I was 'diagnosed' after symptoms and blood test results with GCA/PMR and 40 mg steroids, reduced by 5mg over a few weeks. Got to 25 and symptoms recurred. Last week gp put up to 40, glad I found this group as advising smaller reductions and over longer periods. I was getting the 'get off steroids' talk by everyone, even though I was symptomatic. I feel so exhausted and weak. I was working but they were pressuring me to come in to office rather than work from home. I now have a 4 week sick note, I am scared in case I am not better. Any advice and support will be appreciated. Ann.
Confused and exhausted.: I was 'diagnosed' after... - PMRGCAuk
Confused and exhausted.
Written by
Bibberty
To view profiles and participate in discussions please or .
Read more about...
40 Replies
•
This is a long haul. No short cuts. Lots of research on this site. More experienced people will comment soon. Know you are not alone and this takes a long time to resolve....If ever. Be kind to yourself.
Thank you for your response I have found out more on here in an hour than I have since being diagnosed.
I am worried about my job long term and being unfit to work as I live alone.
And those are legitimate worries. Give yourself time to research and learn. There is no quick fix. If you had cancer, people would understand. This is harder as people do not know much. Just know you have to do less, move more slowly and above all expect less from Yourself. I am a go go go person. Took me 6 months to figure out to slow down. One thing in the morning. Rest. One thing in the afternoon. Rest. Nothing after dinner. This site will be so helpful.
Hi Ann. What job do you do? What type of contract do you have? What is sickness absence policy? Some of us have some experience on personnel / employment rights and might be able to help reassure you should you experience barriers from your workplace. At present the less stress you have the better to aid your recovery.
Thank you for your reply, it's good to get support. I am full time, work shifts. My organisation don't usually allow home working but had to adapt due to Covid. I worked from home until last week when I became too ill. This would have happened sooner if I was travelling there and back.
My manager said I would have to work from the office when I am better as it's not their usual policy to work from home, otherwise be 're-deployed' ( there is nowhere to be re-deployed to) this is before I am even fit for work, better for a phased return or a discussion about my health.
This has caused further pressure and I thought about speeding up the reduction process, but realise this can make it worse and take.longer.
If you are on a full time contract on PAYE and have been working for the organisation for more than a year then the management has a duty of care for your well being. Legally they need to make adaptations to enable you to continue to work, through instigating control measures as a result of an individualised risk assessment. The risk assessment should not be done to you, but with you. To simply say you cannot work from home, because that is not the 'norm' would not stand up under scrutiny. To offer redeployment, if there are really no options on the table, might be construed as constructive dismissal. I point this out so that you are aware that much can and should be done by your workplace.
However for the present I suggest you try to just give yourself the space afforded you through your sick note to rest. Forget work for the moment as anxiety will impede on your recovery.
We can give support re work at a later date. Rest (mind and body) is the order of the day at present.
Hi,
As you say you’ve got 4 weeks respite to think about work longer term.
It is recognised that GCA makes working more difficult and your OH & HR teams as well as line management need to be aware. It’s a long term illness, and they should be supporting you. As others have said there is information on here when you get to to stage of having to make a decision.
Is it feasible for you to continue working from home?
But initially concentrate on getting your symptoms back under control and resting as much as you can,
Thank you I now realise there is more to this condition than I thought. I will read more and take my time accepting and hopefully manage/recover from.
There is a difference in the amount and speed of reducing the steroids advised by doctor and on here, I will definitely listen to my symptoms, this forum and G.P/Consultant.
• in reply toBibberty
In Dec 2019 I too was diagnosed with PMR, Managed to get to 8 mg then GCA kicked in. So from 15 mg for PMR was immediately put on 40 mg to tackle GCA. In retrospect my rheumy told me to taper too quickly too. 10 mg every two weeks until I got to 20 mg then I listened to the ladies on the forum and reduced very slowly, by 1 mg each dose. Currently on 11 mg for one more week still reducing fortnightly. Soon I'll be reaching 10 mg I will take that for a month then reduce to 9 mg for a month etc etc. Hopefully, by next June 2021 I will have managed to come off them. If all goes well that will make it 19 months I'd have been on them, just five months short of two years. Had he not told me to taper from 40 mg to 30 mg to 20 mg every two weeks things would have taken much longer....I think he should have advised me to go much slower than this, but it's done now. I've only had to increase a couple of times to a slightly higher mg for a few days when I've experienced a prob. and it's worked for me. My big concern is GCA and not PMR as PMR can be treated with a much lower dose of Pred. My eyes have been affected by the steroids, nails, skin, hair and terrible dark moods, jitters and of course weight gain....hopefully, as I reduce things will resolve. If you're still working that makes you a lot younger than most of us on the forum.....less common disease in younger people.
Good luck and let us all know how you're feeling.
Anne
Welcome!!
