Is it polymyalgia or the steroids that are making me feel so ill?

I have recently been disgnosed , and was put on 15 mg per day of steroids .This was reduced to 10 mg after only 4 weeks as I was feeling unwell .For about a week my pain improved, but for the past 7 days I have felt ill. Not too much pain until the last two days, but extremely weak and wobbly all over as if my blood sugar is low , (though food makes no difference .) I am only able to get through about half a day before having to lie down for two or three hours ..I make myself walk each day, but am feeling worse by the day . Up until now ( I am 77 ) I have enjoyed good health with unusually high energy levels ..This is a nightmare ...are my symptoms shared by others?

38 Replies

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  • Hi Tiny_Tim, I am probably not much help, but I do know that my Mom, who was diagnosed with GCA in September, has been extremely weak, wobbly, and napping more often than not. Prior to her diagnosis, she was a vibrant 82, still working full time, and with unusually high energy! She was started on 60 mg Prednisone and every taper that was tried was a fail and she was back up to the 60 mg... Finally her Rheumatologist sent her for monthly infusions of Actemra and over the course of 3 months she has tapered down to 20 mg Prednisone, very well so far. I worry about the weakness this has caused in what were extremely active legs prior to this illness. Most of the time it is a real struggle for her to lift herself up out of a chair. I am so sorry you are feeling these nightmare symptoms, especially at such a young age, and previously being very active. If you find the answer to these symptoms please share with all ! In the mean time, I believe you will find many, many wonderful people on this site who are a wealth of information, and very nice.. It sometime helps a little to know you are not alone in this struggle. Prayers being said that you begin to feel well again and soon!

    Joy

  • Thank you .it does help to know my symptoms are fairly " normal "

  • Have other tests been run - iron, thyroid, that sort of thing? Also, you must remember you have a fairly serious illness. We forget and do too much when we are first put on pred, when we should be treating ourselves as gently as if we were recovering from a bad flu. It's a good idea to have an equal amount of rest after a period of activity. And this may well mean that half a day's activity spread out throughout the whole day is indeed all you can comfortably do right now. And there's nothing wrong with that!

    Have you read this?

    butyoudontlooksick.com/arti...

    '

  • Yes other tests you suggested have been run and my rheumatologist is doing a CT scan as a belt and braces exercise.I will heed your advice about more rest Thank you.

  • Hello,

    Yes, it might be something else, but what you describe sounds like how I feel on Pred. I'm about 20 years younger than you and was on 40 mg until yesterday and now 30mg. I walked in to A&E strong and fit (apart from GCA) and walked out a shakey leaf that can't do much in between rests. Although I've got a bit more accustomed to it, I feel vaguely ill all the time like the first day out of bed after the flu. Saying that, if it has developed since being on Pred, it might be worth getting some bloods done eg potassium levels amongst others. The steroids make you lose it which can make you feel weak. Others with more experience will reply I'm sure.

  • Hi,

    Read this after posting my reply to your post reducing 40-30mg - that's a bit much! Watch for symptoms.

  • I should have typed 35mg! I wasn't sure about 30 either.

  • Hi again,

    you should be okay with 35mg, but if you think things are not right after about a week or so (1st couple of days likely to be steroid withdrawal, and paracetamol may help that), then you could go back up 2.5mg and see if that helps. Can't remember do you have enteric tablets, if so might be an idea to ask for smaller dose than 5mg if you don't already have.

    Good luck.

  • My fluey thing has been since starting steroids. So, do people still get withdrawal reducing at this level then, not just lower down the chain? Excuse my ignorance.

  • Yes, at the beginning I didn't realise what it was. I think the first few months, maybe up to a year I was so busy trying to get my head around the sight loss trauma and being on such high doses and worrying about OH, I just assumed it was par for the course. It was only when I began to get myself sorted and found this site that I realised why I felt so grotty (mine was short-temperedness etc similar to PMT) for a few days after reducing.

    A proper lightbulb moment - don't know why it didn't click before! So that's when I started my own version of a slow taper, and stuck to it from then on. No more problems - magic!

