Hi - I was diagnosed by an out of hours doctor at my local hospital 2 weeks ago. This was followed up by a telephone consultation with my GP a couple of days later with a referral to a Rheumatologist at the Hospital tomorrow.
I was immediately put on 40mg Prednisolone and have had two lots of bloods - my white count was a bit high in the first set.
I must say I have been very impressed with the NHS.
The first doctor however did put the fear of god into me and for the first 7 -10 days I was terrified that I might lose my sight. I am also concerned about the side effects of the Prednisolone.
I have a list of questions as long as my arm to ask the consultant tomorrow.
What can I expect from the consultation? How is it likely to take?
Apart from the medical aspects I want to know how it will affect my lifestyle.
I haven't driven since diagnosed as I was told not to - will I be able to go back to driving? After two weeks of taking steroids would I now be considered 'safe'?
Hi and welcome - sorry you need to be here but you will learn everything you need to know about living with GCA - and a bit more
There are almost no adverse effects of pred that are worse than the ultimate adverse effect of GCA as your doctor obviously communicated very clearly. And most of them can be avoided, managed or mitigated when you know how. Ask - someone will have a suggestion.
Having a high white count is pretty normal when you are on pred so don't worry about that too much.
Don't expect too many answers from the rheumy - few of them really know what actually living with GCA is like and they tend to concentrate on what they want to know about the technical side and they are limited for time, especially in the UK.
In fact, it might be worth you telling us what questions you have and we may well be able to remove a lot from the list! DorsetLady will be along with her crib sheet soon - it answers a lot of questions anyway.
I really want to know what happens next - ongoing care, blood tests, how long will I be on 40mg Pred? How long will I be on them at all?
Do I need more regular eye tests?
I have been told that I won't have a TAB due to Covid.
I am surprised that I haven't been prescribed Aspirin. Should I just take it - the pharmacist said no if I wasn't prescribed it?
I have suffered from Vertigo for the last 3-4 years and, during the first week of diagnosis I was very dizzy and disorientated and taking my Betahistine - I wondered if it was connected to GCA?
During the first week, I was suffering from shortness of breath when walking - this seems to be a bit better now - would that be the steroids?
I have had rheumatic / arthritic conditions all my life so not sure if I have PMR - but my brother has.
I have had a persistent cough and occasional achy chest for many years now - could that be connected? It has been diagnosed as asthma but I'm not convinced it is.
I have been suffering a lot with insomnia and a dry mouth - I assume it's the steroids?
I'm desperate to know if I can drive as my family live a long way away. I live alone.
I'm worried about my immune system being suppressed with Covid - should I be taking extra precautions?
I don't usually have a flu jab (I had a bad reaction the only time I had it) but should I now?
What can/ shouldn't I do to help the condition - diet, lifestyle etc.
Sorry, all a bit random but my mind has been working overtime since diagnosis.
Again - how long is a piece of string! Everyone is different - some need pred for 2 years, some need it for 4 or 5 years. Some even need it for longer.
It all depends on how you respond to the 40mg, whether the specialist thinks that is enough. And it depends on the doctor. Some will see you again in a few weeks to see how you are getting on but not all. Some will send you back to the GP with a tapering regime and "see in 6 months", There is a shortage of rheumatologists which is even worse because of Covid - they may or may not have ongoing clinics with f2f appointments and you may or may not get that "see in 6 months" appointment.
Stop worrying about driving - in fact, you are the first person to say they have been stopped driving! DorsetLady lost the sight in one eye because of GCA that was only diagnosed when that happened but she drives. It won't stop you for long. I can only assume someone was using belt, braces and velcro and worried about the risk of sudden visual loss or a stroke. Seems a bit OTT.
Aspirin is no longer recommended in the most recent guidelines for GCA - it has been assessed that the benefits are far outweighed by the risk of bleeding. Some doctors do, some doctors don't.
Some places are still doing TAB - but only about 40% of suspected GCA cases are positive, it is being realised it is a slightly tarnished gold standard. When it is positive that is great, no-one can argue with the diagnosis but having a negative one does not mean it isn't GCA, it means they didn't find what they were looking for.
The ears CAN be involved in GCA - the former NE charity was instrumental in some research a couple of years ago that proved it - so your vertigo may have been the first signs.
Steroids can cause shortness of breath - but so can GCA, especially if the large arteries are involved. It can also cause cough and sore throat. You can also blame them for the insomnia and possibly the dry mouth - it is for some people but not all. Dry mouth and eyes can be part of the autoimmune part of the illness too.
Now they have realised that corticosteroids are an integral part of managing Covid I think we are all less concerned - no-one has any immunity to Covid until they have had it so everyone is at the same sort of risk of catching it and being REALLY consistent with mask, distancing and handwashing is important. It depends a bit where you are I suppose - is it a hot spot? Do you mix much with others? How much of a risk is it?
The flu jab is recommended - what sort of reaction did you have? Which jab did you have? The one with or the one without adjuvant?
There is plenty of time to worry about diet and lifestyle - but for a start, try to cut carbs, especially processed ones and added sugar. That is very basically antiinflammatory but will also contribute a lot to avoiding weight gain and reduce the risk of developing steroid-induced diabetes. Don't struggle with making major changes all at once - one lady counted her carbs and reduced by 25% to start with, got used to that, reduced by another 25% and so on. You can even LOSE weight on pred if you try hard enough! Careful with fruit - lots of sugar in fruit, may be healthy but it is still carbs.
