1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

temporal arteritis at 22!

Posted , 20 users are following.

meganaw1991
meganaw1991

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 smile

1 like, 58 replies

58 Replies

Next
  • rosie60552
    rosie60552 meganaw1991

    Posted

    This sounds very similar to something I am going through. The doctors have told me it is just stress.. which is so irritating. I have had one doctor tell me that the muscles in my jaw are in spasm and that is the reason for my headaches. I asked him what the spasms are from and he had no good answer. He simply told me to take anti-inflammatory medicine. Like I haven't already tried that? The pain is rediculous at times. It travels throughout my head and into my neck. Is this similar to what you have been going through.
    • mrs_k
      mrs_k rosie60552

      Posted

      Go to the nearest A&E immediately, don't wait just go.

      Explain your symptoms and what you think it is - look up the Guidelines for Treatment and Diagnosis of GCA which are on both the NHS website and the BSR website.

      Do it now - don't wait - if it is GCA and its left untreated you could lose partial or total sight and when its gone - its gone.

      Let us know how you get on please.

    • debbie27473
      debbie27473 rosie60552

      Posted

      Good luck Rosie. I hope you take Mrs K's advice. If you have got GCA, it is classed as a medical emergency and if you haven't at least you will not be scared silly over the weekend. I know it is so tempting to think 'Oh I'll see if it's any worse tomorrow. If it is, then I'll go.' As Mrs K has said, loss of sight through GCA is irreversible. It's just not worth the risk. Please come back online when you can and let us know how you are. Take care.
    • meganaw1991
      meganaw1991 rosie60552

      Posted

      Hi Rosie.. 

      If you type temporal arteritis into google and print off the symptoms etc and take it to them.. they simply cant ignore it!! Thats how I got diagnosed with my hydradenitis (2 years too late once it was already irreversible! !!) .. doctors are useless nowadays. Im so lucky I have the best gp around. 

    • maggie714
      maggie714 mrs_k

      Posted

      I'm 38 and have had a cracked upper molar for 3 years and have been in extreme pain. No one would diagnose and take the tooth out. I finally had it removed 2 weeks ago. The pain in my face went away, but the pain in my temple and neck did not and it is unbearable. Everyone throughout the 3 years said I had tmj. I went to an oral surgeon and told him it hurt when I touch my temples and the headaches would last for days/ week. He suggested it was not tmj but arteritis. I saw an ENT and he said, no way. He asked me if I had bison problems.. I do not. So, he said it can't be that. Well, I took the steroid that the Oral surgeon prescribed and the pain diminished within an hour. So, now I finally know what is wrong with me after all these years. At least I think, Why else would the steroid work? I think the ibuprofen and antibiotics I have been on have caused all of this.

    • david34720
      david34720 mrs_k

      Posted

      I am 42 yr old, living in toronto who is desperate to get info so I can get diagnosed. I have had the normal blood tests to check twice ESR and creatine and they 2 doctors say I am to young to have it, but I have all the symptoms and nothing shows on brain MRI. Current symptoms after a bad virus they don't know what was, tension headaches on temples gradually getting worse over the past couples and more frequent (few times a day), and sometimes they are followed by TIA symptoms such as weakness of numbness in leg, arm, hands, pins and needles in finger tips, little vision problems, now my jaw and neck are getting quite stiff are times, like cracking and popping, but the usual tension is on temples both sides, extreme fatigue, nauseous, light headed at times. I was very active person before this all 3 months ago, but now if i do anything with a little exertion i get tension headaches followed by TIA (stroke)symptoms.. doctors treating it like a joke cause of age and nothing shows on normal blood tests. Has someone gone through this where it hows normal on blood tests? I am scared to death to try to do do anything active now, and any info I would grateful as you might save my life. So I can go back to doctors to force them to test more.

    • heidi85
      heidi85 david34720

      Posted

      Hi David,

      sorry to hear what you are going through. I completely understand you... had same symtoms but cuz of my age 33 is difficult... had nornal test, MRI, but thanks GOD my primary dr is not square so she gave me prednisone i was on 40 mg and little by little will lower it. and thanks GOD the pain is not as bad as before, so hang in there and look for a good dr not a square one. because it is so frustraring and meanwhile your symtoms are worsen and noone is doing about it.

    • david34720
      david34720 heidi85

      Posted

      thanks for the reply, glad to hear you're doing alright. So you actually numbness and weakness like TIA symptoms? and how long till all these lovely symptoms got better?

    • heidi85
      heidi85 david34720

      Posted

      i still have some but mild compared to before. I will say a month of prednisone you will start feeling a lot better

    • david34720
      david34720 heidi85

      Posted

      hey hiedi, i went to see another doc and he said it might be was afraid to prescribe such a high dose. Now one side on of my temple is swollen past few ays and i just got vein going from top of head down in front of my temple and goes on an angle to back of ear today. did you have any of that? i am seeing another doc tomorrow. just curious cause youre pretty young for this disease did you have any bad side effects from the predizone (concerned about that to)..and how long have you been taking that no youre feeling better..i know alot of questions, just feel alone looking for answers with this

    • david34720
      david34720 rosie60552

      Posted

      did you have a swollen temple, and vein come down your temple and behind your ear by chance? and everytime you try to be active you get tension headaches?

    • heidi85
      heidi85 david34720

      Posted

      i completely understand you. no one wants to prescribe you prednisone, but my dr noticed how much it helped me. well first they tried 60 mg and it was too high. 40 mg was the right dose for me... the cons is it makes you a little hyper so i will recommend not to drink it too late, also it makes you hungry which in my case was great cuz with all this stress i lost 15 pounds and thanks GOD i am recovering my weight. my other advice is try to relax... i know itbis frustrating but dont eorry little by littke they will lower the dose i am on 20 mg now

  • mrs_k
    mrs_k meganaw1991

    Posted

    You do now and don't panic.

    I had GCA and it is now in remission.  I also know some younger people and they managed just fine and are now in remission. It takes time and everyone is different, which stands to reason as we have some things in common and a lot of things that just belong to us.

    I am so pleased that you have found medics who are diagnosing you quickly.  It is unusual at your tender age but has been known to happen.

    Where are you located?

    google pmr gca northeast and then if you want to email me on the email address on the site, or call the telephone number if you want to talk.

    I take it that Dilacourt is a form of Prednisolone as I have not come across that one.

    However someone will be along who probably has heard of it.  In the meantime I will do some digging on it.

    You have found this site and that it a great start - you might be young but you are not alone. Everyone on here will do their best to help you through this difficult time, but you will come through it  - just hang on in there.

     

    • meganaw1991
      meganaw1991 mrs_k

      Posted

      This is so reassuring thank you for your kind words. My gp is fab after changing recently. I am located in north lincolnshire so north east also. I will have a look for that site thankyou! Yes dilacort is a steroid tablet which I have taken for the first time tonight. 

      I am always interested in real peoples experiences rather than the generic websites with a broad spectrum of signs symptoms and treatments. So this website is perfect! 

      Thanks again

    • david34720
      david34720 mrs_k

      Posted

      how did you get diagnosed? i am positive i have this but nothing shows on 2 blood tests for this.. any info i would be grateful

Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.