  • I find my Mom napping more and her patience at an all time low the day after a taper of the Prednisone. It does pass after a couple of days though and she seems to be adjusting. The Doctor has her tapering slowly, every 2 weeks at this point, and she is at 12.5 mg per day. A HUGE reduction from the beginning at 60 mg per day! It was extremely difficult the few first tapers we tried from 60 mg, had to actually go back up to 60 a couple times, but since she started the Actemra infusions every four weeks the taper is coming along. June 15th we can bring her down 11 mg per day! By no means do I see her energized or anywhere near back to her old self, but the hope off getting her off steroids and remaining with good blood results is what we hold on to. The only test that came back that was a bit high was her blood sugar level, which the Rheumatologist wanted her to follow up with her Primary Care Doctor, but she has refused so far. Still working on getting her to agree to get the tests done for that to see what she can do to get that level back in the normal range!

    Joy

  • Hi,

    Unfortunately Pred can raise blood sugars, but they should go back to normal as your Mom lowers her dose

    As for her fatigue, you have to realise she still has the underlying GCA - plus the Pred can cause fatigue as well. She will get there eventually but as we always say it's not a quick fix!

  • Thank you for your response! I do try to be understanding that even though the GCA appears to be under control "per blood work", that it is still there and could still be causing many of these woes... A follow up apt with her Primary Care today and the doctor ordered some blood work to see what her blood sugar and AC! is at now, and if need be will treat. No matter how much I research or read about GCA, I am overwhelmed with how deeply this disease can affect ones entire being!

    Joyismami ;)

  • Yes it does. And unfortunately it's very misunderstood by doctors and general public. Neither of which helps the patient nor their family.

  • When first diagnosed it was easy to see how misunderstood the Doctors were! We were fortunate to find a Rheumatologist who is working very well with my Mom.. Her Primary Care Doctor, well he is clueless and attributes "all" her symptoms as "nothing to worry about".. Her high blood sugar level one of them!! I had to inform him that he would be running a repeat blood test and an AC1 to check that level to see if it has changed, and if not that I would "expect" him to treat accordingly.. It was hard to speak to him this way but I was polite and firm.. Great personality, she likes him, but I don't care for his lack of interest..

    Joyismami :)

  • It is a SYSTEMIC disorder - affects the whole system. But loads of doctors don't realise that either "Take pred, you'll be back to normal!"

    Er, NO!!!

  • We were told Prednisone would be what brought her back to normal!! Ha!! I agree it is needed to control the inflammation, but they neglected to mention ALL the side affects that will wreak havoc with your daily life! Not only is your body fighting GCA which takes a tremendous toll, but you are fighting a drug that brings even more distress at times! No wonder there is so much frustration!!

    joyismami :)

  • Yes - you can experience withdrawal symptoms at any dose if the change in dose is more than your body can cope with. Steroid withdrawal should improve over the following days, gradually getting better - but for some people it can last as much as 2 weeks or even more. Everyone is different.

  • So far she is very fortunate that the taper is going well and that she really only has that one or two days of being completely "off" at each taper. She is really now coming into the very slow taper that I have heard so much about. She will be down to 10 mg a day this week, and after that she will going down 1mg at a time, I believe every 3 or 4 weeks.. Thank you so much for responding, it means a lot.. Some days I feel as though I am alone, just watching my Mom fall apart before my eyes.. I am the positive force for her, always urging and praising how far she has come since diagnosis and I keep her motivated and as active as she can be, and understanding when she just can't do things the way she use to before..

    Joyismami

  • She's very lucky to have you, but you do feel helpless - I know - I cared for my late husband for a long time, and many a time I could have ranted at the doctor, but didn't because it would have upset him.

    If your Mom is having problems reducing (is she reducing overnight -one day old dose, next day, new dose?) a slower tapering plan may help. It can fool the body into not realising what is happening. This is one I used, but you can devise one of your own -

    1st week - Sun & Thurs new dose

    2nd week - Sun, Tues & Thurs new dose

    3rd week - Sun, Tues, Wed, Thurs new dose

    4th week - Sun, Tues, Wed, Thurs & Sat new dose

    5th week - all week new dose

    If she gets through this and has no problem, she can then go straight into the next taper.