This is a great site. I was so lost in the beginning and did not feel like I got the support I needed from the medical community, but I did find it here. I also started out with GCA and 40mg Prednisone. It is a long slow decrease and it requires patience so you don't start going on a roller coaster ride with your steroid dose. January, 2021 will be my five year mark and I am just lately seeing that 3mg might happen.
Best to you,
fm
Thanks for the reply it really helps as I had started a roller coaster due to people warning against steroid use.
I will go much slower as don't want to cause unnecessary flare ups.
I just have to gain information and get support to manage it, am feeling quite low at the moment, glad I have found this forum though.
• in reply toBibberty
The low moods and feeling grizzly are the worst...they're affecting me badly too. I try so hard to feel positive but just cannot work up any enthusiasm for anything. Only good thing I can report at the moment I seem to be sleeping well.
Anne
The hardest thing to accept with this illness is that it doesn’t get fixed by a pill and nobody can see it, in fact, people often think you look well. I was 54 and working when I was diagnosed with GCA. I thought a few months of Pred and then back to work. I soon realised that I had to devote all my time to getting better which wasn’t compatible with my work as a busy manager of a cancer help centre and part time nurse with a GP practice. Partly, I was ‘sold’ Pred as a fix, 18 months and then back to normal with no info at all on withdrawal symptoms, side effects and at the end, adrenal insufficiency, not to mention effects on muscle. Pred prevents the damage but it doesn’t stop the autoimmune attack. The only way I found worked was to nurture my mind, body and spirit and accept it.
Reducing too fast is the road to misery because one can end up yo-yoing dose and it is said that if one keeps going back up, it can be less effective than before. Even with the risk of this and relapses, many docs still seem to fixate on Pred as being the bringer of all ills. Often obesity and diabetes is presented as inevitable instead of telling the patient to go on a low salt, very low carb diet, increase potassium and magnesium to name a few. The patient is often stuck with the choice of going against medical advice or doing what feels ok. High dose Pred can make you feel weak, jittery, over active but exhausted. In the early months, the illness can do the same. Nearly everyone doesn’t know about it, even some docs, so while you feel rubbish you have to become your own warrior and jolly well tell people what is what. You have a serious systemic illness so you have to allow yourself to demand that you are treated accordingly. There are no easy answers and some difficult choices may have to be made, but you do get better, just not at the speed we want.
Thank you this sums up my fears as can't stop eating, have bloated quickly and can't exercise at the moment. I know this sounds vain and less important than the whole picture but it all adds up as you and others ones here know.
I will look at lower carb and magnesium, potassium supplements. Any positive advice is appreciated.
I swim ...recommended by my physiotherapist. If you can find a warm pool. And just float. As you get along this road, you can swim more.
I could barely exercise while on high dose Pred and then suffered severe muscle wasting. I did not put on extra weight by going on a super low carb diet which meant cutting out all pasta, bread, rice, maize, potato and flours. This cut down the level spikes in blood glucose that are caused by Pred. I also had to have virtually no salt or else I bloated out with fluid retention. I ate plenty of protein and oils so I didn’t feel the lack of carbs, but I did eat masses quite happily. I concentrated on giving my body the best I could. It really helped feel I had some control of a situation that felt anything but.
Hi Bibberty does not sound vain at all ! im was on 40mgs of pred , working my way slowly down , now on 30 mgs . But before then i piled on 18lbs in a very short time ! Hunger was my worst enemy ! Dont get me started on sweating and moonface ! Loads of people have helped on here with links tips etc . im finding out new tips and help every day. Do your research , lots of things help while you go through this horrible journey . Good Luck. Best wishes Viv x
How long did it take to get to 30mg and how much did you reduce by?
Many thanks
Ann
Hi, I'm now on 30 mgs , I've been dropping by 5mgs a week .Tomorrow will reduce to 25 . It's a trail to see if I can get to 20 mgs. I've been on Pred before but at a lower dose. By all accounts this is the easy bit, I'm fine atm. My Dr and I will work out a new taper when I reach 20mgs . Things will then go far more slowly. I'm happy to do this, I just don't want to be on a high dose. I was on 40 for 6 weeks to help to get rid of the inflammation plus other things . I gained 18lbs in 5 weeks , so depressing !😟 but trust me the hunger pangs do get better as you drop. I'm now really watching what I eat. My Dr is great she told me when I was in chronic pain to concentrate on getting better then tackle my weight. Check your vitamins , be careful what you eat , but don't beat yourself up, you will be able to cope with things when you are physically and mentally stronger ! Chin up , it will start to fall into place .Don't normally write a book.about this Haha😉 but your post struck a chord with me !.let us know how you go .Best wishes Viv.
