I was recently diagnosed with PR but I am wondering if I can have GCA. I get blurry vision, I have had my eyes tested and have some retinal vaculitis that is staying stable. I have been have lots of pain in my jaw area, and also it hurts to open my mouth wide , but I thought it was TMJ. I get headaches around my temples. If cold air blows on my forehead it gets really bad, like when the car air conditioner blows on my face. My scalp can get very tender, but main thing I notice is my nose cartlidge is very tender the same time my scalp is . Does this sound like GCA? New to all this, but since my dr. doesnt seem to know a lot about it, I live in a rural area and go to a nicenurse practitioner., she did refer me to a GP who gave the PM diagnosis. I had already been put on periodic prednisone for espisodes of muscle pain fatigue, tie up. for many years, the PM thing is a new thing I am learning about, happy to meet all of you,..
The symptoms you listed sounds to me very much like GCA. I have hade them all two. Especially the slightest bit of wind would be so painful to my head. You need to get this sorted out a.s.a.p. and get a high dose of steroids . I ended up in hospital as it got to much for me to handle. Hope all works out for you but please see a doctor about this today if you can
Willa, does your jaw pain only occur on chewing? If so that is a classic symptom of GCA, and with your other symptoms of blurred vision, head pain around your temples and the effects of cold air blowing on you you should go to the emergency department at your hospital to get this checked out asap as there can be a risk to your eyesight from untreated GCA. If a small biopsy taken from your temple area reveals large cells, then that will be confirmation of GCA, although it is still possible to have GCA without the small sample taken revealing any large cells. However, if GCA is suspected you shouldn't wait for a biopsy before starting on high dose steroids to protect your eyesight. I experienced all the symptoms you mention leading to my diagnosis of GCA. If you do in fact have GCA you should be under the care of a rheumatologist.
Also if you have been experiencing episodes of muscle pain andhave been diagnosed with PMR, then the Prednisone should not be given to you "periodically" but on a continuous long term basis (for up to 2 years or longer) gradually tapering down.
IF YOU READ MY LAST POST YOU WILL SEE THE TROUBLE I WAS IN RE A DIAGNOSIS WHERE I LIVE, AND IT IS NOT RURAL. THE CCG STOPPED MY FUNDING LAST YEAR WITHOUT INFORMING MY CONSULTANTS IN LONDON OR ME. THEY SAID I COULD GO LOCAL. I WAS TO HAVE AN URGENT MRI SCAN AND NEUROLOGIST APPT YET NEVER SAW HIM UNTIL OCTOBER THIS YEAR. IN BETWEEN I HAD FALLS, NOSE BLEEDS THAT NEEDE TO BE CAUTERISED, EXTREMELY HIGH BLOOD PRESSURE NALONG WITH 15 OF THE 20 SYMPTONS. THEY WERE IGNORED DOWN HERE AS NOT URGENT BUT ROUTINE APPTS. CONSEQUENCE OF THAT WAS AFTER NOSE BLEEDS A STROKE, THEN LOSS OF SIGHT AND HEARING IN RIGHT EYE/EAR. AFTER ALL THIS AND A LAWYER ON THE CASE THE CCG SAYS ALONG WITH THE MEDICS HERE. 'YOUR TOO COMPLICATED A CASE FOR US GO BACK TO LONDON WITH FUNDING INSTALLED. I AM THANKFUL TO BE BACK IN LONDON BUT WHAT HAPPENED TO ME SHOULD/COULD HAVE BEEN PREVENTED. SO YOU FIGHT LIKE CRAZY TO BE DIAGNOSED CORRECTLY. I WISH YOU WELL.
When you chew something hard like licorice for a few minutes do your jaw muscles near joint get swollen and stay swollen sort of like a chipmunk about 1.5 inch area.. its like the muscles get blood in them and cant get it back out? It takes a while for the swelling to go down. Not sure what happens.Ive lost some teeth so cant chew hard things much anymore , so havent had that for awhile.
My situation seems to be slowly coming one and getting worse. I will go in for my check up with my eye dr. would they beable to tell ? or does it require a biopsy? thank-you
Well I have had the biopsy done. It came vack
Sorry silly phone..or my sausage fingers don't mix with the tiny keyboard . Where was I..my biopsy came back clear but as I have been told 50% do come back clear but this does not mean you do not have GCA. A rheumatologist will look over the results. You need to get this sorted very fast if it is GCA. You need to be on 60mg if predisonol which my Gp put me on as soon as he saw me. As I also have PMR it was the only thing to do. He than refereed me back to my rheumatologist as I was sitting in his doctors surgery. Took one phone call and only had to wait 3 days. My symptoms were severe head ache in right side of head..especially the temple area. Blurred vision and jaw ache whilst eating. I felt unwell and worn out for about a week before but not everyone has all the symptoms. I did not realise and asked the same questions on here a few month ago. This can be very serious ! I can not stress this enough. Like I said my pain got so bad I could not wait to see my rheumatologist I ended up in a&e and stayed 5 days for pain management till the pred took affect plus I managed to get the biopsy done whilst I was in .
Willa, no my jaw bone didn't swell with GCA, it just hurt when trying to chew anything hard, even meat. So your swelling symptom could be due to a different auto immune condition.
A good ophthalmologist will be able to examine the back of your eyes and rule out GCA, which will at least answer the GCA question for you.
Ask for a referral to a vasculitis clinic immediately. GCA is a medical emergency.
After hearing from all of you, I have decided to make the big trip to the city where the big Rheum specialists are and have them go through my case and get a work up done.. I really have wanted a muscle biopsy because that is where so many of my problems are.. but with the mostly negative Autoimmune standard type test, except sed and CRP, they said there is no point. I have found a number of drs who just want to see the results of blood tests if the shoe doesnt fit they dont want deal with it and send you with nothing, or to another dr.. I have a number of issues so hard to tell what is what.
I cant chew hard things really anymore and I dont eat meat. But I did eat something yesterday that required some real chewing on one side. I didnt hurt that much while chewing but afterwards my jaw area hurt for the rest of the day, and felt throbbing in jaw/temple area. While I generally get muscle pain relief quickly from the prednisone, it took about 3-4 days for the pain/discomfort/ head/jaw pain to lesson. How many people that are diagnosed with GCA have a biopsy to confirm it?
Willa, biopsy is carried out on most people where GCA is suspected. However, high dose steroids should be prescribed immediately in such cases to protect the eysight whilst waiting for the biopsy, which should then be carried out as soon as possible (within 3-4 weeks) otherwise the steroids will hav reduced any inflammation thereby resolving the large cells they are looking for. However, as I mentioned previously, sometimes it is possible to still have GCA even if they don't find any large cells as these can escape the tiny portion of artery removed.
As I also said in my previous post, if you do in fact have PMR, then you should be taking your Prednisone dose continuously rather than just taking it when you feel like. And if you have GCA, then you are putting your eyesight at risk without the correct dose of steroids. You really must act on this, Willa, if it is GCA it won't go away on its own and you will be running the risk of any untreated inflammation coursing through your body affecting other organs, not 'just' your eyes. I do hope you will seek an expert examination and advice, and soon.