My Living Rheum :)

How do I write a 23 year history in a blogl! Hmm ... that is a difficult one! Each event with RA could be turned into a novel. So where to start ... grab a cuppa and a chocolate biccie and here goes!

My first child has arrived, I am happily married, and I have a successful career working as a manager in a Legal Aid Office. Looking ahead I imagine how our lives will pan out; adding to our new family, taking family holidays to the European destinations we have come to love and continuing the job that I do actually enjoy! Really, I do! It all came to a sudden halt when I was diagnosed with severe sero-negative rheumatoid arthritis. That was almost 23 years ago.

It took nine months from the onset of problems, pain in my feet and ankles which I put down to more walking than I was used to, (well you would, wouldn’t you?), to seeing a Rheumatologist. My GP had suggested possible arthritis but it was a long shot; she made the referral ‘just in case’ knowing how long ‘the system’ could take. That’s how it was in those days… a long wait! Arthritis? Me? Good grief, I’m 31 and I have always been very sporty and kept fit. How can I possibly have arthritis? Clearly this GP has no idea, I’m sure I’ll feel better soon. During that ‘waiting period’ I returned to work after maternity leave but problems quickly mounted. Climbing stairs, pulling my chair out from under my desk, opening drawers, opening large files, sitting for long periods, fatigue … you get the gist? The appointment day dawned and boy was I glad; I now believed there was something actually wrong!

Watch out, man at work! Not sure what I expected, a puff of smoke and a diagnosis hanging mid air? Sudden panic as I think perhaps these symptoms aren’t real, perhaps I’ve convinced myself I have a problem. Perhaps they don’t exist and I am about to be found out. Perhaps ... ... I give a history of the symptoms hoping that I don’t sound completely mad ... hurting feet, hurting hands. It isn’t sounding too promising. Then comes the physical examination. Well, exams were never my forte so I can’t imagine this is going to go down to well! He prods and pokes, twists and turns and not one joint escapes his interrogation in the search for a diagnosis. Phial upon phial of blood drain from me. We’re done and now for the results ... the nail biting bit, well it would be if I had any nails left to bite! I was told that when the blood test results came back I would be started on treatment for Rheumatoid Arthritis. Well, it meant nothing to me … why should it? Rheumatoid Arthritis, what on earth? Oh well, he did say it could happen after childbirth but would likely burn itself out after a couple of years. I clung to that lifeline …

That appointment took place just before Christmas and two days later I couldn’t move; I was in agony, burning up, nauseous, very tired. I had never experienced this sort of pain or distress before! Not a great way to spend Christmas, my daughter’s first. I was prescribed high dose Prednisolone and Chloroquine (successful treatments were few and far between in those days and steroids were the accepted way forward). Childbirth was the catalyst; it set the wheels in motion for the years that followed. In the following months I lost three stone as my appetite disappeared: I was only nine stone to start with! I could barely walk, I couldn’t look after myself, everything was so painful. I had a baby daughter I couldn’t look after … it was heartbreaking. I was not well enough to return to work and a year later, June 1990, I was medically retired. The ‘magic’ two years passed … still, I clung to that lifeline.

I tried every drug I was offered. I spent a fortune on pills and potions that I read about and believed in, “would it be …my savior? … my cure? I tried various diets but of course how would they help an auto-immune disease? I wasn’t getting better; this RA, it wasn’t going to burn itself out, was it? I stayed positive, why should I let this beast of a disease take my life, my life with my family. It had already taken my career. I fought back.

The arrival of our three boys, twins Ian and Jake in 1993, and Louis shortly afterwards in 1994, completed our family. The pregnancies gave me temporary relief from RA. Although not quite in the plan, I now had a large family, three babies under 16 months and a 6 year old. I remained positive; RA would just have to take a backseat, I had other things to deal with.

