔

  • You know, you might be surprised if you called his bluff. Men can be big babies about doing things and won't admit they can't. So they put on the "Big Boss" image.

  • Do you mean call his bluff and go sick?

  • That would be one possibility. But it sounds as if you already have called his bluff with your email.

  • Funnily enough he went very quiet after I sent it - although that could mean he hasn't read it and was just having lunch! However, his last few emails have a far more polite and measured tone to them - very unlike him! :-0 I suppose that may be how bullies react when you stand up to them - I've never been any good at it but it's easier by email. It will probably be a different story on both sides when I next actually see him in the flesh.

  • If they are at heart decent people yes - it makes them think a bit. Don't ever try to gloss over how you are feeling - the true bully will take that as an indication you are "lying".

  • Hello

    People with PMR should not become overtired or over stress their muscles. I only found this out by trial and error as I was not told this - I read it in Kate Gilbert's excellent book. Taking steroids weakens the muscles. You are obviousy becoming very tired and this is not helping with your condition. I am presently on 15mg and do not suffer from any sweating.

  • Thank you, gillrub. I have just sent a loooong email to my boss explaining in no uncertain terms about PMR, how it is affecting me etc, as he has been sending me some pointed comments about my working from home in his emails today. And I will probably give HR a copy too. I do feel exhausted, yes. Interesting about the sweating - I woke at 4.00 am with pain in the hips and was soaking wet again. Had a shower and got dressed, and now I am dripping again. Dr Hughes did say some people get this so I guess that's what it is. Hey ho, onwards and upwards.

  • It is about the time at which the cytokines (the inflammatory substances that cause the damage to the tissues) are released in the body. I could almost set a clock by it! I am on a form of pred you take at night before bed and it releases at 2am, reaching its peak at 4am-ish so it is there waiting for the cytokines to appear. If I am late taking it the 4am "heat" is worse because the pred peak is also late.

    I wonder if taking your pred immediately before bed would help at all? The optimal time to take ordinary plain white pred to avoid morning problems was established in a study to be 2am, peak is at about 4am.

    A lot of doctors get very edgy about patients taking pred at night - because of adrenal suppression - but we are on enough pred for so long that there will definitely be adrenal suppression so you might as well take the pred at the optimum time for you.

  • Really interesting, thank you, PMRPro. I will ask Dr Hughes when I see him in a week or so if I could take my Pred at night. At the moment because he gave me 5 mg to start which didn't work I am now taking 3 x 5 mg in the morning after breakfast. I could do without the waking up so early, particularly when I have to go back to work because that is a 6.00 am wake up time.

  • I do know a couple of people who have emailed him questions of that sort - he has a good reputation for answering! Did he assign you a specialist rheumatology nurse?

  • I don't actually have an email for him or Jody - I always speak to her on the telephone and then see him in person. He hasn't assigned me anyone yet. I forgot to ask him about carrying a steroid card - must remember next time.

  • There is an email address for Jody here:

    drrahughesrheumatologyltd.com/

  • Thank you - I should have asked her for that when I spoke to her - doh!

  • I have emailed Jody and await her response. Was awake at 3.45 am today with sweatingand pain. Feel very shaky today and arms really weak. Each day brings a new experience. Hey ho.

  • I'm sorry you had to find out the hard way - I have been beating this drum for the last 7 years on the various forums! I still have verbal fights on one forum with people who are able to continue to indulge in sport (tennis, cycling, running) and say if they can do it, so can the rest of us! They complain that they can, for example, only cycle 25 km instead of their usual 50!

    Not so for a lot of us - although it is possible to train our delicate muscles if we go about it slowly and carefully enough. But since for a few of us that means just an extra minute or two or few grams on the weights it can take a long time!

  • Yes! I know exactly how you feel as I was diagnosed with PMR 3 yrs ago and did not know what the heck this was as I never heard of it before. My Dr. started me out on 20 mgs and it stopped the pain in my shoulders and wrists OK, but I did not like the side affects. Had difficulty in sleeping, I was aggressive and my forearms broke out in purple blotches which is the bursting of small blood vessels. I went along on this dosage until I had to have rotator cuff surgery and had to be off of Preds for 6 weeks. After the 6 weeks I went back on them and when I read of all the dangers of this dug I demanded to be tapered down to zero and eventually was. I have not taken them for almost two yrs and feel pretty much OK. I still have pain in my wrists have mild overall joint stiffness. I had blood work done about one year ago and my new Dr. said the blood work did not indicate that I had PMR. Please my friend be careful of these steroids as they do have serious side affects and did your Dr. tell you they can cause type 2 diabetes among other ailments. They do raise blood sugar, blood pressure

    and can cause weight gain too. There are 80 known side affects with Predesone and I chose not to take it, but you do whatever you feel is best for you. God bless and hang in there as life itself is not always rosy but it is something we have to go through for our spiritual growth and Karma repayment.

  • Thank you, baldbill - your advice is much appreciated and I am sorry you had such a tough time of it. I think at present I must take the Prednisolone as I have to be able to function for work and also to get to and help look after my 90 year old father who is a 2.5/3 hrs drive away from me. But I am hoping that once I get the pain sort of under control with the 15 mg I can taper the dose steadily down so won't have so many of the side-effects. This is all new to me so we shall see - a steep learning curve but I trust Dr Hughes to guide me and will get through this. Thank you for your kind words and thoughts.

  • Hi SusyTe,

    I experience severe sweating with the prednisone too, I wake up soaking wet, during the day It runs down my forehead and back of neck. I have learned to let it be since the alternative of the pain is not worth it. So I kid with everyone that I am having personal heat waves! I am learning everyday that I must be more accepting of the terrible disease and try to go more with the flow, resting in between so as not to crash and burn. You will find much hope and good advice on this forum. Many great folks who have plowed the road before us. I too work and it is a must so I understand your plight, try to relax I think sometimes we create our own anxiety by accident worried about everything. Be Well

  • Thank you - much as I would not wish the sweating on anyone, it is good to know that I am not alone, if you know what I mean. As you say, we just have to accept it and go with the flow - or the stress of railing against it makes us stressed and that makes it worse! Really appreciate your support. The people on this forum are amazing!

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