feeling scared

Hi I'm 52 and I have just been diagnosed with GCA about eight weeks ago and I am really struggling with it. I was put on 60mg of pred which did stop the pains but with really awful side effects I am so low and feel really depressed if I am not crying I am in a rage and feel so angry! I am covered in black bruises constantly hot and sweaty like I am menopausal. I have severe heartburn and struggle with my breathing( had chest x ray all good) My face is so swollen and I have put about 20 pounds on so far! I also get severe cramps in my hands and feet! I reduced pred to 30mg for a few weeks now doc has reduced me again today to 20mg I am sorry to moan but I am really frightened and want to know is this all normal? any advice welcome!

50 Replies

  • Hi Wendy-woo2,

    Yes, went through all those emotions and many of your side effects, and probably some different ones although fortunately did not put on quite so much weight but some certainly!

    Actually, in the last couple of days I have been going through my old diaries on this delightful journey (am now down to 1mg four years after diagnosis), just to sort things out really, and looking back I'm now surprised at how dark some of my early days were, I'd forgotten how difficult things were. 

    The point I'm trying to make, is yes it can be grim at times, and you wonder how you are going to get through, but we humans are very resilient and we do get through the bad times. All of us! 

    The only concern I would have is your rate of reduction. It's fairly quick so just ensure you have regular blood tests, and keep an eye on your symptoms. And you'll be pleased to know that your side effects will reduce as you reduce the Pred, but don't be in too much of a rush, you need to keep that inflammation under control at all times. 

    Good luck. 

  • Hello Wendy-woo, Welcome to the club no-one wants to belong to! I was 52 when I got PMR- 4 years down the line, like Dorset Lady, I can look back and remember the chaos I was in for at least 4 months when I went on the Pred. I felt all over the place and found myself upping and decreasing the doses and getting all confused.I fell down the stairs through night wandering as I couldn't sleep at all, and the hot flushes that I had never had before were a shock . I hadn't yet discovered this forum and my best advice to you is to look at the old postings here as well as the current ones, and to read Kate Gilbert's book. Knowledge is power with PMR/GCA, I think, as the doctors do not know what it is like themselves! If you have any questions do ask- there are a lot of people here to help and share their experiences with you- we know how hard it is. Take Care.

  • Hi

    Dorset Lady has given you the best answer it does get better I have PMR lots of the side effects of preds have gone since I have reduced .Still have a long way to go but try to look at things positively,

    Preds what have a gained

    Less pain and stiffness

    Lovely thick hair the rate it grow is another matter as it grows to quickly.

    My eyelashes look as if I have false ones never had them so long before

    Lovely rosy cheeks never looked so well

    I am also informed should tan faster in summer  

    Memory shot to pots but that provides all my friends and family with a good laugh as I can never remember things .

    Sometimes even that's a bonus.

    Take care


  • "I am also informed should tan faster in summer " - not necessarily, many people burn when on pred so do be careful and use a good sunscreen if you do find yourself going pink.

  • Thank you its great to have people to talk to who actually know how I am feeling ! I am scared its the unknown and the not being in control I am not coping with yet. I am forgetting everything too!

  • "Normal" no - but normal for GCA and pred? Yes.

    Has your doctor not given you stomach protection drugs - omeprazole or ranitidine/Zantac are pretty much essential for high doses. Many people find yoghurt also helps (plain, bio) ant taking your tablets in the middle of your breakfast also helps.

    The mood swings and the rest are typical problems but they will get better as your body gets used to the pred - and it will. The breathlessness is also typical of pred. I'm only on about 12mg at present - and I sometimes spend a couple of hours in the night throwing the bedclothes off and dragging them back on.

    Many of us have found cutting carbs drastically helps with the weight gain - either to reduce what we put on in the first place or to lose weight we have put on. 

    Pred makes you lose magnesium, calcium and potassium in your urine and all of those can cause cramps if low - eat bananas, apricots, nuts, yoghurt, avocados and dark green veggies. Get a magnesium supplement from the chemist. And ask your doctor to check those levels as well.

