Hello all! I’ll try to make this story as brief as possible. I am a 30 year old other wise healthy before this. In September 2018 I got a bad strep infection. (I had my tonsils out at 18 and hadn’t had strep again till now, fun fact tonsils regrow!) I went on antibiotics after antibiotics but they couldn’t clear the infection completely. After I would finish an antibiotic I would have 2 days till strep was back and they would go to the next high antibiotic. Finally I had to have my tonsils removed a second time Nov (th and that did the trick for the strep infection. Ok so during that time I started to develop weird sensations of tingling in left side of face, and left hip pain. With the coughing my left side temple would hurt. Now since I’ve healed from tonsils out I’ve had weird tingles in face (both sides at times but mostly left) , tips of my shoulders pain, left hip pain, and weird sensations through arms at times. Now when I look this up of course I see PMR and GCA... I know I’m not in age range but I’ve brought it up to my doc. We even had a brain mri with contrast and everything was good there. That was OCT 30th 2018 before tonsiks out. I will mention I had a bad allergic reaction to Bactrim and made my head feels crazy tingles and burning etc. but so I’ve seen a rheumatologist, neurologist, and they both don’t think that is possible cause of my age and just told me to wait 2 more months to see if symptoms get better on own (she said I had brucitus in both shoulders and hip) But since having tonsils out I’ve been left with weird temple pressure (not painful just notice it) sore jaw all through day (can eat ok), ear pressure, shoulder and hip pain (feels better in morning, worse as day goes). I’ve had all kinds of blood work sed rate normal , CRP mildly elevates to 7 at times(shoots back down to .5 with any prednisone dose), total blood count normal, negative RA, negative ANA, and all kinds of other things normal. I will say I did low does prednisone with no effect , and even a 60mg 20 day taper (60mg 5 days, 40mg 5 days, etc )just to see if I had response and jaw shoulders and hip pain never went away I noticed maybe less pressure in sinus and temples. Now I’m on last day of 10mg. I’m I crazy to be worried it’s GCA?? Doc said we may be looking at Fibromyaglia since the lack of response to prednisone that could have been triggered by the bad strep infection I went through. What do you guys think? Can’t see a risen swollen artery , and temples don’t hurt when pressed.
30 and worried about possible GCA please give me ... - PMRGCAuk
30 and worried about possible GCA please give me your thoughts.
If you have done a 20-day initial high dose pred taper and there was no effect at all on the symptoms I think it is fair to say it is very unlikely to be PMR/GCA. 10 days at 40mg and above would have achieved something in the shoulder/hip pain even if the GCA-type problems persisted. Added to which, jaw pain that isn't a problem when eating isn't typical of GCA: claudication pain occurs suring eating/talking and goes away when you stop.
For the moment be patient - it is very possible this is due to the infection and will improve. But you will find it very difficult to find a doctor who would consider GCA in someone your age or even at an older age with the symptoms you describe. None of it is typical really.
Thank you for this. You guys are helping put my mind at ease. Yes it was very hard. My original primary, the rheumatologist and neurologist all were like no nope your age. I was lucky the second primary I saw was open to be like yes this seems like it but it’s prob not for your age let’s see how you respond to prednisone. I am/was just so scared to have it be going on and lose my sight or have a stoke etc. they all don’t have answers for me just that bad infections can damage your body in weird ways. Except the new primary is thinking Fibromyaglia now. But he still wants to check all blood work again in one month.
There is inflammation SOMEWHERE, the CRP increase suggests that and that it falls with pred. But it could be anywhere - chest infections send CRP up for example. That isn't in line with fibro.
But it does sound as if you have something - and that you have some fairly decent doctors who aren't just dismissing you. All the best - I hope it all goes away as you recover from the infection but if not, that they find an answer.
