so it's day 2 of the pred increase and instead of feeling better or the same..I feel bloody awful. jaw pain. indigestion..even with omeprazole..and fe3ling like bad flu .
eye sight still blurred but slightly better got Another appointment for Tues.. I'm hoping things will settle b4 I head to the lake district in couple weeks.
the question is... I know if I don't take them I can loose the sight in my left eye BUT...is my right eye also at risk...I Darenth ask the rheumatology lady or the eye clinic...?
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Alliekat65
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That’s desperate talk! Yes your other eye is at risk without Pred. You can’t just stop anyway as you would very likely have an adrenal crisis which is life threatening.
Regards the indigestion, have you tried a different sort of med such as the H2 antagonist type Famotidine? Omeprazole isn’t for everyone. I couldn’t get on with it at all and in the end persuaded the GP to prescribe coated Pred. It was a game changer when coupled with bedtime Gaviscon that I bought myself.
Generally, are you trying to do too much on a daily basis. I found with GCA you can’t just take the pills and not make any adjustments. Are you trying to work?
I work full time on mental health ward. and the answer is probably yes. . I struggle to be still .but then I will have a very lazy day. I think I will ask. about something else ..I'm sorry it sounds bad . i thought id be feeling better. i cant get my head around this..I'm just sad I'm not at the 17.5 i was meant to be..and when I say to my boss . they've put them up i get a look of...really ??I am sorry just rubbish day
I suspect Snazzy will agree with me when I say YOUR mental and physical health needs to be a priority at the moment. GCA is a serious systemic illness and really you need to behave like a poorly person for a while. The illness itself is more than enough on its own to justify sick leave and then on top of that it needs a really hefty medication to protect your sight. Not to mention the psychological effects that come along with such an illness.
I am slowly learning this lolI have spread my shift or do them in a short sharp block and have more time of. but find myself feeling ..jittery. if I try and rest..we have just booked to stop halfway from here to lakes. just so I get a break...
it really doesn't help trying to explain it over and over..when it's still new to me..
but again thank you all again for your help and advice
And no to climbing Helvellyn!! There are many lovely quiet places to visit away from the tourist trail….
Getting the work / time off balance is really hard. And hope your employers can give you sick leave in the first instance to allow you to think through your options and the first stages of coming to terms with your GCA.
I had the same thoughts planted in my head by a reduction plan that had no basis in me or my life. One can become obsessed with reaching targets but it is totally pointless, as it is a paper exercise and not reality. It’s not the dose of Pred going down to zero that gets you better, it gets to zero *when* you are better. That is your objective.
Sadly, if you keep flogging your body it won’t heal like you want it to and you’ll be forced to be on high doses for longer. I had to take long term sickness from my career and then made the decision to leave at the age of 54. High dose Pred with all its mental and physical effects and rampant inflammation are not to be trifled with. One does feel alone because of ignorance; if you were on chemo or had several fractures there would be no question from them. Many of us have had to face the same lack of support so understand. We also understand that at some point something will give and you need to decide what that will be.
I have been thinking of early retirement. my job can be very stressful as I work on a PICU unit. the guys need ALOT Afrom staff . I love it but if I'm honest my body is telling me enough. . I used to do 62 hours easily but now 37.5 make me rough. at 58 nearly 59..I didn't imagine slowing down just yet..but as you all say I can't put my body through this and expect to feel great.
and I did say to one of my staff the other day....if I could explain how I feel 8 would.. but its like a migraine with covid exhaustion and fear while watching a horror film..
when I wake up I'm so worried I won't see anymore and she said...don't be silly and walked off...
Obviously ignorant - because that was a real risk pre-pred and she is doing no-one any favours by dissing you. She doesn't need your support if she can't be bothered to inform herself.
"its like a migraine with covid exhaustion and fear while watching a horror film.." - I think that is a brilliant description.
Virtual hugs from here - if your colleagues aren't offering.
I think you really need to go down the early retirement route if you can… I know it’s not easy for everyone, especially in the current economic climate.
But you only have one life, so you need to make it as good as possible for you -in particular - and your loved ones… and with a throw away comment like that from your colleagues/staff you certainly don’t owe them any allegiance.
Time to think of yourself… and much as you like your job or feel valued [although that seems to be in doubt] - no one is irreplaceable in the employment world.
I had to take early medical retirement from my teaching job when I was 52, not due to PMR but my OA and after a number of years of severe pain and stress. I left my office on the day the Twin Towers went down, I missed/miss the children but taking away that daily, continual physical strain and stress did give my body and mind the chance to start a healing process.
yes I must admit as the alarm went off today. I was seriously thinking it maybe time. I'm usually up at 5.15 to walk dogs but even with alarm 45 min later I'm wacked
Probably for starters, you need to ring in sick, you don't need a doctors "fit" note for a week, but the get your doctor to sign you off for longer, ideally a month, and then see how you feel after that. You can then make the retirement decision when you are not feeling so stressed and ill.
