Incorrect diagnosis???

[Octi]

I’m a bit stunned tbh. Yesterday I had my first ever meeting with a rheumatology consultant, having been diagnosed with GCA in June 2021.

She told me that my temporal biopsy (done in June 2021) was negative, that the bloods taken at the time were good and that I’m very young to be suffering from GCA (I’m 54). I’m sure I was told previously that the biopsy was inconclusive. 

In short, she thinks I was wrongly diagnosed.  My symptoms were a tender swelling at my right temple, which had come and gone for several years, along with awful pain in my jaw, also on the right side. I never suffered from headaches, tender scalp or vision problems. She has requested an X-ray of my jaw and bloods were taken yesterday. She suspects that the jaw pain is down to wear and tear (too much talking?!). She said my body’s instant response to a high dose of steroids is normal, whatever the problem. 

So have I been on steroids all this time unnecessarily? It’s still not certain, but I’m more determined than ever to get off them. I’m currently on 2.5mg and had started adding in an occasional 3mg day as I was aware of a slight problem in my jaw again and was terrified of having to go back up to 40mg if it all went horribly wrong. 

Has anyone else experienced this? I’m not sure what to think, tbh. It’s really thrown me. 

[SheffieldJane]

I would seeking a second opinion especially with your on-going symptoms. I mean it barks like a dog, quacks like a duck and it’s a red herring. I would be angry in your shoes. I disagree that steroids make everything feel better, I could make a list. Your age by the way is a low normal at 54. Too many old papers say 70+.Where about in the country are you? We may be able to recommend someone. In the meantime, don’t ignore any classic GCA symptoms, seek emergency care if necessary.

It is possible that you don’t have GCA but this doctor is seeing you for the first time in two years following intensive steroid treatment. I would not be happy. I wish you could see my Rheumatologist in Leeds, she would leave no stone unturned.

[Octi in reply to SheffieldJane]

Thank you for your thoughts and concern. I’m in Surrey.

[SheffieldJane in reply to Octi]

Jinasc is on the case!

[123-go]

I agree with SheffieldJane that you need a second opinion. A visit to your dentist is also advisable. See this:nidirect.gov.uk/conditions/...

[jinasc]

Sent you a PM.

[PMRpro Ambassador]

She is incorrect on all three points - a negative biopsy only means they didn't find what they were looking for which is nowhere near the same thing and is correctly reported as inconclusive. Up to 1 in 5 patients have normal range blood markers - Snazzy tells of hers being normal while she sat in the ED with her vision shutting down. And I believe 54 is over 50??? Which is what the guidelines say and also is only a guideline, people under 50 have had proven GCA, sometimes found by the pathologist at post mortem by which time it is a bit late.

And I wish I knew what makes them think EVERYTHING responds to high dose pred.

The jaw pain COULD be trigeminal neuralgia if it was all the time - jaw claudication in GCA tends to be during eating/chewing but can be during talking/singing but goes away when you stop the action only to return when you restart.

BUT - I would want a second opinion, I don't like doctors who are so dismissive of their colleagues when they have never seen the patient before

[Octi in reply to PMRpro]

Wow, thank you. Lots to think about.

[PMRpro Ambassador in reply to Octi]

I gather jinasc has replied - really worth listening to!

[cycli]

totally agree. It's also distressing to make you feel you have been taking steroids unnecessarily. We all hate taking them but just because they don't think it is GCA doesn't make them right. PMRpro and SJ are bang on.

[piglette]

I sometimes wonder if some of these rheumatologists know anything about GCA. As PMRPro says she is wrong on all three counts.

[Octi]

Thank you all for taking the time to share your thoughts. Sorry for the delay in responding, I work full time. I love this group 💜

[cycli in reply to Octi]

Purple hearts. Now that takes me back to schooldays and classmates experimenting. Was never interested but I knew some were. Much more risky than the pred. we take which is still undesirable. We just have no choice.

[RoadTrip]

I was diagnosed at 55 with GCA. Before the headaches set in, I had extreme jaw pain not your typical claudification, but a constant pain albeit at varying intensity. My private Rheumatologist called it extreme claudification. I was also considered too young by my hospital Rheumatologist who was not convinced I had GCA.

[Octi in reply to RoadTrip]

Did you have an x-ray taken of your jaw?

[RoadTrip in reply to Octi]

No x Ray, doctor did suggest I should see a dentist as teeth were also sore.

The jaw pain, teeth and earache were my main symptoms for about 5 days for which I was given antibiotics as they thought it might be a sinus problem, they helped slightly, probably placebo effect. The headaches then took over and after googling sore legs (PMR symptoms) and headaches I suggested GCA to my doctor who did blood tests which showed sky high inflammation markers so was put straight on 70mg pred.

[Octi in reply to RoadTrip]

Thanks for explaining your story. Not good that you pretty much had to self diagnose.

[Sandradsn]

I would see the dentist and ask for an OPG xray,it takes a picture of your whole mouth.Your dentist should also check your jaw to see if there is any clicking or bite issues.

[Octi in reply to Sandradsn]

Thank you. I now have an X-ray booked for next week.

[SusyTe]

I live in Weybridge in Surrey and I would recommend that you see Professor Rod Hughes, either privately at the Runnymede or on the NHS (but that will take longer to get an appointment) at St Peter’s - both in Chertsey. He is brilliant and is my rheumatologist. X

[Octi in reply to SusyTe]

Thank you. I definitely can’t afford to go privately, but I’ll investigate the nhs route.