  • I love the plan you used! What a great idea! She did her 10 mg today for the first time so I will see how she is tomorrow and go from there. I called her Primary Care to get her blood sugar level from the test he ran on Monday, and the level had dropped way down!! Hoping that is part of the tapering she has been doing and it will continue to go down till it's back in a normal range. I know it's not only day to day with GCA, it's more like minute to minute and anything could happen..But I do feel as though the lower this prednisone goes the better it will be for her as she is spending a little less time sleeping every day, having a few more hours of not being too fatigued, and today actually went out with my husband to visit one of our daughters for about 1/2 hour.. Something she has not done in a very long time! It could be all different tomorrow!!! As always, I appreciate and Thank You for all your input and support.. It's not easy watching someone you love be ill and even harder to be the "caregiver."

    joyismami :)

  • Thank you for your useful comments

  • Hi

    We are all different and PMR effect us all differently but we all find we need to slow down and listen to our bodies and rest more.

    Steroids have lots of side effects if you read information on leaflets but its doesn't mean to say that you will get them all or any off them.

    Reducing form 15 to 10 after 4 weeks is a big drop many of us find reducing from 15 to 12,5 is too big a drop .

    Others will be along later to advise

    Good luck

    It does get better just be kind to yourself

    Rose

  • Thank you ..that helps

  • Being on pred doesn't make you suddenly feel 100% well. The pred only manages the symptoms, the inflammation that causes the swelling, pain and stiffness. The actual underlying cause continues to chug along in the background - and it makes you feel vaguely fluey. It also makes your muscles intolerant of acute exercise - so it may be you are simply trying to do too much. The reduction of 15 to 10mg is also big - and your body may be protesting about that. You also mention pain - and that suggests that you possibly are now on too low a dose to control the inflammation and that is likely to make you feel unwell.

    As well as the pred, managing PMR requires you to participate: pacing is essential.

    healthunlocked.com/pmrgcauk...

    But while you may have been fit and well until PMR hit - it is a very different matter now, as the paper from a GP who does research in PMR illustrates. The link is in the post, just click on it to get a free-to-air version.

    healthunlocked.com/pmrgcauk...

  • Many thanks ..knowing others are going through similar things is helpful.

  • My Mom just tapered from 15mg daily to 12.5. It is going to be a slow process from this point on.. I believe she will go down to 10 mg this week and thereafter only decrease by 1 mg every 3 or 4 weeks at that point.. If of course her blood work remains stable..

  • Hi Joy, if I were your Mum, below 10mg I would not decrease faster than 1 mg a month. In my case I actually only go down half a mg a month I must admit. It seems to work well.

  • Thank you! Tomorrow she starts the 10mg and this is going to be long part of tapering!! Fingers crossed that although it is going to be slow, it will be a great taper and she will make it off !!

    ;)

  • Good luck to her, hope it all goes well.

  • Thank you so much!!!

  • Hi Tim, You don't say whether you dropped from 15 to 10mg in one go; but 15 to 10mg in 4 weeks is what I was told is in line with British Rheumatology guidelines - I was advised to do 2 weeks on 15, 2 weeks on 12.5, 2 weeks on 10mg, and then take stock. I did manage to get down to 10mg after 4 weeks but quickly began suffering from pain and stiffness again. I can only say the reduction was too fast for me - but we are all very individual in how we react to the pred, and the guidelines may be fine for others. I ended going right back to 15mg, to get control of the symptoms, and since then have been reducing very gradually at drops of no more than 0.5mg each time.

    As for tiredness/lack of energy, I found I could sleep for England in the early months, and sometimes I had only to get up, shower and dress, to find I needed another lie down! Don't know if it's the effects of pred, or the condition itself - perhaps a combination. I'm now almost 8 months post diagnosis and starting prednisolone. I'm finding I'm less wobbly and feeble, and get fewer hot sweats, and can do a bit more in between rests. But, I still need to be conscious about pacing myself, and if I do too much (what would in fact have been very little in days gone by), I end up paying for it by feeling wiped out for a couple of days.

    This is a long haul job, and can't be rushed. I would say, above all listen to what your body tells you about how much you can take on - and be kind and gentle with yourself! Hope things start to improve for you soon.

  • Thank you that is really helpful

  • Tony_tim Hi

    This is my second time. I had a different diagnosis the first time of RA and was on

    Methotrexate instead of Prednisone. Now the diagnosis is PMR and I am on Prednisone 6 mg finally. So I can say from the two experiences that After the pain ended I still felt weak tired shakey and an overall sick feeling. So I think I am feeling the disease as well as adrenal exhaustion to a degree. Some days I cannot think to remember the moment before and I am only 68 and was also extremely fit and active as many will say on this site. I had a long stretch of time between both episodes but when I can think I remember times when my body seemed wrong but until you get really sick no one can say why you don't feel right. Your old self will be back but we must not stress and overdo. Good luck to you.

