Recent Diagnosis of GCA

[JanboC]

Hi, I have recently been diagnosed with GCA and am currently taking prednisolone. Started at 12 a day for two weeks, then 10, am now taking 8. Does anyone else get up at 4am?, get palpitations on waking and suffer from tinnitus with their heartbeat pounding in their ears? It's driving me mad. Also, my neck has started to swell. Is this normal? Some days my legs feel like jelly and my hands shake. On 12 a day, I was extremely hyper but that appears to be slowing down now. I also think I talk a lot more than I used to, and have started to say hello to people I don't even know!! I think I am going mad sometimes. Anyone out there that can put my mind at rest please?

[Hidden]

You seem to be on quite a low dose for the start. I was on 60mg from Dec 17 and only now down to 10mg. I too experienced the jelly legs for quite a while, it has improved greatly . The Pred does make you swell up face ankles and round the mid riff which isn’t great. Take it easy was what I was told by others and be kind to yourself. I found it very good advice. Best wishes on your journey. Rae

[JanboC in reply to Hidden]

Thanks Balfron42

My prescription reduces fortnightly, you have been on a very high dose for a long time. Makes you wonder why doesn't it? Still everyone is different, so we just have to put faith in the Professionals I suppose. My ankles and midriff are ok for now, it's just my neck!

[PMRpro Ambassador]

I take it you mean 12 x 5mg tablets, so a dose of 60mg to start?

Never having been there (I "only" have PMR) I can't say from personal experience but I'd suspect there are plenty of people who can say yes - it all sounds very familiar from other people's posts. They will be along soon to provide their views.

It WILL get better - promise!

[SnazzyD]

Yes to all that at those doses. It does get better as the dose reduces. The fat redistributes itself to your midriff, neck and face. There’s nothing you can do about that, but you can stop unnecessary collections of fat and fluid by keeping salt as low as possible and eat an extremely low carb diet. The diet helps with a swings in blood sugar and snack attacks. Afternoon naps were my saviour while the nights were too short for my liking.

[JanboC in reply to SnazzyD]

Hi SnazzyD

Many thanks for you reply. Funnily enough I spent two hours in Morrisons and Aldi yesterday looking for low carb foods. Couldn't believe the amounts in the so called healthy eating snacks, so have filled the fridge with salad, meat, greek yogurt etc etc. Unfortunately I can't sleep anywhere else but in bed, and only at night! Couldn't even doze on an 8 hour overnight flight from NYC. I was the only person not sleeping apart from the pilot I think.

[DorsetLady PMRGCAuk volunteer]

Hi JanboC,

As others have said, yes to most of them. About the only thing I missed was the pounding heart!

I won’t pretend it will be easy, but as PMRpro says it will get better as you reduce your steroids, so in the meanwhile just be good to yourself.

You aren’t going mad. And being awake ar 4am in the summer is better than 4am in the dark winter! As for chatty, my hubby always used to say I could talk for England at those sort of doses.

You are in this for the long haul, so look at it in that vein, don’t expect to be “back to normal” within weeks or even months. If you do, you will just put unnecessary pressure on yourself, and that’s no good.

Have a look at this and please come back with more questions as they crop up. Good luck.

healthunlocked.com/pmrgcauk...

Me: GCA now in remission - off Pred since September 2016.

[Hidden]

Hi JanboC, I am so sorry to hear you have joined our club... and "NO" you are not going mad! It's the Pred! It makes you crazy! I was diagnosed with both PMR & GCA in 11/2017 and have been on as high a dose as 80mg, but I am now down to 40mg. At 60mg and above, I was like a cat on a hot tin roof! It felt like I was clinging to the ceiling by my fingertips... It gets better, I promise. The first 4 moths (for me) were hell, but things are settling down a bit now... everyone's different and you may have a much easier time of it! I will let the "experts" here on the site advise you and direct you, as I feel like I'm still a "newbie" myself, but if I can help in any way, please let me know. Best of luck!

[JanboC in reply to Hidden]

Wow, thanks everyone for your interest. Didn't expect that!!!!!

[SheffieldJane]

I am afraid that these are all normal side effects from high dose Prednisalone. I found that 10 mgs of Amitriptylin taken one hour before bedtime eased the insomnia. The hyper symptoms are usual ( I secretly quite liked it) but if you are really worried talk to your doctor, ditto about the swelling but I think that’s normal too. These side effects will get less as you reduce your dose. Once you get to 20 mgs, it is advisable to taper by no more than 10% of your dose with about a month between each drop. Failure to do this may provoke a flare of your original symptoms.

I experience mild tinnitus and the palpitations were solved by the Atenolol I take for raised blood pressure.

[JanboC in reply to SheffieldJane]

Thanks Jane, I quite like the hyper activity too, lol. I have an appointment with the specialist in June so I have started a diary of my symptoms and problems etc, and I can discuss it with him. I have been told that I will probably stay on 20mg for at least two years. Interesting about the Atenolol though, maybe I should have my BP checked? I have some Amitriptylin, and as I usually wake around 2am for the loo, I have tried taking one them, but it doesn't seem to work! All I do is doze for a couple of hours and then I have to go downstairs due to the tinnitus and palpitations. Long days! Oh well, going to have to live with it I guess. Many thanks for your reply, much appreciated

[PMRpro Ambassador in reply to JanboC]

Leaving a patient on 20mg for 2 years is an approach I have never met before - I would be interested to hear the reasoning.

