Posted , 13 users are following.
I have had PMR for 6.5 years and been on steroids for nearly 6 years. Currently on 3.5mg Prednisolone. Recently I have experienced a tender scalp, mainly on the top of my head and I am getting headaches (unusual for me) but I feel they come from the right side of my neck. I also have a tenderness on right side of jaw. None of these symptoms are unbearably painful. What do you think? Can GCA come on gradually?
0 likes, 22 replies
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EileenH Sheilamac_Fife
Posted
Hello stranger!!!
Possibly is the best I can manage. My PMR came on very slowly so there is no reason why GCA can't. It will depend on which arteries are being affected.
Have you tried the chewing gum test? Chew gum at one chew per second for 2 to 3 minutes - do you get jaw pain that goes when you stop chewing?
Sheilamac_Fife EileenH
Posted
Hello Eileen!
I didn't know that test, I will try it. Paracetamol relieved my headache etc last night, so I am probably worrying about nothing
I seemed to lose this site, but I still had HU so I kept up to date there.
EileenH Sheilamac_Fife
Posted
Probably then - that's good! I think it was Aussies who had the idea - a group in Sydney tried it and published the work.
https://www.sydney.edu.au/news-opinion/news/2016/06/01/the-chewing-gum-test-that-could-prevent-blindness-and-save-lives.html
https://www.ncbi.nlm.nih.gov/pubmed/27144869
CeeJay30 EileenH
Posted
EileenH
I have had PMR since about 2013. At that time the forum helped a great deal to let me learn more and find a good doctor. I'm on 6mg daily.
Just this last week I have had head pains. A bruising feeling with numbness radiating to my temples and mouth. I communicated with doctor who seemed to agree I might have an onset of GCA. He placed prescription for 30mg prednisone, tapering over several weeks. However, nothing has changed. I now have more of a headache in addition to the bruise feeling and numbness. I've taken more prednisone (50 mg) because I'm worried. My question to you and others is how long does it take for this large dose to take affect?
EileenH CeeJay30
Posted
If it is enough then you should notice a difference within a short time - but 30mg was never going to be enough if it IS GCA. That is a nothing dose - too high for most pMR, not enough for GCA. The bottom of the range for GCA is 40mg. The effect at 50mg may not be 100% for a few days, but there should be a difference.
However - if your GP thinks it could be GCA he needs to sort out specialist advice asap - he wouldn't just write a script if it were a stroke or heart attack - and GCA is just as much a medical emergency. I assume you are in the USA? Which I assume complicates seeing a specialist at present? Though usually US GPs are terrified of looking after a patient on pred.
Boone EileenH
Posted
Yeah, I went in and spoke with a new GP last week. He said if someone presents with serious, severe symptoms of GCA (which fortunately I did not have), they are immediately put on 80 mg prednisone, and possibly 120 mg, AND immediately scheduled for a biopsy. He said this prescribed treatment was typically on the test that doctors take for certification or re-certification. And I thought a "biopsy" just took a tiny sample of the artery so as to do a diagnosis. No! A GCA biopsy cuts out a section of the artery altogether, sealing up the ends! He showed me a photo of a GCA artery. It was almost entirely closed up with inflammation. As you say, severe GCA symptoms should be treated as a medical emergency. But obviously it is treatable.
I stopped taking atorvastatin last week, per doctor's direction. I'm on 7.5 mg prednisone. I'm feeling pretty good. Blood test next week.
EileenH Boone
Posted
No - that's not entirely true either. 60mg is the most likely, if that doesn't work then 80mg. I don't know where he works - but lots of places you fight for a biopsy!! You need well over an inch of artery. It also helps if the surgeon can tell the difference - it isn't unknown for an inexperienced surgeon to send a bit of vein for histology 😉
Boone EileenH
Posted
Just reporting what an MD geriatrician with over 20 years of experience told me. Yes, he mentioned they'd prefer the biopsy immediately, but usually had to schedule it, hence the immediate large prednisone dose while waiting.
