After recommending anti TNF treatment my rheumatologist now says got to wait!

Hi

I hope you are all o.k.?

I am absolutely gutted! Although it was a big decision to go with her recommendation I really hoped it would give me my quality of life back again.

I am trying to keep working but this is so hard mainly because the fatigue wipes me out. It's impossible to make anyone understand how it makes me feel.

Best I can say is like having a really bad dose of flu everyday!!!

Now they have said not yet and want me to try more injections! Although the pain is bad I put up with that, it's the fatigue that I struggle with more than ever.

I have So many questions and don't know what to do next.

How do I carry on at work, how do I stay positive, is there anything else I can do to help myself?

She says she can appeal under special circumstances but doesn't know how long that will take. Does anyone else have any experience of this?

Work have been good letting me do less hours but this was because they saw an end to my inability to give 100% now who knows what they will say! Probably say if can't do the hours then I'm no good to them anymore. I am the main earner. Just don't know where to turn?

Sorry to moan but I am really struggling after having this news :'(

Lisa x

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  • Has she explained why? What are the injections you're having - steroids?

    I'm in Edinburgh and after a complicated set of events the rheumy accepted I should go back on anti-tnfs. I had to have tests to show I didn't have various horrible conditions like tuberculosis and when they came back clear, I had to wait a few weeks to go through the box ticking exercises to get the enbrel anti-tnf. I'm now on week 3 and waiting for it to have an effect.

    I hope the rheumy is supporting you, this doesnt sound good.

  • Hi Cathie

    Thanks for your reply, my rheumatologist says the changes to my sacriliac joints and sacrum are clearly visible on MRI but less so on normal xray and thus the panel say should wait until also see more on xray. The injection is a steroidal one. Have had four already into my back and buttocks but have had little relief from them.

    My frustration is yes I have ankolysing spondilitis but it's not just my back sacriliac joints that are the issue. I have real probs with my knees, hands, thumbs as well and it's the fatigue is the debilitating part. I have put up with the pain for a long while now and have learnt to cope with that.

    I thought she was really supportive especially cos she seemed to understand I've worked hard to get where I am job wise and it is a big thing for me not being up to going to work full time and giving 100% + because of all this and she appeared to want to do all she could to help me. Hence the suggestion for anti TNF.

    Seems that's not the case afterall!

    :-(

    Hope you get some relief and benefit from your anti tnf soon.

  • I can really feel for you about the job and RA. I got my PhD and RA in about the same year. The PhD ought to have secured me a plumb job but I couldn't apply for things away from my nearest town (which was Oxford and thus v competitive). SO I ended up doing nearly ten years of what we'd now call zero hours contracts I think - helped with the occasional research grant. Its very hard to have to set all this aside, but I'd reached retirement age and found new things to get excited about - with the cushion of a small pension. I've also had steroid injections which didn't do much!

  • I would go with the appeal route, definitely. We had to appeal for funding for my son to see a specialist outside of our area (for a different disease) but got it in the end so it was worth all the aggravation. You have nothing to lose as you haven't got the anti TNF anyway, and if you get it then you have everything to gain. Good luck. Clemmie

  • Hi Clemmie,

    Thanks for your advice. I did wonder whether there was any point in appealing thus that really helps. As you say nothing to lose but potentially alot to gain.

    The only other thing I can think of is the private route but I guess that will cost me a fortune and still need a consultant to recommend anti TNF.

    Frustrating isn't the word! If I didn't have a decent job I enjoy and could afford not to work full time then that would be my last option. But that's not a consideration at the moment. I'm only 40 so no where near retirement either! :-(

  • Even if you didn't have to work, you would still want to try it so that you had a better quality of life. We all deserve the best quality of life that we can get (health wise , that is). I'm sure that going the private route will be expensive but you could try to find out how much it would cost but as you say, you still need a doctor to recommend. Good luck with an appeal. I really hope that you get it, sooner rather than later. Clemmie

  • I don't quite understand what's happened and on the face of it, it does look as if the hospital you go to might just be trying to save money. I have psoriatic arthritis which is in the same 'family' of diseases as AS and I've always thought that rheumies prescribe anti-tnfs for AS quite readily. I've checked out the NICE guidance re criteria for prescribing biologics to AS patients:

    publications.nice.org.uk/ad...

    If you look up the two ways of assessing your condition - BASDAI & VAS - neither of them mention x-rays or damage. Maybe I'm missing something, but I think you need to do some research (I'm making the assumption that you don't know about the guidelines etc) and request another appointment with your rheumy to argue your case from a very informed position. Alternatively you could ask for a second opinion i.e. another doctor in another hospital (preferably someone with a particular interest in spondyloarthropathies) but that might take just as long or longer as appealing would. It's not just AS is it? And you're the main earner ..... none of this sounds right at all. I'm off now to check if there's a specific AS forum in the UK (do you know of one?)

  • Firstly, don't worry about 'moaning'. Surely that's one of the purposes of this forum.

    I am waiting to start Anti TNF treatment myself. I've ben told that I qualify, having been on three other DMARDS for nearly a year. My chest X-ray and TB test were fine and I know the DAS is high enough. But I don't know whether each hospital, or borough has a quota. Have they given a reason for the delay? Like you, one of the reasons I am desperate to start Anti TNF is that I am utterly exhausted the whole time and hear that Enbrel can help hugely with fatigue as well as pain. You have my empathy. Jo

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