    I agree with the others that the reductions are fast - if the symptoms return don't hesitate to ask for advice. If you have GCA I hope you are under a rheumatologist and not just your GP.

    And I'll say the same as DL - in a year you will look back and see how far you have come. But for the moment you are a poorly bunny and you need to rest - which will help most of those side effects as well. If you are really low then speak to your GP and ask for help. Where do you live? Maybe there is a support group nearby where you can get in contact with someone else who has been there too - but if not, just have a scream here. Someone will be around.

  • Thanks for all the advice I am really grateful . so glad to hear I am not completely crazy then!  it is all so hard right now and I still haven't accepted that I have got this illness yet I will see my GP about how low I am feeling because apart from my fat face its the worst of my symptoms as I am usually a very happy strong positive person who at the moment feels like an emotional wreck! I am following advice from my rheumatologist about reducing pred although everyone is saying its too fast I will see how I go

  • Actually your comment about not accepting you have this illness is very common. The sooner you do accept that you have a serious illness, which is what GCA is, the sooner you become in control of it and not the other way round. PMRpro has given you some very good advice about foods, as well as just getting through the myriad of problems that this things throws at us. 

    The doctors are there to advise you, as we do as well, but you must listen to your own body, that will tell you when to rest, when to reduce etc. It's a very steep learning curve, but there's always somebody on here that has been where you are, so don't hesitate to post whenever you need to. 

  • thank you

  • Dear Dorset Lady and PMRpro,

     I have just read your reply's to Wendy-woo2; thank you...

     I don't know anyone else with GCA & PMR to actually speak to. (I have friends and family, but they have never heard of these conditions, I think this is a difficult illness to understand) I feel unwell and isolated with these feelings/symptoms a lot of the time, I keep forgetting I have a serious condition and have just realised I have not really accepted it. Like most people I expect a lot from myself and keep pushing myself with the old fashioned stiff upper lip to march on and pretend all is well. I think I felt a bit ashamed as well, how bad and stupid is that?

    Realisation appears to have set in, it only took a year...  I'm in tears, in a good way I think.

    Thank you for your support and friendship.

    Kindest regards


  • Hi Marion,

    I think you are like a lot of GCA PMR patients - someone who's used to being a very organised, busy, self motivated person. Nothing wrong with that, but we don't give in when something like this hits us - not me, I'm invincible! It comes as a bit of a shock when we find we are actually suscepable to illness, and sometimes takes a while to get our head around it! But like all of us, you do in time. Doesn't mean you give into it, the opposite in fact - you take back control - our normal place! 

    And a few tears now and again do you good - it relieves the stress. 

    Take care.

  • Thank you so much. 

    You take care too and have a lovely day in the sunshine, in lovely Dorset.

  • You too! Whereabouts? 

  • I live in Reading, Berkshire.

  • Aaah, 

    Still down south then!

  • Yes. We have a holiday home in Mudeford, not been down too much because of me... 

  • That's a shame. Love Mudeford, but unfortunately haven't been there for some time. 

  • Nice to breath the fresh sea air :-) 

    Are you feeling well today? Is it okay to ask? (Please don't feel you have to reply) 

  • Yes, despite just been shopping, ahh the joys of it! Going to read paper and then, if ensuthiastic enough going to plant up a few pots before tomorrow's promised rain.

  • Good. Take care.

  • You say "we" so I assume you have a partner and you are mobile if you go to Mudeford? There is a superb support group which meets in Chertsey every other month. People come from far further away than Reading! You will meet plenty of people who know exactly what you are going through without you having to explain. Scroll down to Surrey.


    and contact the group leader - who also frequents these pages.

  • Thank you so much; I will do that. You all really do help and make a difference... 

