As usual with me a bit of a long one, sorry, I have written and got very good advice from you guys twice before, which my Gp respected. So before I have another telephone update with him this week I thought I would see what advice you had...
Diagnosed with GCA back in Jan in 2021, (PMR in Aug 2020).
End of Feb - it took quite a few months to stabilise the symptoms. After a few weeks of no symptoms (by taking your advice and increasing the prednisolone from 50 - 60 mgs)
March 16 - the Gp reduced the press by 10 mgs, which by the first afternoon the headaches were back. I persevered for 5 days but had to increase preds back to 60mgs.
However, since then the symptoms have stayed:
Pouch of swelling on left side, right temple visible, headaches and blurred vision if really going, over whelming exhaustion.
It has been difficult to function again with energy levels non existent and feel like I have gone backwards. I had just started back at work with a phased return and managed 2 days of 3.5 hour shifts but now back off sick.
It has also been difficult to negotiate what is effects of high does long term prednisolone and whats symptoms of GCA.
Last week was not a good week, the symptoms seemed to be getting worse especially headaches and swelling so ended up going into casualty weds night. Blood pressure was sky high 132/117 (never suffered presuming the effects of prednisolone and stress of a 6 hour wait!) The doc was happy I wasn't as he put it 'in crisis', ie no stroke, bleed sight loss and is writing to doc as he was reluctant to mess with meds or add more regards blood pressure/symptoms. He did stress it was good to check it out but it on this occasion it was the symptoms of GCA and patience was needed to stabilise symptoms.
Not sure if despite my reservations of the prednisolone long term high dose use it is better to ask GP to increase the dose slightly to stabilise the symptoms or if there are alternatives.
The blood pressure, I am not sure it was taken well.... cuff very very tight it hurt and over clothes. So ordered a monitor myself to keep an eye for next few days to give home readings to GP; perhaps more accurately, as reluctant to take more into an already lethal cocktail of chemicals. The doc at A&E said there were other meds gp could try that would mean I wouldn't have to take more just different. I wasn't in a fit state to comprehend what drugs he said... atacins??
Whats your thoughts? Has anyone had a similar experience. I just feel I am never going to be reducing prednisalone as long as i can't stabilise the symptoms. Gp has already told me not to until i have been stable for a while, so as well the question is once achieved how long is a while?
we have agreed it was too much too quickly so won't be doing that again.
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Indigo27
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Hello, I have no idea how you are working on 50/60mg of Pred, I could barely get out of a chair. I was 54 and working when diagnosed and as soon as the Pred started, that was it in the space of two hours, I couldn’t work or drive safely. I don’t know if it is my brain but your account seems like your symptom control has been a bit of a rudderless ship. Can’t the GP pick up the phone a get the advice of a rheumatologist? Some people need doses of 80mg to get things under control or a longer go at 60mg but this is serious stuff. I know your circumstances are difficult but you do have to play your part and really be off sick and allow the Pred to help. The Pred is just stopping the inflammation it is not stopping this autoimmune attack. When I was in the early months if I did very much at all, I could feel the symptoms building in the background. Activity definitely didn’t help, rest was the only way forward. What you don’t want is to keep that dose higher than it needs to be by trying to keep life normal. Your general symptoms can be either Pred or GCA but your action is the same, act ill.
People vary in what is required dose wise. Mine was 60mg for a few days then 40mg for 6 weeks. I do feel 40mg was borderline ok and I walked a fine line. Even at high doses I got withdrawal symptoms including headache from day 1-4 that lasted up to a week. At least your GP realises the Pred dose needs to be high enough but they do need advice I think.
i appreciate your reply. Please see my reply to pmpro. In response to a few things, i am not functioning. i don't get out of chair that often in comparison to pre jan. i haven't the energy to role play and i am coming to the conclusion that any activity does indeed have a negative effect on my inflammation/pain levels you are right but i do not want to sit in a chair and vegetate. my mother died from asphyxiating on her own saliva, she drowned herself. she had amongst other things PMR, osteoporosis, RA and in comparison was on large doses of steroids she lie in bed and watched daytime tv every day in pain she was an active 70 year old before. i am only 54 . everyday i try a little bit more if i can't i am not silly i stop but to give in is not an option.
Replying also to your reply to PMRPro - sadly it appears to be common that people have to be the driver of their care and become experts in order to call out lack of expertise in those supposed to be helping. This is all while one feels dire, has no reliable brain, insomnia and all the emotional rubbish from taking high dose Pred. It is devastating when at 54 (same as me) one goes from being a general superwoman to being a quivering heap. On the Friday I cycled 8 miles to work, did a 10 hour day and cycled back home again to deal with an elderly relative, two teenage kids, husband working long hours, a large house and garden and 2 dogs. By Monday I couldn’t leave the sofa. So, I took short walks for 5-10 mins up the garden a few times a day for a couple of months, cut nearly all carbs (blood sugar and weight) out of my diet and nearly all salt (fluid retention). That way I felt I was controlling my now microscopic world to be ready in the best state possible for the day it got easier. To be honest, until you get the symptoms under control and the dose starts to come down it’s going to be tough, but just keep to these small things. It’s a case of accepting, adapting and surviving; you are not giving in. You are obviously used to spinning many plates, as many on this forum used to do which is probably no coincidence. Allowing others to help is difficult to accept but you have bigger fish to fry. You are not your mum and have probably much more information at your fingertips. I’m not playing Top Trumps Trauma here, but hoping you’ll see that we do get out the other side and you have to hold on to that even though it feels like life is over.
