Diagnosed with GCA

[Willow33]

Hi I’m new to this forum, as I have only recently been diagnosed and never heard of it before then, feeling a little overwhelmed. Just done 4 weeks on 60mg prednisolone a day and reducing to 50mg a day today. Don’t know about anyone else but never felt so dizzy. Hopefully it will improve.

[Yellowbluebell]

Hi, welcome to the forum. As you have been a high dose of pred i am sure you feel a bit odd with it. Dizziness is a symptom people mention and it will gradually wear off as you taper down your pred.

There is a lot of info available on the site but feel free to ask any questions you have. There is usually one of us about. Our expert on GCA, dorsetlady will be along later with lots of info for you. Could you please make sure your profile is filled in as this helps us give you more targeted advice. Please keep us up to fate with how you are getting on. YBB

[DorsetLady PMRGCAuk volunteer]

Hi Willow33 and welcome,

Yes dizzy spells are usual - in fact that’s what my first post was about - see below. You body is so full of artificial cortisol it really can’t cope (60mg compared to approx 7.5mg);so you get dizzy, hyper, in fact all over the place - but like all side effects it dies reduce and eventually go as you get lower on the medication .

healthunlocked.com/pmrgcauk...

This might give you an insight to GCA ,-

healthunlocked.com/pmrgcauk...

An this covers both GCA, PMR plus what life holds for the next few years. It’s a bit daunting at first read, and you probably won’t make at lot of sense of it, but keep it, and read it again in a few months when it will -

healthunlocked.com/pmrgcauk...

[SnazzyD]

Hello and welcome. High dose Pred can make one feel all over the shop such as weak, jittery, dizzy, sweaty, full of beans but exhausted, emotional, racing brain that thinks it’s right on the money but is a bit stupid. It does get better. Cut carbohydrate and salt in foods right down so avoid the weight gain. It helps with the mad hunger attacks too. Do ask any questions, there’s a lot of experience on this forum.

[Highlandtiger in reply to SnazzyD]

"racing brain that thinks it’s right on the money but is a bit stupid".........perfect description!

[PMRpro Ambassador]

Welcome from me too - it WILL get better, I promise. In a year you will look back and see how far you have come.

For the moment just accept you are very unwell but you are on the way back to health - and make sure you are being looked after and don't race round trying to do things whatever the pred makes you feel like.

[Hidden]

It will improve!!! I promise! I was diagnosed with GCA (and then PMR) two years ago. I was started on 80 mg of Pred and thought I would die, either from the illnesses or the Pred! I wasn't sure what would kill me first! ...but I survived. I am now on 13.0mg and feeling fairly normal! The dizziness goes away, as do the jitters, insomnia, palpitations; and hopefully your godawful headaches has already subsided! It's a long road... rest, rest, rest.. and try not to be overwhelmed. Just let it all wash over you and go with it. (Which is way easier said than done, I know!!!!! ) Best of luck

[Marijo1951]

I started on 60 mg per day and had two ''funny turns'' in the first couple of weeks which were a bit disconcerting. They both happened when I was feeling upset and annoyed about something. I had a sudden sledgehammer headache above my eyes, severe nausea and my blood pressure shot up sky high. I was rather bewildered and incoherent. The first one happened at the hospital when I went for my first blood tests, which was rather convenient. The triage nurse clearly thought I had either had a stroke or escaped from the dementia ward. I ended up staying in for a couple of days, and having a lumbar puncture and other tests. I think the doctors were either less than honest with me or blinkered about the possibilities. I was fairly certain that it was a reaction to the steroids, but they said it wasn't. The second time I was at home and a friend called an ambulance. This time the on-duty A&E doctor confirmed that I was reacting to the sudden shock of a high dose of steroids and that it would pass. 2 or 3 times I started to feel another episode building up, but found I could control it by deliberately relaxing and breathing deeply and not thinking about whatever had brought it on - once it was being very amused by something on the radio rather than being upset.

I don't want to scare you or anybody else in the same position, but I would have been glad to be aware of the possibility of this kind of reaction. It passed very quickly, even before I started to reduce my dose.

[SheffieldJane in reply to Marijo1951]

Although I don’t have GCA, I found this to be a sensible, helpful post. It is just the way I would react - I just know it.

[Grammy80 in reply to Marijo1951]

Great post.....I felt the same way and would tell my family that I had hoped when I got dementia I wouldn't know it...it was tough being out of my head and fully aware~! but...it does pass.

