Me & my RA - it sucks, but my story so far..........

[HarleySue]

My passion is Harley Davidson motorbikes and I have riden my own Harley all over Europe for the last 20 years. My day job was as practice manager for a large firm of solicitors and laterly as a trouble shooter for solicitor's practices all over the UK, specialising in their solicitors accounts and their supporting software. In 2004 I decided to take early retirement and worked alongside my husband renovating an old house in France. Life was good until November 2009 when I woke one day and was unable to move for the pain . By December my GP had pumped me full of steroids and taken so many blood tests I thought I had none left. I was then sent for a consultation with a RA consultant. I was diagnosed with anti-CCP positive seropositive RA in Feb 2010. What's that I thought and when can you fix it ?- oh I was so niave then. I was put on methotrexate and kept on predisolone 30mg but by May my bloods indicated problems with my liver (and I've never drunk alcohol - how cruel was that?) within 3 weeks my liver had become very toxic. No more methotrexate then, but still unable to do much for myself because of the RA- couldn't get up stairs, had to have a bathlift and needed help dressing - I then tried lefluenomide but too high blood pressure stopped that.After numerous steriod injections and more drugs I was now desperate and getting no where fast. In desperation my husband paid for me to see a private RA consultant. I was immediately assesed as severe and put on anti-tnf CIMZIA injections. For the first few months this seemed to work and gave me some relief from the pain, although my hands and wrists were still pretty useless and the fatigue was awful. I realised that I would not be getting back on my 1675cc Harley Streetbob any time soon and made the awful decision to sell my 'best friend' Things have since deteriated further and my bloods have taken another nosedive on the anti-tnf. I am currently undergoing biopsies to what damage, if any, has been done as I've now become severely anaemic and the anti-tnf has been suspended. I cannot believe how much my life has changed in 15 months. I've gone from riding my Harley to riding a mobility scooter and find it very hard to come to terms with the constant aches and the pain. From being a workaholic with ants in her pants I am now learning to pace every task I do. I am still able to ride on the back of my husbands Harley, with help, but after 20 years riding solo it is difficult. We still manage to have fun with our legions of friends in the biking world and they make it easier for me to laugh off my disabilties when I'm with them. Alone in bed at night I feel differently ! I had no understanding of RA and what it meant to the individual before I was diagnosed and I live in hope that there is a drug out there that is going to help me get my life back on track in the future- that keeps me going but on bad days it's easy to forget that there are others out there much worse off than you !

That's my waffle so far and I hope that soon I will have something positive to write about.............

[Hidden]

Hi Sue

Welcome! Sorry to read of the problems you have experienced over the last 18 months, I understand where you are coming from with the failures of medication; I have been there on a regular basis. It leaves you wondering whether the right treatment will ever be found and then if it is will it last!

RA is a clever disease (not that I actually wish to credit it with anything for goodness sake!) ... it mutates, well kind of anyway. It continually moves about the body to keep you guessing. It's systemic so can play havoc with other body parts too!

Try to remain positive, there will be a drug suitable for you. In the meantime don't stress the joints by overdoing things. Your life won't be quite the same again but it will be different with new doors to open and things to try. Keeping positive is a challenge but with the right mindset you can achieve great things! Don't let the b***er get you down

Lyn x

[Gina_K]

Hi Harley S,

What a great interest, and you will get back to it, I used to love big dogs and always had them and enjoyed fabulous beach and country hikes with them. My life also changed dramatically 3 years ago, when it hit me very suddenly, tho when I look back there were signs, now I have two small fabulous dogs, a pug & a shih tzu, never thought I'd have smallies (always scoffed at little pedigree dogs) I was always recueing big German Shepards etc. My point is things have changed, but its still good.

There is definitly a treatment out there that will work and new ones being developed all the time (the injections anti tnfs will be pills in a few years, but the goal is to stop the progression of the disease, there is no cure.

In the meantime, protect your joints, take life slower, and be pushy with the docs, make lists of what you want! Try not to get depressed and if you do, take a good antidepressant as this helps also with the pain. I take Cymbalta and I doubt I could manage without it! x

[Hidden]

Hi Sue

Ouch! sorry you are having so many treatment problems. It is so difficult to come to terms with the changes isn't it, I was forced into early retirement but am currently unable to carry out any of my retirement plans so do feel very cheated. Lets keep our peckers up and trust that the right treatment will come along soon.

I have found this blog site an absolute God send, at last people who do understand and want to help. take care Wonky Sue x

[Hidden]

hi you poor thing, have had sinilar problems, awaiting endoscopy as methotrexate appears to have wrecked my gut!!, now starting golds injections, my fourth attempted treatment!!!

[HarleySue]

Thank you all for your words of support - I love this blog site as up to now I thought I was the only one going through all this ! My endoscopy and colonoscopy have come back showing infection in the gut and disease in the colon which they believe is due to excessive use of steroids - both can be treated with more drugs apparantly - will it never end? Have just booked motorbike holiday to France for 2 weeks with husband so forgetting injections etc for now and getting excited about adventure ! Keeping fingers crossed I manage without further flare - I will keep you all posted.

Take care everyone

Love Sue

[Hidden]

Hi Sue.

You have been through the wringer. I am just going through the wringer and hope one day to be hung out to dry!!! The biggest problem is slowing down and appreciating you can't do everything you want to well perhaps you can but not as quick!. I don't know really its been a right bloody nightmare for me. I was only diagnosed last October, but like most people there were signs before, and since they changed the meds, RA has took over my life. I am trying desperately to get back control from it. You have a lovely holiday to look forward to make sure you save your energy for it. Take care too. Julie x

[Tricia-P]

Hi Sue

Avoir un jour férié Happy. I can't think of happy in this context in French, must be age or may be the French haven't got another word. Well have a fantastic time on the Harley are you going in a sidecar.

Please remember to take a letter from your Rheumy or Dr to explain your illness, just in case then you won't need it.

Best wishes

Tricia aka Travelgirl with clipped wings

[Hidden]

joueux