I’ve just been diagnosed with GCA I’ve yet to have my biopsy but I’ve got all the symptoms. The want to put me on a high dose of prednisone to start with I’ve been reading all about the side effects and the fact that it suppressed your immune system. The said if I don’t take it i could go blind. I’m 75 and normal reasonably fit I’m on my own my wife died last year I’m really worried what decision to take
Your replies on the use of prednisone and it’s reactiions would be gratefully appreciated ASAP
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HONEYwhite
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I do sympathise with you totally, but at present you have no choice at all. This dangerous inflammation has to be zapped to safeguard your eyesight. You won’t be on the high doses of Prednisalone for long. Many of us have found ways to mitigate the side effects of steroid treatment. We can have these discussions once you are safe. Thinking of you - honestly, right now, you have no alternative. People who have walked this path will be along soon.
Are there particular side effects that worry you in particular?
It's true that pred has plenty of possible side effects, but nobody gets them all and, on the whole, they can be dealt with. For example, I had insomnia every single night for a long time. I coped by simply going with the flow. When I couldn't sleep, I did things - reading, knitting, cooking, listening to the radio, watching silly old films on YouTube etc. Then I napped during the day when my body demanded it. I must admit that I gave in stupidly to the rampant hunger and gained a lot of weight as a result. However this can be controlled by following a low carb diet. You will find plenty of advice about diet if you explore the archived posts.
As everybody tells you, you really have no choice but to take the pred or to risk losing your sight. Good luck and keep watching this forum. One of the many drawbacks of GCA is that most people have never heard of it, so it's always good to be in touch with fellow sufferers.
Hi honey white, sorry to hear you have GCA. The reason you have been prescribed pred is because your immune system is attacking your body so therefore needs to be suppressed. Simply put every morning between 3 and 4am the body releases cytokines, they cause inflammation. That inflammation effects the vascular system, and that inflammation can impact the eyes. The result of that process (more complicated than I have written here) can be permanent sight loss. The pred mops up the inflammation each day (as pmrpro says), so you need to take it everyday. The idea for GCA is you take a dose of 40 to 80mg usually. This stomps on the inflammation and once the dose works you start to reduce.. Initially you will reduce in big steps and then you slow down once you get to 15 to 20mg. Yes there are side effects but there are ways to manage them. For me none of the side effects are as bad sight loss. Hopefully DorsetLady will be along with the GCA welcome wagon. The main thing to remember is you won't be on big doses forever. 🌻
Hi and welcome - you already have been told some of what I would have said so I won't repeat it.
I too sympathise - but there are no side effects of high dose steroids that are worse than irreversible loss of sight. Most of them can be mitigated or even avoided when you know how - and the members of this community will help with suggestions and advice.
There is no other drug that can protect your sight besides corticosteroids. It is what we in the UK, and I think also in the US, call Hobson's choice: you take it or risk going blind with no way back. Since you live alone that is a very important factor.
With pred you stand a good chance of that - without pred there is a big risk you will lose your sight and then it is a whole different ball game. No driving, needing someone to help with shopping, learning to find your way around even your own house and proper cooking could be very difficult.
Pred may make you have problems sleeping, you may gain weight, feel wobbly - but it will leave you able to function for most things as long as you pace yourself, you will probably get very tired, but that is as much the GCA as the pred.
All the pred can do is combat the inflammation that reduces blood flow - and is the risk to your sight. The actual disease is still chugging away in the background, making you feel unwell. Much like using cold remedies makes you feel better but the cold is still there.
But I can't say it enough times: you need to take the pred or you are very likely to wake up one morning unable to see. Once one eye is gone, the chances of the other surviving even with very high dose steroids in hospital are less than 50/50. And since it is the optic nerve that is damaged so badly it can't carry the signals that let you see, there is no way back. There is no cure.
I know it sounds harsh, but that is the bottom line. Please don't risk it.
Yes, you can generally do all the things in life, just less of them. In the beginning I had one big thing a day I could do. You sound like you feel pretty good so probably different for you.
I live alone and, with some modifications, I have managed during two and a half years of GCA and PMR to live a fairly normal life. I shop online for a lot of my supplies, but I try to walk to the local shops and the library at least once a week to feel less isolated and still part of the community. My standards about tidiness have probably slipped, but the fact is that when one lives alone, the house doesn't become as dusty and untidy as it does when there's more than one person living there. I still cook as I always have, but probably tend to use simpler recipes than before.
I forgot to mention in my earlier response to you that one of the most common side effects of pred is ''brain fog''. I do admit that I found this rather worrying and distressing and, of course, at our age, it's impossible not to fear that it's the onset of dementia of some kind. However as my dose has diminished (from 60 mg per day originally to 7 mg currently), I have found that my mental processes have recovered a lot. I can once again follow the plots of long complicated novels and TV dramas, and I feel ready to resume my French studies.
Also, not to scare you, but do be aware that pred is likely to make your skin thinner and more delicate. You will probably notice that you bruise more easily. I fell a month ago and the skin of my left calf just split open leaving me with a very nasty gash that still isn't fully healed, as the pred also affects the skin's healing process. However the fact is that elderly skin to some extent is always thinner and slower to heal than before. My feeling is that I must just be careful not to fall again. For this reason I intend to join a local tai chi class.
Hi there! Welcome to this wonderful group, it has saved lots of us. When I was in the throes of undiagnosed GCA I felt like I was dying. I was unable to get through a store without sitting down to rest. I gladly accepted prednisone so I could begin to heal. You don’t sound like your symptoms are so dire so my hope for you is you have caught this in time and will have an easy taper off prednisone and a short duration of illness.
Hello, these people below are right. I was horrified when I was diagnosed with GCA (negative biopsy but classic symptoms).yes, the first few months were rough with getting to grips with it on all levels, but it doesn’t last forever. I found that my eyesight started to shut down over a couple of hours, so they got me to chug down high dose steroids within half an hour of getting to A&E, with the attitude of save eyes first, ask questions later. The result was miraculous but some are not so lucky. You can get so much guidance here from people who have been through it. Final word to echo the others’ is you do need steroids and there is no time time to faff about; take it now, ask questions later.
As someone who lost sight in one eye due to late diagnosis I would say take the Pred when offered. Yes it does have some pretty nasty side effects - but that doesn’t mean you will succumb to all, or even a few, but even if you do they can all be managed.
You will manage on your own (I lost my husband a year into treatment) - it might be a bit difficult, but easier with both eyes rather than one or heaven forbid, none. Might sound harsh, but defiantly a possibility if you refuse Pred.
Have a look at this - a bit long and maybe a bit daunting first read, but gives you a good idea of what’s in store -
Steroids are a wonder drug, sadly they do have side effects, but on the other hand so do most medications. I could hardly move before diagnosis of PMR within days I was back in the land of the living, a real miracle.
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