I have had PMR for almost 2 years and doing well I;d got down to 3mg daily.
last week was diagnosed with GCA so am feeling upset and anxious having to start on high dose of steroid ie 60mg and worried about another 2 years on steroids with possible side effects.
After having 3 days of steroids plus a drug called Leflunomide I am feeling fuzzy headed and trembly I hope that this will clear.
Am also anxious about this coronavirus due to the added risk of compromised immunity.
I am sorry to hear that cream tea. You will feel fuzzy I am sure. Hopefully someone on that combination can help you work out a med routine that doesn't feel quite so bad. I was recency put on a med that takes a few weeks to settle, but I realised my blood pressure meds were making me really, really dizzy to the extent I wouldn't and couldnt drive for a few days. I moved the BP med the night time and felt a lot better.... Hardly any fuzziness. I switched back for a few days and dizzy again. So it is worth experimenting if you can move meds around.
You are protecting that precious sight and hopefully your taper will go smoothly. You at lEast know what you are doing as you taper. Don't forget you won't be at a high dose for 2years. And 4 years in I feel OK pred wise. Just make sure you have a dexa, take your Adcal and vit k2 if you can.
Lovely photo... Just choosing that shows there's still someone who see the world is a lovely place. 🌻
Thank you for your reassurance.
The photo is of my daughters orchids in the Cayman Islands where I was supposed to be going for a visit in a couple of weeks time. Had to cancel due to this horrible GCA. Very upset.
Oh dear. But thank goodness it happened at home. And you will be able to go at some point. It is very disappointing, especially missing seeing your daughter. 👍🌻
As this probably isn't the best time to be on a long-haul flight to an island n the Caribbean, maybe this is good timing. By the time the virus thing is over, you'll be in a better position to enjoy a nice, long visit.
In the meantime, take care of yourself.
Creamtea, that must have been quite a shock for you, but look on the brighter side of your diagnosis...you could have lost your sight if it had not been diagnosed in time. Better to put up with the prednisone and save your sight.
A few months back I had sudden hearing loss in my left ear together with tinnitus..my audio-neurologist also put me on 60mg of prednisone. and I was lucky, really, no side effects ,except for my moon face. Hearing didn’t come back, but I was glad I tried.
Don’t lose hope CreamT, as you will manage to reduce the prednisone and realize that it much easier to cope than you first thought.
We will all be with you on this journey..
The reducing of 60mg of prednisone for GCA is completely different than for PMR.
One of our girls, who also have/had GCA will give you the info.
Now lift your chin up, you’ll get through this.
YuliK 😷
🌹🌹🌹
Hi,
GCA is not nice, but at least you’ve been diagnosed in time, and 60mg will protect your sight - which is the most important thing.
You will feel odd on that dose- probably hyper, and the side effects you already describe, as well as possible sleepless nights. But the majority usually only last until your body becomes used to the new high dose.
Whatever side effect you have, just ask, someone on here will have had it, and can advise the best way to deal with it.
Your immune system is already compromised with PMR, so just take the precautions you would have anyway - and there is no point in worrying now - it may never happen! Just concentrate on your GCA and controlling that.
It seems that it has happened. This virus is now out of control.
I am very worried. Whats everyones thoughts of the risk of us being more seriously ill due to immunity being compromised.
I have a sense of fatalism. Perhaps it's because here (Canada) we are being given such good information, plus we can see our public health system at its best, having learned a lot from a serious number of deaths caused by SARS years ago. We can all do our bit and follow the usual rules about avoiding crowds and close contact with everyone and anyone, washing our hands frequently, using alcohol based hand sanitizer when soap and water aren't available, and (the hardest thing of all 
) not touching our faces with unwashed hands. And self isolate if we feel coldlike symptoms and alert medical authorities if our symptoms worsen so we can get tested. Don't touch your face! 😱
I wouldn’t say it’s out of control - as such. There may be countries/areas where it’s more pronounced than everyone would like, but everyone is working hard to contain it. ... and as individuals we all have to do our bit.
Ok, with compromised immune systems we are more at risk than those who are 100% healthy- but all you can realistically do is just take the precautions that we are being advised to do on almost an hourly basis and hope for the best.
To be honest - I think it has been out of control from the onset. Simply because at least half of the people who have it don't have any symptoms so neither they nor anyone else knows if they have it and THAT is something that has been discounted in too many models. Because it was missed (for whatever reason) for so long in China and the same mistakes have been made each time it has surfaced in a new country we are permanently playing catch-up.
