It's a sweet and sour kind of day

LignumVitae

First of all. Thank you to everybody for all your support and comfort and kind words and for putting up with me and my moans for so long.

I had my appointment this morning and I took Mr LV and the girls but at the last minute I left them in the waiting room and went it alone (you were all in my handbag). I told it like it was to my lovely nurse who sent me back to the waiting room until my consultant was free. I went back in and she looked at my hands, I had gone armed with a picture of my knee from yesterday when it was sporting a big egg shaped lump because I knew (and was right) that it wouldn't be so kind as to do that this morning. We never got passed my hands. Following from June's bad DAS score my hands obliged with 8-10 swollen joints. Working on a dual diagnosis of sero-negative RA and AS I have qualified for biologics and should be starting enbrel in 3 weeks time.

I'm pleased that I will hopefully soon start gaining a bit of control but I am sad that I need to take anything and that I qualify and that arthritis, the slug of life, exists at all. It feels odd being pleased to qualify for biologics because, lets be honest, that means things aren't so good but at this stage, I'm just happy to finally think I might be back on my wobbly creaking track soon.

Thank you all so much.

stickywicket

Putting up with ? PUTTING UP WITH YOU :shock: LV, you are one of the most helpful, thoughtful people on here regardless of how bad things are for you. Let's have no more of that rubbish, please

I'm very glad you'll be given enbrel but then it's easy for me as the enbrel and the doubts and fears and uncertainties that any new med brings, is going into your body not mine. In your place I'd be experiencing all the mixed emotions that you are. When mine were little I used to try to banish any wobbles with the thought that my one priority was to get my two to the point where they didn't need me any more. I did better than that. I've got to the point where both want us to move permanently near them. (Where did we go right ) (We won't, of course. We know the pitfalls: they don't )

You did brilliantly. You made it sound very ordinary and matter-of-fact but I'm sure a great deal of effort and self pushing and shoving went into it. You got the reward you deserve and need. Yes, it's an odd sort of reward - a very mixed blessing - but I do hope it does its job for you.

mig

Hi LV,i am pleased you got such a good result from your app,your nurse seems to be on the ball in getting the consultant to see you,three cheers for her.I consider myself one of the lucky ones in that RA didn't appear till i was in my 60s so i had a full an active life.I was given humira 22months ago and i will admit that i was absolutely terrified of putting such a powerful med in my body but it works for me ,i lead a near normal life now (just mowed the lawns back and front)and been out and done the shopping,so i hope enbrel works for you.Love and hugs to all Mig

Slosh

LV
I can empathise with your mixed feelings about the biologic but while the thought that you need it is not in itself a positive one, if it makes a difference and improves your quality of life it will be well worth it.
So glad that you were taken seriously and that there is a plan of action. Hope you are able to enjoy the weekend and that it makes a positive difference for you.

Boomer13

LignumVitae wrote:

I am sad that I need to take anything and that I qualify and that arthritis, the slug of life, exists at all. It feels odd being pleased to qualify for biologics because, lets be honest, that means things aren't so good but at this stage

I feel this very keenly, too. It's definitely nothing I would have previously felt joy over but now I can't wait to start my Enbrel, liver permitting. It is an odd emotional quandary to find yourself in. Blah, inflammatory arthritis!

Wishing you no bad reactions to the infusion and a successful response. Please post how it goes for you.

Anna

ichabod6

Hello Lv,

You have always told the story well and this post is no exception.
This time round I have been on humira for over twelve months
now and it is really working. My esr has plummeted, I dont use
a stick nor my push around trolley and i havent sucked a pain
reliever for months.
I do hope it works for you.
Just remember it isnt the only biologic in the cupboard.

Starburst

First, you are an arthritic mum of toddler aged twins, if anyone is allowed to moan, it is you. Secondly, we don't put up with you, we are actually privileged to have such a wonderful person on our forum.

I felt similarly to you last June when I was found to be eligible for biologic. I've had limited success with DMARD combos but my arthritic 'life' has been considerably better on anti TNFs with practically no side effects. For that alone, the double edged sword was a lot blunter.