  • Many thanks ..that is very encouraging

    T T

  • Hi

    I was diagnosed with PMR too. I was actually happy when my doctor diagnosed me because I could barely move and I was terrified of it all. They have me 20mg of pred per day. I was 53 at the time. Then came the wave of tiredness I put it down to the fact that I had been awake all night with the pain. Fatigue is quite common in PMR. When it comes it's pointless trying to fight it. Youre under attack from you're own immune system "friendly fire" I called it. It can take a while to settle too it sounds from what you've written quite a recent diagnosis.

    However a word of caution, don't assume anything if you feel so unwell go back to your doctor. Every case is different.

    Are you on pain meds that are making you feel so ill?

    Could there be something else going on?

    The inflammation markers are not specific they use your symptoms plus the markers.

    I get terrible fatigue still and it's been a few years of living with this. I see my precious grandson about six times per year he lives in Southampton so I can't see him in term time. . Last time he came I had to go to bed, I felt ill and couldn't do a thing.

    I have a medical degree so I always ask questions because I want to know. It's my bodyou. If there are cells wearing ski masks and holding guns attacking me I want to do what I can to make them sod off.

    I may sound flippant but this disease is no joke it's ruined my life. My right leg is so affected I can't walk anymore with out a stick. It can attack anywhere because I'm younger my immune system is stronger. I've had dreadful extra poly manifestations.

    They do blood tests every month in order to lower pred. They ask me are you achy. No I'm in frigging pain, lots of pain so how do you like them apples?

    This month it came back high plus anaemia. I'm bleeding from somewhere....fantastic. it's been a piece of cake already. I also look after my son who suffers from autism. He's fairly able but very vulnerable. He gets stressed when I'm ill.

    My advice.

    PLEASE GO BACK TO THE DOCTOR and stay in the chair until you find out what's going on. They'll want you out of the chair. They like to keep to their appointment table. I know I've done the same. They're more inclined to give you what you want so you'll go don't just accept the diagnosis get more tests done if you're feeling dizzy see a neurologist. If you're feeling weak ask for a referral to a rheumatologist. They are not suffering this,you are.

    GPS are gate keepers they can't give you that much but they do hold the keys for further help.

    PMR is a sloppy diagnosis by that I mean there's not a definitive test for it. You must have inflammation going on somewhere. PMR fits the bill for your symptoms and results, your age is also typical for PMR. Don't just accept it though.

    I'm sure there's something out there to make life more tolerable for you. Go and get it, you re precious.

    Take care now.

    Warm regards

    Chrissie x

  • Thank you for such a comprehensive reply.I think I am less affaected than you , but it is confidence boosting to know that many of my symptoms seem to be shared by others .Yes I will keep asking the questions and also listening to my body .I am not good at being a sofa slug !

  • Me neither but I've had a busy week although I got up for a day of housework. The ski masks and guns are giving me a good talking to. I don't feel tired I'm in pain boots didn't have my pain med in stock. I can't move much I've got to tidy because my son hates a mess. It's not there's only two of us. I'm washing too. I like to keep on top of everything.

    I got depressed too. That's something to consider. I had to stop work and my income was quite good. At the place where the help people come to terms with sudden onset disability. They told me tof fill in forms and they put stuff on for you and send it off.

    I now get disabilty I got it really quickly too. Six weeks and I read on here people had waited months. I'm not sure if it depends of age. I live on a country lane with a limited bus service my car was 15 years old and when it ground to a halt. I wouldn't go out. The buses throw you about so much it's like being in a spinner. Sod that. Anyway I've got a car now on motorbility.

    I have to be honest my doctors have done so much. They've thrown everything at it to try to help me.

    I've accepted it if it improves great if not I'll give it the stick. I'm joining a couple of groups. Many people are older them me but they're welcoming and very kind.

    If I can help I'm very pleased to. I think it's pay back time for those times I got frustrated when it took patients more time getting in and out of my room than I had to spare. I never thought I would end up becoming one.

    It's taught me gratitude, my cherry Tree blossoms every year beautifully without me doing a thing. I love it now now because I'm at home. I was never grateful for my leg until it sodded off.

    You take care now

    It's been good talking with you.

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