I hate to complain every time I’m on here. I know many of you have suffered for years and some have endured personal heartaches and tragedy. Life could be a lot worse. I have many friends and relatives but no one really understands what I’m going through. Just like me they never heard of GCA either. I want to know if anyone has had depression with this? I started being depressed before my diagnosis. This was very unusual for me. My doctor started me on an antidepressant. Once I was on the 60 mg pred the depression was worse. My brain was foggy. I couldn’t concentrate to read or even sit down to talk with someone. Once I got down to 20 mg 3 months later the fog started to lift and the antidepressant kicked in. However, I am still not myself mentally. I wonder if the depression is from the GCA.
Depression from GCA or from prednisone: I hate to... - PMRGCAuk
Depression from GCA or from prednisone
One of the more knowledgeable people will be along soon, but in the meantime - depression is a symptom of PMR according to the NHS website nhs.uk/conditions/polymyalg... as PMR and GCA are closely related, then it seems your depression could come from the disease. I have PMR/GCA and am not depressed, but certainly have to fight much harder not to become so. I imagine that if other circumstances were more difficult, then depression would be inevitable.
I hope you feel better soon
🌸🌺
People can be so good at switching off from their bodies that can be sending out signals that all is not well. Life can be too hectic, busy or exciting and it’s just plain inconvenient. There may be constant background stress or stuff we’ve mentally sent away from the past in a parcel that arrives back, “return to sender”. Often things have to be quite bad before we realise or others notice that something isn’t right but they can’t put their finger on it. I’ve seen people go hyper with extra energy (I’m in that camp) and others run out of steam and others just go pop. We excuse others for being down but just because our house isn’t burning and we have a full set of limbs then somehow we have no right to be depressed, stressed or unhappy. So, your body knew it was going down. Prior to my GCA as some of my brain vessels were not supplying all the oxygen they should, I would have complete loss of my thread in conversations, really quite badly. Who knows what neurological chemical disarray was occurring. You got depressed.
So then you go pop, and are told you have GCA and given a high dose of a drug that is known to cause all sorts of upset up top. All this time, your brain is still struggling with autoimmune shenanigans (to put it politely). Adding to your completely scrambled internal environment is the fact that you have no indication on the outside of your distress. Others have simply not the foggiest what you are enduring which makes one feel quite alone with it. How do you describe it? Docs don’t help because nondescript patient suffering isn’t high on the list of importance and they join the crowd of not the foggiest people. So another one to add to your collection of upsets.
So, Pred makes you a bit mad, GCA is still having a go and what so we add now? Lovely withdrawal. The body has the devil it knows but now you are giving it less and by the time it’s got used to it you do it again.
You have had a life changing experience but the goalposts keep changing. When you get to doses below 10mg there is another chapter that may or may not be a breeze.
I’m 4 years and 8 months down the line and 14 months off Pred. It does get easier but I struggled too, mostly with the overnight change in my life and changed body. My advice is to give yourself a big, well done hug and be very kind to yourself. Consume as nutrient rich a diet as you can that does not have blood sugar raising carbs in it. Keep with us and moan as much as you like.
Thank you for this heartfelt and very accurate summing up, SnazzyD. I'm going to keep it for some time in the future when GCA and PMR are in the past (yes, it will happen!) At that time I'll show it to some of my relatives to let them know what I was going through when their first remark to me was invariably ''Oh, you look well...''
I think I am approaching the end of the road with these conditions because, although I can still get completely worn out by doing very little, I have lost that constant feeling of what the doctors call ''malaise'' or as you put it ''nondescript patient suffering'' . For a long time I felt as if I was in the middle of a bout of flu - about day 4 when you still feel lousy but have started to eat and can get out of bed.
A great way of putting it, the day 4 feeling. The comment about looking well makes one want to scream doesn’t it? The Pred face ironed out any creases so I looked younger. I’ve said this one before but while trying to stand for more than ten minutes at a neighbour’s Christmas party, a chap who had worked in the pharmaceutical industry asked me how it felt to have Pred making me feel alive with extra energy and sharpened senses. As he bit into his luscious carb laden mince pie all I could do was say that it wasn’t quite like that while I thinking something rather more derogatory.
