Hi Guys
I have just joined after being taken ill ten days ago. Went to A and E feeling horrendous with temp, awful headache in the absence of an infection. High inflammation markers.
Docs said I have GCA and I am in pred. Had biopsy five days ago.
Now have sensitive hair/scalp.
Did anyone else think this could be a mistake?
Hi Elaine-W,
Welcome to the club you never wanted to join!
Firstly thank God this was caught, if indeed it is GCA. You do know the consequences of it going undiagnosed don't you?
The drama and fright could have saved your eyesight and of course you are in shock and possibly denial too. But at least it sounds like you are in good thorough hands. You are probably on a high dose of Prednisalone now which brings with it a myriad of unpleasant side effects for some and it is all we have to treat this dangerous disease and stop it from gobbling up our entire lives.
You will find a lot of knowledgeable, experienced people on this forum to help you with your questions as time goes on. It has been a life- line to me and many others. You have my sympathy for your current bewildered state.
What makes you think the diagnosis is a mistake?
I don't know really.
I suppose I want it to be.
Did anyone else get scalp sensitivity after the headache had begun to settle down?
I had the sensitive scalp for ages before diagnosis I used to pay for hair conditioning treatments because the head massage was bliss while it lasted. I put it down to work stress.Symptoms shift with this, no sooner you get to grips with one symptom something else equally horrible pops up.
It all sounds very familiar to me - sensitive hair/scalp was one of my original symptoms before diagnosis. What starting dose of steroids have you been given and have you been given any referrals to rheumatology?
What was the result of the biopsy? Unfortunately a negative result doesn't mean you haven't got it, but if it is positive then you know where you are with it.
Give us a bit more information so that we can help.
I have been referred to the rheumatologist who saw me at the hospital. I was admitted for four days. Waiting for an appointment. They said within two weeks. Taking 40mgs preg. I can't sleep. Scalp sensitivity has only been for the last two days. It is freaking me out. If I am honest as I thought there was a chance I don't have it
Yes, 40mg is the usual starting dose where there are no visual disturbances (when there are visual problems the starting dose is much higher). On 40mg Pred I was climbing the walls and painting the ceilings, so to speak.
I understand just how frightening it all is; the side effects of Pred plus the condition itself is enough to make anyone want to get under the duvet and opt out. But the consequences of untreated inflammation can be much worse so, difficult as it is, you need to concentrate on yourself for a while and give yourself proper time to recover, adjust and take control of your situation. What you really should not do is rush around and do all the things that have been waiting for your attention - you are ill and whatever anyone else thinks, you need recovery time and rest.
Please let us know how you are getting on daily (or even nightly). Any questions or queries please just ask. It's a real shame that consultants and GP's are so rushed there isn't any time for them to discuss things properly, but that's where we come in. Hopefully we can untangle any knots for you.
I am so grateful to be able to speak to other people who have been through this. I will be in touch and hope to be able to be of support to others too
I also had horrendous headaches which weren't helped by any sort of painkillers and high inflammation markers.
I didn't have any sensitive scalp until after the biopsy which was positive.
I had never heard of GCA but by that time I had my steroid regime and was feeling great (60mg). I was relieved it was a firm diagnosis and they knew how to make me feel well. If it wasn't GCA it could have been worse.
I am impressed they diagnosed you in time before you lost your sight.
Although it isn't something you would have queued up for the people on this forum are supportive and well informed.
Stay in touch.
Hi Elaine - yes a scalp ache was the first sign of my GCA - it was mostly on the top of my head in a small circle which gradually got bigger. It kinda feels like a tight steel hair net crushing the scalp from the temples upwards. I too was started on 40mg prednisalone last Dec - now down to 12.5mg and the headaches have returned. You may also be prescribed low doses of methatrexate to control the immune system (the pred just reduces inflammation).
In my experience over the last year, you can expect a variety of side effects including dizzy spells, upset tummy and diarrhea, irregular heartbeat, numb feet, hard skin on heels, toes, back of hands, and possibly more bruising than usual from light knocks and bumps that you otherwise wouldn't get. You may also gain some weight - your legs/feet will feel like lead weights at times - and you will be very tired, exhausted, and sleepy a lot.