Yes that’s what I was thinking... it falls with Pred but as far as I know I’m not sick with any typical cold or chest infection. Just sinuses are always inflammed. That’s another thing I’ve done is blood and skin allergy Panels and I’m literally allergic to nothing they tested. Very odd but they seem non concerned about the CRP said literally anything can make it jump. I’ll have to do more research I guess as to what it could be that responds to Pred blood work wise but not make shoulder, jaw, or hip pain better. Ty for all your help and helping ease my mind that it’s not GCA
Agree with PMRpro, doesn’t sound typical of GCA, if my illness was anything to go by anyway.
I can fully understand that you want an answer to your problems, but with your symptoms (and response to them on Pred) plus your age I don’t think you’ve found it in GCA.
Last year, or maybe longer, we did have a guy in his early 40s and some of his symptoms suggested GCA, but it wasn’t. If I can find any of his posts I’ll see what it turned out to be.
In the meanwhile, I think you need further investigation - sorry!
Thank you so much for your reply! I was hoping that’s what it meant is that it prob wasn’t it just from the lack of response on high prednisone. I was so grateful my primary doc didn’t think it was too crazy to try. Since symptoms seemed text book. Yes if you find that let me know! 
Hello, as we’re at the head scratching stage and you’ve had so much going on in your body, especially your upper body this might be worth reading. I thought I was having a flare of GCA and PMR but it was this.
physio-pedia.com/Sternoclei...
Very interesting! My neck is very tight. And having the ringing in ears too.
I don't have any idea of what you have, though I doubt that it's GCA. I do know, from experience, that you can rely on the advice of PMRpro and DorsetLady above.
I also know that you need to get off the beastly Prednisolone as soon as possible if you don't have GCA/ PMR. - So stay in touch.
All the best
Arthur
Thank you so much! And yes as of today I’m tapered off
That's excellent news Natatat. I lost an eye to GCA about 15 months ago, (as did dear DorsetLady). So I am stuck with the Preds to try to save my second eye. The side-effects are beastly in my case They include osteoporosis and diabetes 2 - and other horrid things. Better than losing a second eye though.
You do need to keep a careful watching brief on all of this Natatat - but hopefully it's not GCA.
Stay with us for a while my friend.
Arthur
That’s awful 
I’m so glad you still have sight in one eye and that you are here with us today! GCA is very intense and yes I didn’t feel myself on the steroids for the 20 days I was. I appreciate yalls feedback so much. I really hope it’s not GCA , you guys have made me feel more comfortable that it’s not. It’s hard to trust docs when they won’t hear you out just because of your age. My anxiety about it is getting better about not freaking out thinking it’s GCA but I was so worried thinking I may lose my sight while driving my child etc
I don't think you need to fear blindness suddenly striking you whilst driving. It usually happens over the course of a day or so - as I understand it - and as mine did.
My symptoms, which I believe are fairly classic or typical were:-
Progressively worsening jaw pain such that after a week or so, I couldn't do more than about ten chews. Went to the Doc.
Three weeks late - a worsening itch all over the left side of my scalp. After a couple of weeks I went to the Doc, who misdiagnosed as trigeminal neuralgia.
two weeks later - a black curtain started to descend over my right eye. Docs too busy to see me at all. Reception told me to go to an optician, who immediately correctly diagnosed it as probable GCA, and sat me down while he made an emergency appointment at hospital. All too late by then!
I believe that some people develop aching shoulders while this is going on.
I understand that, on average, doctors only see maybe one case in their working lifetime. Maybe that's why they are so God-awful bad at spotting it.
As I said to you before - keep a close watch on it and bang your drum very loudly if you strongly suspect that you may have GCA. You would then need a very fast referral to someone (like an experienced rheumatologist) who knows what the heck they are talking about.
Geez I am truly sorry that happened to you . I don’t know how old you are but if you were over 50 you would think they would’ve considered it! I know it’s the most common Vasculitis for over 50 but even then I guess it’s still pretty rare since Vasculitis in itself is rare.
