One of the lucky ones

This is my first blog, so bear with me! I think I must be one of the 'lucky' people with RA, because, from what I have read, I have had an aggressive treatment regime right from the start.

I ran my second London Marathon a month before I came to live in France in May 2007. In 2008 I was diagnosed with RA - I had achy hands with a mildly inflamed thumb plus I hobbled around for the first 30 minutes after getting up. My french GP immediately sent me for X-rays and blood tests which indicated the possibility of RA. He then referred me to a rheumatologist in the nearest city (1.5 hours away because I live in the foothills of the pyrenees).

The rheumatologist confirmed that I had RA and explained that because I had no joint deformities and was relatively young (47 at the time) he wanted to treat me aggressively so I commenced on MTX (thankfully with no side effects) orally initially and then by injection (not sure why). A year later I had a joint in my foot which was becoming slightly contracted so he commenced me on a cycle of Mabthera. Since then I have had 2 further cycles (last one in April 2011). I am now in remission but have weekly physio treatments to keep my joints supple and only take the odd paracetamol if needed but no anti-inflammatories. I am working 3/4 full time as a qualified nurse in an old people's home and although the work is tough, I don't suffer anymore than the next person.

So although the Mabthera and physio sessions are costly, I think it is cost effective because I am working and so therefore not receiving benefits (cheaper for the state) and I am practically 'deformity' free which is a good thing for me at the moment because I can do most things (unfortunately I have had to give up running, so my dog and I now go for long walks in the mountains) and it also good for the long term, potentially less hospital stays and ops. However, the down side to the french system is that they don't have rheumatolgy nurse specialists for advice etc hence I have joined Health unlocked to keep myself up to date.

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  • Well tiger you are most welcome and a great addition to the mix on here. I know it is costly in france,but you will be able to stave off most of the worst symptoms before they get too bad. You are working nearly full time which in my view is a blessing. I wonder if i hadn't been made redundant if i would be as bad as i am. Compared to others on this site i am not so bad.

    You willmeet a lovely mixed bunch of people from scotland,ireland,norfolk and america so as i say a mixed bunch and each of us has our own story to tell,some are harrowing some not so. The thing with this site is we are all there for each other, so welcome.

    sylvi. xxx

  • Thanks for the warm welcome

  • u missed out England Sylvie!1 lol

    Axx

  • i put norfolk and thats part of england. lol.xx

  • Hi Tiger,

    Nice to hear from you. There are a couple of us here with French links - HarleySue is in the Limousin and I'm over in the Jura mountains half the time. I'm still a UK resident (just) as tho' I largely work from home, any face to face business stuff is UK based so am in UK 51% of the time for that and medical treatment and so on.

    But I will be switching sometime soon, so trying to get my head round the French system, especially as am in very small rural area where it's a long journey even to get blood tests. I think Mabithira is the same as Rituximab? If it's not too nosey a question how much is your mutuelle a month? You're about same age as me & same disease so curious to know as yet to get quotes. Although I guess since you're working you are paying in to social benefits so that might reduce the cost a bit (there's a message tab at the top where can send a private message if you want)

    But interesting to know that French Rheumy's to go straight to biologics as part of the aggressive approach. I'm still doing trial & error with DMARDS, quite successfully, but I can feel that it's still not controlled after 2 years. But you can't get biologics unless last resort in UK & cost of going private for biologics here is way out of my league.

    And hope it's not been so cold where you are, we've been down to -18!

  • Great to have you on the site Tiger - and also really interesting to hear about another country's approach to rheumatology.

    I live in Orkney - a group of islands off the eastern top of Scotland. We don't have a rheumatology service at all here but instead things are brought to us from the big hospital in Aberdeen and administered by the GP service.

    I've just returned from having my bloods taken by GP who was telling me how far we've come up here re the rheumatology service. She said there was an extended period with no visiting rheumatologists at all until a couple of years ago and patients were only sent to Aberdeen if it was a sudden onset of aggressive inflammatory arthritis and otherwise could wait for over a year to see a rheumy down in Aberdeen.

    Like yourself we have no rheumy nurses here and if I have questions I have to ask my GPs although as they will readily admit they are not experts. I believe they have all been sent on training courses now however. I was lucky because when I presented with painful knees and writsts/ fingers my GP immediately took blood tests and on the results (low positive plus inflammatory markers quite high) decided to put me on Sulphasalazine - which was as aggressive as he felt he could get on his own without my having seen a rheumatologist. He also referred me straight away. I'm not sure how lucky I would have been if I'd been properly sero-negative though. I saw the rheumy about 4 months later and then again this November when he diagnosed me with RA and put me on Methotrexate (I had reacted badly to the Sulpha).

