Latest update on Care for PMRGCA

[DianaAdshead]

Rheumatologists;

We have emailed both Sara Manrique-Arija and Natalia Mena Vázquez, without reply. We have made contact with Dr Anna Nieto based at the Queron hospital Malaga, she doesn't have availability until January.

We visited the Opthamologist, who said there was no damage to the optic nerve and slight reduction in perifferal vision, he was more concerned with the temporal nerve, and suggested we see a Neurologist

We have found Dr. Ignacio Garcia Basterre - based in Malaga in a private clinic - Neurologist - temporal artery. Unfortunately we cannot get an answer from them either. I call every 15 minutes!

Mum started taking 80mg Prednisone which has been an incredible help, and she is feeling better today, she has not had another in eye blindness (left eye) episode. But the left eye blindness has happened 4 times in total now (duration 1-4 minutes. She feels pain randomly in her left temple 2-4 times a day which stops her in her tracks, but otherwise calm and gaining strength.

Obviously its still a major concern, and incredible we cannot find anyone to take this seriously here, any advice on self medication would be gratefully received (obviously will do my research and cross check with our GP so no one feels exposed to back lash for helping)

We continue, life is otherwise good

My best as always

Ben

[SheffieldJane]

Everything crossed for you. 🙏

[DorsetLady PMRGCAuk volunteer]

For information my ophthalmologist keep me on 80mg for 2 weeks (had already permanently lost sight in right eye) until he was sure the GCA was controlled enough to ensure left eye was okay.

I was then on 60mg for another 8 weeks.

I obviously cannot say your mum should or can follow my example - but somebody needs to take control and prescribe enough Pred for continued use.

So sorry to hear you are finding it so difficult to get medical advice…

[DianaAdshead in reply to DorsetLady]

Thank you - Its so good to know someone is out there. Ill take this on board.

[DianaAdshead in reply to DorsetLady]

I am so sorry you lost your sight, do you mind me asking, did your sight return?

[DorsetLady PMRGCAuk volunteer in reply to DianaAdshead]

No.

I had a blurry eye for about 3 days -started at bottom of eye and moved upwards until on 4th morning on waking - nothing.

I had GP appointment on 2nd day -who didn’t consider it serious and not connected to other undiagnosed symptoms.

4th day attended A&E -diagnosed within the hour and on Pred within two. Was told even if I been seen on 2nd day it was unlikely what had been lost by then would recover.

Probably easier to have no sight in one eye than partial. TBH it doesn’t really stop me doing what I want.

[DianaAdshead in reply to DorsetLady]

Thank you for sharing, I am so sorry for your struggle and resolve. We are so grateful to you for being so helpful and conscious of the worry this causes. I hope you are strong and life is easier. Thank you as ever

[PMRpro Ambassador]

That really is unbelievable! Especially not to have availability for a GCA patient until next year - it is a medical emergency, like a heart attack or stroke because the mechanism is the same.

Did you look at any of the other English-speaking doctors on the list, even if not in Malaga. Even a contact with someone who could recommend an option somewhere else would relieve you of the strain.

Have you access to plenty of pred?

[Longtimer in reply to PMRpro]

Many countries seemed to have gone backwards with health!....yesterday USA, now this shocking story in Malaga! we complain here but I'm beginning to wonder....

[PMRpro Ambassador in reply to Longtimer]

I can assure you - I really don't think it would happen here!!!!

[Longtimer in reply to PMRpro]

Fingers crossed for you. Saw Max on Monday, so normal and pleasant, he said he would arrange an X-ray on my arm/shoulder, got the appointment today! He wrote to pain clinic a year ago! Got letter today, group on zoom to talk about pain, I don’t think so. Physio letter came too offering a phone call or video about my arm/ shoulder problem, I rung them, no hands on I enquired? Er, well, er….. goodness me! All so frustrating!

[PMRpro Ambassador in reply to Longtimer]

I do see the point of a phone call/video for the physio - gives them some info to decide if you need just a one-off to teach exercises or if you need a more rehab-orientated approach. But when you make it obvious you need more - er, um, er is not acceptable!!

[Longtimer in reply to PMRpro]

Will post what happens, if I can er, um, remember. Suppose I’ m thinking of old school when you got sent straight away to a physio, silly me.

[PMRpro Ambassador in reply to Longtimer]

Too true! Here you have to have an audience with the rehab docs to get physio approved. Currently a 5 or 6 week wait for that alone. Similar wait for a Covid jab too - though I could have had one a week earlier but it was a bit close after the ablation appointment.

[Longtimer in reply to PMRpro]

My mum used to talk about the good old days, now us. My son and nephew both comment on where are the children playing out like we used to?? On screens!

[DianaAdshead in reply to PMRpro]

Thank you, yes we have pred in the drawer ready and access locally to what we need. Would you know a rheumatologist in UK? maybe we could do an online consultation?

I am still pushing to find someone here or as you say further a field

B

[PMRpro Ambassador in reply to DianaAdshead]

You could try contacting Rod Hughes at The Runnymede - I've struggled to get contact details today, google wasn't offering the usual choice! This is probably the most reliable contact details - and didn't appear earlier today when I was looking!!!

finder.bupa.co.uk/Consultan...

I know he does do video consultations though usually starts with a F2F - but they will understand why that isn't particularly easy for you, Always worth asking - he can only say no.

[DianaAdshead in reply to PMRpro]

Amazing - ill call him in the morning - lets see if he will make an exception - thank you so much

[PMRpro Ambassador in reply to DianaAdshead]

Hope those details are right - blame BUPA if they aren't!

[Bridge31 in reply to DianaAdshead]

Having seen Dr. Hughes recently his secretary Jody’s email is

[e-mail]

[DianaAdshead]

😂, its ok, Ill track him down

[Viveka in reply to DianaAdshead]

Jody his secretary reponds quickest to phone: [phone]. Best wishes to you and your mum.

[DianaAdshead in reply to Viveka]

Dear Viveka, thank you

[Frenchduck]

Hello BenI'm sorry to hear about your mother.

I live in France but I go to Spain for the winter. We are on the south east coast about an hour north of Almeria.

The English speaking people we know who live there all the time swear by the Spanish health system and the care it offers. The only thing is that it's difficult to find English speaking doctors and usually they are in the private system. Those who don't speak Spanish well enough must take a translator with them and this seems to work well. There are people especially trained to do this. Obviously they have a fee but it's not more than paying privately for a doctor and then you have access to all the doctors and specialists.

I just wanted to mention it because if you are restricting yourself to English speaking doctors you are narrowing your options considerably.

I hope this helps and that you get something sorted soon. All the best.

[DianaAdshead in reply to Frenchduck]

Thank you FD, that is really encouraging to hear. We will try all the options we can. I have a very useful app iTranslate. Which has been amazing for conversations on the phone 💡