A little advice please. My GP called me this afternoon. I discussed me possibly having GCA, he told me that he's past the buck onto my Rheumy. I ask him how it could be confirmed whether in fact I do have GCA or possibly TMJ as jaw is still achy and now on the right side too and tomorrow I'll have been taking 40 mg of Pred. Always worse in the mornings. He said I'd need a biopsy to confirm this. Is there anyone that can offer me help as to whether a biopsy or MRI which would be the best and has anyone had a false negative from their biopsy. No doubt whatever one is decided by my rheumy I'll have to pay for.
Hello. Plenty of us have had a negative biopsy but this hasn’t changed our diagnosis because of symptom history and response to Pred. Good response to Pred is very useful but only happens if you are on enough Pred and 40mg is at the lower end for starting with GCA. As soon as you start Pred the chances of a positive biopsy goes down and it affects an MRI too. Are you on a fast track referral? Do you have any other symptoms and what sort of jaw pain is it? What makes it worse and what makes it better?
The trouble here is that if you have been on high dose steroids for as little as a fortnight a biopsy can give false negative results.
You can get a Pet CT scan / High Quality Ultrasound , but again you cannot guarantee that you will show evidence of previous inflammation if you have been on steroids , not everybody will , so potentially you could fork out on two tests that really won't put your mind at rest.
Basically , one way , and a truly horrible way at that is to do a rapid steroid taper under supervision to see if Disease activity and Inflammatory markers spike again, which some Specialists whom do not originally diagnose your symptoms do sometimes ask people to do , from experience I know if you can avoid this situation it is better avoided.
And , it still wouldn't help you work out if you just required higher steroids dose than you are on now because you were diagnosed with GCA for some a month or needed other care and medications if you have a TMJ or some type of Neuralgia adding to your symptoms.
So basically it's hard to advise you what would be best.
Having your inflammatory markers checked again and regularly. Seeing a Dentist to check Tooth Health . Having an assessment for TMJ to rule it out with ENT would help . Getting a referral to a Pain Clinic so that they can see if they are convinced that it is something else or GCA alone but able to give your GP better advice on your Pain Relief. And if course a good appointment and discussion with the Rheumatologist , if your current one is not helping you or listening then maybe a second opinion.
Obviously if things continue , a check with the Emergency Eye Clinic or A and E , but whatever the case it may be difficult to get a regular appointment , and Emergency will be very busy because if the current Health Crisis.
I feel for you , have you tried speaking to another GP at your surgery ?
Thanks , Pro , Do you think that Staplehurst would be better off with an ultrasound or an MRI Pro or like me do you think just like the biopsy these may well just be false negative or inconclusive results because of the time on steroids?
No idea to be honest - all depends what is available at present though doesn't it? Under the circumstances I'd want it treated as GCA - no room for error when one eye is already compromised.
That's what I don't understand about their attitude , if they are now doubting the GCA , what are they attributing the vision loss too ?
They need to explain that .
I can't believe how many Doctors seem to be so Ill informed or just too arrogant to ask for advice or discuss things with diagnosing Doctors.
Too many of Us are left flying in the wind , and in the current circumstances they can't just leave things to another appointment as they have no real idea when they can see anyone or will be able to get tests done.
They should make more definite decisions, especially at the moment , a number of people are being lost in the system in this crisis .
That was an NHS registrar that said he didn't think I had it. It was my rheumy that started me on the 40 mg Pred until result of CRP came back....see my reply Bearyeyed. My rheumy wasn't sure whether to start me on 60 mg or 40 mg, I guess just needed confirmation of blood test first, but did advise me if I had any other symptoms to contact him or increase Pred to 60 mg. Are you saying that 40 mg isn't enough, only been taking them a week tomorrow. Too frightened to start to reduce just in case it is GCA. However, this jaw prob has been going on for a very long time, even before I saw the rhuemy back in Dec 2019. It showed up in achy top teeth to begin with. I know I do get over anxious like most of us do with suffering PMR that can lead to GCA. Beginning to think that RA is slightly better than GCA. But RA is Rheumatoid Arthritis where Polymyalgia is totally different and vasular. Massaging my lower jaw muscles is painful...no idea what this is about anymore !!