[JanboC in reply to PMRpro]

I will ask the question and let you know

[SnazzyD in reply to JanboC]

I’d want to know why; that is not an insignificant amount to be having for so long with potential longer term complications

[PMRpro Ambassador in reply to SnazzyD]

Especially when you consider the fuss they make about us being on much lower doses for long!

[Telian in reply to JanboC]

I agree with all that's been said so far - re the Amitriptylin why don't you take it before you go to bed not sure about the 2am dose it needs to get into your system and relax you - it worked for me, I was able to stop it once I got to 4mg without problem. It worked for SJ too. ATB

PS who told you 'you will probably stay on 20mg for at least two years'? was it your GP or rheumy? just interested..

[JanboC in reply to Telian]

Trouble is that I have no trouble in falling asleep, just waking early. It was the eye specialist that told me I would be on the steroids for two years. Haven't been diagnosed with rheumy, just GCA at present

[Telian in reply to JanboC]

The steroids are the reason for not sleeping - not more than 2 hours in my case - Poopadoop explains it well, it needs to be taken earlier in the evening, I only needed 10mg Amitriplytine and sleep increased to 5/6 hours, If you continue to not sleep you'll probably reach euphoria as I did. You still need to see a Rheumatologist to get the correct diagnosis and advice for it. Your GP can then manage the illness if that's what's agreed.

If I've read it properly you started on 12 is that 1mg x12 or 5mg x12? if its only 12mg in total that is not enough for GCA as you risk losing your sight, even more reason to see a rheumy plus they will advise re the sleep problems.

Best wishes.

[JanboC in reply to Telian]

Hi, I started on 12 x 5mg for 2 weeks, reducing by 10mg every two weeks until I get to 4 x 5mg per day

[Telian in reply to JanboC]

That makes better sense, best wishes.

[Hidden in reply to JanboC]

You need to take ammitrypine before bed and it's not meant to be occasional use. It needs to build up in your system so that it can be as effective as possible. I take my 40mg at 8 to 9pm. I have taken it for years with worse side effect a dry mouth occasionally. It's not a sleeping pill as such it helps you nerve/muscle to "relax" so soreness and pain helped. If you take it at 2am you are probably up and around the next day at its apogee.

[JanboC in reply to Hidden]

I don't need anything to help me actually fall asleep, it is staying asleep that is the problem, lol

[Hidden in reply to JanboC]

That's what amitryptiline does. It relaxes muscles so they don't wake you. They have also been used for bedwetting so may stop you waking wanting the loo as much.

[JanboC in reply to Hidden]

Well, I am going to have to confess that I like a few alcoholic drinks on a evening, and you aren't allowed to drink with those pills. Also, since being on the pred, I don't have bladder leak problems anymore. You know, the ones where a cough or sneeze causes a dribble. So that's one good thing to come out of all this

[Hidden in reply to JanboC]

Depends what a few drinks is but it is renowned for being about early rising. 2am to 3am is the usual time. Which is more important drinks or sleep? It's always a hard decision😂

[SheffieldJane in reply to JanboC]

Perhaps he meant just Pred for two years tapering from 20 mgs.?

[Hidden]

Janboc- from posts I have seen from people with GCA your experience is within the parameters of pred side effects. I did have palpatations even on 15mg (PMR). They have gone now. Everyone does follow their own path with pred. As you start to come down it will get better. You have been diagnosed with a serious inflammatory illness and that pred is your sights lifeline at the moment. Everytime you have a bad pred head experience just remember it's also helping you. Without it the inflammation would be out of control. Just keep in touch and ask questions. Questions help us all understand pred and the illnesses. It really does get better as you reduce as long as you don't reduce too quickly. 🌻

[JanboC in reply to Hidden]

Thanks Poopadoop

(There are some seriously weird names on here!) I will only reduce when either my GP or Specialist tell me to. I know that I am complaining about my fat neck, but the words my husband said to me earlier have had a significant impact on me. He said "Just be thankful that you can still SEE your neck" What more can I say? No more complaining, so I am going to buy some pretty scarves to disguise it a bit

[Hidden in reply to JanboC]

I had to choose a name I wouldn't forget and I am sure others have to do that. Pred head!!

Pred at GCA initial levels must be scary. Teilian posted a photo a couple of weeks ago and I will let you read what a "good""knowledgeable" rheumatologist said she looked like. I have linked it as I presume her public discussion of it was fine to refer to it!

healthunlocked.com/pmrgcauk...

[Grants148]

Hi JanboC,l am sorry you have GCA,l cannot advise you any more than the previous posts,l have PMR,but l do have pulpatations and a very rapid heart rate sometimes during the night.l also have a pulse like noise in my right ear,this sometimes misses a beat and that matches the pulse in my. wrist. I have been seen by cardiology but this never seems to happen when l have an ecg.lt is quite alarming when l have the missed beats,a GP did detect it once,that is why l was referred to cardiology.l do not seem to receive any help with this problem and l find it very depressing at times when the noise is really loud. I hope that as you lower your dose of preds that you have less side effects,and l wish you well again before too long.

[sondya]

Hi Janbo. I am down to 1mg per day for GCA - it's been a long tapering but it's the only way.

Find out the difference between GCA v side-effects of prednisone. Knowing this - and the medical mantra 'blame everything on prednisone' helped and yes, as doses reduced, so do the side-effects.

Cheers from New Zealand.