Worried about giant cell arteritis
Posted , 5 users are following.
Hi, Im 42 female and worried sick that I have giant cell arteritis. It all started back in mid November 2020. I started to get pressure type pain in the top middle of my head. Also felt very sick, I was tapering from 150mg of setraline to 125mg so I thought it must be that. By end of December 2020 I was having all over headaches that come and go. The pain in my left neck was getting worse and my face including jaw where sore. In January 2021 I made an appointment for the opticians and explained to her my worries. After many tests she sent me straight to the emergency Eye clinic. I got lots of tests done and had very slight swelling behind my eyes. The consultant dismissed mine and the opticians worries saying that I'm to young for giant cell arteritis and in his 30 years doing his job, he had never met anyone under 50 years old with it. I got blood taken and was sent away. While waiting on getting called to have my blood taken I could hear the nurses talking and they were saying they would of gave me steroids just incase. Worried sick I phoned the out of hours doctors who left me some valium to calm me down. ( it didn't work). After nearly having a breakdown with stress I went to A and E, who were nice but agreed with the consultant that I was too young and my eye sight was very good and they could touch my head and scalp and I wasn't crying. They made an appointment for me the next day back at the emergency Eye clinic to see the same consultant. He didn't seem happy to see me and said my bloods were perfect and he knew they would be. Said he wasn't worried, said I won't go blind, I don't have giant cell arteritis ( still don't believe him) but he would send me to the neurologist anyway for my peace of mind. But I'm still having headaches that move about, I still have facial pain and my teeth feel like there getting pushed out my mouth. I get pains coming and going in both temples all day, down behind my ears are tender. I still have blurry eyes that water a lot. My eyes are very painful, they ache and feel tired and strained although I wear my glasses all the time. I have very bad neck pain both sides but mostly left. Headaches thst move about and a tender sore scalp. My right shoulder is sore and the pain goes down my arm in to my thumb. ( could be carpel tunnel syndrome but my wrist splint isn't helping). I also get aching legs and hands. The neurologist phoned last week and was really nice, he said he dosent think I have anything to worry about but is sending me for an MRI to put my mind at ease. I told him about my fear of Giant cell arteritis and how my symptoms are getting worse. He said that Its hard but I need to trust the consultant eye doctor, he said all three of my bloods were fine ad showed no inflammation at all. He thinks I'm having neck headaches as they can be very painful and affect just about every bit of your body. He also thinks that my mind is constantly thinking of Giant cell arteritis and going blind that it's creating the exact symptoms of it. ( I do have severe health anxiety) I told him that my greatest fear is losing my sight and if I was blind I would end it all. He said that that I'll not need to do that as he thinks I'm fine and if I had giant cell arteritis my bloods would of been off and my eyesight would be getting bad by now. I just cannot shake it. And I keep checking Google and up comes giant cell arteritis all the time. I truly do want to trust the eye doctor but I can't. Can someone please help me x
0 likes, 5 replies
peggy_56092 linda60552
Edited
You are not too young for GCA. Symptoms do not always show in blood tests or in biopsies. The only test you need is prednisone (60 to 80 mgs) to see if it relieves the inflammation. Most people have left this site and gone to HealthUnlocked PMRGCA where there are many who have or had GCA. Can you print info regarding the above to show these uninformed medical persons?
Anhaga linda60552
Posted
I don't know where you live or your situation but in your position I'd go to the emergency department of your hospital and make sure they understand your worries about GCA. It is much better you make yourself a thorough nuisance and get properly checked, and perhaps find it isn't GCA, than you risk blindness or perhaps a stroke. You are NOT too young and there are case histories of people younger than you. It is rare. There is, however, a very similar disease called Takayasu disease which may be nothing other than GCA in younger people.
Certainly you should be taken seriously. Even if it is eventually proven it's not GCA, you have something going on which needs to be investigated and not just brushed off with the equivalent of "take two aspirins and don't call me in the morning".
I also suggest that you look for the website HealthUnlocked. The community called PMRGCAuk is very much more active than this one now is, and you will get a lot of helpful advice.
sana45302 linda60552
Posted
Hi Linda, I'm 32 years old and i had my 4th child in July. With lockdown and having all thr children at home i have been rushing around, very busy, exhausted and had my hands full. My pains are in both temples and behind the eyes, my scalp os very tender i can feel bumpy inflamed veins above and behind my right ear. My eyes are getting dry and a gritty feeling like a horrible dull strain. The pains in my temples have been throbbing thats sharp at times and dull at other times. Theres pain all day. Been feeling like this since end of october 2020. I just took paracetamol and nothing was happening. Called the docter numetous amount of times they said its a migraine, tension type headache etc. Went to a & e a few times was really fed up and scared like you of gca. They said i was too young and sent me on my way.
Called my gp again they finally sent me for a blood test, got a call the very next day that my bloods have come back with inflammation in the blood got started on 40mg predislone in december 2020, took them for 4 weeks and got told a rhumatolagist will be in touch. Currently on 10mg (the rhumatolagist has got me tapering off week by week) and the pain is coming back! It s so hard because the rhumatolagist who has sent me for another blood test doesn't believe its gca because "i'm too young" I'm really emotional dont know what to do. I have an appointment with him in March 2021. Hope you and me both get some answers.
Anhaga sana45302
Posted
Try to make sure you can have enough pred to stay at least at 10 mg until your appointment. Please don't taper any more if your symptoms are returning. You've been on the steroids long enough that you should taper extremely slowly form now on (like no more than 1 mg per month. even if they come up with a different diagnosis and treatment for whatever your ailment is. Whatever is going on, if they think it isn't GCA, then they need to investigate and find out what it is!
ptolemy linda60552
Posted
do you think you could suggest that you try steroids just for a week or so as a test?