Keep wobbling on. It's sometimes the only way. Wobble on with your head held high because you are fabulous. 8) xx

toady

Best of luck from a fellow Enbrel-er, I probably can't tell you anything enormously useful (it being largely a matter of whether you get on with it personally) but you only have to ask. It has certainly helped me greatly and v little problems with it after 2years+. Hope it goes well for you.

villier

I'm with Sticky you are one of the most helpful people on this forum especially what life throws at you. I just want to wish you well with the Enbrel, I hope it agrees with you and you can have a better quality of life, good luck LV we will hear how you get on................Marie xx

barbara12

Hello LV
I am amazed at how you have carried on in so much pain and still made us all laugh with the way you tell your story...so we don't mind any moaning coming form you....just has long has we can help..
Im so glad they have seen how bad your hands are about to start on biologic..I for one will have everything crossed for you ...hopefully a new beginning...xx

LignumVitae

Thank you everybody, you've made me blush. I'm still grateful for the space and patience you gave my complaints and frustrations.
Thank you to everybody who had a story of Anti TNF success, it gives me much hope that even if Enbrel isn't my cocktail of choice then there will be one out there. I have a brand new pair of running shoes and a little bit of me keeps looking at them and just wondering if maybe I can contemplate putting them on one day.

It's been a hard weekend, Mr LV has been working, the girls have been very upset with molar cutting and the arthritis has been very upset to hear that it's days may be numbered. It's been like fire fighting on numerous fronts but today is monday and I am upstairs 'working' and listening to chaos downstairs. It's Mr LVs turn.

All that means there hasn't been much time to contemplate my appointment on Friday or my future but at some point a small thought entered my head - the long term future with anti TNFs may be a step into the unknown but the future with arthritis and no anti TNFs is known and therefore, there's no big step to take, it's a bit on a no brainer.

Sticky, I think you heralded our first step into self sufficiency on Saturday with Tegen's first proper words, not 'Mummy' or 'Daddy' but 'Chaka' and 'Jessie' - the dogs :shock: I feel so loved.

dreamdaisy

To my mind this is a positive step but then I have an odd mind. Your disease needs to be brought to heel and controlled, and surely this is the next step in doing just that. I don't have a success story as such to narrate but there are a couple of bods on here for whom the biologics have made a great difference and if this means you won't get OA on top of the RA and AS then that is indeed a very good thing. ((( ))) DD

stickywicket

LignumVitae wrote:

the long term future with anti TNFs may be a step into the unknown but the future with arthritis and no anti TNFs is known and therefore, there's no big step to take, it's a bit on a no brainer.

Absolutely right. Go for it.

My firstborn's second 'word', after 'dadada' was 'ma'. I fondly thought it was mama. Nope, it meant 'more'

barbara12

LV I really do wish you well with the treatment,I had to laugh at the girls saying the dogs names... I am sure daddy and mummy wont be far behind.. fingers crossed for you ...xx

Boomer13

LV, do you you mind me asking, were you given a choice of biologic or did your rheum pick Enbrel for you?

LignumVitae

They picked for me. To be fair though it seems to be the first choice in most cases for AS and given that is one of my flavours I guess that's why. I do t think I've ever picked a drug though.

Starburst

LignumVitae wrote:

Thank you to everybody who had a story of Anti TNF success, it gives me much hope that even if Enbrel isn't my cocktail of choice then there will be one out there. I have a brand new pair of running shoes and a little bit of me keeps looking at them and just wondering if maybe I can contemplate putting them on one day.

I have a fab pair of running shoes which are good for ergonomic purposes. I'd like to think I could go for a run but I couldn't run before life with RA.

Eyes on the prize as long as you're realistic with it and have reasonable expectations. My rheum said my first anti TNF would 'give me my life back' but you know what, even if it didn't (which it didn't), if it takes you on the right path towards where you want to be, it's a good thing.

x