Three months after the birth of Louis I am back on the drug regime and the following six years were a time of trial and error with a modicum of success thrown in; gold injections, sulphasalazine, leflunomide, azathioprin, methotrexate and the rest. Regular blood tests merged with numerous visits to the baby clinics, hospitals, nurseries and schools. Each drug was going to be the one for me, the one that would give me back my life, the one that would see the back of this wretched disease. Each drug worked for a time and hopes were raised … but then, without reason, efficacy dwindled and hopes were dashed. It was a gut wrenching time as I could only watch our children grow, unable to join in family games and be a ‘proper’ Mum. By the time I’d done the meals, cleaning, washing, shopping and everything else that tags along with the life of mum I had no energy left for anything else. Reading bedtime stories became my special time with the kids. I could still read and I could still speak, thankfully.

At last, we are on the threshold of a new drug therapy, anti-tnf. Its 2003, I am put forward for a trial of Infliximab (Remicade). The results of the infusions were literally amazing; I had my life back and with it I was able to do many of the things I believed I might never do again. Unfortunately, a year later, it lost its potency, problems started to return and its back to the drawing board. Three months later I was offered Enbrel (Etanercept) in combination with methotrexate. The combination has been wonderful and worked well alongside a maintenance dose of prednisolone, until …

Early last year Neutropenia took hold; the body’s inability to produce sufficient neutrophils to fight infection. Cause … Methotrexate! So it’s goodbye Methotrexate, hello, Naproxen, an anti inflammatory, but better than nothing! Think I’ve tried and failed on all the DMARDS so now I wait and see how things go. One operation later, one huge flare later, things aren’t looking too good. I have Leflunomide added to the mix and now I wait …

I will have to live with the joint damage caused by years of relatively uncontrolled disease. Some of that can be repaired by surgery. The necessary has been done (wrist replacement, thumb joint removal and fusion, metatarsal head removal, lens replacement, knee repairs, to name a few!) … the rest will wait for now! There are new medications being licensed all the time and I know the future brings with it hope for all of us with RA. Disease control is paramount for us all. So, when you are poppin’ the pills that you really would prefer not to take (they are, after all, mighty toxic stuff), remember, they are a means to an end and nothing more. A fistful of pills is a small price to pay for a life, yes, one with a chronic disease, but hopefully one free from joint damage. And through it all I remain positive that one day …

[Gina_K]

Hi Lyn,

Great story and well written, glad you are still positive and I agree about the pills being a small price to pay. I am lucky I have an aunt to advise me, my mum did'nt have RA but 3 of her sisters did, and she told me from day one take the Dmards, they won't ease pain but hopefully control joint damage. Heres hoping!

[Hidden]

Hi Gina

Thank you for your kindly comments! Diagnosis can be one hell of a shock to the system. I mean who expects to be told out of the blue that they have a chronic and incurable disease? Along with that goes the prospect of taking all these pills forever and a day! It's a fast learning curve but thank goodness drugs are now available that will stop the rot ... providing they are taken, of course!

That's very unfortunate to have three family members with RA, but your Mum escaped!

[Hidden]

Wow Lyn,

What a story, you tell it well. Not like me waffle waffle waffle, you are doing so well to still stay possitive after all your failed drugs and damage RA has done to your body.

I hope you find another mix off drugs that work for you again so you can get some relief in joint damage.

[sylvi]

Hi,

I,ve had ra for 7yrs and 2yrs ago had to have a knee replacement,didn't go well, Last year had to have ligaments stitched back, ever since i've been in constant pain and like you i refused to give in to this bloody disease, but its getting me down at the moment. It's affecting my eyes and all down my right side. I understand where your coming from, i can relate to everything you say.Am seeing clinic friday so hopefully will be able to tell me a bit more.Will be going into hospital for a steroid infusion in march. I wish you well in fighting your disease.