Hi Anne
I bet you are fed up now. I know the tooth has been cleared so you have slowly discounted other things causing pain and stiffness. Just wanted to say even at the moment get yourself an ambulance or emergency entry to hospital if visual issues. Is there an alternative go that has more experience with GCA. With your history you need to be sorted asap. I hope some of the info you have received on this post has helped. So keep fighting. Xx
I referred myself to the rheumatologist back in Dec 2019 when Polymyalgia was confirmed. He took a blood test and immediately started me on the 15 mg of Pred CRP then was 514. He told me to start reducing on 1 Feb by 1 mg per month. It was when I got down to 8.5 mg that the jaw pain pain started. Went to NHS hospital 27th Feb where the registrar concluded that because I wasn't presenting with all of the symptoms of GCA he didn't think I had it. CRP that day after blood test taken was 22. I then got a private appt with rheumy on 13 March, that's when he put me on the 40 mg till I was suppose to be seeing him for results with tomorrow. Due to the virus I thought it too risky entering any hospital so cancelled and made an appt for him to give me a telephone consultation tomorrow instead. I was emailed over from the private hospital the results of blood rheumy took ESR was 17 range should be 0-35 and CRP is still 22 and range is 0-5...so both higher than should be. The result said on the form ask patient if they're taking Biotin, it obviously makes a difference in the result. Yes, I am taking Biotin and have been for quite a long time, using it for thinning hair but also started it before diagnosis back in Dec 2019. I've googled TMJ and it seems I do have symptoms of that. Being so anxious since my first diagnosis of Polymyalgia was wondering if I have been clenching my teeth without realising it...I'm clutching at straws, as would rather have TMJ than GCA....no other symptoms of GCA only jaw, which is worse when I get up in the mornings. Only having been on the high dose of Pred, a week tomorrow, would it have worked by now if it was GCA. My dentist ruled out anything being wrong with my teeth or crowns and offered to have me made a mouth guard. The feeling I'm getting is once I'm up in the mornings biting down, now on both side of top teeth is painful, as the day wears on it improves but just feels tense and aches. After taking a couple of paracetamols I can bite down with no pain...at the moment it just feels tense as though the jaw isn't relaxed. I will have to wait for rhuemys advise tomorrow and see what he says. No offer from GP for any treatment on the NHS I can't afford to waste money on either biopsy or MRI if there is a possibility it will show up false negative. When I push my finger hard against the muscle inside the top left side of mouth it's painful in the mornings. Why is GCA so hard to diagnose. It seems the Pred will cause negative results. All I want to do is protect my good eye. Surely I can't be the only person with this problem and if it is GCA would I only have the symptoms with my jaw and no other.
Thanks for your replies
Anne
• in reply to
I hope tmj too. I do get those over sensitive teeth which goes a rods the days. Sometimes can last 2 or 3 days then goes....I wish magic wands wre real for you and all of us. 🧚
The typical jaw symptom is pain that gets worse in the jaw muscles when you chew. I’ve had Pain in the teeth in the morning after nighttime teeth clenching. Did the dentist look at the function of your TM joint. Another thing I had after a while on Pred was that due to the muscle effects and subtle posture problems, was sternocleidomastoid muscle problems. This can mimic some GCA problems. It’s worth trying these exercises while you’re waiting.
Well done GP who passed you on to a Rheumatologist. They are vascular specialists. I had jaw claudication as well, painful to eat. It goes once prednisone kicks in.
100mg injections when I was hospitalised, then lowered to 60mg. Biopsy was carried out five days later. The surgery was fine, I was awake all the time, was warned if there was any discomfort - which was minimal - the surgeon would tell me. Even got to see the teeny wormy artery. Shocked it was so small. Felt good enough to drive home after, but friend came to pick me up and we went to a café to celebrate. Was told that the surgeon was 'one of the best', there was no pain after, no bruising, no scarring.
And thanks to our national health system - everything was free.
Oh yes, visual disturbances and the awful headache is what made me finally see a doctor. I suppose the temporal blockage was there before starting on prednisone so the biopsy - five days after diagnosis - was bound to be positive.
I will and thank you. Now thinking I may be safer to get myself back to the private hospital to get blood test taken, maybe more sterile there where they're cleaning constantly than sitting with hoards of people in a clinic.
I was in a state hospital, excellent treatment, standards are high. I don't have insurance. No need in New Zealand where it is free. As soon as the doctor thought I should be referred to hospital, it happened immediately.
Sorry to be impolite, I laughed at the 'sitting with hoards. . . in a clinic'. Whenever I have to see my rheumatologist, the clinic has about three or four people. He comes bounding out to greet me. So nice and friendly staff, at Christmas I take them a box of ferrero rocher chocolates.
NHS over here in England so always packed. I'd probably be safer going back to the private hospital to get it done. I've been paying for my treatment now since Dec 2019....NHS lists are too long and couldn't wait. I bet my GP is delighted as it helps his resources. No point in having money saved when health needs sorting, so don't begrudge a penny of it. Now we're all self isolating can't go out to spend it anyway. Sounds great the treatment you've received. Our NHS is struggling these days from the amount of people now in our little country....used to be wonderful. Having said that the NHS workers are doing a brilliant job trying to save lives at the moment. Lots of jobs to keep me busy today. All of our homes will be gleaming haha Sun is shining so looks to be a nice weekend. Mother's Day tomorrow, shame there won't be any celebrating.
I’m just very glad so many highly trained people from other countries have chosen to stay in our little country and help keep our NHS going in these very challenging times. They deserve our gratitude.
Certainly do Highlandtiger....where is everyone getting their weird names from haha. We could call each other by our right names now surely.
I had to pick a name quickly in order to send a pm to someone when I first joined and that one just came to mind because I had little rescue kitten at the time (my profile pic) and she was quite wild. I’d planned to change it later but I’ve grown to like it now! Scottish wildcats which are endangered, indeed verging on extinct are often called highland tigers too and it’s been a long held ambition of mine to see one in the wild, sadly I don’t think that will ever happen now...
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