If you begin regular Tysabri infusions you'll get a load of bumf with handy tips to help you have a happy infusion. These include relaxing, drinking lots of fluids and eating snacks. Standard.
Here are a couple they missed, based on my experiences.
1 - Alcohol gel, alcohol gel, alcohol gel
For some reason, it took until my fourth infusion in December for the nurses to tell me that the pain of removing the cannula, related surgical tape and arm hair can be completely avoided if the affected area is totally slathered in alcohol gel, of which they have fecking loads.
FYI: on a chart measuring levels-of-hirsutitude I would be somewhere between an ape and a regular adult human male. I'm not so hairy (or hairless) that people might remark on it. Although Little Miss D will sometimes sit and stroke my arm as if it's a pet dog.
Previous to discovering this modern wonder I had reacted to the discomfort with levels of leg-kicking and whispered obscenities which had been frankly embarrassing for all involved. Now, there are no problems.
Alcohol gel. Ask for it by name. This blog is nothing if not a public service source of useful information. You're more than welcome.
2 - Speed up your saline washout
The Tysabri infusion takes around an hour, followed by an intravenous saline washout which also takes around an hour.
(It should be noted that, when first starting this treatment, you can also be asked to hang about for around a further hour to be monitored for adverse reactions. So all in, three hours)
After a couple of months I'd been able to shave a bit off this - having no adverse reactions to observe and by asking for the washout to be sped up. This has now got to the point where yesterday, when I asked the nurse if she could get it to go a bit quicker, she said, "Six minutes?" I could have kissed her.
I know the nurses wouldn't do this if there was any danger to patients and I'm lucky to be getting on with Tysabri so far. Also, the ward is packed every month and they do need to get people treated and out of chairs as soon as possible.
Maybe they just think I'm an annoying sod and just want rid of me? No worries. I'm out of there!
3 - Make sure your headphones are plugged in
Self-explanatory really. When I was getting set up for my infusion, I put in my headphones and started up the music on my phone. Thought it sounded weird and tinny so I cranked it up. Then realised nothing was plugged in. Yes, I was THAT GUY who is confused by technology.
--
As part of the monitoring of Tysabri patients, alongside regular blood tests we need to bring urine samples to each infusion. I always take mine with me but two women in the clinic yesterday had been unable to get one in their own homes and were chugging back coffee and water to achieve the desired result. And they were still struggling to provide it.
The nurses aren't able to proceed with the treatment until they've been able to check patients' urine so it was getting a big fraught (although as you can tell we were all able to discuss this between us all quite merrily and shamelessly).
Both were able to eventually start their treatment but one of them - in a horribly predictable manner - then had to go to the toilet three times in quick succession after being plugged in for her infusion.
If it hadn't been incredibly inappropriate (and very much none of my business) I'd have been tempted to talk to her about my experiences of self-catheterisation. I've been doing it for over a year now and - although it's no-one's idea of a good time (if you disagree, please don't comment. No judgement, each to their own, I just don't need to know) - it is amazing how much more freedom I have in leaving the house. Maybe not at exactly the time that I need to, admittedly, but very much in the correct general ballpark and with considerably less disruption.
For goodness sake, as well making it through my appointment uninterrupted, I even watched the whole of The Last Jedi without going to the toilet once. And that film is LONG and *whispers* a bit dull...
This was the biggest hit from my last infusion (with apologies for the headphone mix up!)
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my bladder has always been on the weaker side of normal, and is now becoming frustratingly unpredictable. I've taken to trying to limit fluid intake after 20:30 and things like that, in a bid to minimise bathroom trips. I'm pleased to report that I made it through the Last Jedi uninterrupted too. Good times.
ReplyDeleteSidebar: I've been on Avonex now for 8 years. I tolerate it pretty well and haven't relapsed, so it's never seemed sensible to change. The last few years, I've been very prone to chest infections that last for months - which I've belatedly realised are likely the result of these injections suppressing my immune system. This year too, I've been locked in a cycle of a weird swelling in my tongue and throat that flares up after I inject, I fight off over the course of the rest of the week, and then inject again and start the cycle again. My GPs are baffled and have tried antibiotics and antifungals to no great success. Frustratingly, the MS nurses -- usually great -- gave me a big fat shrug, told me to get a bloodtest and to give it time to settle (it's been happening since late September, so I'm not really sure how much longer they want to give it). For the first time since diagnosis and starting on my DMD therapy, the notion that I night need to change therapy is becoming very real for me. Of course, my appointment with the consultant is always in late summer, when I never have any of these symptoms....
Good to hear that you're keeping well.
T
Hey Mr T
ReplyDeleteSorry the MS Nurses haven’t been much help. Have you thought about the kind of different therapy you might be interested in? Like you say, you broadly tolerate it. But don’t most of them dampen down the immune system in some way? It’s a minefield - and a crap shoot. Hope you can find something that works for you, but if you want to change DMT you shouldn’t have to wait ‘til Summer.
The Last Jedi might well have passed the bladder test but did you think it was any good?!
Can we see this so-called chart measuring levels-of-hirsutitude? I think people might indeed remark on the ape-like appearance of your arms.
ReplyDelete“Ape-like appearance”? And to think I was worried about you...
Delete(Good to have you back, exclusive to this blog!)
Came out of retirement just to make fun of you. :)
ReplyDelete