If you start seeing bright jagged flashing on the periphery of your vision - get straight down to a&e as an emergency - your eyesight is at risk because this disease can starve veins and capillaries around the optic nerve of blood, damaging it.
Unfortunately there's little known about the cause of GCA - I've been told it can be anything from lifestyle to genetics and there is no current cure - they have to control the inflammation and immune system till it burns itself out. How long that takes is ill defined and varies a lot from one individual to another. It typically goes on for more than 2yrs. These are all the things I wish they'd told me at the beginning and I've had to pick it all up bit by bit over the last 11 mths.
Also be careful reducing pred if you're on it for a long time - stopping it dead can cause a heart attack or stroke. You'll find it useful to get a blood pressure machine and keep a regular check on your readings - they're only twenty quid or so from a chemist.
Hope that helps and that you can benefit from my experiences - it's very scary and bewildering at first - I remember being terrified - but with a little knowledge up front hopefully it'll help you to stay calm and deal with it better than I did. 
Hi Brantuk,
You mentioned in your reply to Elaine about your headaches returning. What have you done about that? If they are similar to your original pains then I fear you may be having a flare. Although you may not realise it, it does sound as if you have dropped below the dose that is controlling your inflammation. Might be an idea to go back up to the last dose you felt okay at, just in case. This time of the year can be difficult - run up to Christmas stressful and generally more inclement weather, more viruses etc about.
I might be wrong, but just be aware.
Brantuk, reading your post was like a mirror of my life also over the last 12 months, swollen arteries were my first sign, the flashing lights and double vision followed shortly after, jaw ache, loss of appetite, nausea etc. In march my left foot went numb, my right has just followed it. I have had nerve conduction tests and nothing wrong was found. I started on 40gms. of Pred. I am now down to 17.5gms and slowly after struggling with withdrawal symptoms, seem settled. The people on here are worth their weight in gold, they always help, and I don't know where I would be without them, thank you one and all!
Welcome Elaine you will find this site invaluable. I had sensitive scalp before GCA diagnosis which hurt every morning washing my hair in shower. It even gave me a jab of pain at night as the back of my head came into contact with pillow. I also had terrible headaches (which prior to this never happened to me). I also had awful jaw pain and could not chew food (lived on soup and porridge !) The jaw pain I consulted my dentist who said it was jaw trauma. Thankfully the cluster of symptoms lead to an early diagnosis of GCA by a visiting newly trained and highly motivated GP. The same day this was confirmed with an ESR of 124.
Whilst the prospect of Prednisolone for a couple of years along with the associated counter balance drugs can seem a bit depressing at times. I am just so grateful that I can take steps to protect my eyesight. The individual symptoms can so easily allow GCA diagnosis to slip through the net.
Good luck.
Hi Elaine... I felt exactly the same as you... I was in complete denial.. for me once the head pains had gone the hardest thing to deal with was the phycological effect of discovering I had GCA. I was so angry and sad, mostly at the same time. This of course was fuelled by the Prednisolone side effects. I was in a mess and not getting the support I needed from my rheumatologist. Nearly 2 years down a very rocky GCA road and I am in a better place mentally. For me these support groups have been my lifeline helping guiding and supporting me at every step. Xxx
And yes I did have very sensitive scalp, felt like very severe sunburn, the roots of my hair hurt and I was in pain trying to brush or comb my hair.
im not sure if i should start a new conversation on the group or whether I can just blether on. I am going to allow myself a few days to mope. Have taken the dog for walks in the winter sunshine. Don't like the idea of being the person everyone in the family worries about. That is my job. I am usually a positive puppy person and I hope to wake up tomorrow and just push on. I don't feel normal at the moment though. Is it because I am getting used to the illness or the steroids?
I feel ever so slightly like I am observing myself and not completely here. Maybe a wee bit semi detached.
Yep, you're like most of us on here.
We've discussed this a few times over the years - we are the "doers" of life, the organisers, the mother hens (sorry chaps, but you know what I mean), the 'I'll do it ' brigade - and it comes very difficult when we have to relinquish that mantle, albeit temporarily.
