About 10 days ago I realised I could just squeeze in a suspended clexane trial. I figured I was stable on 7.5mg prednisolone/day (wrong – but I didn’t know that at the time!), that I certainly wasn’t going to be having my planned tooth implant any time soon, or any other invasive procedures, so I could try the clexane for a couple of weeks at least and see if it made any difference.
Well, I do think it makes a difference. I’m less foggy, less ‘handbag in the fridge’ syndrome, better memory, better typing, better balance, greater clarity, better with words, both written and oral, etc. Not perfect but better – perhaps 30-40%, maybe even 50% at a push. And this is at 4,000IU/day whereas I think the regular dosage would be 10,000IU/day, so I should reasonably expect perhaps an 80-90% improvement at that level. Therefore improving to ‘only’ normal senile mental functioning levels!!
However, I just can’t deal with the bruising. It’s unsightly, ugly, ugh. Not acceptable. Totally non-negotiable. And this is even if I take great care to inject very slowly, taking at least 5 minutes with each jab, icing the area before and afterwards. Nope – still bruises. My belly is starting look like a pin-cushion. This morning, on suggestion, I tried the fleshy area at the top of my right thigh. Even worse! A huge blue bruise was forming even before I’d finished the injection – aaarrrrgggh. This won’t do.
But what are the alternatives? Warfarin is the obvious one. On some levels I’m OK with that but it has annoying restrictions: diet, weekly (initially) INR blood tests, having to take the drug at the same time each day, etc. I was OK with this, once established on the drug, when I first took it after my first PE (pulmonary embolism) in 1989 but had trouble with it when I tried it again 3 or 4 years back. I kept bleeding all over the place – gushing nosebleeds, bleeding gums when I brushed my teeth, massive easy bruising, etc. – even while the surgery was gleefully insisting that I should up my level of warfarin because I hadn’t reached the stipulated INR level. In the end, in desperation, I called the London Lupus Centre and spoke to Professor Hughes himself, and he told me to stop it.
Maybe the problem now is that I also take vit E and EPA, both of which help thin blood, whereas I almost certainly wasn’t taking them back in 1989. But I don’t want to stop taking them – they have enormous benefits in themselves. Perhaps I could persuade the powers-that-be to set a lower INR for me to achieve adequate anti-coagulation – more like 1.5 than the 3.0-4.0 usually set for APS patients.
At present, I’m also taking 2x75mg aspirin/day and was advised by my consultant to stay at that level while trialling clexane. Which makes sense as otherwise we wouldn’t be able to tell what was inducing any changes. However, I think that makes me bleed too much, so I’ve cut out the aspirin while I continue with the clexane for a few more days and I’ll see if that makes any difference. I certainy wouldn’t be taking aspirin as well as the clexane, if that was prescribed long-term.
But I don’t think clexane is going to work for me. Some people on the forums clearly think I’m being silly, that a few bruises are a small price to pay for feeling better, but these things are all very personal and, for me, the price is just too high.
I asked Professor Khamashta, my rheumy, if there was some other way to test whether higher anti-coagulation would be beneficial, rather than clexane. He suggested upping my aspirin to 4/day, i.e. 300mg in total. However, this provoked a forum controversy because some people had been told by their consultants that aspirin only affects platelets up to 150mg/day and that doses above that level would have no benefit. Yet here was Prof K, also a leading expert in the field, telling me to increase to 300mg. Uh? I wouldn’t want to use that level of aspirin long-term because of stomach damage but could do so for a month or so to test the effects.
There is also Plavix (clopidogrel) but I think I tried that before and couldn’t get on with it, though I can’t now remember why!
It’s a challenge. To put it mildly. I’m really thoroughly fed up, truth be told, with all these health issues this year. Takes up so much time, energy and, frequently, money. I have to hope the Brompton appointment next month starts a fruitful process of at least establishing exactly what’s been going on with my lungs, what the state of play with them is now, and what to do about it. I’m sure that it’s only when that issue is resolved that I’ll be able to make any progress on a broader scale. And then, hopefully, return to plodding along in a fairly stable state.