A Busybody’s Dilemma

[Downbytheriverside]

I’d like some advice from the forum. Firstly let me say I’m one of those annoying people who diagnoses friends’ medical symptoms.

My neighbour and friend has been suffering appalling headaches and neck pain since Christmas (possibly before). She thought it was sinus problems and was given antibiotics by the local GP. Having suffered from PMR and followed this forum I have been alerted to GCA. I wondered if this could be the problem but I kept quiet because of my annoying know all approach.

My friend yesterday messaged me to say she was going for an emergency scan and believed arteritis had been mentioned as a possible diagnosis. On return she messaged me that there was no outcome from the scan but she would be having a biopsy. She is aware that steroids may be prescribed at some point but there is no positive diagnosis. I know that GCA carries a risk of permanent damage to eyesight if steroids aren’t prescribed quickly and that an overloaded medical profession can be slow on the uptake.

So should I keep stum? Is it the usual procedure for a delay before diagnosing and prescribing steroids. Should I stay quiet and not frighten my friend? Of course this may not be GCA.

[DorsetLady PMRGCAuk volunteer]

If GCA is suspected, then steroids should be given immediately, but some doctors do hold off until a biopsy is performed… but that could putting the patient at risk, as you rightly say. But a trial period of steroids can be prescribed whilst other tests are being actioned.

There is no guarantee that a biopsy will be positive, very often the result is a false negative if the section of artery is unaffected, so symptoms should always be the overriding reason for diagnosis.

As you say it may not be GCA….and you are in a difficult situation, you don’t want to worry your friend unnecessarily. All you can do, I think, is tell your friend that if pains get any worse or she gets any sight disturbances she must seek medical attention asap.

[Downbytheriverside in reply to DorsetLady]

Thanks for your reply.

When I experienced the onset of PMR my own GP prescribed steroids immediately while awaiting the results of tests and they kicked in within hours. His feeling was that the easing of my symptoms by steroids was in itself a partial diagnosis.

I’ll see if she can cope with a cuppa later.

[SheffieldJane]

No, tell her what you’ve learned and direct her to the forum, the FAQs particularly and DorsetLady especially. The forum is founded on the annoying people who can do a lot of good. You are perfectly right about the urgency. Eye symptoms are a particular red flag!

[PMRpro Ambassador]

The rubrics do say that giving steroids in suspected GCA should NOT be delayed until a biopsy result is obtained if the symptoms are strongly suggestive of GCA. This is not least because there is a high rate of false negatives.

It is difficult - and it may continue to be difficult, because the fact the ultrasound scan (I assume that was the scan?) showed nothing and a biopsy may also show nothing still doesn't 100% rule out GCA even though some doctors will take it at face value. But they ARE on the case. You could elicit whether the u/s (if that was what it was) was also done on her armpit. And whether she has any other symptoms besides the headache.And make her aware that if she has any visual symptoms, however minor or fleeting they may be, she needs to get medical care immediately - like A&E immediately, not seeing the GP tomorrow.

[Downbytheriverside]

Thanks for this. I will mention the visual symptoms and of course the health professionals may have said this.

[piglette]

I must admit I am one of those people who like to diagnose too. Has your friend had any eye trouble? You could always mention your PMR and lead on to GCA symptoms.

[Blearyeyed]

You should tell her about your own illness and let her know about the forum so that she knows she has two places to come to for support , you and the friends here.

I can see you are a caring person and you want to inform her but don't want to add to her fear and anxiety about being ill , which will be high already without the diagnosis.

It may , however , that the doctors have booked a biopsy to happen in a matter of days , and they will be pushing for it to be done asap if they suspect GCA , as they will know about the risks to the eyesight if their is too much delay.

You could suggest to her to keep a good watch on her symptoms and if they get even slightly worse to call the doctors she is under , they could choose to start the treatment straight away from that call.

You should also advise her to chase up the biopsy if she has not heard about an appointment within a few days , reminding them on the phone that it is for suspected GCA as this could get the test done as quickly as she requires. Or they may decide the delay will be too long when they check available dates and start her treatment immediately.

Whatever you or your friend choose , I know she will value your input and support , and that you will understand that you may need to help her with little bits of information at a time and gently in those first days after her diagnosis. Good luck to you both , Bee

[Hidden]

Would you delay seeking advice or treatment for yourself if there was a possibility of sight loss?I suspect not and doubt many would.

Therefore you are not a busybody but a guardian angel.

Tell her today, your friend will know you have best intentions even if she is scared. 😉

[Alchemy8]

As prescriptions seem to take so long to get (and indeed the biopsy now) maybe it might be worth asking the doctor to prescribe prednisolone "in case" with instructions. It might relieve stress which is always a factor here. My doctor did this for me at the beginning of PMR when I didn't know whether I was coming or going.