  • Hi Wendy Woo2

    I was diagnosed June last year with PMR/GCA, just like you started on a really high dose and had all the awful side effects after the initial relief of the pain subsiding. (Mood swings, heart palpations, insomnia, fatigue, night sweats, ankles painful, cramp and bloating, forgetfulness to name just a few!) I am now down to 15mgs after 11 months, and am generally feeling better, I still need my 'nap' in the afternoon, have little energy and have the full moon face and buffalo hump and my fat has distributed differently and I have put weight on and constantly try and watch what I eat. Night sweats still bother me and my eyes have recently been a problem and are swollen and I have tinnitus - the condition and the effects of the preds differ for all it seems. Oh tendonitis seems to have reared its ugly head too, but these things seem to be with us then resolve as time passes. 

    My fat face and chins bothers me the most and I know this is something I will not get used to. 

    Acceptance for me was really difficult, I was still working (still am part time now though), thought I could just carry on as normal. That is not the case, I had to rest, say no to having the grand children for any long periods of time, or things I just could not deal with. I cant walk up hills or any distance without puffing and feeling exhausted, so my normal life had to change.

    The others have covered the reduction of preds, I have gone back up three times because of reducing too fast - so I use the dead slow reduction now.

    This forum is great, many answers are on here, but people are very kind and will respond if you ask a question. You are not alone and things will improve - if  you can get your family to understand and support you that will be a great help.

    Best wishes & be kind to yourself

  • thanks for sharing your experience with me. like you I am really struggling with the fat face and chins which I suppose in the grand scheme of things shouldn't matter but it does! I have always been petite and never had to worry about weight I hate looking in the mirror and cry every time I do which I know sounds really shallow. I have always been really fit running walking and regularly exercising which I find really difficult at the moment. I work in a primary school and regularly take the children away mountain climbing absailing etc. which I know I probably wont be able to do now I haven't stopped working yet and I'm trying to carry on as normal just to give me some sanity but the constant crying and feeling so down is making it all increasingly difficult for me and some days I feel so poorly I struggle to do a full day, I haven't been advised about work or every day life by anyone and I just assumed things would improve quickly and I could just carry on I suppose I am looking for a quick solution and I am beginning to realise there isn't want. I see my rheumatoligist  almost every week at the moment and having bloods checked every 2 weeks and I am beginning to recognise when things are not good and sometimes know before he does which I suppose is a good thing, hopefully I can accept what is  happening to me soon then I am sure I will be able to cope better I am so glad there are people like you willing to offer support and advise it really does help !

  • Hi Wendy-woo2. ..I am reading your post whilst in bed having had to take a day off work again  due to exhaustion. I am thinking that you need to take time off too! Call me cynical but no one is going to remember you for struggling going to work every day when you were ill!!! Be kind to your self. You need to rest. Listen to your body. It's telling you both how you are physically as well as mentally that you need to rest. I was diagnosed with pmr in Dec 2014 at tthe ripe old age of 51 and a half and even now after 16 months I struggle and it catches up with me like these last few days so I told my boss yesterday that I had to have today off.  This is how I have to manage this illness. It's taken time to learn but learn I have! I have had to adapt and change the way I do things. I work 30 hrs a week  over 4 days. If I knew this illness was  for ever I would have to look at cutting hours permanently but seens as it's meant to burn itself out in time I don't want to do anything drastic at the moment. So having a day off when needed is the way I get through. Life is definitely more healthy now than at diagnosis but there are still many days when I question life particularly when I feel far older than my years. It's ironic that I, yourself and many others say before gca/pmr were very healthy fit and active! Luckily I have a loving husband and some great friends to draw on. Best wishes and let us know how you progress x

  • Dear Wendy-woo2

    I’m so sorry you’re having such a difficult time. I’m at exactly the same stage as you, same timing, same treatment phases, similar age, working full time in a very busy job and very busy life in general, and trying to figure out what to continue with at the moment and how. 

    It is a very frightening situation to be in, particularly at the beginning. I was working full time only a few weeks ago but had to stop as I was too unwell. For me the most frightening time was when I was waiting to be seen by a specialist, had no official diagnosis although I and my GP both had a good idea about what was going on, and I didn’t know how to explain to people what was happening as I had no ‘label’. 