[Hidden]

Hi Lyn

Although I have read your story before, this time I sat and took it all in. I think in the past I have almost been afraid to ... it is so had to imagine, even though I recognise the pain and discomfort, what it is like to keep having your hopes dashed. Thinking you had found the meds to let you lead a better life only to have them fail. It is so easy to read about these things and not really appreciate exactly what is being said, or rather how you felt and appreciate how it might fee for myselfl. So brilliant well done. It is amazing you stay so positive and hope you get some deserved relief. Take care x

[JuliaS]

Oh Lyn, thanks for you post, it was such a good insight into all you have gone through over the years, with the children and losing such a flourishing career. I know its often said, but you really are a true inspiration to us all and your thoughts help so much to cope.

My mum was diagnosed with it around 1985 ( she was 61 ) she only had gold injections and steroids, by the mid 90s she was completely disabled and in a terrible state and passed mainly due to heart disease, which was not picked up until her passing away.

I do so hope the new mix of drugs really helps get it all under control, you have had a very difficult time.

Julia xx

[Catwoman66]

Thank you for sharing your experiences with us. It's so helpful to read what others have gone through if only to say "I get that!" You always manage to write so concisely and clearly and it's always a pleasure to read what you have to say.

After two years I'm still coming to terms with my diagnosis. My onset seems to be slow but I still can't believe this is as good as it's going to get and I'll be popping noxious pills for the rest of my life. I still can't believe that I won't wake up one day and be fine - that's still a struggle and, to be honest, probably what's keeping me going. I just can't accept that it'll never happen.

I was interested to read you've had a lens replacement. I went to the optician a couple of weeks ago and she said there had been deterioration to the lenses. She advised me to wear sunglasses more often, even in unsunny situations, and I was a wee bit too shocked to enquire further. I presume she means I'm developing cataracts (I'm 46) which is a worry as my grandad was blind with them and my uncle (his son) was registered blind. However I'e always had 20/20 vision and this deterioration is rather sudden. After reading your post I'll be going back and grabbing the woman by the throat to give me more details. I kind of wondered whether the RA may be involved. Thanks for giving me the evidence I may need.

x

[Georgia3]

Lyn, thank you for sharing, you have always been here helping and advising us when we feel worried and concerned. Your journey with RA has been a huge impact on your life, and you are still here helping all of us. I am still new to the journey, diagnosed in July 2009, so only tried 3 DMARDs so far. As you know, still struggling to continue working, refusing to give in to this rotten disease. Barbara

[Lorrayne]

Dear Lyn, not only could you have written all that for me, but for many others too. It has made me cry, reliving all those years, but its comforting to know that you are not alone. Unfortunately though I think no one, not even consultants, really understands unless they have RA themselves. I have had RA for 21 years, I was 28 when I got RA after my daughter was born. Still struggling, still fighting, but the worse thing for me, was and still is, feeling so ill and being in so much pain, putting on a brave face and yet to the outside world and those close to you, looking essentially "normal" and fine, a perfectly healthy person, until of course people catch sight of the dodgy ugly joints with bits missing and looking a bit odd, with lumps placed in the wrong places and walking a bit funny in comfortable but not fashionable shoes! Can't stand up, can't sit down, can't bend down, can't cut your food up or hold a cup of tea, can't clean your teeth without pain or dry yourself with the towel, I wont mention buttons, socks and stuff! I do seriously think that everyone involved in RA, be they consultants, nurses, familiy members or GPs should be asked to read what you have written, then they may start to understand. I have not found any published literature in the hospitals that actually tell it how it is. My own piece of advice to all with RA, be strong, keep your focus, on doing and achieving as much as you can in the things you want to do, just everyday stuff. If you lose that focus, you will lose the battle. Take more painkillers, my physio lady once told me " you dont get a blue peter badge for being in pain you know". Take care all with RA, Lorrayne.

[Hidden]

Thank you all so much for your inspiring comments and thoughts. I guess at the end of the day we all tell similar stories, stories or parts of that we can each relate to. That's the great thing about NRAS ... knowing we are no longer on our own. We are part of a community brought together by this wretched disease. Remaining strong and positive, accepting our limitations (not always easy!) helps the journey along it's way. Drugs improve, awareness improves and with it a bright hope for the future.

Once again, thank you all for your kind messages.

Be positive, stay positive,

Lyn x