Hi i am new to this website, only joined NRAS a couple of weeks ago. I am 37yrs old and was diagnosed with RA in Sept 2009. The first year was a bit rough and now i find it hard to remember how bad the pain was. The speed that the disease progressed from being diagnosed was incrediable,although in hindsight i think i was ignoring signs for some months before i finally went to the doctors. Over the year i was commenced on several medications and only really started to feel better when methotraxate got up to 25mg.
In sept 2010 i was asked if i wanted to take part in a clinical trial looking at the effect of Tocilizumab on neutrophil count, i started the trial and saw a massive improvement straight away, i have now completely come of methotraxate and attend hospital once a month for the infusion. 4months ago i was told i was in remission which was great. Then the infusion started to reduce my neutrophil count so much that a one month i couldnt have the infusion and now i only receive half the dose. I am nowhere near as bad as i was but lately have started to wake up very stiff again with swollen wrists. I am also experiencing a lot of discomfort in my right hip and awaiting an x-ray.
Not sure what will happen when the trial finishes, just want to feel well and hate the impact the RA has on my family. I have two boys 5 and 6 who love playing football and play fighting and struggle to join in with them sometimes!
Apologises for format, i am computer illiterate
Suzanne x

Hi Suzanne, and welcome to the forum.

It`s a shame about the Tocilizumab, especially as you were doing so well on it - there always seems to be a raft of side-effects just to make things more difficult for us. I agree with Doreen - it would be a good idea to discuss things with your rheumy team to see what the next step is.

I`m Kathleen diagnosed over 5 years ago now, and currently take humira. My two little grandsons are aged 4 and 6, so I know what it`s like trying to keep up with them!

Take care,

Kathleen x

hi Suzanne welcome from another Suzanne,

i was wondering the same about going back onto Methotrexate as well,

perhaps contacting Rheumy Nurse would be the best bet if you feel you're not doing so well now.

i'm 58 married with a 29 year old Daughter,

it must be difficult with two little boys to look after,

let us know how you are getting on,

Suzanne x

Hello Suzanne

Welcome to the Forum, great place for support and help. Never be frightened
to moan of here.

I am Rose from Somerset aged 57 (going to France in 12 hrs time) I have
been of mtx, hydro leflum and failed on all. Waiting to start humira but unfort
I have been unwell and been unable to start. Still have a few days left of
pencilin so fingers crossed when I get back. I am on tramadol and amitrip
paracentol and celebrix an anti inflam

Keep posting and hoping that you get sorted perhaps you ought to ring
your RA nurse


Rose

Thanks for all your kind messages and advice, phoned rheumotology nurse today and he is going to speak to the dr running the trial and get back to me
suzanne x

Hi Suzanne

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 and NRAS!

I'm Lyn, married to Mike, we have four children (well I call them children but perhaps it's time to stop!), Abby 23, Ian and Jake 18, and Louis 16. All four in various stages of education! We live in Thornton Cleveleys in north west Lancashire. I was diagnosed with RA 23 years ago and have since run the gamut of medication (although more options are popping up now and again thankfully!) and had lots of surgical procedures along the way. Currently on Enbrel, Leflunomide, Prednisolone and Naproxen, and a wagon load of pain killers! But heyho...

I appreciate the problems keeping up with your boys; I had RA when I had my children and trying to cope with four of them under 7 years old was a job and a half at times. But you do get there so hang on in!

There have been some excellent responses with Tocilizumab but like many of these drugs they can either lose their efficacy with time or manifest in unwanted blood problems. It seems control of RA is still quite a guessing game in many respects. As others have said perhaps Methotrexate may be the way forward. Is it possible to increase the infusion gradually to between half and full dose to a level that doesn't cause problems? Would be a shame to give it up after the success you have had.

Do keep posting

Lyn x

Hi all,
no phone call back from r/nurse, because pain had eased i didnt chase up but after a busy night shift on thurs hip was really playing up. called hospital yesterday and no answer, presumed they finished early for bank holiday weekend. Never mind, got a week off work with boys being on half term. My mum having boys overnight tonight and out for a meal with my wonderful husband!
suzanne x

Hi Suzanne. Have a lovely time tonght and a good rest over the weekend.

Sheila x

thanks to all the replies i have had. went back to hospital yesterday and neutrophil count improving so may be able to have full dose of infusion next time. still got pain in right hip, comes and goes and worse at night,had an xray which didnt show anything, now waiting for MRI scan.
I live in Formby, Liverpool
Suzanne x