GCA or not ……..

[Jlml]

Good evening,

I am after your thoughts and advice please.

I had a drs appointment this afternoon to discuss re-starting steroids after a recent flare up. I haven’t been on steroids since August. Whilst I was there I mentioned that I have had a strange intermittent headache around my left eye and temples. It’s not a bad headache but it is there and my eye feels sore. I have a lot of PMR in my neck at the moment. This headache has been for 4/5 days.

My dr thinks it maybe GCA and rang the rheumatologists in hospital whilst I was there and they said they were going to ring her back which they didnt. Doctor rang me this evening to say that there will be 5 day course of 60 mg of pred waiting for me at the chemists tomorrow morning and to take this until she receives answers from the hospital. She is also going to try to get me into the eye dept of a different hospital tomorrow.

Does this sound right to you.

[DorsetLady PMRGCAuk volunteer]

Sounds eminently sensible ..hopefully it’s not GCA, but it’s the correct procedure!

Please let us know how things go….

[Jlml in reply to DorsetLady]

Thank you. Does CGA normally only affect one side of your face and don’t you normally have a really bad headache or perhaps this is just the beginning. Sorry for so many questions x

[SnazzyD in reply to Jlml]

The headache can vary judging by the reports here. Mine was like a burning in the scalp and temple as well as pain in the top of the neck/base of skull. The pain wasn’t terrible, just unrelenting but others have said it was very bad. I had it both sides but the right was so much worse, the left felt ok until the Pred worked and I realised it hadn’t been right at all. The dosing idea sounds good. The only change I’d make is to get it into you sooner.

[PMRpro Ambassador]

Short answer: yes!

I'd rather go through 5 days of pred like that and then find it wasn't GCA than the other way round.

[Jlml in reply to PMRpro]

Thank you. Is there any side effects I should be aware of?

I am due to go away tomorrow afternoon for a couple of days to an Xmas market.

I am very nervous of taking so much as 15mg drained me x

[DorsetLady PMRGCAuk volunteer in reply to Jlml]

If you are anything like me, you’ll be full of energy - so the Xmas market will be a breeze! Although 5 days is not long so shouldn’t affect that much ….I was on 8 weeks.

As for being bilateral -yes usually-but not for everyone -and better to be safe than sorry!

[Nagswoman in reply to Jlml]

Warn your close ones that high dose preds can cause Roid Rage and apologise in advance that you may not be normal self.

[jinasc]

As you have been off steroids since August and were visting the GP to discuss re-starting pred. Sounds to me like your PMR was not in remission and left untreated sometimes morphs into its big sister GCA.

With a bit of luck and a fair wind, it might not be GCA - but it sounds like it is GCA.

Take the 60mg, protect your sight, once its gone - its gone.

Enjoy your Xmas market.

[SheffieldJane]

Yes! Good luck with this plan!

[Bcol]

That sounds very sensible to me and good that you have a sensible, clued in doctor.

[Jlml]

Thank you very much for all your help. I will let you know how I get on xx

[Ridge]

For me GCA was all one sided. It started as an intermittent pulse of pain behind the right ear. Dr said ear infection as ear drum was red. It didn’t respond to antibiotics so I was told it was a virus. It varied in intensity and went up the side of my head and behind my right eye. At one time I couldn’t lie down. I also remember describing it as ‘molten lava trying to burst though my eye’. I had jaw Claudication and thought I had dislocated it. It was intermittent in intensity but I was on copious amounts of pain killers. CRP and ESR were raised. Dr said they weren’t significant at around 30 I think. If they had been over a 100 he could give me antibiotics. I get angry writing this. Now I know about PMRGCA I realise how very lucky I was. Take the steroids!!!

[PMRpro Ambassador in reply to Ridge]

I hope you educated him once you were diagnosed?