Bless you yes i appreciate your insight and it sounds extremely familiar. I am in my microscopic world just trying to accept adjust and find a new way of life, more so with lockdown etc... i too do short walks to field to 'look' over fence at the animals etc so know where you are coming from. just starting to be very conscious of cutting the carbs/salt, it is hard when you feel crap its true. toast is easy quick etc no you are absolutely right i am not my mother, but i do notice sitting builds up wheezing etc so try to move. apologies for grumpiness
Don’t apologise, I have a suspicion that on high doses I was a monster, thinking I was razor sharp and quite the wit too. I fear it wasn’t so. Some people have reported feeling rather puffed when on Pred. Whilst I didn’t become wheezy, the air always seemed rather thin. Again, reduced dose helped later on.
Afraid the A&E doctor is wrong - corticosteroids are the mainstay. He MAY mean Actemra/tocilizumab but it isn't automatically available in the UK, he is right about patience and stablising the symptoms.
But I hear no mention of a rheumatologist - GCA is beyond the average GP. You are also suffering from a serious systemic illness and are on a high dose of a very powerful medication. You shouldn't be even thinking of work or normal life. Rest and recuperation is what is needed.
i think he was referring to the management of the blood pressure with regards to meds In his defence i don't think he was underestimating the power of the anti inflammation action of preds hence why he was reluctant to add or subtract anything else. you are right he didn't seem to know much regarding GCA and even mentioned that i had a good grasp of my condition.
I was an extremely active busy person and in comparison i am certainly NOT firing on many cylinders, pretending i am well or ill, burying my head in the sand. i am also very conscious of my mental health which is why i try to stay up beat and positive but i have had a few moments. so i apologise if you all mistake my post too 'well' i am scared worried
i am 54, i worked over 40 hours a week running a bakery dept, managed a smallholding, i am an artist/maker, who had just embarked on an MA in jan 2021 before this i now can barely look after myself let alone manage my smallholding needing my children to do that,. i live on my own in the middle of nowhere i am fiercely independent and i am watching that slip away within 4 months.
In your well meaning advice please be sensitive that other people have different lives to you. ( dad passed away in sept 2019/son very ill at same time) what is active for one is sedentary for another and vice versa.i don't need to ACT ill strangers recognise that.... very humiliating to be seen as disabled in a sense after being so active. i have put on a lot of weight to an already over weight body (from previous meds of beta blockers years ago) I have moon face etc from the preds, so a change in body image which i am not vain but none the less takes a bit of getting used too. Perhaps people need to change their ways of looking at ill people rather than the ill person having to play act i feel too ill to accommodate that role play.
i woke up this morning with a swollen eye and it took a few hours for that to go down after taking meds so i think it is the GCA symptoms that are the problem, as i suspect i am not quite 'managed' symptoms so i will trust my intuition and ask to increase meds reluctantly to get it under control. i always feel slightly under managed so far as symptoms. BUT i will take on board i need to be more proactive and contact doc more regularly rather than letting symptoms continue, i just don't like being nuisance. I had thought about the rheum so that was on my list to ask.
i do thank you for your help. but feeling a bit sensitive.
You don't know anything about me either though do you? So you too have assumed. My husband has been seriously ill for the last year, I am a sole carer with no family in this country and have had PMR for 16 years. Now you do know.
All I was saying is what others have also said, high dose pred with a very serious systemic illness requires rest - if you had had an accident and badly broken bones or a head injury the same question simply wouldn't arise would it? We have all had the same problems with weight gain and moonface and losing our previous lives to PMR and/or GCA and some have lost their vision to GCA. We do all understand where you are coming from even if you didn't hear that expressed in as many words. Snazzy lost her career as well and she isn't the only one. I lost most of my 50s to undiagnosed PMR after being at the gym most days before running my own translation business. That is why we are all here telling it the way it is - not judging anyone.
Our usual recommendation for the weight problem is to suggest switching to a low carb diet - it really does help avoid the weight gain that often comes with pred because of the way pred changes the way our bodies process carbs, Salt also causes fluid retention so cutting processed carbs and added sugar really can make a big difference. It is even possible to lose weight by doing so.
I make no assumptions at all. i contacted you here purely as you are answering as an ambassador for the PMRpro. I am aware you will have your own story to tell though for which i respect your advice. i entered a generic reply here for that reason your connection with pmrpro. i will leave it there thank you for your time and trouble.
i DO apologise for using your reply to answer generically as it may have seemed as though i was criticising your advice personally, that certainly wasn't the case at all. i just wanted to address all the points WITHOUT offending anyone using your capacity as the representative for the pmrpro. hoping it wouldn't come across as a personal 'attack' for info that i am very grateful for. i am sorry for any personal direction you may feel i took towards yourself that is the last thing i would want to do as i do know all of us are suffering. so for that please accept my apologies and hopefully see what i was trying to achieve not what i feel unfortunately has happened. x bless you x sorry for my grumpiness. i tried to send this as a private message but my brain didn't work that out to do for you either.