    I’m full of admiration for you trying to continue working, if I’ve understood your message correctly, but if I could suggest one thing above all else - you can’t continue working safely with early-stage GCA and on high-dose steroids, particularly in a job that involves high levels of responsibility for others. It’s not you - it’s the cognitive and physical effects of the condition and, more significantly, the steroids. One of the effects of the prednisolone is that it changes temporarily the way our thinking is processed and how we retain information ( ie we can’t do it as we normally would). The most important thing is to avoid putting yourself at risk by not being able to do something through no fault of your own. I’m sorry to be so blunt but I’m in a similar position to you at work regarding responsibilities and would not be able to forgive myself if I missed something and something went wrong. 

    Everyone is different but I’ve found some ways of managing the fear and the uncertainty and how to work with my doctors to understand their thinking. The same things might not apply to you but I’m very happy to share what’s been helping me. 

    The turning point: this came with the help of people here when they said to me in a previous post about work - I have to accept that I have ‘a serious illness’. It was a shock but a very important message. I’ve never been told I have a serious health condition before, I’ve never been off sick for this long, and I’ve never been at risk of losing my sight before. It was such an important message I copied all their advice into one document and read it over several days whilst I absorbed its implications. Probably also because I can’t retain information at the moment on high-dose pred, but because something like that still feels surreal so it’s taken a while to get the message. 

    Occupational Health: if you’re working in a school am I right in thinking that you have access to an Occupational Health service? For me, the support and practical help I’ve received from OH has been invaluable. Their immediate understanding not only of the medical implications but of the work risks and what I needed was extremely helpful. They took on the responsibility for communicating with my manager, and I felt completely believed by them. It’s important to work with the Occ Health system in a job where it is available. It’s hard if you’re not used to being ill and feeling vulnerable but let them take some of the strain. Further down the line you may want their help in thinking about how you do your job to suit you when you’re feeling better but perhaps not entirely well. The earlier they are involved the better. 

    Telling other people: at the beginning I had no official diagnosis so couldn’t figure out what to tell my friends, particularly as I’d had various other complications that I thought were the main issue. I’d assumed that once I was better from the infections and other problems I’d be back at work as usual. Telling my friends has meant that I’m now feeling much less isolated, people have been lovely and asked to visit, and just getting regular 'hello, how are you?’ messages makes a huge difference. I’m too tired or prednisolone-zonked to see people much at the moment but I’ve got a list of potential visitors all lined up for when I’m feeling up to it, so I’m looking forward to that.

    Medical conversations: ironically, it’s been very helpful for me to hear my consultant say he can’t give me an exact schedule at the moment of how things will progress. I guess we all hope for certainty and absolutes but if my consultant can’t predict an exact timeline for when I’ll be able to go back to work, how on earth can anyone else? This turned out to be an important piece of information for my workplace. It indicates that I have something serious and complex but that I’m doing all I can to get better and back to work eventually. It also helped me stop fighting the illness and put myself into ‘patient mode’. 

    I’ve had times of being very frightened by my symptoms but not knowing what to do. I’ve now asked my doctors for a little checklist of which signs and symptoms I should act upon and how, and which ones they regard as part of the treatment or condition. Doctors are trained to use risk algorithms so they act fast in response to some issues and appear not to be unduly worried by others, but these are sometimes the ones that are worrying us as patients the most. Now I feel much more in control of what to do because I have a checklist, for example, of which visual symptoms to be concerned about and which hospital to go to, and which bruising signs I need to get help for and which I can monitor on my own. I’ve also found that when I asked about that the doctors emphasised - without me asking - that I would be taken seriously at A&E and that it was fine for me to go there if I needed to, which helped too. 

    Changing schedule: it is impossible for me to try to stick to my pre-illness schedule and routines so I can’t imagine how hard it must be for you trying to work as well. One of the most important things I’ve found is to accept that for a while that I am at the whim of the drugs and the symptoms. That has stopped me worrying about not sleeping, having to eat differently and not think straight or be able to walk much. My 24-hour day has taken on a much weirder but more relaxed approach: if I only sleep from 10pm-midnight and then again from 6-7am that’s fine. I can sleep later. It’s not me, it’s the prednisolone. If I can avoid a lot of weight gain by eating several small meals rather than at meal times then that’s what I will try to do. 

