I am not sure I will be able to summarise all of this, nor whether anyone actually can answer my questions…
As I recently posted I am back in the gap after failing three DMARDS. Basically I am waiting to get enough evidence to be approved for biologics which has a high criteria in Aust.
All of a sudden I get this letter this week saying I have been referred to the Biologics Clinic at my local hospital and have an appointment next week. Trying to find out how I got there, rheumy hasn’t returned emails or phone calls…
To be honest, it has thrown me and got me questioning…
While I endeavour to find out from hospital etc. what it is all about…I wondered if anyone, especially in Aust. health system, can tell me what they know about Biologics Clinics? I am not sure if the clinic assesses eligibility or manages you after you have been approved??? I will feel so disheartened if I waste my time and have to experience the vulnerability that comes from the whole medical appointment process if it is for nothing. I was already struggling before this happened.
Having written this I suspect it’s a question that might not be answerable…thanks anyway
Once my rheumy decided I needed to be on Humira I saw a Biologics Nurse and I think the hut she checked my joints in was called the Biologics Unit and it was all good. But I hadn’t had the run around you’ve had and I knew exactly what was happening.
I can see why you’re apprehensive but I can’t help thinking this has got to be positive. Oh I do hope so. Australian members who know what goes on in these places, we need you!
Just an update…I went to the clinic and it is part of the public health system here. Apparently my rheumy referred me 8 months ago, when he realised I was on the path to Biologics, but he forgot to tell me.
Anyway turns out the expertise on applying rests with the nurse practitioner in the clinic who obviously knows everything there is to know about what needs to be included to get applications approved. So grateful of her knowledge and my rheumy’s willingness to listen to her. Apparently in Aust. a rejected application can set you back longer than holding back from applying until the evidence is stronger. The good news here is when they do lodge my application it is likely to succeed. But sadly the bad news is I remain in the gap…while the DMARDs helped they made me too sick, steriods offer some relief but not enough and anti-inflammatory meds arent enough either. It’s going to be hard over the next 6 months or so. We have put together a solid plan but it will take time to tick the boxes. I am optimistic about the long term but concerned about the next year. I remain lucky as no significant joint damage so there is still time…I remind myself of this everyday. However my enthesitis and joint involvement is at an all time high. Thanks all for the support
Soooo … what actually happens next … is it about waiting for a few more swollen joints or something? And then presumably firing off an application straight away?
The plan part and having this nurse practitioner in charge sounds really positive. But what’s in these boxes that need ticking? Sorry to interrogate you, just trying to get my head around what’s going to happen in those next 6 months or so. Eager to start the long-distance celebration!
But well done MacMac, you’re a trooper and no mistake!
That’s good news Mac. I’m curious to know what will happen too. Is it to do with blood markers? I know I’m sweating on my next blood tests.
I’ve got the requisite swollen joints and will have done the 6 months Dmards time, but my inflammatory markers were going down still even though I felt worse and in more pain. CRP was normal!
Thanks Sybil and Koala, it is not much of a plan but basically they seem to think once it is established by the PBS ( pharmaceutical benefits scheme) that I have been on 4 months of mtx again I will be in a strong position to apply. However I need to also get my inflammatory blood markers up if possible. I have adapted Becstar’s approach and will spend some time off meds over the next few months to have regular bloods. They have also prescribed different and stronger NSAID, and steriods as required. I also have to have some more xrays and a brain scan and neck mri to rule out MS (not concerned about this as I dont think I have MS) and I have to continue to monitor joints, fatigue etc. Hopefully the bloods will show something but if not they explained that the steriods could mask inflammatory markers…so given my toxicity to other drugs if the condition continues to be at this level, they will apply. It’s going to be an up and down time for me until my appointment at the end of April. Honestly I don’t even want to think of them changing their mind. …I have to work on the belief that they won’t and see what comes. Truthfully there is no other option. I just finished 3 weeks off drugs. 1st blood test yesterday…Started meds again today and looking forward to them kicking in. Question…how long do NSAIDs stay in your system?
I’ve heard that you should stop them 3 days prior to blood tests if you are concerned they may mask your inflammatory levels. Not sure how true this is.
It all sounds reasonable MacMac. Let’s hope the numbers are up and the time goes by quickly. And of course you manage without too much pain
You need to speak to member Becstar, one of our coolest members down under. She has had some very interesting experiences on the road to getting a biologic, and I’m sure she can share some practical tips and strategies with you.