Afraid so - IF you lose the sight in one eye, there is a 50/50 chance the other will go within a couple of weeks. DL said it was the longest 2 weeks of her life. It is because the region of the nerve affected is common to the supply for both eyes.
Get some gaviscon down you for that indigestion, Alliecat! You will feel rough. Time away will help - change of scene, space to rethink where you stand re your career, start readjusting to different routines and pace. I always used to put the pupils first when I was teaching, before realising that nobody is indispensible. Look after No.1 and I wish you all the best.
I think you need to ask on Tuesday if they would sign you off. You have to look after you first and you sound like you are at your point of realising that. I'm shocked by your colleague particularly as you all work in mental health, and not I would want someone like that looking after me.
Deciding to stop is really hard I know and the financial implications that go with it, but what I did find is I don't miss it all all. More the money and the chat!
Take all the time off you can. I know people on here have got medical retirement too. But you must come first.
And give that description you gave your colleague to your consultant on Tuesday.
When PMR hit me I was off sick for 6 months, the first 3 while a diagnosis was being made. I went back to work on reduced shifts after an interview with Occupational Health. You need to get over the way you are feeling by having time off.
I am filled with sympathy and horror at your predicament. It will be difficult to think clearly on high doses of Pred. Jittery! I know that! You lose what is yourself and feel a desperate need to try to normalise. If you were giving advice to yourself while you were feeling your old self you would go for sick leave. Can you imagine what you would have to adjust to if you did lose your sight?
I promise you will find yourself again once your body gets used to the medication. You will find yourself enough to have fun and feel in control and good. Just take the obvious route now. Don’t look for understanding from those that have never experienced or heard of PMRGCA. They can’t possibly understand! You are having enough difficulty while feeling every bit of it.
I haven't much new to add except I note you were used to getting up at 5.30 to walk the dog, then presumably going to work in a PICU which is one of the most stressful jobs there is - both physically and mentally demanding. And presumably you are not that long through the menopause?
Carrying on full time is going to be really detrimental while trying to stabilise GCA which is considered a medical emergency. I think you would benefit from a complete rest for a while, again both physically and mentally. Then either early retirement or if you love your job and need the money, go part time once you are feeling better, even full time again at a later stage. GCA is temporary after all, and you are young so it is about looking to your future.
As you work in mental health, you know the score, what would you say to a you?
I totally endorse the suggestions from Bcol. I can not imagine that working in a full time and stressful job can do you any favours. Many of us, who had to stop work, felt they still had something to give but no resources to draw on to do so. Leaving was a wrench, but for a life after work - a necessary step. You need time and space to take stock. Hopefully time off work and your holiday will give you that. On a lighter note - when you come to the Lake District bring wellies and water proofs!!
I took early retirement from my job as a music teacher, I loved my work but I had to put health first . I didn't get medical retirement as Teacher's Pensions stated that I would get better eventually! Luckily we could afford for me not to work . It is now 16 months since I stopped and I spent months convalescing, ie doing nothing . I am now doing really well on a low dose of pred and enjoying walks etc again . I really believe it's because I stopped work that I am doing well . Put yourself first , it is hard but your body will thank you for it x
I know you want to carry on working, partly because you feel needed, but someone explained it to me very well once.
If you want to see how much you and your contribution to the work will be missed, get a bucket and fill it to the brim with water, then scoop out one teaspoon of water and see how big the hole in the water is. That's how much difference there'll be from work's point of view.
None of us is vital to carry on the work. We all get old and have to retire at some time. When we do someone else who's younger and fitter will always be there to take our places.
So start thinking of yourself and your health now, and put that first. The world won't stop, nor will it even slow down, but it's time you thought about getting off the high speed conveyor belt that your working life consists of.
Thank you all very much . you are amazing people and I don't know how I'd manage without you.I'm going to take my holiday as reflection time. sit back and see wat needs to be done to get me well.
By now you may already be sorted out (only just seen your post)You may need something better than Omeprazole or a higher dose of that, there is Rabeprazole 20mg which I take after Omeprazole & Lansoprazole did nothing. You could perhaps take Gaviscon Advance but I’ve only ever had the other symptoms when I’ve been on a high dose or prolonged dose & stopped them suddenly (they shouldn’t do this but despite the Dr saying it’d be OK my body said otherwise. Check everything out with your doctors though - don’t self medicate until they assess you
You should NEVER stop a PPI suddenly - it can result in rebound increased production of acid which can be very unpleasant, It surprises me just how many doctors are blissfully unaware of this!
so saw the eye clinic and again want to start dropping steroids from 40mg down to 30 on Friday.appears I have thrush in my mouth. so am on MORE tablets
then she mentioned talking to rheumatology about methotrexate?
No use asking in the middle of an existing thread - next to no-one will see it. Start a new thread, make sure the title reflects your question and when you have posted look at the related posts. There are dozens about methotrexate.
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