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?
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?
and I am getting headaches (unusual for me)
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…
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.
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
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.
I had that scalp pain for about 2 months this year
on the top & 1/2 way down .I am assuming that it is from the PMR but not sure about the headaches since I get them often. I lost 95% of my hair last year & was devastated since I have had long hair for decades but now my new 5"long hair is falling out . The worst thing about this disease is having to take Prednisone but I couldn’t walk when I got it 2 1/2 years ago since I was screaming in pain to get up ,down,or try & walk so for the ability walk again I’m grateful.I was always thin too so to have put on 45 lbs. was devastating & I eat like a bird so it’s not like I can do anything about it. Best wishes !
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.
thank you for that. I was considering upping my Prednisolone from 3.5 to maybe 5mg and see how I feel.
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.
Thank you for replying. I am monitoring it. My thought today was that if Paracetamol took it away, maybe it wouldn’t be GCA.
Probably then - that’s good! I think it was Aussies who had the idea - a group in Sydney tried it and published the work.
I was put on 60mg prednisone… Currently I am on 8mg prednisone…
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.
Did you take Methotrexate? That is when my hair fell out.
No. I have been on Prednisone for over 2 years now & I lost most of my hair after one year on Prednisone. At the time I lost most of my hair I was down to 5mgs after one year on Prednisone. I never knew that was one more side effect. Half of my calf muscle tore completely off the bone & all I did was get up from the couch & take one step & I felt a pop & immediately was limping so I sat down & 3 hours later I got up & took just 10 steps & I screamed in agony when the rest of the muscle tore off it was in the middle of the night & I couldn’t get up the stairs to have my husband take me to the hospital. I know now what it was since I had an emergency MRI the next day & they don’t do surgery unless the rest of my calf muscle tears off. I also had become completely incontinent after one year on Prednisone & didn’t even feel it happening while sitting on the couch. I had 2 urethra surgeries & 1 bladder surgery & I am about 80% better but I & the URO/Gyno thought it would be 100% & he said he had never had an unsuccessful surgery & attributed it to the year on steroids.When he tried to sew me up inside he said the stitches went right through my tissue so he had to sew me up with microsurgery from the outside in. My skin on the outside tears & bruises so easy & I have worse skin than my Mom had at 93. I pray that someone finds a cure for PMR/GCA. Sorry for rambling on !!! Just venting & sharing my experiences aside from gaining 45 lbs.& hardly eat anything.
I’ve been losing my hair this past few months. not nearly as much as you describe thank goodness, but I don’t know when it will stop! My hair first went curly with the Prednisolone and it still bends where it never did before, but at 3mg I was surprised to find a new side effect! it’s very distressing, not to mention, messy!
Oh goodness, on top of everything else! I assumed that if one is going to loose hair it would happen soon after starting prednisone therapy. This hasn’t happened to me, yet! But my hair has gone quite curly which I have regarded as one of the few blessings of having GCA. Now I realise my hair could still fall out as the pred dose goes down. Arrrgh!
I am not sure if my hair fell out because of lowering the dose over a long period of time but maybe it is more the length of time I was on it which was starting at the one year mark when massive amounts came out. Now my new 5 inches is falling out in massive amounts. I don’t recognize that fat ,balding girl in the mirror .
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?
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.