    It sounds like the biologics are less of an issue in France if you were put on one so swiftly. As Polly says in England people have to be assessed and this sometimes involves being left in great pain to show how the DMARDs are failing them which I think is appalling.

    Like you I count myself as lucky to only have mild RA to date a - despite the odd really nasty but brief flare. My hands are changing shape a bit after each flare, as the GP acknowledged this morning, but hopefully when my dose of MTX goes up a bit tomorrow and I get some good night splints off the physio/ OT this will be rectified. I will see the rheumy again at the end of March and GP said that he might put me on an additional medicine then if he decides the disease is still active.

    I get regular physio and feel generally well-off compared to many on here too, but it's a great place to come if you have RA and are also a bit isolated from a main rheumatology service so please do stick around - everyone's lovely. Tilda x

  • Thanks for the great welcome

  • Bonjour tiger et ca va? Hope you have a great time on this website it has really helped me.

    A bientot, (yep school girl french)lol

    Axx

  • Merci Allanah, je vais bien. A tres bientot. Tiger x

  • Hi Tiger, welcome to this site and I'm sure you will find it of great benefit. I live in the Limousin about 6 months of the year at the moment, broken into short visits planned around my UK treatment. I have a great french doctor and liase with my UK consultant by email when in France to send over blood results etc. I too am on Rituximab and am waiting referal to get my second cycle ok'd. It is much harder in the UK to get it signed off but we are not planning on living in France permantly so this way works for me. It's great to hear you are doing so well at the moment and I do hope that continues for you. Unfortunately it is taking a long time to get my aggresive RA under control but I'm keeping positive. Once I got used to the life changes I began to accept it and that put me in a better place. I still long to get back on a motorbike again but now know that is never going to happen, after 30 years of riding that was the hardest to accept for me, but I'm just thankful to be here to enjoy the good days and hope they will start to outnumber the bad days in due course. Over the last 3 years I've been desperate with this RA but can always rely on this site for a pick me up or answer to a niggling problem. I'm sure you will find many friends here.

    I really do hope you continue to do well

    A bientot, bisses Sue x

  • Thanks for the welcome. You sound as if you have a very positive attitude which is half the battle so keep your chin up. My geography knowledge is practically sero so I will have to find out where Limousin is and how near you are to the Ariege. x

  • Welcome tiger, sounds like you have had very good treatment tres bon xx

  • Thanks, by the sounds of other peoples experience I think that I do have good treatment. That said it still doesn't get over the feeling of isolation. The rheumatologist is great and I am usually in the consultation for 20 - 30 minutes every 4 - 6 months but afterwards there is no-one who understands RA to talk to. I am really glad I found, by chance, this site x

  • I feel exactly the same way as you Tiger - living off the Scottish mainland I know no one here with RA and only have my GP and a 15 minute consultation with the rheumatologist ever 4-6 months. At some stage soon that may well change to once a year with a video link for emergency consultations too so it's not easy and it is a very isolating disease I find even though like you I only have it quite mildly to date. TTx

  • I'm glad to hear that the situation in France is so good. My stepfather had cancer treatment and it was first class. I moved to Scotland from England several years ago and am relieved to be away from the upheaval in England. There's good linkage between the gp and hospitals and they make sure I keep up to date with blood tests etc,

    Meilleux voeux cathie

  • Glad to hear that you find the system is good in Scotland. My husband and I were both nurses in the NHS. One of the deciding factors to move to France was the stress that we and NHS was under. It didn't feel like the patient came first any more!

  • Hi Tiger,

    I am living in Spain, as my husband took early retirement in Jan 2011.

    As I am disabled I am treated as a pensioner, ( not great at 53) so all my medication is paid for by Britain.

    In England I was on rituximab, but have been put on Embrel here, as the hospital I go too has 1 nurse to administer the drugs & Rhuematologist was concerned if she was called away I would not be able to have treatment.

    As in France there are no specialist nurses, the gp has to keep an eye on things & refer me back to rhuematologist if she thinks necessary.

    I do hope you continue to be in remission, as I have many deformaties, & have had 11 operations in the past 9 years, some successful others not.

    Take care of yourself. xx

  • Hi there Peapod. Hopefully you are keeping nice and warm in Spain and perhaps enjoying the mardi gras. Hope that you are well controlled on Embrel. Tiger xx

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