Hi,I’m a 72yr old ex nurse. On 23rd Dec 24 I phoned my optician with regards to much reduced vision in left eye. He said he had noticed start of cataract at check 6 mths ago and thought this had just accelerated. He made appt for Jan 2nd. I had left side pain in face, lost weight, tired but didn’t link this to eye.
On Jan 2nd sent from optician to hospital. I had a slight fever and raised infection markers. Non English ophthalmologist said she thought I had arteritis and would need to see rheumatologist. Who knew you could get arthritis in your eye we said. I was started on 50mg prednisone and it wasn’t until day 3 that I learnt of GCA when dose was increased to 60mg The info I have been given is pretty minimal but Google helped me to find you and I am so grateful. I have had scans, TAB, MRI, bloods etc etc
At the moment my biggest struggle is with sleeping. The steroids have me feeling very wired and my mind doesn’t want to turn off. My first question to you kind people is, does it get better and does anything help? Waiting for a dexa scan. When I read the possible effects of GCA and the side effects of steroids it’s pretty scary. Any advice to a complete novice is most welcome
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NinnyB
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Good morning. I see you are in the UK so it being nearly 4am, means you are also having a bad night. Back in the day I was like you, pepped up on steroids seeing in the dawn. That was 2017 and I can report that it does get better and I am in remission having finally got to zero Pred dose in 2020.
This first bit is pretty hairy with the onslaught of Pred and so much to take in all of a sudden, just when your brain is going too fast to string two thoughts together. It sounds like everyone was on the ball and you are on the right track. Life will take on a strange new reality for a while but keep telling yourself it isn’t forever though I will say it’s longer than you want. The high dose weeks are the most difficult. I started on 60mg and then was on 40mg for 6 weeks before reducing. The Pred is doing a fantastic job of keeping your sight intact so you need to forgive its ways while your immune system has gone a bit mad and is attacking its own blood vessels. It will stop doing that when it’s ready, not when you or anyone else tells it.
While you are on high doses all you can do is get through each day, taking naps and not getting too hung up on 8 hours sleep a night. You need to accept that you can’t carry on as normal, for now. Most of us have to start saying no to people because rest is vital. Ha, ha, I hear you say. Well, do your best and try not to use that false energy madly doing jobs in the house. Be careful of driving because your attention and judgement may well be impaired. It can make you quite anxious and I was a bit paranoid I think but you have to keep telling yourself, it’s the Pred, not you and the dose will go down,
Do yourself a favour and avoid refined carbohydrates and reduce them generally and also salt. Start now before you blood sugars soar and you put on lots of weight. I cut out all pasta, rice, potatoes, flours etc and ate lots of protein and veg with a little fruit. I didn’t put on any weight and kept my blood sugars normal. Keeping your blood sugar stable helps with the raging appetite you can end up with. Salt reduction will help stop fluid retention. Lots of us have taken this approach.
You will get more replies and more coordinated than this one because I only have half a brain at this hour. I just wanted to reach out and give you something to start on before the UK wakes up. It does get better!
Yes, one can feel addicted. One reason is that Pred forces your liver to break down glucagon to make glucose. This raises your blood sugar even before you have eaten a morsel. The body doesn’t like lots of blood glucose because it’s damaging, hence diabetes is a bad thing. In order to get rid of the glucose it puts out lots of insulin, if your pancreas is able. This leads to a big drop in the blood glucose level and you then feel famished and desperate for more sugar because the body doesn’t like low blood sugar either. Low carb diets try to avoid this boom and bust by trying to avoid throwing more glucose into your system.
If you don’t control this you end up putting on weight fast and your doctor will be getting worried about your glucose blood test being high. At this point it is difficult to tell if it is just your blood sugar being pumped all the all the time which is the same effect as diabetes. Or if it is now actually diabetes and your pancreas can no longer put out enough insulin. One reason for diabetes is that your pancreas can just give up the ghost because it is being overloaded. If you were already on the way to type 2 diabetes before this might be a step too far. Another can be that your body just becomes resistant to insulin and its clearing effect doesn’t work as well. If you gain lots of weight, these factors are multiplied.
Some people wait for the effect of the higher dose to go down with time. You risk not getting back to normal if your pancreas and body have had too much to deal with and you become diabetic for life. Lots of weight gain has its own risks. Some people, try as they might end up on medication, but if you can avoid this it’s better.
That is so helpful.thanks. tomorrow I am really going to go back to a normal diet. Its like a chocolate beast has invaded me but your description is so good that I have to listen. This group is ace
You may find that a normal diet is not enough to stem the tide of rising blood sugars. In order to keep blood sugars normal and weight stable I had to give up pasta, potato, maize, rice and flours. I did start on 60mg but I had to keep to this regime until I got to well under 10mg. Even at that point I had to really watch it, even now. Everyone is different, but generally you need to cut carbs right down.
As you say so much to learn. My body just craves sugar and I've never had this before. Dropped 10mg pred so maybe that will help now. Thanks for caring x
Complex or not, carbs are still carbs and contribute to blood sugar levels - they may mot spike as much, but they may remain higher for longer as a baseline for the release of glucose stores from the muscles and liver.