    I’ve been keeping track of what I can do when, and when the prednisolone effects really kick in. That’s been helpful as I’m less likely to be taken unawares - although it keeps changing and suddenly I now can’t do anything after 4pm rather than perking up at around 6pm. 

    Mood and body changes: these are really hard - but telling myself ‘it’s the prednisolone’ helps me feel less awful when I’m snappy, although I still feel really guilty for the person on the receiving end. I ended up showing my family this article about prednisolone and its effects on mood, and it really helped. They all said they understood and we worked out the best and worst times for me being hyper or irritable and what helps me when I’m feeling like that. I figured out that even just the phone ringing causes me to be flooded with adrenaline for ages and so I’m really snappy when I answer the phone - so people now text me before calling so I’m not on a horrible jittery high every time the phone rings unexpectedly.


    The appearance changes are hard. I need to get some new glasses but my face changes shape considerably through the day so I’m trying to figure out the best time to go to the optician so I don’t end up with a Dame Edna Everage look. That said, it’s been good to notice that I don’t always look the same so it must be the prednisolone effects rather than me looking like this forever: I look like a giant red radish when I wake up, a pale gaunt person in the middle of the day, and a greedy hamster by the evening.

    Keeping a sense of humour: definitely needed, although not always easy. I’ve had to laugh about the things I’ve been doing: putting a coat hanger in the fridge (it fits very nicely), falling over on to the bed when I try to get dressed, obsessing about broccoli recipes and how many ways to eat potassium-rich foods, forgetting what I ate only five minutes earlier...

    This forum: when I’m really worried there’s an answer here. Someone at some time will have experienced what I’m going through. I’ve read a lot of accounts of people’s experiences here and seen that things do get better - but they take a while and the path will have twists and turns. The variety and breadth of what people describe also help me understand that this is not straightforward for the medical specialists either - we present in so many different ways with atypical and overlapping symptoms that it takes the doctors a while to come to a firm conclusion. My symptoms are atypical but I’m fortunate in that my consultant is still treating me with the full recommendations to cover all bases. I’ve also found Kate Gilbert’s book very helpful and dip into it frequently. 

    I’m sorry this is a bit long but I wanted to write while I’m thinking straight. Who knew that 3am would be my best thinking time? 

  • Cloudgazer6 - do please cut and paste this superb summary into a new thread - one which it is then easier to find again. There are far fewer GCA people - because it is a rare disease and this is the sort of thing that GCA patients need to be able to read. I can write it because I know it - but I don't have GCA so it doesn't have the same meaning, it's theory for me.

    I'll say it here even though I know few people will see it: when you change tack with a question or write a really good response like this in the middle of a thread it is unlikely to be seen by many people - the notification system on this forum is so user-unfriendly! They basically just go to the people who started the thread and the person you replied to - I think anyone else sees it by accident! Every few days I go through every thread so I do see them but most people don't. So please - don't be afraid to start a new thread!

  • Thank you so much for sharing your feelings with me you sound very similar to where I am too! 

    I woke up exhausted today but made myself get up and go to work I had a good day considering how I felt first thing and after reading so many helpful posts last nigh I was filled with hope but by early afternoon I was so tired  I am home lying down feeling awful  cried my eyes out when I saw how horrible I looked in the mirror  2nd day of 20mg under instructions from doc temples feeling tender still all so daunting ! 

    When you described your face I did smile as mine changes so much during the day too! 

    I am taking a few days off now as I know I can't physically cope right now and need to rest and hopefully this will help 

    I have a very good boss who is very supportive so I am trying to work when I can at the moment to keep Some kind of normality in my life that has been turned on its head 

    I know I need to accept that there is no quick cure for this condition and I need to be more realistic about the treatment it's just that my rheumatologist said he wants to get me off steroids as quick as possible and maybe this has given me false hope I just don't know! 

