sero negative about to have rituximab

thecat

Joined: 12 Jul 2012 19:27 Hi every one,
I was diagnosed with RA in May 2011,it all happened so quickly. I got off my bus after work one evening, stepped off the kerb and bang !!!!! my hip went,I couldnt move my leg I dragged myself home & later that evening was taken to A&E. I was in bed for 5days couldnt even get to the loo.I recovered in a week or so, went back to work & 6weeks later it happened again at work ,my manager took me straight to my docs.Luckily the doc I saw had RA experience & referred me to rheumatologist. At my appointment I was having a flare up & was diagnosed there & then. I have been in said flare up ever since. I havent had a single day relief, no drugs have worked , my ESR hasnt been below 46 infact its usually in the 60's. Im due to start Rituximab on 18th July 2012 2nd dose 01st Aug (fingers crossed it works). I already have visible joint deformaties ( fingers).I'm just managing to keep working fulltime, I'm lucky I'm a civil servant ( work for DWP) & my employers have bent over backwards to help me cope, but it really is becoming difficult I'm constantly exhausted but dont sleep much coz of pain. I've just recently been diagnosed with shoulder impingement & I've been put on statins for high cholestoral (my diet really is perfect, must be drugs).On saturday I was trying to get out the bath, my ankles gave way & I fell, I havent been able to move since. Physio reckons I have whiplash ???? I'm just feeling so down at the minute, I needed to share my experience with people who hopefully will understand. I've applied for DLA & waiting for a decision but just know I'll be refused & I'll have to appeal I just hope I've got the energy to fight it !!! Any advice on pain management, DLA or emotions would be greatly appreciated !!!!!
forgot to say, my hip problem that got me a quick RA diagnosis actually turned out to be osteo arthritis !!!!!!!!!!!!!!!!!

Colin1

You never said your name so Hi the cat
I'm on Rituximab been on for a couple of years, its probably the best med i have had to date and i have had more than my fare share. I'm also in a flair but this years infusion has been delayed because i had a heart attack. I'm fine with the heart now but things are really difficult with the RA i havent been on here much my hands are so painfull. Well good luck to you anyway and as for coping with the pain we all find a way and somhow just cope, i think we just get used to it.
Take care
Colin

creakybones

Hello 'the cat' - I cannot comment on Rituximab sorry as Im not on anything like that yet. I cn really sympathise with the emotions bit and the exhaustion that comes with this illness. I have enteropathiic arthritis - linked to bowel disease. It came on on March of this year almost overnight when I began waking up as though I had fallen down stairs - aching all over. I have a full time job too in local authority but have been off sick since May. I struggled in the months leading upto going off sick and find it hard to accept I am still off. I dont sleep well and wake in severe pain whch tends to last all day. I saw my employers yesterday - they were ok but were asking questions i couldnt answer. I find the whole situation difficult and feel very down about everything - I feel my life is falling apart atm. My ESR is also in the 60's and im on steroids - they cant give me anything else atm as I have a big surgery to decide on ( long story) and some of these drugs hamper healing. I hope this drug works well for you and that you get some relief - also hope you are successful with your dla - keep in touch x

tillytop

Hello the cat - and welcome to the forum.

I can't reply properly now but just wanted to say that, in terms of Rituximab, there is an ongoing thread started by Karen which might be of interest to you. I have just posted on that one so it shoulld be fairly near the top of the page hopefully if you want to have a look.

Good luck with the infusions and really hope they do help you.

Thinking of you.

Tillyxxx

tjt6768

hi and welcome from me too..
Really hope that the meds help soon for you.

Only advice I can give is for the DLA, photocopy everything you send in and fill the forms in on your worst day.. Those people at the DWP can be dreadful :shock: Sorry, I'm just having you on.
Hope things go well

stickywicket

How's things today? I'm thinking of you.

thecat

Hi Colin,

Thanks for the info.
Thats awful for you, as if you haven't got enough on your plate with RA without having a heart attack !
I think you are dead right !!! Pain is just part of me now, but oh how I'd love to wake up from a lovely sleep & be pain free. People just take their health for granted, I know I did I never thought it would happen to me.
By the way my name is Elaine, I wasnt sure if everyone used their real names .
thanks for your support x

tjt6768

then welcome to the forum Elaine

thecat

Hi Stickywicket,

You know what I feel much happier having made contact with people who can understand what I'm going through.

I'm worried about Wednesday,but at the same time I cant wait.I'm just praying it works for me.My RA nurse doesnt think I'll get the full benefit of it coz I'm seronegative & it dont work quite so well, but like she says I havent ticked the boxes for seronegative RA (its supposed to be a milder version)so fingers crossed, and I'm still going to be on 10 methetrexate a week which may help.I'm trying to be positive .
Thank you so much for your help.

thecat

Hi Creakybones,
I havent got time to reply properley will be back on tomorrow.
I'm not sure I'm reply properly, can some one let me know if I'm doing it right !!!!!!!!!!!!!

stickywicket

You're doing it perfectly well, Elaine.

If you like we can arrange 'pocket duties' for Wed. That's where we all metaphorically jump in your pocket so you're not alone for scary appointments. I should warn you that some are noisy, others make a lot of crumbs and we have the odd garlic chomper but you're very welcome if it'll help.

tjt6768

I'm also a sero neg.. And I think meth is going to be my next drug. To be added to the sulfasalazine I'm on..
Who was it that said sero neg is a mild form :shock: By eck, if this is mild... Lol
I hope that the meth works wonders for you Elaine.

I'm ready to jump in your pocket too.. I will bring Ra, the supercat with me... He's no ordinary cat you know :?

thecat

Hi Tony,

I've actually been on meth for 14months now (max dose) and its done nothing for me, BUT my sister is also on it (7x2.5) and shes doing wonderful so who knows . Hope its fab for you !!!
ANd I'd love it if you could jump in my pocket x thanks

thecat

Thank you all you lovely people, I'd be honoured if you'd all jump in my pocket for my appt on wednesday..............

Sorry its took so long to get back to everyone, but I was rather out of sorts yesterday, I felt really lousy aching everywhere I could hardly move & tried to get up but went back to bed & slept till lunch time !!!

thecat

Hi Tillytop,

Thanks for the good wishes ,I've had a look at the thread you mentioned about the rituximab, quite helpful.

stickywicket

thecat wrote:

Sorry its took so long to get back to everyone, but I was rather out of sorts yesterday, I felt really lousy aching everywhere I could hardly move & tried to get up but went back to bed & slept till lunch time !!!

I don't think there's a person on the forum who won't understand that, Elaine. Rest is very important, especially when you're holding down a job.

I shall organise Wed pocket duties.

thecat

Hi Creakybones,
How awful for you x
Its hard admitting defeat & having to go off sick from work, but in your case it definitely sounds like you didnt have a choice.Your story sound a bit like mine, the way it came on sudden & ESR results etc. Life is a nitemare at the moment, but I'm sure in time the doctors will get us sorted or at least get the pain under control.
I know what you mean about employers asking questions you cant answer, mine do the same & its hard as we dont really know what is going to happen ,its very much trial & error as far as treatments go.
I hope you get sorted very soon & really wish you lots of luck & good wishes.

thecat

Stickwicket, you are wonderful, thank you so much x