sero negative about to have rituximab

thecat
thecat Member Posts: 22
edited 12. Jul 2012, 16:05 in Say Hello Archive
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 !!!!!

Comments

  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    It must have all come as a terrible shock, thecat, and I’m so sorry that the meds don’t seem to be helping. It is very much horses for courses with them but you seem to be exceptionally unfortunate and I do hope the rituximab helps. There are others on here who take it – in fact Tillytop just had hers this week. I’ve no experience of it so I can’t tell you if it raises cholesterol. (Tilly would probably know.)

    You are doing extremely well to keep on working throughout. OK you say your employers are very good but it must still be take enormous effort on your part. Maybe, just maybe it might be worth seeing if you could go part time. Exhaustion is part and parcel of RA and we all have to tread a very fine line between ‘not giving in’ and allowing our bodies the rest they need.

    I can’t advise on DLA as I’ve had it for years. There are plenty on here going through some tough times with it and I’m sure they’ll be happy to share their experiences with you. Have you seen an Occupational Therapist with a view to getting some help in the home – grab rails, a bath lift or even just a board, raised loo seat? I’m sorry, I’m sure these things were far from your thoughts until recently but they do help – and they make things safer.

    You could ask your GP to refer you to a pain management clinic. People on here speak highly of them. I presume you’re taking some pain relief meds.

    As a way of helping others to understand your fatigue, you could google The Spoon Theory. It’s very simple but effective.

    I suggest you copy your thread to the Living With Arthritis forum as many more people look on there and I’m sure they’ll be happy to help. Take care.
  • thecat
    thecat Member Posts: 22
    edited 30. Nov -1, 00:00
    Thanks for the speedy reply Stickywicket, you'll have to bear with me I'm not too good with these forums, just trying to figure out how to post & reply.Im going to take your advice & repost where you said (hopefully).

    I am on pain meds ,tramadol & paracetamol & codeine phosphate - though just for bedtime ( i've also got stomach ulcers so limited to what I can take).Thanks for the idea of pain management ,I'll certainly look into it.

    I do have an occupational therapist though I've only seen her once,when first diagnosed.I really hate the thoughts of having these aids, I feel like I'm giving into RA & terrifed that I'll be treat differently by people. I hope you understand what I mean.
    I honestly dont think I can continue to work fulltime much longer, but unfortunately I'm on my own & cant afford to drop my hours, thats why I'm praying I could get DLA.
    Forgot to mention that my hip problem at the start of my illness actually turned out to be osteo arthritis, funny how it got me a quick diagnosis !!!
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    Just copy and paste it as you would with anything else. It's the Living With Arthritis forum that you want.

    I understand perfectly about the 'aids and adaptions'. We all go through feeling as you do and it can be an ongoing thing as more bits of us drop off :roll: But it's much harder for you because it's all happened so quickly.

    With all those pain meds and a dodgy stomach, I hope you're also taking lansoprazole or omeprazole to protect your stomach. And always take the meds with food, even a plain biscuit rather than nothing.

    You've certainly got a lot to put up with but I'm sure the good folk on here will help.

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