totally confused now

[Lacelady]

After a long drawn out period of lower back pain and a flair of Diverticulitis x UTI I have ended up calling 111 twice.

My surgery gave me a blood test that came back with an ESR of 40 indicating a PMR flair but did not contact me with any suggested treatment.

I developed jaw pain when chewing so automatically thought GCA. The out of hours Doctor prescribed 40mg as it was his conclusion as well.

After two weeks with no improvement in the jaw pain I started with a slight dull ache on my left temple. Becoming frustrated with not knowing what was going on I rang 111 again. The doctor told me to go to A&E where I waited 7 hours. After seeing the doctor, who sent me for a CT scan of my head. It wasn’t for GCA but to rule out a stroke or bleeds.

After a consultation with a specialist he decided I needed to see an optician.

The next day I went to a second hospital A&E and waited 7.5 hours to be told there was no sight of GCA. Great news!

However he also made an appointment with a Rheumatologist at a third hospital yesterday. . She decided that I should come off the steroids straight away and go to 5mg from today. I did question this but was assured it would be fine.

After a conversation with Dorset Lady about tapering I am to say the least very nervous.

I explained the usual procedure we followed for tapering that DL suggests but she was quite adamant that after two weeks (actually 16 days) on 40mg it was all right to stop.

I do hope all of this makes sense and I apologise for its length. I suppose my question is where now ?

[DorsetLady PMRGCAuk volunteer]

So long as everyone is sure it isn’t GCA (and an increased ESR could be down to anything as we know) then you can drop back down to 5mg.

But if you are very anxious about it, maybe stagger it a bit -say to 20mg for 5days, then 10mg for another 5days, then to 5mg and stay there for a month before you recommence slower reduction.

Unfortunately the only way you’ll know if it’s okay is to try.

[Lacelady in reply to DorsetLady]

As always the voice of reason ! Thank you I think your idea is good about the 20 - 10 -5

It will reassure me.

[Obscureclouds in reply to Lacelady]

Glad to hear you don't have GCA. As for the steroids I think you are wise to follow a gradual taper just to be on the safe side and for peace of mind

[PMRpro Ambassador]

The raised ESR could well be the diverticulitis. And she is indeed quite right about being able to just stop 40mg/day after 2 weeks - it is just the same as the flare protocol after all. But you will have had a good clear out of any inflammation in the meantime.

[Lacelady in reply to PMRpro]

Thank you for answering.

Yes there can’t be much inflammation left anywhere now . At least I hope not.

I feel better just talking to you all. It is so good to have your back up.

[SnazzyD]

A visit to a dentist to check your jaw joint? The trouble with your other issues is that they can send your inflammatory markers haywire.

[Lacelady in reply to SnazzyD]

Thank you for replying SnazzyD .

So I have discovered. I was sailing along nicely on 2mg then everything went downhill.

I am hopefully on the right track now though. 👍

!

[arvine]

if jaw pain wasnt GCA what did they diagnose you with ?

[Lacelady in reply to arvine]

The first doctor said it sounds like TMJ but no definite diagnosis. I still have it all though it is not as bad. Reading up on it it says it goes on its own sometimes so I am waiting to see. The extra Pred didn’t move it so I am not sure what is causing it. I have the dentist soon so I will ask him.