Hello....this is my first post (although I have been reading a few of the posts over the last month or so). My name is Ailsa and I was diagnosed with RA a year ago when my little boy was 16 months old and I was 30. I have just been to see my consultant today and need to make some decisions about my medication. When I was first diagnosed I was given the option to go on a blind clinical trial of tocilizumab and/or methotrexate (4 different variables with placebos) which I took (started Oct 2009). However, after 6 months it was obviously that it wasn’t working and so I came off the trial. I was then put on triple therapy – methotrexate, Sulfasalazine and Hydroxychloroquine. 5 months down the line and it doesn’t seem to working very well (although I feel a huge improvement from when I was on the trial!)

So .......consultant suggested today that he refer me to see if I’m eligible for biologics (which he thinks I will be) and if so start on a biologic and also continue on the triple therapy or again there is an option of a trial. This time is won’t be a blind trial but will be Rituximab.......so I now have to decide what to do and would welcome any advice!!!

It’s great that there are so many different treatments out there but I also feel a bit overwhelmed by it all and find it very hard to know what is best to do!

Thanks!
Ailsa
Xx
P.S I’m also starting injections of MTX instead of tablets – any info on this also appreciated!!![/color]

Hi Ailsa, big welcome from me too. Im Heather, 48 diagnosed 2 years ago, still trying to get my meds sorted but am ever hopeful!! I swapped to injecting mx as the side effects for me were awful. They are so easy and no sickness at all which I suffered from on the tablets.

Good luck and keep posting!

Heather xxxx

Hi Ailsa

Welcome to the forum but so sorry you have RA.

I can't give any input on biologics, as I don't take them (possibly will be soon) but there are a whole host of folks on here who do and I am sure they will tell you their own experiences.

Have you checked on the "drugs" section of the NRAS web site? There is some excellent information on there, and the wonderful ladies on the helpline are always willing to chat through problems with you. They will also put you in touch by telephone with volunteers who have experienced the same situation.

I'm Jean 68 years young with a great husband, Steve, daughter, s-i-l and two fab grandkids. I have had RA for 9 years.

Please keep posting - we look forward to getting to know you.

Love Jeanxxx

Hi Ailsa.
Can I just add a welcome to the forum, but sorry you have RA. I'm quite a bit older than you, and my RA started around 3 and a half years ago. I too started on Methrotrexate, then had sulphsalazine (sorry can't spell it) added but neither of these helped. I then went onto Humira for 5 months but that also made no difference, then I had enbrel for approx 8 months, (found the injections for these much easier than the pen type one for Humira) I'm now on Rituximab and although the first infusion didn't have much effect the second was a little better and the third better still.
However as others have said we are all different and Humira works great for some whilst Enbrel is better for others, therefore its really difficult to give advice.
I think the hardest thing is getting so excited and scared of trying something new,so hopes are raised and then finding it doesn't suit or work, but there are lots of things out there.
The only other thing I thought about was it might be worth asking you consultant if you do decide on the rituximab and it didn't work could you then go on to other biologics as I was told you couldn't go backwards (apparently NICE says something about only using Rituximab if you've failed on two or more biologics - at least I think that's what it says - somebody else may be able to give more details about this)
I'm sure you and your consultant will find the right pathway and that things will get easier.
With all good wishes
Sheila

Hi Ailsa

Welcome to the forum. A great place to be for support and information; lots of folk, lots of knowledge and a wealth of tried and tested experiences! Glad you have found us!

I'm Lyn, married to Mike, we have four 'growing-up' children and live in Thornton Cleveleys in north west Lancashire. I was diagnosed with RA 23 years ago, aged 31, after the birth of my eldest child, and have since run the gamut of medication (although more options are popping up now and again thankfully!) and had several surgical procedures along the way. Currently on Enbrel, Methotrexate, Prednisolone and Naproxen, and a wagon load of pain killers! Been largely out of control for the last 15 months, but heyho things can only get better ... hopefully!

Sorry to read of the problems you are having but hope that you will find much useful information on the forum and website. It always concerns me when I read that people have been diagnosed with RA and been offered trials with placebos. In my opinion (and I am sure that of some medics!) you need treatment appropriate to you from the outset. After 6 months the disease can have a life of its own! Good news that you are now being considered for a biologic treatment. There are several to choose from, as you realise, but it is important that the right one is chosen. NRAS do a great publication entitled "Biologics, the story so far"; worth calling the helpline for a copy if you don't already have one. Rituximab is normally a second line biologic offered if you have failed on Enbrel, Humira, Infliximab or Cimzia. However as a trial the NRAS guidelines won't apply in the same way. Ritiuximab is considered unsuitable if you are diagnosed as sero-negative RA. Most anti-tnf treatments are used alongside methotrexate as research has shown that this offers the best results.

This is just my opinion, so please don't take as medical advice, but if it was me I would be inclined to opt for either Enbrel or Humira. Both have been around a long time and are well tried, tested and documented. Personally I have had great success with Enbrel but equally others have found Humira does the trick, they work in a similar way. The reason I say this is that it will give you more options for the future in case a drug fails; I was told that working backwards from Rituximab isn't always as successful. Enbrel is my second biologic so also worth thinking ahead a little.

Sorry, I have probably overwhelmed you too! Keep posting look forward to getting to know you

Lyn x

Hi Ailsa

Sadly tiredness seems to be part and parcel of this horrible disease. The trick seems to be pacing oneself and not overdoing it otherwise you end up paying for it.

Hope you enjoyed the banana loaf.


Sue

Hi Ailsa, and a very warm welcome to the forum. I`m sorry you`re having a tough time at present - it`s a very frustrating time waiting for the right drug to come along.

I was diagnosed almost six years ago now, and failed on a number of DMARDs and combinations of DMARDs. I`m currently taking humira - which I started four years ago, and it has made a huge difference to my quality of life. I take it on its own, having ended up in hospital with respiratory trouble caused by methotrexate. The humira has worked just as well without MTX, and my consultant has no plans to add anything else in as yet. I didn`t choose humira myself - my rheumy decided on that particular biologic.

As Lyn says, NRAS have a wealth of info about the RA drugs, and I`m sure more members will offer advice too.

Is it Professor Isaacs at the Freeman you see? I go there, and I see Dr. Bridget ( Griffiths).

Take care,

Kathleen x