SnazzyD is spot on. Also make sure your vitamin D intake is enough. (D3)
(Me = GCA since Dec 2016. Pred now down to 2mg - 2.5mg alternating. Still not back to former fitness but miles better than in the early days. Remember tortoise and hare - tortoise won in the end. So don't be impatient, don't lose heart, and keep your eyes on the light at the end of the tunnel.
Best of luck.
PMRproAmbassador
If there is any chance this really IS GCA then a GP is totally out of their depth and you need a specialist. If this is GCA, you were started at the bottom end of the range. You should have been kept there for at least a month and any reductions should have been by 5mg to and 3-4 weeks there and the same with any subsequent reduction.
People will tell you about all the adverse effects of pred - but you can point out to them that without pred you had a worse than 50/50 chance of total and irreversible loss of sight. Almost nothing pred can do matches that. What you do have is a serious systemic illness that you can't play about with and for which you must take a high dose of a serious drug.. At least you now have a sick note - don't hesitate to seek another if you need it.
If you DID have Covid then I suppose there is a small chance this could be part of long Covid, they know that it can cause vasculitis but there is no way of knowing.
Maybe this will explain the minimum timings in an approach to GCA, pred and tapering:
rcpe.ac.uk/sites/default/fi...
It isn't perfect but it better than what you have had so far. Dr Quick still uses this approach but adapts it for the patient as required.
Where in the UK are you? Maybe we can recommend a rheumy who will see you - I do know some are working and GCA is, like a stroke or heart attack, classed as a medical emergency. Something that must be dealt with quickly and not by a GP.
I had the blood tests which showed the inflammation. I had one telephone consultation with a Rheumatologist just as I started the reduction process, I am going to call them on Monday to try for an appointment before October.
I have all the symptoms and it has been more difficult due to current pandemic. However I will ask questions and try to improve my wellbeing. Thank you for your reply.
Definitely a long job, I was so ill when first reducing - I’m only reducing by .5 mg every six weeks and I still have about 10-12 days of utter exhaustion and other symptoms, completely wipes me out. Comes on about 5 days after reducing. It’s very tough and weird symptoms so your not alone. Even my GP says no body manages it in the time scale expected.
Hi Bibberty. This is more of a further question for our team of experts. If Bibberty is on a high dose of steroids and under risk of Covid should she not be sheltering away from the workplace? I am out of the loop thankfully but still follow the occasional post.
I think the view on steroids has actually changed somewhat - since they are key in the management of Covid infection to prevent it progressing to the second and third stages. They probably don't make much difference in you catching it in the first place - no-one has any developed immunity to it until they have had it. They were originally concerned that steroids would interfere with the immune system fighting off Covid once you had it - in fact they are used to prevent over-reaction of the immune system to the infection.
However - despite the government's insistence it is safe to "go back to the office", real experts are pointing out that if it is possible to work from home or a local hub that should be done. And if a company managed it when they were forced to - they can now.
Hi, I to am off work at the moment I thought it would be a few weeks and I would be ok to go back to full days at work, but thanks to this forum and hearing from other people I realise that I have to take things slow. I am learning to accept that I need that afternoon nap and it's all part of the illness. As others have said be kind to yourself, take the time you need. I no it's difficult with work, I too am going to have to have that conversation at work about my hours but for the moment I am concentrating on dealing with this. So take your time too and be kind to yourself ❤️
Hi Bibberty. I'm 16mths since diagnosis and BOY what a journey of revelations and insight it's turning out to be! Like many of us....I had no useful knowledge of the condition or what was ahead, and only discovered this site a short time ago...but thank goodness I did! All your previous responses offer such good insights and advice and the support and knowledge you'll obtain here will surpass anything you'll receive from GP's or rheumatologists.
I've always been totally against taking ANY form of medication unless ABSOLUTELY necessary. I was told categorically that taking steroids was now one of those times (at least the medical professionals got that bit right!!) It's been incredibly scary with so many different 'side effects' and symptoms emerging from one week to the next. The fatigue and loss of 'fitness and well-being' has been hardest to accept as I've always eaten healthily, attended a gym regularly and don't drink or smoke. I very quickly realized there were now significant limitations to what I could reasonably expect of myself and went on long term sick leave from the school where I work. (HR were involved and supportive as were my SLT) During that time, I've discovered this site, learned to manage some of the emergent health issues with better results and have finally returned to my job in a nursery class, working 5 mornings a week. It's very early days still and I don't know if it will be sustainable, but my first week has gone well and I feel good. I am however under no illusion that this may not work out for me, and fully prepared to either cut my hours or even give up work if it becomes necessary. My health is the most important thing....but that includes mental health too!....so I felt I had to give it a go.
