Takayasu Update

[Rabbit090]

Hi all. Thought I’d update after my first infusion of cyclophosphamide to treat my Large Vessel Vasculitis (being referred to as Takayasu’s Arteritis as it involves my upper and entirety of my aortic branches, I guess).

I was over-researching, as I do, and asked my consultant if we could reconsider cyclophosphamide due to the rather terrifying risks associated with it. We had a long phone conversation and he explained how much lower a dose I would be getting than the standard cancer treatments and gave me actual numbers and percentages. I think he knows now that I am slightly insufferable and want every small detail and he seems happy to go into it and is very good at not patronising me!

The infusion process was long - 6 hours - but most of that was waiting for blood tests, waiting for the pharmacy to dispense, and 2 hours of a saline drip. Only 30 minutes for the actual meds.

I’d been on Pred for 3 weeks after 3 days of methyl prednisolone IV, tapering from 60 to 40 to 30 and feeling some backsliding (weakness in my left arm getting worse) but blood work came back with CRP in the normal range - not 0 but good - and all other blood work improving. Still a tiny bit of inflammatory anaemia but hopeful that will resolve quickly. Doc said to go back up to 40 Pred.

After the infusion I felt fine - no nausea - although I suspect I over-hydrated. My eyes got puffy and then I struggled to pee and my weight shot up 4 pounds overnight. Next day I was a bit tired and decided to be a slug and sleep all day at which point the water all started to go - so many trips to the loo!

Five more infusions to go and we’ll see where we are but I’m quietly confident. My usual “expect the worst; be pleasantly surprised” seems to work for me even if it does cause some intense navel gazing.

[DorsetLady PMRGCAuk volunteer]

Thanks for update - hopefully future appointments Will be shorter in duration - long day otherwise.

Fingers crossed.

[Rabbit090 in reply to DorsetLady]

I think it’s SOP for the infusions but I was prepared with my own snacks and lunch and plenty of reading material. I think the caterer (they provide food and drink) was slightly offended I didn’t take him up on any offerings. 😀

[DorsetLady PMRGCAuk volunteer in reply to Rabbit090]

Okay, well at least you only have another 5 to go!😳

[PMRpro Ambassador]

That's good.

I would be interested to know why they are using cyclophosphamide for a Takayasu diagnosis - since Actemra/tocilizumab is approved for unlimited use in it.

[Rabbit090 in reply to PMRpro]

He says it’s because of the “severe stenosis” - my brachial arteries are pretty much completely blocked and we might need to consider a stent at some point if they don’t compensate in some way. I will have tocilizumab after the cyclophosphamide as a steroid replacement apparently.

[PMRpro Ambassador in reply to Rabbit090]

Ahh so! Fair enough.

Another OOI question - did you see any of the food offerings? Did they look better than most hospital fare??

[Rabbit090 in reply to PMRpro]

It was just sandwiches and biscuits actually. And tea, coffee and hot chocolate. To be honest I was kind of surprised it was offered but then it’s not technically outpatient. Sort of a day in-patient I guess.

Still, I’ve become quite picky about food now I’m on the steroids!

[PMRpro Ambassador in reply to Rabbit090]

Standard NHS stuff then - with a million carbs!!! I am slowly working my way through a pack of chocolate biscuits I was brought by cousins as a pressie - they may be not just choccy biccies but M&S choccy biccies, but not something I would EVER buy and eat!! Like you, I'm pickier than that! My gelateria in town is also a patisserie and they make wonderful "mignons" - tiny versions of everything. I sometimes treat myself, but even then, I cut them in half so they make 2 treats out of one

But I can't throw out good food, just goes against the grain.

[Rabbit090 in reply to PMRpro]

I know! It is shocking that they can’t do better.

I made a low sugar (but obviously still full of fat and calories) cheesecake for last Sunday’s lunch and had the tiniest sliver but now the rest is still glaring at me from the fridge. It’s a competition as to which lasts longer - my willpower or the cheesecake going off.

[PMRpro Ambassador in reply to Rabbit090]

Would it freeze?

thekitchn.com/how-to-freeze...

Though fat and calories are less important than the carbs. I eat fat ...

Next time - half size with a little tin? Individual desserts. one for everyone?

[Rabbit090 in reply to PMRpro]

Ooh, it might! I should have done little individual ones for sure and could have distributed the extras to family that wasn’t there.

This one is my favourite so far. I did it originally for MIL who was having gut issues as it uses gluten free ginger biscuits for the base and cream cheese, mascarpone and cream for the no bake cheesecake and only a couple of spoons of maple syrup. It was a little soft so freezing it might actually help!

[PMRpro Ambassador in reply to Rabbit090]

Sounds yum!!!

[Koalajane in reply to PMRpro]

I have to say I was shocked that the hospital food was so full of carbs. No salads, just mash, pasta, rice. So difficult to make a choice of what was best to eat!

[PMRpro Ambassador in reply to Koalajane]

Bet the average patient wouldn't eat salad!! Even here, I had to make an arrangement with the dietician to get extra salad!! And so few veg.

Not recent but I had a coeliac friend who was in an English hsopital for a week. Shepherd's pie - EVERY SINGLE DAY! She depended on visitors for other food. Here if I ask for gluten-free I get an proper menu, homemade ravioli and whatever - fairly carby but very good.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

I haven’t been a patient since before Covid- but the meals then and going back to when late hubby was in frequently were very good in our local one. This is dated 2022 so can’t guarantee it’s uptodate - but it doesn’t look too bad compared to what’s been quoted elsewhere-

dchft.nhs.uk/wp-content/upl...

[PMRpro Ambassador in reply to DorsetLady]

"Inpatients are catered for by our in-house catering department which operates a fresh cook meal service. "

Says it all - it's the remote meal supply services that are absolutely awful. I remember the canteen in the smaller hospital I worked in in Dundee - there were queues at lunchtime, Christmas dinner was amazing, as good as you get at home. The woman in charge ruled with a rod of iron.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

It’s the main restaurant for staff and visitors as well..

[Rabbit090 in reply to PMRpro]

We had an elderly friend in at Brookfield for several days with a broken arm. She’s incredibly fussy and basically only ate sausages and mash the entire time.

Interestingly Addenbrookes has a range of high street cafes in their main food court but the only one that has anything even remotely healthy is the one inside the School of Clinical Medicine. Go figure.

[SnazzyD]

Good luck with all that! Do continue to be insufferable!