Back in August when I wrote “One Year On”– a blog post marking the 12 months since my first hospital admission for (what we now know to be) CIDP, I mentioned a clinical trial I was possibly going on.
Back then, it was just a pie-in-the-sky “this maybe might happen at some point” kinda thing, but last week I finally got The Call from a research nurse, to let me know that they were now recruiting patients and to ask if I was still interested (the answer to that being a definite YES!)
See, the trial is to see if CIDP can be successfully treated with subcutaneous immunoglobulins (SCIG) at home, rather than intravenous immunoglobulins (IVIG) at hospital. The idea of being able to administer my own medication in my own home sounds so good that ever since my consultant mentioned the possibility last summer I’ve been dreaming of the day when it could be a reality. So when the research nurse asked if she could send me some more information about the trial itself, I was delighted.
Unfortunately, that was where my elation ended. As when the information itself arrived, my happy-feelings quickly went away. The trial itself is lengthly, in fact it’s really of an undetermined length as there are three phases and the first two are entirely dependant on you as a participant, or rather- your body/condition. The final stage being a set 3 months.
There’s a lot to it (obviously, as it’s a clinical trial!) but I’ll try breaking it down very simply. Basically first up, they need to be sure you are actually reliant on immunoglobulins as a form of treatment, so they take you off them (eeeeeeeeeeeeeeek!) and then when it turns out that you really do need it, they re-stabilise you, but rather than with your usual product/dose/infusion, it’s with the SCIG, and then, when you’re stabilised (however long that takes) they assign you to one of three groups, either low dose SCIG, high dose SCIG, or a placebo (eeeeeeeeeeeek!) and then after three months it’s game over and you’re back on your usual IVIG in the hospital.
Now some of that, I already knew. My consultant had pre-warned me that they would need to be certain the participants actually NEEDED the immunoglobulins, so I figured there’d be a period where I’d be required to go without, and I also knew that I’d need to have some of my investigations repeated, like the electric shock torture, I mean, err…Nerve Conduction Testing…so some of it wasn’t a surprise, but a lot of it was, and not in a good way. There was a lot to read through, and it laid it all out bare how many extra hospital visits it would require and how much upheaval and disruption it would potentially cause, and by the end of my first read through I was already thinking:
I feel so guilty in a way as I think it’s a fantastic study, and the results could have amazing implications for the future treatment of others with my condition, but I just can’t justify turning my life (and the lives of Chris, and the boys, and potentially a foster child!) upside down to take part in something with so much uncertainty when it’s going to have such a big impact.
So I went to see my neuro specialist nurse yesterday as I had a routine review appointment with her anyway, and the research nurse was with her, and I was just very honest with both of them about how despite my initial enthusiasm, I’d changed my mind, and they were both very understanding and generally lovely and made sure I knew that I was under absolutely no pressure whatsoever to take part.
My actual review went well- my scores are higher than they were in the summer, which is apparently unusual as generally us CIDP sufferers are worse in the winter (I do find I have more nerve pain and tremors, at the minute but I’m nowhere near as lethargic as I was in the hot weather, so…?) and then the topic turned to my treatment and what to do moving forward. I still get a dip at the end of each month, it’s not as bad as it used to be, but there are still those last few days before my next infusion where I’m a bit shaky, a bit weak, generally lethargic, and well…a bit naff all round. So the question was- can my dose be increased? The answer being yeeees, but a tentative yes, because I’m already on 80g of privigen, so the next logical step would be 90g or even 100g, but those kinds of doses can’t be given over one day, so I’d be back to where I was at the start of last year when I had to spend two consecutive days each month at the hospital (not ideal, obviously).
In the end, my lovely specialist nurse called in my equally lovely consultant who’s answer was: “SCIG”
Which, I’ve got to say, confused us all, as the three of us all assumed he was talking about the trial.
“No, I mean, just SCIG” he said.
Turns out, aside from the trial, a small number of patients are being started on SCIG at home already, as the small amount of research there is (mainly from other countries at this stage) is showing- it works, and is better for everyone involved. So he wanted to know- did I still fancy it? Without all the hoops of the trial to jump through, just- get trained up, and get going with it, doing it myself at home? Errr….YES!!!!!!!!!!!!!!!
So that’s what’s going to happen. I don’t know when yet, but I do know it will likely be quite soon, which is super exciting.
I know I’ve said this before, both here on the blog, and over on facebook, and probably on twitter, and definitely in real life too, but I’ve got to say it again: I really am SO lucky, to have been diagnosed so quickly, to have found a treatment that works so well for me, and to have such a fantastic team of professionals taking care of me. It’s days like yesterday that really hammer that home for me- I go into an appointment feeling anxious, and come out feeling reassured and really positive about the future.
(That’s me having my infusion 2 weeks ago, it was about 3 hours late due to the ward being busy- something that won’t be a problem when I’m doing it myself- yay!!)