What an arrogant so-and-so. Does anybody ever feel ''alive with extra energy and sharpened senses''? I associate pred with brain fog and, when I was on a high dose, that horrible combination of extreme fatigue with insomnia.
The fatigue persists (minus insomnia these days, I'm glad to say) This morning I did some sewing for the first time in ages, a long-sleeved t-shirt and two pairs of knickers from some old cotton jersey. I'm so pleased to have my sewing mojo back, but I was exhausted from doing something different and had to sleep for two hours after lunch.
Very well said. Thank you.
"I have many friends and relatives but no one really understands what I’m going through"'
which was the primary reason for making the DVD (now on You tube to help patients, family and friends understand - all medics and no jargon.
The link is posted in the FAQ's under You are Not Alone. Suggest you take the time to look at it and then tell family and friends to do same.
It is quite common to have depressed mood alonside autoimmune disorders - and the diagnosis of a chronic illness and the lifestyle changes that result is like a bereavement and like any bereavement can lead to depression.
The brain fog is common with PMR and GCA and also for many patients is side effect of pred.
You aren't unusual amongst us - but we, too, walk the walk. Go to the doctor and ask about access to talking therapies - and use us too. Someone will have been there before you and can show you WILL get through it but it's not a nice place on the way sometimes.
We all complain every time we are on here. This is what here is for. We understand how you feel entirely. Check in as often as you like, we look forward to seeing you. 🌺
Well said again Jane. None of us are alone when on the Forum. I too am suffering mentally. I wouldn't go as far as to say it's depression, but some days worse than others feeling very low and grizzly too. I do have a lot on my plate right now looking after hubby. The wait for his hip surgeries seems an eternity away (next Spring if he's lucky) Must say, learning that his HbA1C must come down before surgery will go ahead, has now got him focused on doing the right thing, at last !! Just to think had all been well with his diabetes they were going to operate on 27 of this month. Disappointment is an understatement !
Some very comforting posts to-day. As well as PMR, I am suffering from old age 93. I have to try and see whether what I feel are from the PMR or the aging. I am down to 4mg of prednisone. I am terribly fatigued in the afternoon and can get very depressed after a very active life. In the morning I tell myself, " you can get out of bed make coffee and toast, have a shower so be thankful." Fortunately I have 2 wonderful children living near me. Just got back from grocery shopping with my son. My eyesight is declining so he drives me. Next week going to the beach with my daughter for a week. Walking is no longer easy, used to be a competitive runner, but I am not in a wheel chair. I say to myself, good posture, hold in stomach muscles and don't shuffle. I hope every one stays healthy nd enjoys life as much as possible. 
Very well said Noosat 😊 I try to adopt this view even at the tender age of 71….Hope you enjoy your break with your daughter x
I have suffered from Depression and Anxiety for 36 years but have controlled it with Antidepressants.When I developed GCA back in March 2019 I had a big relapse and had to have my medication changed and thank God it worked.
I have now got down to 5 and a half mg myself as not had any communication with my Rheumatologist for nearly 2 years now.
I still feel very low at times and very lethargic but hopefully I am on the right track.
Good luck with your journey through GCA and these lovely ladies on here will help you tremendously xx
I am sorry. I did take pred, twice, I followed instruction. Had not any side effect. Felt better and that was it.Hope you feel better soon!
I have had daily super hot flashes lasting up to 10 minutes since I started 20 mg prednisone. I bought fans and have to blow one on me every night to get to sleep. I blocked any heat from entering my bedroom. I also drink iced tea. The heat is less now that I am down to 11 mg but still get hot just not as incredibly hot. I am also the most depressed I have ever been in my 75 years. Hopefully seeing the end of covid will help that. I hope you feel better soon. It is a long road……
Thank you to everyone who replied. I know it’s a hard road for all of us.
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