In terms of lifestyle - REST and not overdoing things. You have a new normal - lot to be said for lockdown, gets you out of a lot of very tiring things. Fatigue is a constant really - and for some people pred can add to it. For others it makes them feel like the Duracell Energiser Bunny - don't be fooled. The battery sometimes runs out very suddenly which can be a bit embarrassing if you are 3/4 way down a ski run as I once was when the SDOFD effect hit (sit down or fall down), more likely is going for a walk and getting stranded too far from home and no bus stop!
Thanks. I was due to be driving away on a small holiday break with my family when I got rushed into IC24. The doctor told me not to drive and not to go away for two reasons - I might not be 'safe' (they seem to use that terminology a lot) to drive and he wanted me to be close to the hospital. I'll see what they have to say tomorrow.
Forgot - eyes: you will need eye pressures checked now to have a baselines than then annually is probably enough but more often is better. Unfortunately, the NHS doesn't necessarily agree and pay for it!! Pred can raised eye pressures but it can usually be well managed with drops. Mine have never budged in 11 years of low dose pred.
That is a lot of questions! But I’m not surprised either.
I have not heard of anyone not being able to drive with GCA or on Pred. They may have wanted to see how you were on the Pred before letting you drive, but it sounds like you are ok?
Insomnia and dry mouth are very much side effects which I have too. The only thing that helps the sleep for me is Amitriptyline ( more side effects!), but others either accept the sleeplessness or have other tricks that work for them. I’m sure you will get some more ideas from them.
The only other thing I feel qualified to answer is that, yes, it does affect lifestyle. We still have the condition which comes with fatigue and if we overdo things it comes back to bite us. We have to treat ourselves with care, especially as our muscles are weakened by the inflammation.
I hope that helps a bit. Do keep coming back here and read others’ posts - this forum is a mine of reliable and very useful information, most of which you won’t get from the doctors!
Thank you - I have been *trying* to keep everything in perspective until I see the consultant tomorrow but it's obviously been on my mind more today. I'll post how I get on.
Would suggest you save it, first time you read it, it will seem life has come to a grinding halt ! It hasn’t, it just different, maybe scary initially - but your treatment is correct - and you will be okay...believe me, I know.
Driving should be fine - so long as you confident to do so - 40mg is high but not as high as it could be in the great scheme of things for GCA.
As PMRpro said, I lost sight in right eye due to misdiagnosis - but was back to driving relatively quickly - and less than 2 years into GCA flew to NZ - on my own. So life doesn’t stop - you just need to get a handle on the new one!
Thank you for the link - very interesting. You have had it a long time. I have been on steroids before - as a child when I had rheumatic fever - but nowhere near as high a dose as I'm on now. I haven't been prescribed Vitamin D or given a steroid card yet. Funny you say about the tenderness returning around 4.00am in the morning - that's what happens with me. I'll look up the book you recommend. I've saved your post and will refer back to it when I need to. Thanks.
I don’t have it any more - in remission (never say it’s gone, gone - tempting fate !) But I did have it for 5 yrs or so all told .
You need VitD/Calcium supplement (prescribed) - and if you can’t get steroid card from pharmacy - if you join the charity they will send one free every year. It’s only £15 a year - so good value!
Membership of the charity is £15 per year. UK Members receive a steroid card, all members receive our magazine three times per year plus invites to webinars and events...more details here pmrgca.co.uk/content/about-...
Hello and welcome to the site Roo4. So glad you found us and attracted our knowledgeable stars straight away. We know the scary place that you are in right now, but I promise that you, adjust, adapt and accept, quite quickly. You will have more questions after your consultation ( Rheumatologists can’t cope with too many at once) just bring them here. I have GCA and PMR. I pay £40.00 to my very well equipped Optician to have my eye health thoroughly checked. I have the start of cataracts but my other tests are reassuring. I will have another test in 6 months, it is worth it for the peace of mind. The hospital tends to keep you waiting for months and prefers you to have a specific complaint to deal with, in my area. I have developed blocked tear ducts due to sinus problems - possibly unrelated to GCA and meds but I have decided to have my first ever private consultation about it. I will also check him out for a future cataract op.
Thank you for the welcome. The fear of it really threw me for a while I must admit. I am actually very impressed with the way everyone is looking after me - I've just received an unscheduled phone call from my GP to ask how I was feeling. That never happened before! Thanks for the tip about paying for private health care - I'll look into that.
I was diagnosed with GCA in April and have never stopped driving. You may also want to consider getting a bone density scan as the Pred can strip your calcium . You may be prescribed a biphosphonate to counteract this. Take care of yourself.
Thanks. I think it may just have been initial advice not to drive due to the fact that I was about to go away. I have also read that it the condition may preclude driving though? I'll double check today.
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I have been on steroids before - as a child when I had rheumatic fever - but nowhere near as high a dose as I'm on now. I haven't been prescribed Vitamin D or given a steroid card yet. Funny you say about the tenderness returning around 4.00am in the morning - that's what happens with me. I'll look up the book you recommend. I've saved your post and will refer back to it when I need to. Thanks. 
Newly diagnosed PMR & GCA 20/9/16
Recently diagnosed with GCA
In need of information as newly diagnosed
newly diagnosed with PMR
GCA diagnosed 3 weeks ago
