A bombshell!

So – the news is out on the BYM338 trial doses. There is no easy way to say this. I was on the Placebo. I never had a single drop of the drug. Ever. And yet – I thought I was having something, I thought I was doing quite well, I thought I was getting stronger. What does this mean for people with IBM? I learnt this shocking piece of information a couple of weeks ago, and it has taken me a while to process it, but I think now I’m ready to put together sentences without swear words and make some sense of it all.

I wasn’t expecting this, it caught me off-guard. One of the other trial patients at the London hospital mentioned that he’d been told his dose. Initially I wasn’t going to ask what I’d been on because basically I thought I knew, but after a week or so curiosity got the better of me and I emailed the doctor who’d been in charge. His reply came back within minutes. Now, don’t get me wrong, I knew when I signed up for the trial that there was roughly a 1 in 4 chance that I would be in the Placebo group, but my first reaction was anger that they had put me through all that for, effectively, nothing. So I let that feeling sit for a little while before I was able to reflect that actually it hadn’t been for nothing. I did get stronger, which of course I wouldn’t have if it hadn’t been for the trial. But if it wasn’t the drug that did it – what was it?

The answer to that was another bombshell really. It had to be the exercises, perhaps coupled with the extra protein we were encouraged to incorporate into our diets. And if that was the case, I could have carried on with the exercises, kept up the higher protein intake, and I didn’t need to have lost all the strength I’d gained plus more besides.

I didn’t need to have lost strength. I could have carried on exercising. I could have carried on eating properly. I could have carried on getting stronger.

Yes, I know I repeated myself there, but that was the thought that went round and round in my head for days. And I wasn’t angry with the drug trial process any more, I was angry with myself.

The trial ended very suddenly, and now I have looked at the published trial results it seems likely that there were concerns about the heart health of some of the patients, particularly among those on the highest dose. Of course we didn’t know why it had been stopped, it just seemed very spiteful for Novartis to cut off our only lifeline without explanation. And obviously the exercises had been hard work, and it looked like it had all been for nothing, so I chucked the exercise sheet away along with all the other trial paperwork and never bothered doing any again. Without having to report my eating habits to the trial doctor every month, I forgot all about the need to eat protein and basically ate what I liked. Not bad food, I’m not a junk foodie or a chocolate freak or anything like that, but I just went back to not thinking about what I was eating.

After a while I started doing some gentle yoga in the chair, and it was lovely for relaxation and keeping the joints mobile, but it wasn’t designed with IBM patients in mind, as the trial exercises had been. There was no great benefit for the effort involved, so that fizzled out too. I sat in my chair, and got very good at sitting in my chair, but nothing else improved through my inactivity.

But now, armed with the new information that I’d never had any drug to help me gain strength – and yet I still did – there is only one conclusion. It IS worth doing the exercises, 2 or 3 times a week, even if they hurt, even if they take time and effort, and it IS worth paying careful attention to what you eat because you are what you eat and who amongst us wants to look like a Marks & Spencer fresh cream meringue?

I feel like I’m a little bit ahead of the game here because as you know I started following the Plant Paradox diet last November and I’m more than 2 stone lighter (30 pounds to be precise) and I’ve been doing very gentle arm and shoulder exercises to see if they respond at all – and yes, they do. I have a stronger grip and can unclip our dog’s harness easily, take lids off things, reach light switches again……nothing dramatic, but I think it proves the concept that exercise does help with IBM. And this follows the latest thinking of the leading IBM doctors, who tell us to exercise every day. With this in mind I’m going to start doing the exercises again 2 or 3 times a week and see how far I can go with this combination of diet and exercise.

I covered the principle of Plant Paradox and similar diets designed specifically for patients with auto immune diseases in my last blog post but basically it is this: the immune system is controlled by the health of the gut. Auto immune diseases are fundamentally an acquired food allergy that wouldn’t happen if we had perfectly healthy digestive systems, but modern life causes all manner of damage to our gut, particularly the protective lining that is designed to stop tiny food particles escaping into our bodies and causing inflammation. We are all different and have different sensitivities and reactions to foods, but if we can eliminate the stuff that is causing our immune system to over-react, the auto immune response will stop. Sounds simple and it is, but the downside is that it’s going to be the foods we love best and eat most of that are causing the damage, and we have to eliminate everything suspect for a considerable amount of time – it can take more than a year to heal the gut and calm the immune system. It’s not for the faint hearted but it’s an active choice – do it and you might get better, or don’t do it and you will undoubtedly stay the same.

My experience on the drug trial proves to me that exercise helps, and not exercising only makes me weaker. My experience on the Plant Paradox diet proves to me that I feel a million times better when I don’t eat grains, sugar, nightshades, legumes…. well everything nice basically. Is it calming my immune system? I don’t know, I’ve had a cold, the first one I’ve caught in years, and I’m recovering from a tummy bug – again, the first I’ve had in living memory. But what if it did? What if my body stopped attacking my muscles, and what if exercise could make them stronger again? What if I didn’t even try?

Anyway, if you were on the trial and they haven’t told you yet what dose you had, that information is available to you if you want it. I hope yours doesn’t come as such a shock to you as mine did to me

As an afterthought – do any of the other trial participants still have their exercise sheets and would be able to let me have a copy please?