The symptoms, headache, pain and throbbing in the temples, jaw pain/ache feels like locked jaw, pain behind ears and back of the head, scalp tenderness. Pain down the neck, shoulders and arms. Fatigued and weak a little breathless and oh yes the insomnia usually up about 3am
Some issues with vision, things go blurred and then improve and a pain at the back of the eyes. Blurring is worse when the head pains are worse. Have been seen at the eye clinic and was reported as no problems, but was not having an 'episode' at that time so I'm not sure that has an effect on what they would have seen
I guess I am describing a combination of symptoms and side effects of the Pred
I take the Pred in the morning but by early afternoon the symptoms increase. They are not as bad as they were before the Pred so some improvement but haven't gone away
Got a copy of a letter from the Specialist to my GP in which the Specialist says since my symptoms as described by the GP are not typical of GCA and that the CRP & ESR results are normal this is probably not GCA
I have been told to taper the steroids reducing by 5mg per week down to 15mg and the Specialist will see in at the end of Feb
Is it normal to be worse in the afternoon?
Feeling a bit abandoned by the medical profession at the moment
If this is not GCA then what is it? I guess I have to wait until the end of Feb
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I honestly think that you need the opinion of another specialist. If GCA was under treated I imagine that you would experience an increase in symptoms in the afternoon. Some patients require 80 mgs or more of Pred before the symptoms are controlled. Your ESR and CRP blood tests are not likely to show inflammation whilst taking Prednisalone. The scalp tenderness and head pain do sound like GCA. The jaw pain less so. In GCA it tends to occur when chewing, worsening as you chew. It’s good that you have had your eyes examined as loss of sight is one of the biggest dangers facing GCA patients. GCA can also adversely affect the ears. I am not sure if our FAQs section has a copy of Jinasc’s post about this issue. I experienced breathlessness as a side effect of Prednisalone but it does need to be checked out. I really would seek out a Rheumatologist who is knowledgeable about GCA and seek emergency attention in the absence of that help. I am not surprised that you feel abandoned. You are experiencing significant symptoms. If it isn’t GCA then you require more medical investigations to find out what it is. Good luck!
I would NOT be waiting till the end of February to get this sorted out.
Why the eye clinic and not a Consulatant Rheumatologist or a Consultant Opthamologist or were you seen by a Consultant Opthamolgist at the eye clinic?
With GCA is that if it is not controlled quickly and treat as a medical emergency you are at risk of losing total or partial sight. Although you are on 50mg of pred with no improvement in the symptoms, is either they have got it wrong or the dose of pred is not high enough.
I started on 60mg and others have started on higher doses.
You need to become pro-active and see your GP, failing that a visit to A&E next time your vision is blurred etc is necessary. BY the way, GP's always refer people with suspected GCA to Consultant level. PMR is dealt with in primary care ie GP.
Niether of your blood markers ESR or CRP need to be raised, in some people they never move, in others the CRP is a good marker.
In the FAQ section there is a link to the BSR Diagnosis and Treatment of GCA, I suggest you read it and download if necessary.
I had bad jaw pain on the right side, with such stiffness that it was hard to open my mouth wide enough to eat. This, along with the other symptoms of a headache at the back of my head radiating to behind my ears, neck ache and occasional eye pain, led to a diagnosis of GCA. 15mg pred for the PMR alleviated but did not completely eradicate the symptoms. It was increased to 40mg which did the trick. I was told by the rheumy (a registrar) to come into A&E if any jaw pain returned.
Not quite sure about who diagnosed you,, but are you saying the specialist has said you don’t have GCA , but is only referring to what your GP reported, Has specialist actually seen you? If not, then his comments are irresponsible.
As someone who has had GCA, they sound very typical to me. By eye clinic do you mean hospital eye Dept?
No wonder you feel abandoned……is there any way you can see another specialist privately?
As jinasc says, this needs to be sorted sooner rather than later, especially if you are reducing 5mg a week. IF it is GCA, you a being put at risk.
Yes blurring can be due to Pred, but also GCA…as I know.
Have to say, I agree with GP and A&E doctors, they have seen you…..and your symptoms.
Rheumy is, in my mind, being unprofessional in telling you to reduce without even having seen you. If she doesn’t think it’s GCA, despite others thinking it is, has she offered an alternative diagnosis?
GCA should be treated as a medical emergency - and although it was, and you certainly did the correct thing - that also means you should be seen by a specialist within days from original diagnosis - not 2 months down the line! Not good enough.
Any chance your GP (who seems to be on the ball, so good for him) can pressure the Rheumy Dept for a quicker appointment.