[Grammy80]

Welcome!! Sorry you have to deal with GCA...but there is no better place to be than here. I was dianosed 5 months ago and have just begun tapering my prednisone. I was like a drunk leaf blowing in the wind...and my memory took a vacation. It will get better, these folks are wonderful.

I live alone and am 79 and was frightened..I'd never heard of it either. After joining the forum I didn't feel alone and knew there were ups after the downs....and that in time life could even be back to normal. I tell my friends..."What happened? In July I was still about 45 and then BOOM! I turned 80~!!! Today I feel like like an improving 55~!

People far more knowledgeable than me will help....but I'm a fighter and positive thinker...for me faith and trust give me strength too.....but this forum is the Best~!!!

Hang in there because we will all hang with you......

[Grammy80]

I wonder how you are doing. My journey changed so much month to month....thinking of you and hope things are going well and that you are happy with your Doctors.

[Willow33 in reply to Grammy80]

Hi thanks for the message, I have been struggling with the medication, blown up like a balloon, so doctor added in water tablets but was so dizzy I couldn’t move for 2 days so had to stop taking that. Been trying to taper of pred slowly but drop 10mg and have to go back up 5mg it just seems to be taking forever as each time headaches come back. Got down to 40mg a day so far but feels a way to go. Hope you are well. I think the doctors seem a bit better at the moment.

[PMRpro Ambassador in reply to Willow33]

Care is needed when using diuretics with pred - hope they are checking your electrolytes.

Instead of trying 10mg at a time, do 5mg more often. It will be less of a shock to the system and in the end will work out quicker because when you yoyo the dose it makes each drop harder - no-one knows why but it is so.

[Willow33 in reply to PMRpro]

Hi no done no checks the GP just gave me them but because I was so ill taking them I stopped taking them after 2 days anyway. Yeah I think I will do 5mg at a time even though the consultant has me on 10mg drop every date. Thanks for the reply

[PMRpro Ambassador in reply to Willow33]

If you have "blown up" - have you tried cutting carbs drastically? That helps not only fat deposition but also fluid retention. I also use no salt for cooking - when I eat out I get puffy after a few days without "my" cooking on holiday or whatever.

[Willow33 in reply to PMRpro]

Yes I do try cutting carbs and don’t add salt to anything. But still ballooned 😢. It doesn’t help when I get comments in work about getting fat

[PMRpro Ambassador in reply to Willow33]

Charming!!! I know how that hurts - a friend said it to me when she hadn't seen me for some months when I was on methyl prednisolone.

[Willow33 in reply to PMRpro]

I know I work in a local shop and have known everyone for years but you still get the snide comments and feel like you have to explain. I feel that conscious I have started wearing a snood in work so it covers my neck and chin as I feel awful

[Grammy80 in reply to Willow33]

So glad to get your response. I don't even have to close my eyes to know exactly what you are going through. I've been on a diuretic for 35 years and fortunately it did not interfere with the prednisone. I was dizzy for sure but they were not the cause of it.

It took five months for me to get into a taper that I was able to continue for three weeks...going from 68mg per day and am now at 24mg per day. About 10 days ago I called my rheumy because my jaw and temple were starting to sound off more...and he asked me to stick with it for a few more days. I did...and I'm having very little discomfort. There is no doubt you are (I call it) 'riding the train'....it is trial and error...finding the right dosage ...up and down...I was on 120 for 2 months, got down to 40 had eye issues...had to go back up.....finally, I just figured I was along for the ride. I'm not saying I'm helpless because I am not a silent patient....and when we meet on the 21st....we are really going to talk risk and benefit. I went through the same thing when I had seizures (3) in the 1950s....it took almost two years to get the meds right and my life has been full and seizure free for over 44 years. Riding the train!

I'm no young kid....but I want what eyesight I have for the rest of the trip until I meet my maker. I want to see as much of my grandchildren as I can...even if I have some other issues.

There is a great deal of valuable knowledge on this forum but I am always hesitant when someone 'prescribes' specific doses unless they know ALL your medical conditions and all the meds you take. Personally, I would not change my dosage as prescribed without discussing it with my doctor. Maybe it is different in the UK and you don't have easy access to your physicians....so PLEASE, to all moderators and administrators and long term members.....I mean absolutely no offense...just my personal opinion not intended to offend at all. If someone just looks at my GCA....that is what they see...but what about the heart attack, stroke, cancers and other history. That is why I am cautious.

A great deal of treatment, in my humble opinion, is a trade-off....risk this to get that and try to remain as positive as you can.

Well, that was a lot longer than I intended.....my gratitude and love to all~! Don't all yell at me at once🤞