    Thev forum is amazing so glad a friend recommended it you realise you are not on your own there are so many people who are feeling like you or have been where you are and have come out the other side 

    Best wishes and look after you 

  • "my rheumatologist said he wants to get me off steroids as quick as possible"

    I'm fundamentally a very nasty person: one day HE may develop GCA/PMR and he will find that in either case you can get off pred when GCA/PMR are ready. If you are very lucky it might be a couple of years, if you are moderately lucky then 4 to 6 years is more likely and if you are really unlucky it'll be a lot more. I've had PMR for 12 years, I've been on pred for nearly 7 years - and it still hasn't gone. I've been down to 5mg,I'm back at well above 10mg. Do I really care? Not now - because life is for living well and I have a far better chance of that with pred than without it.

    I wish I had the slightest idea how this message can be brought home to the doctors who don't get it.

  • I'm sure your post Cloudgazer6 will be a great help to many on the start of their journey- it is very comprehensive and helpful. 3am is obviously a good time for writing!!!

  • Thanks, Jackoh. 

    I'm very happy for it to be used or reposted wherever it's relevant. 

  • Hello Wendy, Sorry to hear you are struggling I am on here representing my mum who is now 90 and in a care home after losing most of her eyesight to GCA literally overnight at the age of 88. We had never heard of it so not aware of the symptoms she too was put on 60mg which we were told usually saves the eyesight but in mum's case the nerves were already damaged and she is left with different vision in each eye, one she says is like there is a film across it, the other everything is blurred meaning she cannot see detail, hence she can't watch the TV and can no longer knit which was her only hobby, she is hard of hearing and not really interested in talking books anyway. She is unable to care for herself and her only pleasure is a radio which is loaned to her from the blind association. 

    Prior to going into residential care we cared for her for 4 months during which time she had a mini breakdown and became extremely depressed to the point she didn't even want to talk to us, we were told it was mostly due to the high dose steroid, it was incredibly hard to watch our mum who had always been one of the strongest women we knew change so drastically but understandable as we cannot begin to imagine what losing your eyesight must be like especially so quickly.

    Initially mum would'nt come out of her room in the home due to confidence & anxiety issues but 2 years on she has made friends & now sits in the lounge for part of the day, she has been on a reducing dose of pred (which has gone up & down) currently it is 8mg, we visit every day & although she still has some anxiety issues she appears to have come to terms with losing her eyesight. 

    Unfortunately you appear to be at the beginning of your journey but as everyone says it will get better, hopefully our story will help you to understand how important the steroids are to control the condition and ensure your eyesight is saved, the side effects of the steroids are unpleasant and extreme but please make sure you are referred to a rheumatologist as they are better qualified than your GP in the management of this condition, dropping 30mg in one go does not sound correct advice.

  • Hi 4sibbs, 

    So pleased to hear your mum is progressing as well as she is. I remember when you first posted, having lost right eye it really resonated with me. As I said then, she's lucky to have your support. It very difficult for families as well as patients, especially at the beginning with the coming to terms with things plus the high Pred effects! 

  • So nice to hear from you - golly, is it 2 years? I'm pleased your mum has been able to adjust to some extent. All the very best for the future.

  • hi I am sorry to hear your Mom lost her sight and went through so much, I am glad she seems happier now,

    I do know I am lucky to have not lost my sight and when I am feeling rational I know I need to take the steroids to control the condition.

    I have got a rheumatologist who I see regularly, he set me a plan to reduce steroids as quickly as I could and its with his guidance I am reducing now. I am a little worried after reading many of the comments saying it is too quickly because I really don't want to relapse I feel bad enough now do I follow his advice?

  • Hi again Wendy. 

    Why don't you try reducing to 25mg and see how that goes. The drop from 30 to 20in one go is too much. 

    You say you see Rheumy regularly, but how regular? If you have a couple of months before your next appointment, you may be able to get to 20mg as instructed, but in two drops of 5mg rather than one of 10mg. 

