Emergency treatment for GCA blindness

[DianaAdshead]

I have just joined this forum, so excuse me as I am relatively new to this, My Mother has been dealing with GCA for over 5 years, and generally doing very well, with almost no specialist assistance. Starting on 60mg per day of Prednisone and Omeprozal (stomach protector - but obviously dangerous) Mastacal D (calcium), Triimbo (inhaler for her Emphysema). She has successfully managed to reduce her dosage to between 7-10mg per day and monitors it with the intention of hopefully coming off it completely. Last week she suddenly lost her sight and suffered extreme temporal pain, she was admitted into the local Malaga Hospital, and eventually discharged herself because of lack of care or any medical assistance. I have just arrived from Kenya to try and help - more than concerned about the medical situation in Spain and I am desperate to find her so proper assistance / specialist advise / Spanish carers anything. Medication support to get her off the Omeprozal which is horrible stuff.

Any assistance would be greatly appreciated,

Many thanks in advance

Ben

[PMRpro Ambassador]

Hi and welcome!

You may think the omeprazole is horrible stuff - but often it is needed at high doses of pred to reduce the risk of gastric irritation which not uncommon at high doses. Medication to get off PPIs isn't really necessary - just a VERY slow taper of the dose over a few weeks, first halve the dose if possible for a week or two - depends what dose she is on at present and knowing that would help explain. Having halved the dose to the lowest available you start to miss odd doses at first, gradually increasing the doses you miss. Otherwise you run the risk of rebound acid protection which can be very unpleasant and painful. Some patients switch to an H2 antagonist - also suppresses the gastric acid but in a different way and has fewer and different adverse effects and is subsequently easier to get off. Gaviscon may also be helpful.

You say your mother lost vision last week - has it returned? Did they give her high dose pred again? Did anyone do anything? I'm surprised - Spain is usually pretty good at GCA.

[DianaAdshead in reply to PMRpro]

Dear PMR Pro, thank you so much. The H2 antagonist sounds good, Mum is worried about the Ultzeimers, the doctor in the hospital said its dangerous (she’s been on it for 5 years). At the hospital they didn’t take it seriously, no one could confirm what she was taking, Doctors didn’t turn up, it was generally complete waste of time. But they did give her 30mg Prednisone in the morning and 30 at night, Tramadol and diazapan as pain relief to calm her. Her vision came back, and the head pain subsided later this week. Yesterday she felt better, treating herself with 60mg Prednisone and Omeprazole she is taking every other day. But this afternoon she lost her sight again in one eye for about 2 minutes. Her sight is back again, but she is feeling pretty awful.

[DorsetLady PMRGCAuk volunteer in reply to DianaAdshead]

In that case she needs more - 80mg every day if she has enough until she gets some sensible medical advice.

[PMRpro Ambassador in reply to DianaAdshead]

As DL says - 60mg isn't enough.

The risk of Alzheimers is there yes, but there are lots of other things that contribute. If she were in the UK she'd be handed a PPI, we protest a lot about them and there are other ways of dealing with gastric problems but at really high doses of pred, the risk of gastritis is probably much higher than that of Alzheimers due to a PPI.

It isn't a GP you need as much as a rheumatologist in a hospital who knows what they are doing. The best option which could well be available to her is tocilizumab/Actemra but you need a specialist. Most GPs are totally out of their depth with GCA, so, it seems are a lot of so-called specialists!

I have just identified a Spanish collaborative study which had participant rheumatologists in Malaga:

Sara Manrique-Arija and Natalia Mena Vázquez

Instituto de Investigación Biomédica de Málaga (IBIMA), Málaga, Spain

UGC de Reumatología, Hospital Regional Universitario de Málaga, Malaga, Andalucía, Spain

If you can contact them they may be able to help with GCA expert names. Do you speak any Spanish?

[DianaAdshead in reply to PMRpro]

Thank you this is incredibly useful, I will contact them in the morning. Mum speaks broken Spanish, But I have a handy app that is very useful.

[PMRpro Ambassador in reply to DianaAdshead]

Any who do international stuff will speak some English, sometimes there will be someone who has worked in the USA or the UK.

It is sometimes worth googling government sourced medical articles for patient info in the USA which often have the pages in both English and Spanish and that helps you indicate relevant passages.

It is wonderful living the dream but when it gets to serious medical "stuff" speaking the local language is very useful. I cheat - I live in Italy but in a German-speaking region, I speak fluent German but my rheumy worked in the UK and seems to spend as much time abroad as here so his English is probably better than my German when it comes to rheumatology!

[DorsetLady PMRGCAuk volunteer]

So sorry to hear this - She should have been given high dose of Pred in hospital - at least 60mg maybe 80mg oral or an 500 to 1000 mg IV methylprednisolone dose for a few days.

I’m surprised, Spain is usually up to speed with GCA/PMR.

..and she need to be monitored, now its happened once, it can happen again. If she is not on enough Pred -and next time she may not be so lucky….

You need to speak to her GP and express your concern and make sure she gets proper treatment.

[DianaAdshead in reply to DorsetLady]

I am on a mission to find a better GP here, if anyone has any recommendations on good practitioners in Malaga region I would be really grateful

[DorsetLady PMRGCAuk volunteer in reply to DianaAdshead]

Probably not many - we have a few members in Spain, but not that many to be honest… but always worth raising a new post and asking the question … include in heading… more likely to catch the eye [sorry no pun intended, but as you’ve looked at my profile I’m allowed to say it 😊].

Hope you get some answers…

[DianaAdshead in reply to DorsetLady]

😂 Thank you

[DorsetLady PMRGCAuk volunteer in reply to DianaAdshead]

Have replied above re more Pred -every day, not every other day .

[PMRpro Ambassador in reply to DorsetLady]

Isn't that the omeprazole?

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Yes -could be -maybe misread that.. 🤔

[DianaAdshead in reply to DorsetLady]

It’s OK, I worked that out, all good

[Linlang]

I worked at Harrow health centre 1980s . We had doctor there who went and worked as gp in Spain in Malaga area. If he is still around I’m sure he’d advise you re drs meds…. He must be in 70s now.dr ? Can’t remember at mo but will ask former collegues..

I am on omiprozole for life . Have bleeding hiatus hernia and have had 3 iron infusions. Without it I’d be in trouble. Good luck.. I’ll get back to you with drs name. Bernie…..

[Linlang]

Dr in Spain is Bernie Willis

[DianaAdshead in reply to Linlang]

Dear LinLang, thank you, This is incredibly useful

[Linlang in reply to DianaAdshead]

Hope you locate him.good luck

[Sophiestree]

I only want to add what PMRPro and DorsetLady have said and up the pred to 80mg Daily. This needs very serious attention. Well done for getting on the case, very stressful for you. Hopefully the names that PMRPro have given will help. Good luck and keep us posted.

[DianaAdshead in reply to Sophiestree]

Thank you Sophie, our mission starts today. Mum has up'd the dose this morning and we are contacting the hospitals later, thank you. Will keep you all posted❤️

[PMRpro Ambassador in reply to DianaAdshead]

Have a look at this

spainexpat.com/information/...

They have a list of doctors in Malaga - the first in the list is American. Just scroll down the page. It also gives another link.