Yes I have seen 2 primary, one neurologist , and one rheumatologist . The 2 specialist basically were like you are 30! That’s not even possible for you! Mind you I had to bring it up to them as they didn’t even consider it. They all agree it’s prob just some damage from my terrible months of repeat strep infection. My new primary thinks that it could’ve “activated” Fibromyaglia in me since all of this started around when I first got strep in September. On 60mg prednisone taper it didn’t do anything for weird sensations and shoulder hip pain or jaw . But my jaw is like dull ache, I can chew fine and everything. Sounds weird but my shoulder is actually feeling better off prednisone. Very strange.
I am 78 Natatat - so maybe I am a more likely candidate than you for GCA.. Mind you - I always fancied myself as a bit of a Greek God until all this happened. Now I'm more of a stagnating geriatric blob.. Heyho.
I still, on the whole, doubt that you have GCA - but it's just as well to know about it - I wish I had. Oh Brother - Don't I just!
It does sound as though you are in good hands.
Take care my friend
Arthur
Hey well it sounds like you don’t miss a beat to me! And that it would take more than GCA to keep you down thank you for your kindness and helpful information. It’s true if anything I sure have learned a lot!
It was my pleasure Natatat.
"Geez" and "Sure" in your notes - Aha! - Are you American? - or Canadian?
I live in a little village in Surrey, England - called Wonersh. If you look at the middle of Wonersh on Google Earth, you will find "The Grantley Arms" - the village inn, and drinking hole.
I guess that we are about done Natatat - but do have a squeak anytime you are bothered about all this. All of us other squeakers on here will be only too pleased to talk to you.
Haha! Yes American! A Texan at that!” Y’all “ is another you will catch me using! Haha. Thank you again!
Oh My Goodness! Dixie! You are the first Texan I have ever spoken with - Or Texican as John Wayne would have us believe (was he right?).
We studied your huge state quite a lot at school - all those many years ago.
Let's see - Houston, Dallas (JFK), Austin, San Antonio, Amarillo, blessed Arlington - how am I doing?
Confederates - Rodeos - The Alamo, Red River, bluebonnet flowers (we don't have them) - I'm getting quite excited now!
Don't Mess with Texas - or something like that. Does that make sense?
Must stop boring you.
Arthur
My 'GCA' turned out to be trigeminal neuralgia! worth a thought as the symptoms are much the same.
That was actually what my first primary doc said was going on. But I don’t have severe pain in my face just weird pressure and tingles. Idk if there can be mild forms of it but idk wish I had an answer. Hopefully more blood work in a month will turn up some answer.
That's ironic Stella. My diagnosis of trigeminal neuralgia (for which I was given codeine) - turned out to be GCA, for which I should have been given Prednisolone. Hence the loss of an eye. Heyho!
How old are you Arthur ? If you don’t mind me asking.
Could be a mild form?
That’s what I was thinking but didn’t know if that was possible or not
Hmmm. Maybe that would result in a mild form of blindness.
Quite possible if the pressure on the nerve is not too great.
I have been struggling for 2years with dx of Polymyalgia, GCA, rheumatoid arthritis with on and off prednisone and now on Methotrexate, off prednisone, and having real problems with vision. Opthomologists can't seem to find why I have extreme double vision which makes driving, tv watching, etc very difficult. Rheumatologist, neurosurgeon, don't have answers. I have recently found a gerantologist who has ordered numerous tests and I have an appointment with opthomologist who specializes in double vision. No one thinks the vision problem is GCA.. I know this doesn't help with your problem Natatat, but maybe someone on this blog can give needed advice to me. In 2 years I have gone from healthy "can do anything" woman to 80 year old depressed, exhausted, Aching bruised, stiff finger woman who has dreads seeing day light. Sorry for This poor me post but writing it down has helped me see the picture
Do they still consider you had GCA/PMR? With no pred that may well have flared - mtx does nothing for it.
Everyone here is very helpful! I’m positive they will be able to give great guidance. I hope you can get some answers soon.
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