    Anything's  worth a try! 

  • that sounds like a good idea should have tried it  I have already done 2 days now of 20mg although I feel exhausted today not sure if its meds or not and my temples feel tender

    I see my rheumatologist every couple of weeks and I can ring and leave him messages and he always gets back to me I can also have bloods done every other week too just really don't want to have to go back to beginning again

  • A quick question about this very useful tip: how many days would you take 25mg for before then dropping to 20mg?

  • Personally when I was doing drops at this level, I stayed at each one for about a month, agreed between self and GP. But a week should be enough to know whether the lower dose is okay for you. Although two would be better. You may get steroid withdrawal pains which come on virtually immediately, whereas a flare can take up to a week to appear. Sometimes difficult to tell the difference, especially at the beginning. 

    The problem is, if you reduce too quickly, you can never be sure that at each level you still have the inflammation completely under control. PMRpro compares it to a bucket of water with a leak, you get a drip, drip, drip effect each time you reduce, but you don't really notice it, until wham! you've gone too far and all the water gushes out. In PMR or GCA terms a flare. 

    Another thing, you might have blood test regularly, but they don't always reflect what's going on, sometimes they can lag behind, so your symptoms are the key. 

    Hope this helps.

  • Thank you - so helpful

  • Hello I just feel very tired not sure if it's because I have done a full week at work this week or the effects of reducing pred! All still very confusing bit light headed too ! I don't understand what the steroid pain is  

    is it similar to symptoms of illness? Sorry to ask so many questions 

  • You could be tired because of both work and pred reduction, although as you are still well above 7 mg physiological level it shouldn't be because your adrenals aren't working (they won't be yet!).  Are there any other factors which might contribute to fatigue, like low iron? Pain felt with pred reduction is similar to pmr.  I know you were diagnosed with gca, did you have pmr pain as well - pain and stiffness in the muscles?  Pred reduction can cause this pain but it will go away eventually as body adjusts to lower dose.  If pain increases over several days it's a sign the dose is too low to handle inflammation and will have to be increased.  This is one reason a very slow reduction is recommended because it makes it much easier to find the lowest dose that works for you.   

  • Hi Wendy,

    Don't ever apologise for asking questions, that's why we are here. At most of us, even those that have been on a long time still remember how daunting and bewildering the start of the journey was. 

    Your tiredness is probably a combination of a long week at work - can't imagine how those of you still working manage it! plus the reduction in Pred. In the early days when I reduced, I felt absolutely shattered for the first few days, short tempered and light headed, and just felt everything was just too much! That was how my steroid withdrawal was, but not everybody is the same. 

    I appreciate it may not be possible, for all sorts of reasons, but is there any chance of you working part time for a little while until you feel better able to cope? You certainly need to let your co-workers and management know you are suffering from a serious illness, and be aware of your situation. 

    Your current symptoms sound very much like withdrawal symptoms, and if so hopefully should go after about 4 or 5 days when your body has got used to the new dose. What people don't realise it's like a drug addict coming off their addiction and going through cold turkey treatment. The doctors don't seem to realise that either, unfortunately. 

    If you are one of those people particularly sensitive to Pred withdrawal, it might be an idea to try and wean down from one dose to the other over a period of 2 to 3 weeks rather than an 'overnight' drop. 

    Try and have a restful weekend, most of the household chores can wait! What you need is some pampering and TLC - even if you have to do it yourself, but hopefully you have someone who can spoil you! 

  • Thank you so much I am feeling exactly how you describe your own pred withdrawal which is reassuring for me 

    I have got a great boss who has been very understanding and told me to do what is right for me if I need time off I can take it which I might need to do next week 

    I am in this dose  now for 4 weeks and will ask my rheumatologist to give me 2.5 and 1mg doses next tine I get my prescription and will reduce slower  if it helps I am willing to try anything ! 

    I am going to take it easy this weekend and do as little as possible and yes luckily  I have an amazing husband who is trying his hardest to understand this illness and do everything he can to help me even though at times it must be so hard to live with me ! 

