Friday, 15 May 2015

down the rabbit hole

So it's probably two weeks or so since me and Mrs. D went to see the lovely MS Nurse Team at the Queen's Medical Centre in Nottingham.

While we were waiting outside we read through a booklet which was about the type of treatments which are available on the NHS - worryingly they were all injection-based, so all just variations on a theme.

Like I mentioned before, the reason for seeing them was because I'd been noticing that the side-effects of my Rebif injections were getting more and more debilitating - plus they seemed to be lasting forever.

With injections on Monday, Wednesday, Thursday, I would be good on Sunday if I was very lucky.

But in my annual meeting with the Neurologist last March, we talked all this through and he said that Rebif was still a first-line treatment.

When we got in, we explained all this to the MS Nurse, who said that the booklet we were looking at was really out of date - they don't tend to prescribe many injection-based treatments, preferring to get people started on oral therapies (the first choice of many patients too, I'm sure!).

She also mentioned the fact that people on some beta interferon injections can sometimes start to produce neutralising antibodies - so reduce the effectiveness of these drugs. So this might be a reason why my side-effects were getting more intense.

This particular nurse (Maxine) always seems to have a tote bag with her which is full of booklets for different therapies, and she did not disappoint this time - see the image on this previous post.

(The MS Trust booklet is particularly good)

We talked the options through, explained our concerns and my side-effects, and were particularly interested in Tecfidera (dimethyl fumarate), which has been shown to reduce replaces by up to FIFTY PERCENT - beating the "by about a third" which gets bandied about for the more old-skool injection therapies. I've since confirmed with the MS team that this is where I want to go, so the wheels are now in motion.

The other thing we talked about was my ongoing problems walking and the drug Fampyra (called Ampyra in the US), which we mentioned as an outside possibility - Maxine is a real force of nature and said that she didn't see why I couldn't go on this too.

By this point we were both in tears - the last few months have been really hard and not-a-little worrying for us but now we were in a position to make some changes for the better. Normally I would have just waited for my until my annual Neuro appointment (which is in July)!

Maxine vowed to talk the Neuro I'll be seeing, and to arrange another MRI for me - I haven't had one since the MRI which led to my initial diagnosis and we need to check my lesions, especially because I've recently been experiencing a bit of new-ish Neuropathic Pain (mostly intense burning beneath the skin).

When I said that I found my previous MRI experience traumatic (to say the least), she admitted that she did too and suggested that I get sedated for my next one (date TBC).

So a really positive experience - and now I wait to hear from them about when I can (hopefully) get off Rebif.

GOD SAVE THE NHS - in light of the recent election, I've just written to my new MP from the http://www.treatmerightms.org.uk/ website.

3 comments:

Honeysuckle said...

Sounds very promising. Hope all goes well.

stevedomino said...

Thanks Honeysuckle - fingers crossed!

swisslet said...

Maxine is an absolute gem. She's the one that gave me a letter to take with me to Australia and show the doctor doing my dive medical in Cairns. It was her positivity in the letter that made all the difference in getting me passed. I sent her a postcard from the Great Barrier Reef to thank her, and she's never forgotten (even though this was 5 years ago now). She stopped me last time I was at clinic, even though she was only passing through and insisted on a proper chat. She's a treasure.
Anyway. I'm on Avonex. Intra-muscular injections with the big needles. I would be very happy to move to an oral therapy, but I'm stuck by the simple facts that:
a) my MS doesn't seem to be progressing much (if at all)
b) I tolerate it well

I can quite understand the "why change?" attitude, but who wants to stick themselves in the leg with massive bloody needles if they have another choice? (I'm not about to force the issue though, as honestly...why change?)

Great to hear that someone is listening to you and that things are moving forwards. She's a treasure!

T