Having a bad day :-(

Has anybody had an infusion ?

I've got a hospital appoint next week and I'm thinking of pushing for this .im desperate to get my life back.ive been off work since March and the way things are ATM I'm not fit to return anytime soon .

I've been taking Simponi (injectable biologic ) but I'm getting little relief .

I even took it 5 days early this month as I was in so much pain hoping for some relief .Its help abit but it seems to wear off around the 2 week mark and I'm left with terribly sore wrists ,hands , shoulders and last week it's even ventured to my feet .i was counting the days for my next injection .

I was first diagnosed 2 years ago and it seems to be taking over my life .i am RA .My logical brain tells me no and it's just a part of me but it's so difficult when I can't even pick up a cup of tea without using two hands , can't drive (going to have to get an automatic ) and can't do my job

.My employers won't offer me temporary alternative duties . I have to be fit to fly or nothing .So I'm sat at home feeling more disengaged from my work life than ever .what's worse is that after 6 months I won't be getting a wage .I haven't got a husband / partner to share the load with so financially I'm screwed .The reality is I may have to sell my house .This is a real game changer for me and I'm soooo angry about it .

I just want to feel normal again !!!

Friends don't really understand and I can't be bothered explaining its an auto immune disease and not just aches and bloody pains !! Grrrrr

Sorry for the rant .....back to my original question ....infusion has anybody had them ? And how long do they take to work ? Pls tell me quickly :-)

14 Replies

  • Oh so sorry! Its a ******* drag! Can you not get benefits of any kind? Not heard of that drug. I just started a bio drug which was infused and it can take up to 3 months to kick in so I am in constant pain despite the other usual drugs. I wonder where you are cos I know you need insurance cover in US. Or are you in UK?

  • Thanks for your reply ....I'm in the uk . It's just so frustrating all this trying out new drugs .im going to have to look into some benifits altjough I have resisted so fat

    Feeling better after my rant :-)

  • There are other self injects that may be offered instead - it depends on the protocol of your hospital and whether their infusion department is busy. The time to work of infusions is similar to self-inject although some are given with steroids which can give you a boost. May be worth a look at the drug section on the NRAS website. I have had Rituximab which did nothing for me (I am sero-negative and many do say it works best for sero-positive) and Tociluzimab which knocked my white cells too much. Also if in the UK research PIP benefit - it does not matter if you work it is how the disease affects you that is the criteria. Farm

  • Thanks for that will definitely look into it . I was even considering a blue badge but to be honest I can't bear the thought of being assessed .

    I never thought I would ever seriously be looking into doing that and in a way it's my way of thinking that it's finally getting me and I don't want to go down that road :-(

    Onwards and upwards as they say

  • I know that feeling although I have had RD for years it was only a couple of years ago that I applied for PIP and a blue badge and like you say it is horrible being assessed and feels like giving in to it but needs must. Farm

  • Im not sure what help is available for home owners as opposed to tenants who can claim housing benefit you need advice from CAB so pick up the phone at 9am and get an appoi tment sorted. PIP which used to be DLA is in 2 components, 1 for care and 1 for mobility and neither are affected by property, pensions, or income etc, ie they are not means tested in anyway, to apply for PIP it is initially a short telephone call to give a few details after which they will send you a form, it is very long and detailed but has guidance notes, however i would also suggest that as a minimum you look on the net for advice on completing it, on receipt of the form they may or may not require a face to face assessment (99% do). The assessment can take an hour and again is detailed but having now had 3, (1 for DLA, 1 for ESA and 1 for PIP), i can tell you they are not that bad an experience but more advice as and when you reach that stage. PIP is payable up to i think 3 months before you claim and ALL back payments from when you claim until you recieve an award ie if it takes 12 months (and it certainly can) you will get 12 months retrospective award and possibly up to 15 months award total. Please dont be put off by the process, it is tedious and prolonged but its a set process that you have to endure while it lasts, most of it will be slent waiting and more waiting.

    If i can help with any other specific points of the process i will happily share my experience but it will only be MY experience and should be given no more weight than anyone elses, but i am brutally honest and direct but if you feel i may be able to help then please ask and keep asking as many questions here as you feel you need to, you will always get advice and support on the forum and i know it helped me to get through it.

    Best wishes . Leon.

  • Leon thank you so much it all seems so daunting , however Monday morning I have a list of things to do :-)

  • Longest journey starts with one step, unfortunately they dictate the process you have to go through. Due to the amount that have played the system in the past the genuine claimants now have a hard time getting what they are due. I cant agree that the majority should suffer because of the minority but if you read between the lines on many sites on the web they are not giving advice on how to claim they are giving advice on how to try and beat the system, the very suggestion that someone should behave in a certain way when approaching or in an assessment centre is suggestion to me that a claim is in the least being "manipulated". They could follow me (and they have) for as long as they wish and they wont see any different behaviour because i cant be any different, i do wish i could because i wouldnt be claiming in the first place if i had a choice and im sure most people wouldnt. But unfotunately there are people like a gentleman near me who had his motability car taken away, he told them he would appeal, he was told that was his right and asked would he be getting someone else to cover his PAPER ROUND on the appeal day or should they make the hearing in the afternoon?. That is unfortunately why we now have to go through the process that we do, i got turned down twice for DLA and eventually won at tribunal. It is hard but that is no reason not to carry on.

  • Hi, I was considered for an infusion but when I went for the pre-assesment to check if I was a suitable candidate, my DAS didn't score high enough on the chart so the offer was withdrawn. This didn't seem very fair at the time as my RA flare had been bad but fluctuates daily and was possibly not very active on the day I was seen. I was told that different drugs availability depends on where you live and biologics are so expensive you have to tick this DAS score box.

    I just thought this might be interesting as you can't chose which day you're at your worst when you go to get checked!

    PS. I completely understand the friends not understanding bit...just because you look OK outside, they have no idea what's going on inside our bodies!

  • It's so frustrating you are right ...never know how you are going to feel .hospital Wednesday so fingers crossed

  • i had infusions of rituxmab which did nothing for me maybe because I am sero negative, also tocilizumab which also it worked it left me very tired for a few days after. Now I take tocilizumab by injection and my white cell count is much better and no swollen joints at all, I still get very tired but that could be due to Sorjens. So I don't think it makes a difference how you receive a drug as long as it works for you.

  • I don't care what I take aslong as it works

  • I had infusions for 14 years and really felt great and was able to do a lot but instead of quoting things you can't do try changing how you do them it dose work and as long as you can do it dose it matter how , do some grip exercises with a softish ball it will help with your hands , hope this helps you get back to work soon .

  • Thanks for that ...will give it a go

You may also like...