[Ridge in reply to PMRpro]

Well no! I went to see him after he had the Rheumatologist’s letter. A Rheumy he had not sent me to. He told me (lectured me) on PMRGCA then said without drawing breath that had he diagnosed me he would have put me on a higher steroid dose. I was left speechless! I could have asked him why he didn’t but I am ashamed to say I just gawked and stumbled out of his office. He never looked at me. He was always looking at the computer. The surgery has a very bad rep for the doctors. He later poisoned me by giving me a double dose of an antibiotic that wasn’t working!! I hope to avoid him but get the meds through the surgery.

[PMRpro Ambassador in reply to Ridge]

Shame you hadn't kept a record of his downright failures - then you could report him. He's obviously incompetent - if you had jaw claudication that is a GCA red flag and he missed it. I have an aversion to doctors who dish out abx again because the first didn't work - one who did that nearly killed my husband by not sending him for a chest x-ray to find out if it really was the infection or asthma he was so sure it was. It was a massive tumour ...

[Ridge in reply to PMRpro]

To be fair I didn’t mention the jaw. I didn’t know it was significant. I was so desperate about the shooting pain headaches. He never asked me any questions.

I have heard awful stories about him. I have heard awful stories about other doctors in the practise. It is a well run practise compared to others in the area. They have an efficient appointment system. It seems that most people know not to see him. I just didn’t know having been relatively healthy until PMRGCA.

[tempusfugi in reply to Ridge]

That experience you had sounds horrifying to me. It does rather seem like the luck of the draw when it comes to Dr's advice sometimes, particularly with possible GCA.

It's something that keeps nagging at me. What do I do if I have symptoms of GCA? After all, they seem to develop at any time, even if taking Pred.

I live alone, am more than 20 miles from the nearest hospital, don't have that many friends I can call on in the immediate vicinity, find it impossible to get a Dr's appt, ambulances are becoming like gold dust in UK right now...a few years ago, it wouldn't have been so grim but the NHS is literally falling apart it seems.

So do you good ladies on here recommend that I would up my dose to 60 mg, until somehow/somewhere I could get it sorted? I know I'm probably jumping the gun but I hope you can see my point.

[PMRpro Ambassador in reply to tempusfugi]

Many were told by their doctor to always have a reserve of 60mg (checking the use by date regularly) and if there were any visual symptoms to take it and seek medical advice immediately. That gives even the UK ambo service time to get to you - because IF there is risk to vision you obviously can't drive.

[tempusfugi in reply to PMRpro]

Tvm, PMRpro. That makes me feel somewhat assured. I have a telephone appt tomorrow with the medic who has been dealing with my case (Physician's Associate, I think that's what he is called!), so I will mention my concern with him too. He is quite kind and receptive, even if not a GP as such.

Btw, I am one of those odd people who has never learnt to drive. I know, it feels like I've got some sort of social disease when I tell people that. You don't DRIVE, they exclaim. 😃

[PMRpro Ambassador in reply to tempusfugi]

Especially when you live in the back end of nowhere!!!!

[Ridge in reply to PMRpro]

That is so good to know. I will ask my new doctor.

[Exflex]

I had similar and wrote about it recently. First of all I had an optician take a look who said eyes looked healthy but referred me to my GP practice. As soon as I presented to the GP he packed me off to the eye clinic who agreed that it wasn’t GCA. (I have however been diagnosed having vitreomacular traction which may require surgery). Discomfort and pain around eye socket and side of head have now subsided.

[F-Lulu]

I can relate to all the wise comments here. Have had GCA for a year and although ALL the symptoms identified were on the right side ( including an ear infection ) the ultrasound revealed that I had GCA on both sides of my head/face. The steroids journey has been quite grim- particularly such extreme fatigue - but am now on 5mg Prednisone and hopeful that within a few months will feel better. I have to say that my treatment ( on NHS ) has been first rate and my rheumatologist extremely thorough. Most importantly, he really listens during consultations and his feedback is always helpful.