The link Heron put up yesterday explains it very well - and the countries who learned from the SARS epidemic currently have less problem with Covid because they stopped things sooner.
As you say, all we can do is protect ourselves as best we can. At least the government here is helping protect me and, even more, OH ...
How were you diagnosed with GCA. 🌹
Oh my, I can completely understand a you feeling fed up. The thought of having to do it again is my nightmare. Have a good old mope and a cry, then when you’re ready, adjust your hat and carry on like you have to.
I am sorry that this has happened to you Creamtea. The only comfort is that your eyesight hasn’t been compromised - that is massive really. I expect you do feel wound up on the high dose Pred plus the Leflunomide. Hopefully this won’t be for too long.
The news about Coronavirus is not very encouraging. I am not going out much at all. I think when life is this hard we just have to take it a day at a time. Do cherish yourself, this is a serious systemic disease, you will need plenty of rest. I hope you’ve got someone to give you some TLC and practical help for now. 🌹
So sorry about your postponed visit with your daughter. Mine is due to come in a few weeks with my two grandsons. I am beginning to think this would be unwise ( Australia and the Coronavirus). Take care.
Thank you for your reassurance and yes am very pleased that i have been diagnosed and treated so promptly. So preventing me from losing my sight.
Yes this coronavirus is very worrying especially when our immunity is compromised. Probably best to postpone your Australian visit too.
Sad but best to do our best to be safe.
Keep well
I think the risks to all people who could be considered elderly, whether immune compromised or not, warrant delaying travel, especially to a faraway destination. My daughter is only a thousand miles or so away and they were planning to visit in May, but we have agreed they must cancel if things have heated up by then. It could be a bad time to travel in two months time, but the worst may be over two months after that. We'll know when we get there.
I am no expert. I only have my experience from gca dx April 2019-80 mg prednisone. I discovered after a few months of high dose pred 80, 60, ... that I did better emotionally taking it at night. My crying spells were gone by taking it that way. Also, I didn't really sleep well but just slept when I felt like it and didn't worry about lack of sleep. Of course, I'm fortunate in that I don't have anything I ever have to do, and hubby is wonderful and caring. I've only begun in the past 3 weeks or so to be able to walk. Legs were very weak and wobbly but that's better. Be sure to protect gastro by taking prednisone with yogurt and/or use protonics if you think needed. I have other gastro issues and use Dexilant. It has worked well for me but very expensive plus I am on pureed & minced diet only, so that makes my experience different. One of the best things for you is having knowledgeable, caring doctors and this forum. The ppl on here are so compassionate, knowledgeable and even have great sense of humor. Hang in there. We are here for you.
I too started out on 60 mg of prednisone when I was diagnosed with GCA in November 2018. I struggled with all the side effects and I hated every minute of it. I tapered down very gradually and I am now at 5 mgs! It does get better but it takes time. When you have good people around you for emotional support and and a doctor that is determined to make this as easy as possible for you, it can change your perspective on your beating this disease! This forum has been a godsend for me. I don't comment a lot, but I sure do heed the tidbits of information that helps me and speaks volumes to what I need/should be doing to make myself feel better.
At the beginning of this journey, I got so tired of my medical doctors saying this will get better, just give it time. But you know what, they were right. It does. Not that that is a huge consolation at the point where you are at right now, I know! Find people who are supportive and encouraging and take this day by day. You are in my thoughts and prayers.
That is exactly what I was saying a few minutes ago in an OMERACT video meeting - having supportive and educational info makes a major difference when it comes to anxiety and depression - and, it now occurs to me. the perception of pain etc.
Perception of pain a big one...
So sorry, just when you probably thought you were nearing the end. I have had PMR 2 years and am down to 9 mg. daily from 20........however I am now having serious visual blurring which I HOPE is just droopy eyelids?? See opthalmologist soon for yearly checkup . Really no other symptoms like headaches.....well, maybe an ache or shooting pain here and there, but not temple headaches like I thought one needs to watch for. I was on Leflunomide but my BT began to spike so I am off of it now, just the prednisone. MY rheumatologist wasn't too anxious to let me quit it, but I had a terrible metallic taste in my mouth that's now gone. She wanted me on Leflunomide and off Prednisone since I've had several stress fractures of the spine since starting steroids 2 years ago. Good luck and I am sorry you have had to deall with the GCA just when you headed on the down stretch!
Just been diagnosed 
Recently diagnosed GCA
Just been diagnosed with PMR
Newly diagnosed with GCA
Recently diagnosed with GCA
