Hi all, this is TJ, the newbie. I felt so good on the 80 mg of prednisone and the sun was shining for the first time in months. I did way too much and suffered this morning. I had the hot rages from the steroids and was sweating profusely with a rapid heartbeat. I was reluctant to take the next dose, yet with GCA I have no choice. The doctor had already prescribed activan for the steroid rages, as I call them. I had one with the prednisone and took it easy today to let my body heal. Thanks again for all of your wonderful post. It helps to know I am not alone.
I see the doctor and the ophthalmologist tomorrow. Still have some vision problems. I'll keep everyone in my thoughts and will post an update as I start methotrexate this week.
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TJ - you have a serious illness, you need to behave as a "poorly person"! It's like having flu - so rest a bit and enjoy the sunshine, not work in the sunshine!
Hi, I'm a member of the 54 club and know how frustrating it is to act ill! I say "act" and not "be" is because it feels like the only reason I am functioning at 20% is because of the Pred side effects on 40mg. I still can't quite believe there's a problem. Pred's a funny thing in that it makes one feel both broken and invincible. Goodness knows what 80mg would do to me, so my hat goes off to you. Hang in there, this bit won't last forever; the worst thing about this condition is that we don't get any definite timings which makes it psychologically hard.
SnazzyD, you nailed in with your comment about feeling broken and invincible at the same time. Fortunately I will have the memory of a great day to cherish and the foresight, I hope to remember that I am not invincible. The more I read about the side effects of steroids, the more I know to be concerned.
The side effects of pred, even at high doses - and you won't be there for ever - are not worse than the potential side effect of GCA: irreversible loss of sight. Once it has gone there is little to be done - and if the sight is gone in one eye, even with high dose pred some people lose vision in the other. It's remembering what the alternative may be that softens the bad sides of pred.
Also finding it hard as people keep saying 'it's all come on so quickly' even though for two years it's been getting progressively worse, i feel like those who don't get it just think you need a 'kick up the bum' to get moving and i can't shake the guilt of just resting when I feel tired...particularly when there is no end goal at the moment. And the pained look on friends faces when they see how much weight I've put on, its mortifying, I've even dyed my hair brunette for the first time ever so I'm not recognised, how pathetic is that!!!? Sorry I know I'm being very depressing at the moment but I feel like you wonderful people are the only ones who knows the invisible struggle x x
Hi, until anyone has a long term illness they can't really know what it feels like. To many people a health problem means getting a few early nights, a short course of medication, a bit of counselling, a bit of surgery perhaps, a few weeks of convalescence and if they are lucky a nice visible sign that everyone around them can relate to. Then it's back to normal life with a few tales from the trail to show what a brave soldier they've been. For an awful lot of people their experience is more like yours. I work with people with cancer and their main complaint is the 'old news' problem, where friends and family move on, leaving the person feel surrounded but isolated. This is either because they can't sustain the emotional input for someone they feel powerless to help, or for the reasons above they just cannot comprehend it and surely there must be a fix or the person must be at fault somehow. Drives me nuts. I'm still only six weeks in after a sudden decline so still in the flowers and cards stage and still yet to label myself as having a long term condition. It'll come.
Re the weight, did you try drastically cutting down carbs as PMRPro suggested in a reply once? It has worked wonders for me and others on this site have reversed their weight gain too. It'll also really protects regarding diabetes and complication very much worth avoiding.
Ah, I had the luxury of a sudden decline; there one minute gone the next. A&E added a bit of drama too, always captures the imagination. Flowers have stopped but I got a card last week, probably my last I suspect. Emails stopped after four weeks probably because my replies didn't change from, "don't know yet, too early to tell". You've got to laugh....
Actually I've taken to buying tulips for myself from the supermarket. Right now there is a bunch of sunshine yellow ones on the mantelpiece, brightening yet another drizzmal day.
No flowers or cards for me, ever. Ive been to lots of funerals lately... far too many, sadly... and have made it known that when I die I don't want flowers from anyone who didn't give me any while I was alive. Ive taken to buying myself the odd bunch of daffodils or tulips and frequently do the same for others... nothing pricey, but they always bring a smile.
I am really trying and failing to kick my sugar addiction, it's ridiculous how little willpower I have but tbh this weekend and my stupid accidents have given me the impetus to do it. I'm self medicating with treats and it needs to stop!!
Ah, sugar addiction, that would do it. The reason it is addictive is it gives you a high and the low afterwards makes you feel rubbish which makes you want to eat sugary stuff, as you've no doubt discovered. When it feels like your only joy in life that's hard, but once you're off it your body starts to register it as the damaging substance it is. If your body is constantly dealing with high blood sugar you'll not feel well either. It fuels inflammation, so worth another try, and another and another...
Don't answer if you don't want to but have you tried cold turkey or have you tried cutting in gradually with the odd snack with something your body needs rather than whatever it is you go for first? I have found that the hardest Pred munchy thing is stopping once I've started some days. If it's bad, I brush my teeth immediately after I've eaten my food. The fresh non food taste is gone and seems to stop me wanting to top it up.
It does help to have crunchy snacks prepared and in the fridge - cucumber and carrot sticks, florets of broccoli and cauliflower (yum!!! but I know it isn't everyone's idea of a snack), strips of cold turkey small pieces of cheese. Eat them slowly and think about the flavour and your mouth gets satisfied - which is an awful lot of the problem.
But before eating - try drinking a glass of water and go for a walk or do something else where you can't eat at the same time. And of course - if you don't buy it, you can't eat it!!!
Yes I need to stop the 'last binge on sugar/comfort food' I have got myself into and actually do it, doing to set myself plan (Joe Wicks is pretty good for low carb and the kids will eat it) so I will make sure I have food to hand and not just nip out and buy stuff which inevitably leads to a huge purge on baddies...will let you know how I get on....I know it's the way to go, just need to do it!!
Trixiechamp, prior to my diagnosis I was often getting the signals "to get off my bum and get going." Everyone else said they felt just like me and it was just an artifact of getting older. I tried to remind them I wasn't old. That didn't help. Just made me feel guilty. (Still struggling with that too.)
Time to shake the guilt. Fortunately for our loved ones they don't realized how hard is was and is to get our legs to move when we want them. Steps, no way. Just vacuuming a short distance is painful.
Remember you are a great person in your heart and soul. Your body is not your definition of yourself. Love, laugh, and give of yourself in ways that are different now. Be yourself. Dye your hair purple and laugh! Educate your friends yet don't expect much. It's not their fault. It is very hard to understand and process what's happening to you as this is not a well understood disease.
Thank you for your post. I am grateful to have found this forum!
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small pieces of cheese. Eat them slowly and think about the flavour and your mouth gets satisfied - which is an awful lot of the problem. 
It is amazing to know you are there. 
Not sure which tack to take now?
Has anyone had Occiptal Neuralgia that doctor thought might be GCA and treated it as such?
Unable to take prednisone