Your not feeling normal is also quite common, mixture of the Pred and coming to terms with the fact that your life will be slightly different for a while. You don't have to stop living, but you do have to adjust your lifestyle - take things a little easier - you cannot continue to be Superwoman, but that's not a crime.
Once you've got your head around having GCA, just be grateful it was a timely diagnosis (could have been a lot worse), and your body has acclimatised itself to Pred, although you probably will get some side effects, you will again feel that you are in control of the situation. Then, you can get on with living again.
We're all a lot stronger mentally that we realise, it's just sometimes it takes a little while to discover that.
Thank you for your response. How lucky for me that I clicked on the group and found you all. Before this I had a family trip to America and I am so grateful that I wasn't taken sick over there. I obviously had travel insurance but it still would have been a nightmare with trying to get back etc. god works in mysterious ways.
My GCA started with slight fluey temperature alongside 2 weeks of progressively dreadful headaches, so bad that I went to a and e on a Sunday where, fortunately a wonderful doctor recognised the symptoms. My GP put me on 30mg pred,adcal and omeprozole which immediately worked despite feeling like a spring ready to bounce in every direction. I have had a flare since diagnosis in March 2015 due to trying to reduce too quickly... as you will see on this forum, the medical profession seems not to treat patients individually. When you have recovered from the shock, hopefully you will have more confidence and begin to know the signs of your illness regarding reducing pred or not as the case may be. Good luck
The same. On the Saturday afternoon I had a pain in my head followed about an hour later with temperature and shaking. Began to feel really unwell.
Temp 40.4. left severe collar bone pain. Don't know what that was about.
I get severe migraine and I have learnt to ride it out however bad it is.
This was different though and I just knew I was really ill. Went to A and E the next morning. Something was telling me this was wrong. Thank goodness.
ESR 32 and CRP 112. I feel so fortunate to have this group to run things though with. Thank you everyone
Hi DorsetLady and thanks for your suggestion which I think is correct - it does feel like a flare. I've been tapering 2.5mg per fortnight under Rheumy's instruction and currently on 12.5 mg but it does feel a bit quick - last month I came close to a TIA with bp 213/120 and the ambulance rushed me down to the infirmary. Examined by stroke team and had a CT scan which showed no signs of damage so I think I was lucky. I'm now on blood thinners, cholesterol, reducers and pressure control pills.
I'm trying to bear out the flare and staying on current preds dose till I see Rheumy again on the 6 Dec. I'm just taking paracetomol for now for the headache - but I'm sure you're right - he may put me back up to 15mg preds next week - so I'm just hanging in a few more days till I see him. Thank you so much for your concern - it's very much appreciated.
Yeah - xmas tell me about it - it's also my birthday on the 9th and 1st wedding anniversary tomorrow lol.
Well congratulations on your last sentence. No wonder you are not in a good place with your reductions will all that and other medical things going on!
I would imagine the Rheumy will up your Pred, and although that's a shame, it's for the best. And don't let him pressurise you into reducing too quickly. 2.5mg a fortnight is, I think, too fast once you get to around 15mg. Monthly would be better, or 1mg every 2 weeks - it really depends on you, and how you feel - not what the doctor wants. They can be very intransigent with their reduction plans sometimes. What looks good on paper, may or may not work in real life! And they're apt to ignore that.
Take care, and good luck.
Thanks DL
Just to add to DL's post - once you get to 10mg you need to slow the reduction right down, The recommendations some years ago were to never reduce more than 10% of the current dose at one time - you are already at a stage where 2.5mg at a time is a big reduction.
After 10mg you are in the realm where you adrenal glands must wake up - and they do that best when they aren't rushed. 1mg a month is more than enough!
Have been on 10mgs pred for 2 months and am a bit loathe to reduce during winter months owing to all the usual bugs but, I would be very grateful if I could be advised about the very gradual next step...
healthunlocked.com/pmrgcauk...
This is being used in a clinical study in Leeds - with very positive feedback from patients who say it has been the best reduction they have used.
Total shock re operation 
What a shock
Still here still fighting
Still pushing for GCA diagnosis…