It's fine - if you want to reply generically reply to yourself in the post otherwise others may not see your reply at all when it is in the middle of an internal thread. It's how this platform works and it is a pain for all of us!If you are grumpy - blame the pred!
I too had difficulties around 50/ 60 mg range for GCA. Sleep was a major problem, which is much eased now at lower doses.
What I did do, was change my pred dose to 2am, which quite a few people on the site do, I was awake anyway. This means that highest daily pred level is present in the system when the new daily inflammation is generated around 4-4:30am, so the inflammation is attacked by the pred as soon as it is produced and builds up to a lesser extent each day. Sorry bit of a clumsy explanation, I’m sure others can explain it better. Anyway it certainly reduced symptoms for me.
thank you x thankfully i played around with the times early on as i was not sleeping well at the beginning and now sleep for 6-7 hours perhaps getting up once for loo but go back to sleep. i take them between 6-9 depending when wake up but try to stay up til 12 in order to get those crucial 6 hours. i did notice that yesterday i woke up earlier at 6 took meds earlier and had a better day but today the knock on effect may be that i woke up at 9 and the 3 hours difference may have had a significance to swollen eye ie: inflammation. so i will think about that and perhaps set alarm to take at optimum time. it does help thinking about what you say so far as symptoms GCA vs effects of preds. the times the swelling particularly on my left side of my face/eye is at worse seems to be as preds decrease mid afternoon eve/early morning which would suggest symptoms rather than effects of preds as it improves once preds are taken. also as a&E doc pointed out the preds are anti inflammatory so would be less likely to cause swelling. but thank you your thoughts have given me food for thought.
I always try and take pred roughly same time each day, well within 1/2 hour window.
Recently someone said 3 hour variation was not good idea, sorry can’t remember who or why someone else may be able to advise.
I get bad gastric problems from pred despite taking with a lot of Greek yogurt. I therefore need to take omeprazole 1/2 before tablets, have yogurt take pred, then wait 1 hour before going back to bed to let stomach settle. So totals about 2 hours in middle of night. Just something to be aware of if pred. affects stomach.
P.S you are very lucky getting 6 hours sleep at that dose.
yes i do feel the ability to sleep is a big bonus, its not consistent mind but not a problem most nights and has only been since i try to stay up til 12. i take the omazeprazole so thankfully do not suffer with stomach either another blessing. Few reasons to be grateful thank you for reminding me there is always a silver lining somewhere. x interesting what you say about the 3 hour window, definitely feel it inadvertently affected me today.
If fluid retention as PMRpro suggests (see below) I had this in ankles so cut out almost all salt in diet. This helped almost straight away, now try to keep to very low salt diet, with none adde to veg. no sauces, gravies etc. and limited cheese. Any deviation from this and my ankles swell.
Pred may cause swelling around your eyes because of fluid retention - just a thought.
The antiinflammatory effect of pred lasts for 12-36 hours depending on the patient, not the dose, all the pred is out of your body well within 24 hours. If you are late taking the next dose you may get some inflammatory effects returning before the next dose kicks in which is a couple of hours for most people. Being late with the next dose can have quite big effects - some people even have to split their dose to get a full 24 hours symptoms relief.
Why is Testosterone replacement controversial? I remember giving injections to men with low T because they couldn’t function without it. Perhaps it is related to things like hormone driven cancers and perhaps they draw the line at very low rather than a bit low. Re diet - have you made a food diary ever? It can be illuminating. Sometimes poor appetite is the worst thing for weight maintenance in that the dreaded nibble takes the place of a proper meal. Easy foods and tempting foods end up as carbohydrate laden and put up the blood sugar too so with all that insulin sloshing about at regular intervals, resistance can occur. Any truth in this pattern for you?
I don’t know how much extra weight you are carrying but it can make people quite puffed. Also, who knows what else long term Pred subtlely does to tissues and I think if my experience is anything to go by, it takes ages to adjust. If you think what a small squirt of natural cortisol does in the body, how powerful it is and then we hit it with super strong MAXOCort. That’s going to leave it’s mark.
I think the only way forward is to do the best we can with good basics and hope. With exercise start simple but doing it without feeling it is worthless because you’re not working up a sweat. For example quietly work away at your quads with foot raises with bended knee while watching tv. I have found that pre-Pred I could build muscle pretty quickly. Now, not so, but I keep working away at it and try not to have a vision of myself that I compare with, only to feel bad because I ain’t it.
I find that the effect of 1000 of one food has a different effect to a 1000 calories of another food. Have you ever tried a super low carb diet rather than low calorie? I’ve been off Pred for about 8 months and I have found that I still have to eat relatively low carb like no pasta, rice or potato with meals for most meals of the week now. Pre-GCA and Pred I didn’t. Yes, weight is a bit of a blunt but easy to use instrument in that it doesn’t account for muscle to fat ratio.
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