[SusyTe in reply to Octi]

I hope you can get to see him soon and he can help you. ❤️ X

[PMRpro Ambassador in reply to Octi]

Not even 1 session? He will often add patients to his NHS list if appropriate - and you woud have some sensible guidance. I know it is a tidy sum in the current climate!

[Octi in reply to PMRpro]

I’m guessing one session would be several hundred pounds?

[DorsetLady PMRGCAuk volunteer in reply to Octi]

You can always look online to get an idea of cost…

[PMRpro Ambassador in reply to Octi]

Couple of hundred I think.

drrahughesrheumatologyltd.com/

[Octi in reply to PMRpro]

Thank you very much for the link

[Viveka]

As well as all the good stuff people have said, don't forget that if there is a flare, unless it is a red flag symptom eg eyes, generally you would need to raise by 5mg for a week to ten days then return to the dose you were last on comfortably. You don't have to return to starting dose. There is a protocol that comes up regularly on the site. No one should consider increasing a lot for low level symptoms.

Dang GCA, often so difficult to diagnose. So confusing...

[Hidden]

Hi Octi. I feel for you. I too was diagnosed with GCA in 2021, April ESR 27. Put on 40mg pred. Negative biopsy, although showed signs of "something". Tried to wean off pred and had a flare at zero ESR 33. Back on 30mg. Been on Methotrexate since Jan to help wean off pred but now told me to stop. Had a face to face last week with rheumy as bad headaches and neck pain ESR 11. She now says it could be inflammatory spondular arthropathy?? What a shambles. Still really bad head and neck which she says isn't GCA. Awaiting MRI.

[Octi in reply to Hidden]

It seems that GCA is both under diagnosed and misdiagnosed. Hope you get some definite answers soon.

[Hidden in reply to Octi]

Thank you Octi. Good luck to you.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

If you were only diagnosed in April last year -and a negative biopsy isn’t 100% proof it’s isn’t GCA especially with the comment “showed something ” -what the heck does that mean! ..it is highly likely it is GCA…

I think she’s been sidelined by the neck issue- although having said that my nape was affected -and should be concentrating on the headaches.

Do you have any other GCA type symptoms -tender scalp, shoulder/arm issues (sometimes but not always) jaw issues, fatigue ?

Do ordinary painkillers help neck/headaches?

[Hidden in reply to DorsetLady]

Hello DorsetLady/PMRpro sorry for the delay in replying. Have today gone through all of the letters to my doctor and the artery showed areas of infarct, which I believe means necrosis. I have a history of shoulder problems and a fall down 17 stairs at the gym 3 years ago made me wonder if I had damaged my rotator cuff repair as I was having what I thought was referred pain down to my elbow and also down to my waist past my scapula. To keep it brief, because of Covid my appointments with my shoulder consultant were by phone and I only got to see him last November. Xrays showed my rotator cuff to be OK (I was on 20mg Pred) and my movement was excellent - best for 6 years. Also a lump of infection on my collarbone (8 years)had disappeared, also I think due to the Pred.

Started with headaches/neck pain 3 weeks ago and been in touch 4 times with the emergency helpline which resulted in a face to face. Have in the meantime had crazy back problems (23 years on and off but never this bad) heel pain, thumb pain and this lump of infection at my collarbone. Rheumy latched onto the back pain and said she had never believed it was GCA as I have cronic neck arthritis and my ESR CRP have never been high! Stopped my 20mg of Methotrexate and has ordered an MRI on my spine, neck and collarbone. I continue to wake at 2.30 most mornings with a blinding headache (both sides and at the base of my skull - feels like I'm lying on a block of concrete. If I get up and walk around for a while my headache dissipates and I can usually get back to sleep. I've experimented with painkillers and they don't help and I'm tired all the time.

So sorry for the length of the sob story. I have raised my Pred from 2mg to 5 occasionally after reading posts here and this helps.

I read all the posts here with interest and appreciate all the advice given.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Will leave PMRpro to address the Infarction/necrosis issue as she has extensive medical knowledge (I don’t) -but having a quick look it does say that could be caused by a blockage in artery -which to my mind could be the affect of the GCA . Happy to be corrected if I’ve got that completely wrong.

I would agree the back/neck pain is probably muddying the waters -and sorry to hear it’s a long term issue, and of course spine issues cause all sorts of other problems .

Spine maybe exacerbating the headaches etc first thing -but as ordinary painkillers don’t seem to be helpful, one has to wonder what it is then if not GCA.

[Hidden in reply to DorsetLady]

Thank you DorsetLady.

[PMRpro Ambassador in reply to Hidden]

I do see why she is saying a spondyloarthropathy - back/neck pain that early in the night is something that differentiates from PMR and it is absolutely astounding how it can mimic GCA - it even fooled Prof Dasgupta!The imaging should clarify it to some extent.

[Hidden in reply to PMRpro]

Thanks for that. I am going to take 2mg Pred at teatime to see if I can sleep through tonight.

[PMRpro Ambassador in reply to Hidden]

WHY does she say it isn't GCA? It might not be - but on the evidence thus far, I don't see how she can rule it out. Has he done imaging of your spine - preferably MRI I think

[oscarandchloe]

I had constant pain in my teeth pre-GCA diagnosis, so bad I took painkillers every 4 hours day and night. In the end my teeth went numb which must mean the nerves were being affected by the swelling . I also had constant jaw pain right where the jaw hinges and a 'tired' feeling when chewing which lasted for a month or so after I'd been started on 45mg Pred. I felt almost complete relief after the first dose of Pred. 3 years later and none of these symptoms have ever returned but I did develop PMR alongside. Now on 5mg Pred. and sticking there while I get hip op sorted.