Boone Sheilamac_Fife
Edited
I had a somewhat similar experience. PMR came on sudden about a year ago. Wham! I'm figuring it was triggered by an increased dose of atorvastatin but didn't realize it. In any case, I had a pretty successful monthly taper of prednisone down to zero. Then started having PMR symptoms again, but now with some "feelings" at the temples, sore neck (and up the back of my head), kind of a mild headache.... None of this "persistent" and none of it "severe" (thankfully!). But still, what the heck else could it be?As you say, I don't normally get headaches. I went back to 5 mg prednisone, which fairly well alleviated the symptoms. And I've since gone back to original dose of 10 mg of Atorvastatin. Reduced prednisone to 3.5 mg after a few days, but that wasn't enough. I'm back on 5 mg. I should probably line up a video "office visit" with my GP but haven't gotten around to it.....
Sheilamac_Fife Boone
Posted
thank you for that. I was considering upping my Prednisolone from 3.5 to maybe 5mg and see how I feel.
Kdemers Sheilamac_Fife
Edited
Exact symptoms I had in early GCA. I could not get jaw to relax, top of head tender. If it starts to get really bad call doc. as you do not want to have a stroke or lose vision---you may have to go up on Prednisone. I had a slight stroke. Back of neck and above eyes very painful. Had a scan of head as worried it might be something else. Now the neurologist says there is no sign of where the stroke was, but it was a great warning. Describe your symptoms precisely and ask Doc to write them down. Remember Jaw is key, top of head tenderness also.
Sheilamac_Fife Kdemers
Posted
aargh! It didn't seem bad enough but it was unusual. Thank you for the warning though, I definitely won't let it get worse without ringing GP.
shelagh1952 Sheilamac_Fife
Edited
I would say you have symtoms of GCA, I have both. please go to your doctors and asked for urgent blood check. My doc did mine and i had biopsy all within 1 week. Now monitored extremely closely by NHS, down to 30mg steroids but as my GCA has gone through the roof again i start a new biological therapy drug Tocilizumab.
You must get tested asap as there is a, risk of blindness with untreated GCA, although rare nowadays. Good luck
Sheilamac_Fife shelagh1952
Posted
Thank you for replying. I am monitoring it. My thought today was that if Paracetamol took it away, maybe it wouldn't be GCA.
jeanatDB Sheilamac_Fife
Edited
This is precisely the combination of symptoms my rheumatologist has warned me about. You should urgently consult a doctor.
I began my own illness with undiagnosed PMR masquerading as the aches of winter flu. After about 6 weeks the one sided headaches up from the neck and strongest in right temple,, scalp tenderness and jaw pain with chewing began to develop. I Never had any visual symptoms. The doctors struggled to figure it out and several meds were tried. At first my inflammation markers were 'normal' but by the time the doctors came up with GCA my bloods were screaming in unison with the pain, especially the 24/7 unbearable headache. At the time of diagnosis my CrP reading was up in the 80s. I was put on 60mg prednisone which relieved the headache within a few days and the jaw pain and scalp tenderness disappeared soon after. Soon after a biopsy confirmed an extreme case of GCA.
I've been on prednisone and methotrexate now for 14 months and my CrP has been at 3 for many months.. Currently I am on 8mg prednisone and managing ongoing moderate PMR symptoms under the care of the hospital rheumatologist and my GP. The doctors are all absolutely clear about any return of symptoms , especially jaw pain, temple headaches and scalp tenderness: this is considered to be a potential medical emergency and I must call 111 and go to A&E . Don't mess around with the risk of losing your eyesight or having a stroke.
Boone jeanatDB
Posted
Good to hear you're down off the 60 mg!
I do not have the scalp tenderness or the jaw thing, but definitely a recurring "pressure" at the temples and occasionally across the forehead or up the back of the neck. I guess it's not "severe" since I'm on a low dose of prednisone, but 5 mg is not enough to get rid of these symptoms altogether. So I'm upping to 7.5 today.