temporal arteritis at 22!
Posted , 20 users are following.
I have been suffering from a tender scalp, neck and shoulder pain and sudden onset depression alongside headaches in the temple for 1 week. Also been feeling generally unwell for a couple of months but I just put this down to tiredness. I went to the doctors who said she is 99% it is GCA regardless of my age. This is due to one other cause of GCA being prolonged anitbiotic treatment (I have hydradenitis suppurative and been on antibiotics for 4 out of the last 5 years).
I am still awaiting test results but having read up on GCA I am panicking about the possible complications. Im on 30mg of dilacort daily as of today.
I was wondering how long it should take for me to feel relief as im still in severe pain. Also if any body else was diagnosed young as all stories I have found have been from 40+.
I am just looking for some friendly advice from someone who has been through or is going through the same as I do not know anyone with GCA!
Thanks in advance 
1 like, 58 replies
denise76179 meganaw1991
Posted
Sorry I really don't have any information for you as my Mum was 82 when she was diagonised. She did have a bad fluey thingo and probably did have antibiotics for a couple of weeks for it but that is all before she started complaining about her head and neck pain. I know she went up and down with the prednisone from 25mg then down then up again on and off for about 2years but she did not know about the slow reduction that Eileen has mentioned. About 6 months after she was okay she had a heart attack and from then on its been stents AF heart medication and generally poor health. You are young with being aware of the possible complications and Drs montioring you may have a much better outcome.
I sure hope so anyway. By the way I'm a patient in Australia in a small town so our Doctors may not always be the up to date specialists that you have.- they are okay but you know what I mean....busy busy people
ms.5755 meganaw1991
Posted
MrsO-UK_Surrey ms.5755
Posted
ms.5755, you may not get a reply to your post as the thread is over a year old.
However, I just wanted to say that I'm sorry to hear you have a diagnosis of temporal arteritis and at such a young age. I'm so glad that you were diagnosed promptly especially as many young people have to jump through hoops to get a diagnosis because medics think they are too young. Every doctor should read your post!
It sounds as though you are doing extremely well to have reduced from the 50mg starting dose right down to 10mg in a year. The slower you go with further reductions from now, the better, remembering that each reduction becomes a higher percentage drop.
I hope your journey to remission continues smoothly.
jen1227 ms.5755
Posted
Hello! I'm almost 33 and I am so scared that I might have it... doctors don't think it's that but I can't find anything else close enough, and I'm petrified. I'm in the US. My primary gave me Prednisone to take to ease my mind until my Rheumatology appointment this coming Friday (Sept 29) . my ESR was 36 and CRP 7.7 when last checked. My main symptom is TENDERNESS WHEN TOUCHING my right temple ... No pain. Did anyone here have just tenderness when palpating? (Occasionally, i get aches on the back of my head - don't know if related). I know the blood tests can be normal and u can still have it, but my ESR and CRP were even higher a few years ago. Way before this started. I've had the tenderness for almost 6 days so far. I'm kind of being brushed off because of my age and subtle symptoms. I've suffered from random hip and shoulder pains in the past too. Sorry this is all over the place!! And advice would be appreciated.
ms.5755 meganaw1991
Posted
Hi there, I was diagnosed with temporal arteritis at 33. I'm an African-American female and have been dealing with it for the past 2 years. I too was on a prolonged dose of antibiotics and started having the symptoms and was ignored for weeks being told I don't fit the profile. You are not alone.
Crys7 meganaw1991
Posted
haley59584 meganaw1991
Posted
HELP!! My left temple is swollen and I've been having horrific headaches woth blured vision, dizziness, and nausea I also believe I have poor blood flow and have gotten varicose veins in legs and maybe arm. Or DVT. I'm terrified. The knot on m left temple came up thursday night out of nowhere which was yestetday night but the headaches have been 3 weeks!!! I'm only 22!!
lodgerUK_NE haley59584
Posted
Haley
If you have not been to see your GP - you need to go to A&E right now and do not delay.
You really should be there now and not posting here..................
It can and does happen at a young age - auto-immune illnesses do not know about statistics and they always are done in a bell curve with the mean at the top and figures falling down both sides.
So you need to be pro-active right now.
Not enough information, are you seeing a Consultant Rheumatologist, when and which medication and when started on it.
haley59584 meganaw1991
Posted
heidi85 meganaw1991
Posted
I have been in the ER MANY TIMES, done any test you can imagine... my inflammation test are a little high but not high enough...
it is been a month with this horrible symptoms: headache in my temples, my scalp is so tender, jaw pain, my arm hurts when using it, throat hurts and flu like symptoms, my GP AND OPTHALMOLOGIST think i have temporal arthritis and i think so too cuz the only think that helps me is the prednisone since my vision was getting blurry they prescribed it as an emergency in another hospital cuz thebone that i went for many times will laugh at my face because i am 33 which is do frustrated... incredible how doctors are so black and white by the book... really sad
lodgerUK_NE heidi85
Posted
heidi85
I am a little confused. Not your fault, it is just that this is an old thread and I assume you have posted here because you are 33.
Have you been given a definite diagnosis with GCA and if so, when (date please). and how much pred have you been started on.If you follow this link to the 'pinned section' you will find links to charities and also support groups which you may find useful.
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
heidi85 meganaw1991
Posted
thank you for your reply... not i will do a biopsy the only problem is that the result can be negative due that i am on 40 mg prednisone... but prednisone is the only thing that works for me... but the problem i have is that i am 33 and doctors paugh at me with exception of my GP AND ofthalmologist. please let me know what other symptoms have you gotten... they know for sure i have an inflammation problem but they dont know where is coming from. they also mentioned vasculitis
lodgerUK_NE heidi85
Posted
GCA is the largest member of the Vasculitis family. As it and its extremely close relative are the most common, more it getting to be known about the need for cause and cure.
On this site, in the search box, put Diagnosis and Treatment of GCA
The British Society of Rheumatologists website holds that information and so does the NHS website. Then you can read, download and keep those guidelines to Diagnosis and Treatment.
BTW CPR and ERS are just markers to indicate something is wrong and then they have to find out what it is. They can both be raised for a kidney infection etc. The medical symptoms always have to be taken into consideration and if the biopsy, which would be useless after being on high doses for 5 days, but if done before that time and shows negative, which can and does happen, then the other symptoms are king.
heidi85 lodgerUK_NE
Posted
Yes, unfortunately I can not stop the prednisone, I feel so bad when i am off, my headaches, vision so blurry, barely move my neck, gets so stiff and face too like i had botox, plus the tenderness in my temples is so bad, i had a small node on right temple that just by touching it hurts.
By any chance is normal to feel flu like symptoms and throat pain, and is a disease that builds in your body for a while till it flares or it just comes from one day to the other.
I want to do the biopsy but i am so scared to stop the prednisone, since it is the only thing that helps me.
Any further information or experiences are appreciate it.
Thank you. I am reading the websites you recommended.
Anhaga heidi85
Posted
Look up takayasu arteritis, in case the symptoms match yours. It's a similar disease to PMR/GCA but afflicts younger people.
heidi85 Anhaga
Posted
thank you my doctor is actually looking into that... if you have takayasu would you kindly express your symptoms please. thank you
Anhaga heidi85
Posted
I don't, but this question had come up before which is why I knew about it. I am, sadly in one sense, well within the accepted age for PMR! Don't have GCA.
Anhaga heidi85
Posted
https://patient.info/doctor/takayasus-arteritis