Is there anyone in France with GCA and/or PMR in this group ? Y a-t-il des personnes vivant en France dans ce groupe avec Horton ou PPR ?

[Dochaz]

Reaching out to any people who live in France with either GCA or PMR, or, in French, artérite à cellules géantes ou pseudo polyarthrite rhizomélique. When I click on the "find people near you" button, I'm sent over the Channel to England!I would be interested to hear how you were diagnosed, by whom, what meds and treatment plan were prescribed and how you are doing so far.

[DorsetLady PMRGCAuk volunteer]

Hi

IdasMum does - here’s her profile-

healthunlocked.com/user/Ida...

[Dochaz in reply to DorsetLady]

🙏💗

[IdasMum]

I'm here in 86

[Dochaz in reply to IdasMum]

Hello, IdasMum! I'm sending you a chat message...

[mad-country-lover in reply to IdasMum]

I am also in 86 near Loudun

[Dochaz in reply to mad-country-lover]

Hello! I see your latest posts are from 4 years ago. Does that mean you are in remission?

[mad-country-lover in reply to Dochaz]

I should be so lucky oo la , I have been through quite a bit of depression the last couple of years , mostly ( siblings ) and problems that have aggravated my PMR so they have also been up and down But I am now down to 6mg per day and feeling better after blocking half the family , I do read posts , but my concentration is still naff xx

[Dochaz in reply to mad-country-lover]

Good to hear you're still around, but I'm sorry things have been challenging for you. I know all about concentration, or rather lack of... I don't know whether it's Pred or just aging. Anyway, I hope you taper successfully from here on in 🤞

[Drawyahmahtram]

I have recently come to Morocco (regular visitor) with "permission" from NHS Wales (no bio written yet as so far only read posts, 80 yrs and 8 months into GCA = "Hortons") could tell you a little about the rhematologue and differences in Methotrexate blood tests. Guess treatment will be similar to France, if can remember how to send a private message.

[Dochaz in reply to Drawyahmahtram]

Click on the paper aeroplane icon!

How to send a private message

[Frenchduck]

Hello Dochaz

I'm in the south west of France. Diagnosed with GCA which included LVV (they still call it Horton's here) in early April 2020 aged 68. This followed a 3 month illness and I had no idea what was causing it. I was in Spain at the time but fled back during the lockdowns in March. My GP did some blood tests and a scan on my lungs (which was clear) and sent me to hospital.

I had lots of blood tests, an MRI brain scan, a temporal biopsy and a TEP scan which confirmed the diagnosis. I was in hospital for 9 days over the Easter period of 2020. My initial treatment was 40mg/day of prednisone, slowly tapered during the next few months. I was carefully monitored with weekly blood tests and appointments with the hospital consultant during that time. In August 2020 she put me on weekly injections of Tocilizumab (RoActemra) as she said the prednisone wasn't working as well as she had hoped. I tapered off the pred and came completely off it in January 2021. My injections have tapered since the summer of 2021 to once every 2 weeks, then 3 weeks and now I have it every 4 weeks. I have seen the consultant at least twice a year. I see her again in May with the view of stopping them altogether. The blood tests are now every month to monitor the CRP and fibrinogen, every 3 months more tests are added on and every year even more are added on. It's all spelled out on the ordonnance. If there is a dodgy result (as happened last summer) it is followed up with more tests. This is in addition to the blood tests done by my GP to monitor cholesterol, thyroid etc.

My care has been shared between the GP and the consultant. When I see her she writes a report to the GP and I get a copy. He won't change anything without her permission. So far I haven't had any flares that I know of although I am told to always watch out for symptoms. I have a plan to follow if symptoms were to return especially any vision problems. I am very pleased with the overall care I've received. I'm the one who has been pushing it to come off the injections. The consultant is more cautious.

That's the short story and I hope it helps. I'd be interested to know what it has been like for you.

[Dochaz in reply to Frenchduck]

Many thanks for this very detailed reply!

We seem to have had very similar experiences re diagnosis and initial treatment (though I was only in hospital for 2 non-consecutive half days for the battery of tests and then the biopsy, and another morning in a different hospital for the Pet scan) but I was never offered anything other than Prednisone (+ vitD and calcium) and am on 7 mg now, 10 months into treatment. One minor flare (return of PMR pains) which set me back a couple of weeks, but I'm back on track again.

I haven't been back to my GP since I was diagnosed. He referred me to the internist who eventually diagnosed GCA/LVV and the internist writes all the prescriptions for regular blood work and Pred. I had phone consultations with him every two weeks until last month, now it's monthly. I know he sends all the paperwork to the GP and I get copies too.

Like you, I think the level of care is good here and waiting times for tests, scans, blood work etc, are very short. Can't really complain at all!

Best of luck, and I hope remission for you is just around the corner ☘!

[Frenchduck]

Thank you for your good wishes. I forgot to mention that I have had an eye examination with the ophthalmologist every 3 months since diagnosis which includes an eye scan. This makes me feel more secure and puts my mind at rest when he says there's been no change.

When I went to have a routine bowel examination last year, under general anaesthetic the anaesthetist wouldn't do it without an up to date cardiologist's report. I got within days and he followed it up with an ultrasound a few weeks later just in case the illness had caused any heart problems. Luckily everything was okay and again it put my mind at rest. All this treatment is paid for by the social security under the 100% regime. I feel very lucky and wish all sufferers had the same standard of care.

Sounds like you are doing well and hopefully it will continue.

[Dochaz]

Yes, GCA is on the list of illnesses that are exempt from charge, so thankfully we don't have to worry about the expense. My ophthalmo said once a year was sufficient. I'm seeing him again in May. Nothing to report last year. I routinely do the bowel cancer test we get sent every 2 years and nothing so far. Mammos also every 2 yrs, all clear.

I got an electrocardiogram and ultrasound heart scan as part of the initial process to see what was wrong with me. All well there. Also had multiple X-rays of all joints from shoulders to ankles, CT scan, MRI, Doppler, and finally PET scan... They were very thorough. It was the PET scan that showed inflammation of all the main arteries.

They took 13 vials of blood and tested for all sorts of genetic conditions too. We're in good hands, I think!