I've learned so much about this condition over the past months and managed to find some strategies that work for me. For instance, I can quell the hunger pangs with ensuring I have regular meal times and a 'suitable' healthy diet. (Much advice gleaned from this site!) That in turn can help to minimise conditions like obesity, high blood pressure and diabetes emerging. I also drink lots of water to encourage healthy kidney function and do MODERATE exercise to keep things ticking over. I can't emphasize strongly enough though, that I now really listen to my body and don't 'push' myself beyond what I now know to be within my current capabilities. I think it's also important to realise that despite some of the changes you can make to minimize side effects and symptoms, strategies suggested won't necessarily work for everyone and so you must still be vigilant in keeping up with blood tests etc to monitor blood sugar levels, etc.
This is a long path we're walking, but we're not doing it alone, and for that, I'm so thankful.
This is a wonderful site and you'll be well supported. I'm sorry this is so long!....but I hope it's been helpful. I wish you all the best in moving forward. You'll be ok if you listen to some of the excellent advice you'll find here from some very experienced and knowledgeable people.
Thanks to you and the others for such helpful advice and kindness.
I can't imagine how I would have got on without it as I had no guidance at all really.
I am going to reduce the processed carbs and sugar as this causes me to feel hungry and crave unhealthy foods.
I have been in bed for nearly two days and am going to do some light chores.
Thanks for everything.
If it's any help, I keep low carb but do have some as they are a valuable energy source. On the few occasions I do eat them I always choose wholemeal options (wholemeal- bread, pasta, rice) and make sure I have plenty of protein....chicken, fish, quinoa, eggs, nuts. (Protein helps keep you fuller for longer and also helps build and protect muscle tissue). I also eat lots of fresh fruit and veg and keep away from sugar and saturated fats. Life would be miserable without a treat so I do occasionally have some chocolate or a 'treat' but this is not on a regular basis. I drink lots of water and no alcohol. I don't smoke either. Eating healthy won't cure PMR/GCA, but it will help your body be in the best physical state it can be to deal with the effects of the disease. I find a moderate amount of daily exercise helps too....I have a walk every day.
Sorry to hear about the pressure you are being put under by your work. Most unhelpful for you given your serious health situation. If you are a member of a Union talk to your rep ASAP. If not begin to make notes of all discussions with your manager/ date & time these meetings. Also speak to your doctor re unrealistic work expectations so there is an audit trail in case there is a tribunal for unfair dismissal initiated by you in the futureHope this is helpful.
Hi Bibberty. I am glad you have found this site. There is so much information and support available. I have a diagnosis of GCA and am still in employment. However, since first becoming unwell last December, I have been signed off work. I have made progress but have had some flares during steroid tapering. My manager made a referral to OH which was really beneficial. My aim was to return this autumn on a phased return with reasonable adjustments in place. However, due to a new health issue, I have now been signed off until early December. I am now looking at applying for early retirement on health grounds. As others have said, rest over the next four weeks and try not to worry about work, although I know how difficult this is!
Your employer should allow you to continue working from home. Alternatively, could you work from home and go into the office once or twice a week when you feel a bit better?
I too have a similar situation with redeployment. This is unlikely to be offered to me as there are no other job options currently.
Look after yourself. Your health is most important. Keep us updated on your progress.
Don't despair! I was in exactly the same situation a month ago. My G.P. reduced prednisolone too quickly and my symptoms returned. With the advice from the forum I took control and am now tapering very slowly. I had to go back up to 40 mg, which was what the doctor originally prescribed. It's a long road, I know, but you'll get there!
I know we are all different but am wondering are you still on 40mg or have you started to reduce? How long should I wait until reducing. I thought about going to 37.5 or even slower by 1mg, I don't want to yoyo backwards and forwards.
You can not go from 40 to 5 in weeks with success. 1 mg each 6 weeks is a lot. When you reach lower levels you will know when you have exceeded your reduction amount. Pain returns within 48 hours.
Hi. You may have a legal expenses cover as an “add on” to your buildings or contents insurance. This sometimes includes employment cover. It would be worth checking this out. If you have cover, there will also be a helpline where experts can tell you where you stand in a situation such as yours.
Hoping this may be of some use.
Sally
Not what you're looking for?
You may also like...
New to PMR and confused
Hello...new to PMR (diagnosed January 23) and grateful to PMRGCAuk pointing me this way. What a...
Confused
Well I am totally confused. Eight years ago I was diagnosed with PMR through symptoms and raised...
Exhausted and totally scunnered.
Apologies in advance for the moan ahead but I have to tell someone. Today I went into Glasgow to...
PMR now totally confused!!
Hi
Haven't posted here for some time but would appreciate some advice. Was diagnosed with PMR in...
Exhausted
Hi
I was diagnosed in December with PMR, was put on 15mg of Predosline then told to drop to 10mg...
Related Posts
Newly Diagnosed and Confused About Steroid Reduction
Still confused
Confused still
ConfusedModeration team
Fran_BensonPartner
SophieMBPartner