I saw one GP on the 23rd Dec and she referred me A&EOn the 24th it was a not a GP, my bad typing, I saw my optician who reported some swelling in the right eye which lead to the urgent appointment with the consultant ophthalmologist on 28th Dec who saw no problems
I haven't actually seen a GP since the morning of the 23rd Dec
everything else, well 2 conversations, have been over the phone
A&E prescribed Pred and a PPI but just enough to get me over Xmas
I then had a struggle to get a repeat prescription for the Pred from the GP it took a week I was down to 1 days tablets
I had a conversation with the GP about the dose and was told it would be up to the Specialist
The answer to my questions about the on going pain was it would be up to the Specialist
How long a high dose was needed ... you guessed it up to the specialist
You can see the pattern
I will be chasing with the surgery to see where we now go following the letter from the Specialist
Okay, thanks for clarifying, but the fact that you haven’t yet been seen by Rheumy still concerns me.
Your eyes may be fine, and that’s good, but if A&E suspected GCA, then Rheumy should be seeing you F2F in my opinion, before dismissing that diagnosis.
She may be correct, I hope she is, but as you appreciate it’s not an illness to be taken lightly.
Please keep us informed, and hope you get some sensible answers from GP….
IF it COULD be GCA, and everything is "up to the specialist" - since in the meantime you sight is potentially at risk, it is high time the GP pulled their finger out and got an emergency appointment with a rheumatologist. Either they hand you over properly or they take some responsibility
I have been diagnosed , undiagnosed and misdiagnosed many times over the years , partly because I had many things bumping against each other , and partly because the doctors have a habit of dismissing anything that is not just ' test case'.
Of course , you may still have GCA and the way your symptoms respond on that fast reduction of steroids may make the Specialist reverse his own reversal of the original diagnosis . A biopsy or scan may not give the answers they need to confirm GCA now because you have already started treatment, but the upside of that is that starting the treatment asap could have saved your eyesight if it does end up being GCA.
Some people can feel worse late afternoon , to early evening , partly because the dose has started to wear off and partly because of the body clock and the way chemical levels can drop at that time.
You could , also have a number of different head , eye and shoulder pain conditions. At the moment your GP should be testing ruling things out, trying other possible treatments alongside your steroids , or referring you on to a different Specialist , specifically a neurologist.
Your comment about you not having an episode when you had your eyes checked was very interesting .
Although all the signs are there for GCA and you should seek advice to increase your dose again if the pain and symptoms worsen as you reduce , you could also be suffering from Chronic Migraine Syndrome , among other Neurological or Skeletal pain issues.
People really don't realize how extreme Migraine can be. It can cause the radiating neck and shoulder pain , extreme fatigue and stiffness , temporary severe pain and bleary vision , called Migraine with Aura or optical migraine, scalp and jaw pain , ear ache , hearing loss and even mirror the symptoms of a stroke. Trigeminal and Occipital neuralgia can also cause similar symptoms , and if you haven't experienced them and GCA , it can be very hard to distinguish one of these conditions from each other. If untreated many of the neurological conditions can get worse and cause fluctuating daily symptoms.
Degeneration in the neck, jaw or spine , disc problems or misalignment of discs and bones can cause similar symptoms too.
The steroid will often help to some degree with the symptoms of various conditions, including neuralgia when the dose is higher.
Has the GP offered you any other treatment or arranged xrays and other tests?
You really need to contact them and request further referrals and investigation , they shouldn't be left until you have finished your taper.
Be polite but firm with your request for more help , hard to do when you have pain and fatigue , but it will be a relief when you finally get some better answers, and you definitely shouldn't need to wait until the end of February for them to start looking for those answers either.
Good luck and keep posting with questions if you need to
Have you only ever been on 50mg? No higher? Some patients need 80mg or even 100mg to get relief.
I would say that what you describe is potentially too like GCA to risk the delay in a f2f appointment. Up to 1 in 5 patients with GCA have blood markers within normal range and it was very clear in a Zoom meeting I attended last week that GCA doesn't have a textbook "it is always like this" presentation. Of the 8 patients who told their story, no 2 resembled each other at all.
I agree with everyone else. My GCA never involved my jaw. On 40mg and 50 mg I didn't get better at all, didn't eat or get out of bed for the first time in decades. But 60mg did the trick! The dose depends partly on how much you weigh. I really hope you get a consistent diagnosis as soon as possible🙂
I agree with everyone else too. I was started on 60mg. From what you say you sound like you need more not less at the moment. I was seen by the Consultant very quickly.
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