Awwww Snazzy thats really thoughtful of you to send such a helpful message to Ninny at at 4a.m. It's a rotten time at the beginning you don't know what's happening to you and the shock is so unexpected.Well rest rest and more rest. Tell everyone sorry Im'e off to bed. Eat well no processed food [or little treats] don't fret over sleep read write and watch catch upTV. In warmer weather watch the birds feeding . Its not so bad waking early just rest in the day. Good Luck.
Two brilliant post to give you a positive outlook. It does take time but keep at it and you'll reach your goal. I too am in remission now since last May thanks to the wonderful forum. Good luck😘
Thank you, it does help to know I'm not completely crazy and others have felt this way. Yes I really must stop eating all the chocolate its as if I'm addicted to it. Your message of support means a lot to me x
The title of your post were my words exactly almost 12 years ago when diagnosed. Now been in remission for almost 8 years.
Yes, it is a lot to take on board, and lack of sleep can be an issue, especially early days and on GCA doses, but it does improve for most. This post, and the replies may help -
- it’s in the FAQs which can be found as a feature banner just under your post or in the pinned posts… do have a look at them at your leisure- there is loads information including a couple of links on GCA .
As you’ve discovered there always someone around to chat- so anytime you need help or just to chat we’re here …..
PS - just read your bio…. Holidays insurance shouldn’t be an issue from the company’s perspective - wasn’t for me, but at only 4-5 months in you should discuss with your doctor- it depends how active your GCA still is by then, and some are reticent about patients flying in the first 6 months..
So nice to hear you felt this way and doing so well now. I hope I can go abroad its my daughters hen do. I feel very lucky that my sight is intact albeit suddenly reduced in the one eye. You're a lovely lady to offer so much support to people like me and thank you doesn't say how much it means to talk to others going through this. I think my family think I'm back to normal but nothing about the way I feel is normal. Looking forward to reducing the pred next week x
Unfortunately many family and friends see what they want to see -not necessarily through lack of concern -but because you don’t look unwell.
As we are always saying, with an invisible illness-it is just that! Sure we have all been guilty of that in the past -it’s human nature.
This forum helped me early days. GP misdiagnosed me for 18 months -but both ophthalmologist registrar in A&E and his consultant were brilliant -albeit too late to help one eye, did save the other.
A silent illness, I like that and will remember it. Sorry you went so long before diagnosed correctly. I'm hoping my left eye doesn't get any worse. Thanks for the support x
Yes - above all, it DOES get better! You do get more used to the pred but the dose also falls over time. You have to hold on to the thought that however irritating and unpleasant pred effects may be, the ultimate adverse effect of GCA is total and irreversible loss of vision and the pred is protecting you from that.
You've heard from the two stars on the GCA side - both have been there, I haven't so won't add to their info or it will be overload.
As you have found, there is often someone around 24/7 but you will never wait more than a few hours for a reply.
Hi there and welcome to this amazing forum - even if it would be better you were not having to join us. You've got some great advice already and SnazzyD has said everything I was thinking - only so much better.
I got PMR over three years ago then GCA last December. So I too am currently on high dose steroids and often awake in the early hours. I've discovered going for a wee last thing (just before midnight) often helps me through but not always. Happy to 'talk' here if I'm awake.
Thank you, i only just worked out how to get replies and thought no one had responded. Now I feel so lucky to have you guys and be able to talk to people who get me. My family think its all done now, just take a few steroids then you're sorted. And they're a lovely family! Thanks for your kind words
Oh yes! I suspect the vast majority of us can sympathise. “So you’ve seen the doctor, got a prescription, going to take the meds so you’re sorted” Now back to our normal lives. “
Hi NinnyB it is a huge shock at the beginning and I thought my life was more or less over in the early days of GCA. It does get better once you are able to start reducing the pred! You have found this forum which is brilliant and the people here have helped me enormously, far more than medics I have come across
I totally agree. I have learnt so much about this from you lovely people. The doctors ran a barrage of tests say I have GCA and give steroids and then left me in limbo. I thought I was going crazy with strange thoughts, feeling wired and not sleeping but luckily you have all reassured me such a lot. Thank you
You've got really good advice and support so far. I just want to emphasize that most pred side effects can be mitigated, very often by changing some of our habits. For example my blood sugar got quite high, but I cut out all "white" carbs, and although the level never got down to completely normal it was never again high enough to be of concern, at least not from pred! This would probably have helped with weight control if I'd needed that, many do if pred increases their appetite. Also my doctor wanted to prescribe alendronic acid as a "protection" from developing osteoporosis. I insisted on a DXA scan before medication, and did a lot of reading. In the end I refused the AA and improved my bone density simply through diet and exercise and a couple of supplements, notably Vitamin K2 (not K1). Other things I couldn't do anything about, like increased ocular pressure, but once again that improved as the dosage was tapered and didn't need medication. Should state that I never had to take more than 15 mg pred as it was only PMR, but advice still holds. My story is in the FAQ under Bone Health: healthunlocked.com/pmrgcauk...
Morning NinnyB, nothing to add to the already excellent replies you have received, other than welcome to the community which is full of some very experienced, helpful and amazing people who are always willing to pass on their knowledge and experience.
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