Feeling lost and stuck

[GingerPoodle1]

Sorry it is me again! I came back to the UK from China where I work (after some thorough diagnostics confirmed GCA. However, as I mentioned in previous posts, my Chinese is not great and I thought it best to come back to the UK for treatment in December given how complex this condition is.

Yesterday, I woke up hopeful as I finally got to see a rheumatologist and thought I would at last get some clarity and a clear plan for the future. I left the appointment though disappointed, scared and even more confused.

The Rheumatologist was not very sympathetic (and even more dramatic than my Chinese doctor!) and was annoyed that the GP had made the referral but had not said what it was for. She also rolled her eyes that I had not been given PPI (I am also on DOAC and she said that the combination of this with steroids can cause stomach ulcers. She also rolled her eyes and mumbled when I said that the GP had not discussed the rare but significant side effects that Alendronic acid may cause.

She lookedat the report from the doctor in China (admittedly, t this was not a very good print out) and she now says I may not even have GCA as she couldn't see a halo sign on the print out (the GP had also not sent her my information – I asked her if I should forward it – she said no need – she didn’t want to see it).

However, she said now I am down this road I have to follow it (which of course I do, being on steroids for so long), She is now wanting to repeat the colour doppler (despite me being on high dose steroids since November) and the inflammation blood tests – though I believe this will just produce a false negative. However, I may be in a flare, as since I tapered to 20mg I have had symptoms return, very sore scalp, numb face, and visual issues/pain in and around in my left eye and lhs stabbing head aches as well as the headaches, dizziness and hot sweats. The Rheumatologist thinks there may be more/different things going on – and showed concern about the high IgE and CPA 19- 9 blood results and is also now following up on that too.

I need to get back to work as I actually don’t have a home in the UK but am staying with my sister (where I registered with a GP before I went overseas), Air BnB or, as now, taking on Trusted House Sitter gigs to keep a roof over my head while working through the medical system. I explained that my finances have ran out and I have no more sick pay and need to get back to work in China (though I expect I can wangle as a phased return a month from the UK). However, the Rheumatologist says I must be prepared to stay here for 6 months.

I am now beside myself with stress. I think someone said in the forum that I shouldn’t expect much, but now I regret returning. It has cost me thousands and my diagnosis is now back to square one. Sorry, this is more of a rant than anything as I am very lost, broke and don’t know what to do. Has anyone else navigated this kind of situation?

[PMRpro Ambassador]

I'm sorry but not really very surprised. If the symptoms have returned with a reduction of pred, it is possible they can find something with good imaging.

I don't think anyone will have navigated this sort of situation - but grumpy rheumies are not uncommon and the 6 months here for treatment isn't unreasonable. People have been warned not to travel far for the first 6 months of treatment with GCA - for all sorts of reasons but since mostly they wanted to go on holiday, a few who ignored the recommendation have told us that the holiday was wasted as they felt so unwell they couldn't enjoy it. I certainly don't blame her irritation at the GP if they didn't say this was suspected GCA since I imagine that would have resulted in a far earlier appointment and the rheumy would have had a better overview with a patient who'd not been on pred for as long and you would be further along the pathway.

However - raised IgE and CPA 19-9 levels do need to be investigated so hopefully you can find some work housesitting for a while at least.

And the absence of any other possibility - lots of virtual hugs.

[Fatsiajaponica]

Well, what a dogs dinner it has been for you and I am sorry that you have been put under so much stress which doesn't help with the illness. As PMRpro says, not unusual to come across grumpy and unhelpful rheumys and hopeless GPs. The stories on here make your toes curl.

I hope the imaging tests sort it out with a definitive diagnosis then you know where you are. Wishing you good luck and here is a hug 🫂

[Louisa1840]

Just to say that I feel for you Ginger Poodle. That's a horrible situation to be in! Love, Prayers and virtual hugs!