    Enjoy your weekend too! 

  • Good, glad about your boss, and your husband. It's very difficult for loved ones when we don't know what's going on ourselves and therefore find it doubly difficult to explain to others. No matter how much they love us, they can't really understand our problems. I found that with my late husband, he had chronic heart problems for many years, and although I loved him dearly I didn't always 'get' how he felt some days - until I got GCA!

    Tell him you will get better, and that you love him for putting up with you being a grouch and a pain at times, and one day you will be back to the woman you once were! 

    Take care. 

    Ps good idea about getting different dose tablets! You're already taking control! 

  • Thinking of you, I am really, be kind to yourself. 

    Kind regards


  • Hi Wendy-woo2

    You are only 2 months into your diagnosis of GCA....be patient....the symptoms of prednisone really do lessen! Most on this forum have PMR or both PMR and GCA.  The experiences are not completely the same with each person. 

    I was diagnosed with GCA (and only GCA) at age 73, 10 months ago.  I am fortunate in that am retired and do not have to cope with a job in addition to the GCA.  Initially on 60 mg which took away the incredible pain in just a few hours, I just today started on 9 mg.  At the beginning on the high doses I did not feel depressed, but gloriously carefree and giddy...I am a natural born "worrier" and this new euphoria was so enlightening that in order to remember how I felt when I didn't worry, I painted my front door purple so that every time I drove into the driveway I would be reminded of that feeling.  I am normally frugal, yet on prednisone I went out and bought tons of new clothes on summer sale to accommodate my enlarging figure! 

    Bruising, definitely.  I fell on a sidewalk, one month into the medication and the bruising on my face, leg, and shoulder was horrifying.  It took a long time to heal and the skin became very thin, so that I had to be careful not to itch it or.....Sleep was patchy and usually I awoke with tons of energy at 2 am.....Lots of work accomplished by morning!  Blood pressure rose.  I became pre-diabetic.  Leg cramps and hand cramps occurred daily.  Naps needed every day.  I felt that I had no control of my physical condition.  So I became determined to find what I could do to help myself feel better.  I  am normally of medium build and active.  The only thing it seemed that I was able to control was what I ate and my physical activity.  So after breakfast I would go for a 2 mile walk.  And I began to carefully my intake of carbs and sugar.  My calcium intake increased and I discovered the joys of almond milk, which is high in calcium.  But by noontime I was ready for a nap.  I put on a few pounds, but not many, and my face did not swell.  By January I was down to 11.5 mg and I felt like I had crossed a bridge.  No more need for naps.  My walking had now increased to two walks a day and I wear a pedometer which I recommend.  I am now up to 5 miles a day and in the 10 months I have only gained 5 pounds.  Sleep is back to normal.  And I am enjoying being out in the garden weeding, etc. and remembering that last year I didn't have the strength to do this!!!  Give yourself some things that you can control to make yourself feel better.

    As for your heartburn, ask your doc for medication for this.  I take omeprazole (prilosec) for this and also take my prednisone with plain unsweetened Greek yogurt to coat my stomach.   Taking care of you is now your most important task! 

  • Thank you all so much for your kind words and the help and support you offer on here, we are a close family which does help. 

    Sorry Wendy I'm not qualified to advise on pred reduction but if you are under the rheumy they should know best they usually manage the dose according to the results of blood tests, mum did manage to reduce to zero but only for a few weeks then she was put back on 10mg with the intention of reducing 1mg a month but that hasn't been possible every month it is slow but mum accepts she needs them and the side effects are minimal now. You will get a lot of help & support on here, the way you are feeling now won't last forever.

  • We can all sympathize because we've been there.  The anger and the depression are "normal" reactions to this disease.  You will get through it and you will get stronger and we are all here to help.  Having a group like this is wonderful - they are so supportive and you can say and ask anything without feeling silly.  Take care of yourself.

  • thank you I felt lifted yesterday after talking to so many helpful people who actually knew exactly how I was feeling it helped so much

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