I just saw this, left me feeling sad

PLEASE BEAWARE THIS IS ONE PERSONS JOURNEY with Ra

Oh dear, I didn't mean to upset anyone.

Just thought that it if anyone is having problems with......... Oh, your young to have arthritis, it can't be that bad yet.......Oh, yes I've got that as well, just keep taking the painkillers and you will be fine......etc etc.....they could show them this and then they may be understood abit more.

I'm in two minds about ringing up my local BBC radio station and forwarding the link to them. Last year, one of the presenters was talking about his wife suffering with migraine and how people just assume it's a bad headache and I thought to myself, yes and RA is just a bit of pain in your joints which you take painkillers for. I thought they go do a Health awareness slot say once a week when they could talk about various illnesses and how the general public just assume what something is.

Sorry again if I have upset anyone seeing this video.

Paula

sarah,well done you to do the video, how do you feel about going public?how are things now?has the meds made a difference?,i must admit i am not sure what i thought/felt but it is a good way to know what life is like for you at times, i have had to explain so often how my life is/has been and will change due to arther and now i have osteo,i am glad i took time to have a look,take care,dorothy

Dorothy-W,

I am pleased with responses good and bad, obviously I do not wish to upset or frighten anyone so would like to understand more if this does happen so that if i do decide to do another I can pay attention to areas of this.

My med history is upto the bit in the video at the moment, i'm on my first round of Rituximab of which I had the second does today so it is still early days.

Take Care

(Im glad that i have been able to help people explain to others the disease that they/we live with and others that have realized its not arthritis! - even if it only helps some its better than none I think)

Sara, I found the film very moving. I think if you showed it to people who don't know much about rA they would be quite shocked at how bad this illness can be. I'm talking about the people who think it's like a bit of OA in the joints that you take aspirin for. Thanks for sharing your journey. Naomi, xxx

Hi Sara, I did pick up this video the other day through NRAS.
It sums up many peoples experiences with ra that remain hidden and misunderstood.
It is good that you have taken the time to share your experiences with us all.
It will give other people better understanding of how difficult life can be with ra.
I was in this situation for 3 years but am now on Orencia, abatercept with amazing results.
Hope rtx does the same for you, keep possitive.
Thankyou Zena xx

Hi Sara

Thank you for making this video, it does illustrate the effects of RA on some people so well. A very good education tool.
I really hope that Rituximab will be THE drug for you. There is so much trial and error in this game.
I was diagnosed at 26, just after the birth of our first son. He is 40 this year - unbelievably! Despite severe disease I have had and still have much joy in life.
Many ups and downs RA wise, 20 plus surgeries and multiple drugs - but now I am on my 4th round of Rituximab and it is the best drug I have tried since diagnosis, together with Prednisolone which I am unfortunately now dependent on.
Yes, as my consultant says, it is such a shame that I have such a big legacy of damage, but the new drugs are so much more accurately targeted at tackling RA than those available 40 years ago and they are working on lots more treatments, so never give up hope as you rightly say.
I LOVE the butterfly metaphor. I am nuts about butterflies anyway!

Lots of luck for the treatment, I found the 2nd round more effective and it does take around 6-8 weeks to kick in.
Take good care,
Liz

Thanks annamaria,
I am hoping too that its my wonder drug at the moment having had the 2nd dose I'm feeling pretty rough but hope it will pass soon. I've got really bad head, nose is streaming, completely whacked and cough which is driving me nuts but hoping its just down to wiping my immune completely out feeling rough now means i'll be brighter in the future ;)
Take Care x

Hi Sara
I've only just caught up with this thread and I am completely blown away!

Thank you to Pauline for sharing it
Thank you to Sara - for making it and having the courage to share your experiences
Thank you to everyone else for all your thoughtful comments

I do so hope that rituximab is the wonder drug for you Sara - but whatever happens your spirit shines through and is an inspiration

This is a wonderful learning tool for anybody who is affected by RA - I've just shown it to my husband and he was very moved, and made him realise how much more there can be with RA. My journey hasn't been as complex as yours, Sara, and so far I'm fortunate that I've only got as far as MTX and that's working well - but there's always a nagging doubt in the back of my mind, that it might not stay that way forever.

Life is a journey and RA makes the bumps along the way - fortunately I have good suspension and tyres that help to smooth out the ride

Love and hugs to all - Sylvia xxxx