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
Crys7 meganaw1991
Posted
What was your crp or esr?
heidi85 Crys7
Posted
You mean my blood results, was 25, they say I am supposed to be 20, so just a little high, but I know i have something, i read that many people have perfect blood work and then have TA. I have been pinched 21 times already, 10 times in the ER. I am going through a bad situation, I am frustrated I thought the US will be better, but unfortunately i havent been lucky, still praying and hoping to find the reason of these horrible symptoms, for now prednisone keeps me breathing.
Crys7 heidi85
Posted
Do you have swollen glands?
heidi85 Crys7
Posted
yes, i do and if it wasn't for prednisone i will be gone at this moment... very scary...
sana45302 meganaw1991
Edited
Hi everyone. I am new here. I'm 32 years old had my baby boy 6 months ago. Everything going fine untill 2 months ago when i developed a never ending headache always at the front of my head, I used pain killers and ignored it for a while. Until the pain moved in to my right temple and around thr right eye. It's dull throbbing can't concentrate on anything. I breastfeed my lil baby and i was so scared. The docters would say its tension headaches. Finally they sent me for a blood test and it came back raised along with the horrible 24/7 headaches. Brushing my hair was also tingles behind my ear its been a while now.
Since yesterday they have put me on 40mg predislone. Secound day of taking it and the pain is subsiding thank god! They hav gave me a months supply for now until i see a rhumatolagist.
ive noticed like for as long as i can remember the veins on my body arms neck chest legs are so transparent they always have been
i dont want to get fat either with the steriods jus about lost the baby weight.
My fear is i'm breastfeeding and i don't want it to affect my baby. I'ts really bringing me down. Any advice or words of encouragement will help i have been in tears and thats making everything worse. I have no support or family.
I'm getting alot of anxiety i want to be able to live and see my baby grow...
Thankyou for listening x
Anhaga sana45302
Posted
You have just replied to a message which is two years old. I may be one of very few people who will see it. This forum has become very quiet over the past couple of years. I only saw your reply because I "followed" this post two years ago!
Congratulations on your baby! Never a dull moment.... 😃
You could consider looking up HealthUnlocked, another health forum, which has a much more active PMR and GCA community - PMRGCAuk. You will find more responses and helpful people online there.
Don't worry about putting on weight from the pred. If you do put on any (and not everyone does) you will lose it again as your dose is gradually tapered. Also, if you have a young child to look after, that will prove a bit of a weight control program in itself! Concentrate instead on looking after yourself as well as you can so that you can get better.
I don't really know but I think you can safely breastfeed while on prednisone as only a very small percentage transfers through the breast milk.
Once you see the rheumatologist you should get more answers. I hope your headache is well in retreat now.
Sometimes the doctors will say that younger people do not get GCA, also called temporal arteritis. It is good that your doctor recognised the seriousness of your symptoms. You may or may not have GCA, but if you do the dose of prednisone may be saving your eyesight or preventing you from having a stroke. Pred is an interesting medication and those of us on it have a bit of a love-hate relationship, but there is no doubt that it can be a miracle worker.
Please do look for us over at HealthUnlocked. You will find support there. My avatar over there is HeronNS.
sana45302 Anhaga
Edited
Hi! Thankyou so much for your quick reply! I'm so greatful that you replied and I will defo checkout Healthunlocked. Alot of things you have mentioned do make sense. I have been taking predislone for 3 days the pain is less than before but I can feel some of the pressure still there. I'm very happy my docter listened. Otherwise with covid its hard to get seen, they listened without me going to the docter. i had my bloods done and they said the esr level was raised so there is inflammation in the body. So i m panicky and anxiety has been kicking in. But I will continue to take it until I get to talk to a rhumatolagist in a month.
Please remember me in your prayers
Thankyou x
Anhaga meganaw1991
Posted
It can take a few days for pred to have its full effect. If things start to build up again you should either call your doctor or go to local hospital emergency department. Make sure that you tell them you have a possible diagnosis of GCA and that they understand it it important you be seen promptly. On the other hand, as you have begun to feel a bit better this is a good sign and you will likely continue to improve. A bit of a waiting game, I'm afraid, but it seems you are in good hands right now. I must get off internet and get out for a walk - actually sunny for first time in days!
Take care.