Soooo last update was early September, when I was freshly on a stink load of steroids and energy levels were confusing things. Now down to 25mg (from a giddy high of 60mg!) and really this is basically because it doesn’t do an awful lot for me, other than make me have weird sleeping habits and Eat. All. Of. The. Food. Not even joking, it is scary. Reason for that wack up was because Fester (big toe) tried to be dead again, but the steroids and a hefty wack of antibiotics sorted him out and he remains cold and mottled and thankfully not gone to far over to the dark side…
Week later, my stupid fingers started kicking off, with teensy weensy baby ulcer spots, so same story, stayed on high dose steroids and agreed with Consultant that the daily dose of MMF would get increased too. This is the one I call chemo-lite – used as anti-rejection meds for people following transplants, as well as being a daily form of chemo given to people with auto-immune conditions. I tolerate it pretty well, not too many side effects at all, so decision was made to bump that up from 500mg twice a day to 750mg twice a day and still ticking 😉 If anything, none of it seems to be exciting enough as my stupid white count and neutrophils are STILL climbing, from the high early September – this was blamed on increased steroid dose, but now on lower dose and still going up. Constantly looking for infections or ulcers forming, but only other thing I guess it is reflecting is my immune system having fun deciding my blood vessels are all the enemy. Over enthusiastic little git… You would think the stupendous amount of drugs I am taking to flatten my immune system would be doing something. Can you become immune to immunosuppressants??? Anyway, basically all my fingers are now being stupid and freezing cold and I am back to doing everything in mittens except going to the toilet, washing my hands and eating. Mittens = life!
My hip, following the potential pyoderma gangrenosum query had a month of strong steroid cream, as well as the timing of the increased steroids and the antibiotics, so if it WAS pyoderma, it was either going to be very happy and heal, or get worse anyway and form a crater of death. Instead it basically didn’t change at all. For a month. That actually takes some effort. I have had the same open wound now for… Eight months! If you can’t win, at least be proud of sucking so much yeh??
Whilst newly on all the increased steroids and MMF, it was time for the camping party that saw me sitting on the floor with everyone swearing at Death Toe a year ago, in my rather iconic awesome socks. I was verrrrrry apprehensive, not least being a bit wired on the steroids and aware I was not exactly very resistant to the cold… I had epic assistance as per usual from everyone and tried a new sleeping ON the duvet instead of UNDER the duvet thing in the tent and it was SO MUCH WARMER! My sleeping bag finally died, but that is what Christmas is for. I am an only child this year for Christmas as well, as everyone else is sodding off to the other side of the world, so this means I get three times as many presents. True story!
Anyway, I spent a lot of the time in the above fancy dinosaur hat, despite hating both orange and dinosaurs, so bit confused about why that happened… But I also fed blackberries to giant fish, sat around a campfire and had ALCOHOL!!! For the first time since Solfest last year, when I was essentially balancing painkillers and alcohol and completely failing to block out the toe… When you are not in ridiculous pain, turns out alcohol still gets you a bit drunk 😉 It was fun being silly, but although my toes were not dying, I was still sore as duck with all the moving and joy. Sleeping in tents also not recommended for being able to move the next day 😀 WORTH IT. No fingers or toes fell off anyway, which is more than I can say for last year. Also resisted the lake, although not as tempting with it absolutely lashing it down the whole weekend.
Very end of September I had the joy of a trip up to Carlisle, to the same ward that I lived on for two weeks in February. Same ward and staff who sorted out plex round two, cyclophosphamide (urgh) and the destruction of Death Toe (yay!) – some very good eggs! The plan was to do another dose of rituximab; my Consultant had a chat to Addenbrookes to check they didn’t have any other exciting plans and they had confirmed rituximab was best plan. The cyclophosphamide was originally used AFTER the first two doses of rituximab, because I was too unwell and rituximab takes too long to become effective and is a bit too gentle… I have now had four infusions of it and honestly, compared to the cyclophosphamide it is a piece of cake. Doesn’t make me feel sick, just a bit more tired than normal and the drugs they give you with it (hydrocortisone urgh) make me absolutely spiked. No exciting skin rash reaction either last time in April or this time, so that was maybe a one off. I got very used to having awful veins after all the tests and cannulas last year, so warned the doctor I was a nightmare; she got my arm super pumped up and maybe got a bit too enthusiastic, as I bled all over the procedure room and it was hilarious! I have been binge watching Dexter a lot at the moment and it was exactly like one of the more exciting crime scenes, with puddles of blood and smear patterns and fingerprints… Maybe not as funny for her as she had to clean it up because I was plugged in, but it made me giggle. Other than that I basically slept the whole six odd hours curled up in the chair, except for vaguely waking up every 15 mins to get my blood pressure, temp and pulse checked to make sure I wasn’t dead. Very comfy chair! The train there and back went a bit more smoothly this time too – I had epic coffee and cake for breakfast when I got to Carlisle, courtesy of my welcome committee/taxi driver 😉 Afterwards I was sleepy and dozy, but it wasn’t too late as I bossed the actual infusion, so made it to the train in one bit… Last time I had ended up getting on the train in Carlisle to go home, and somehow got off the train in Carlisle… It was very confusing and I was a bit scared of it happening again, but I did it successfully this time!!
FYI this handsome little fella is my new cat godson Ludo. He is the best cat ever, except for all the cats I am going to have and obviously except Mog, but he is pretty awesome and I am growing him cat grass because… Whilst in animal waffle section of this update, I also decided to get a new fish tank a while back because the old one broke suddenly and I didn’t want to watch all my fish freeze/suffocate to death. This obviously then led to more fish. Being a bigger tank, it has kept leading to more fish, in slow steady fishy increments. The newest are these two awesome golden loaches, called Boggis and Bunce (the yellow snakey guys below). They are eating SO MUCH so my fish food costs have basically doubled from a few pence a week to maybe… 5p a week? Slightly creepier than anticipated; I always swore I wouldn’t get any albino fish and they are just a leeeeetle bit pale and red eyed for my liking, but they have oodles of sass, so have forgiven them. They also have very cool moustache faces!
So ja… Yesterday I had a day off work for a trip back up to Whitehaven to see my Consultant. This was for a routine outpatient follow up, planned before my fingers started kicking off and before the rituximab, so I knew already from many email chains that my Doc had been looking into some new ideas. Getting there was fun – there is basically one main road that goes up the west coast of Cumbria and we had some pretty heavy rain and flooding on Wednesday… So one of the bridges was closed. This led to an hour delay, as I had to take a funky diversion and then timed it perfectly to hit the special pointless uphill standstill queue at Egremont that apparently happens every day. My Doc bumped me to the end of the clinic, but by the time I got there and parked, over an hour late for the appointment, I was a shaky mess of sore muscles and brain mush. My bp was surprisingly not too ridiculous, I was only 145/99!! My hands were shaking though which was quite funny when trying to show off my purple fingers and having to excuse the trembles. Fun new idea that is being investigated is systemic sclerosis. I have had tests before for more general idea of scleroderma, as it would nicely explain the digital ulcers, but was DA DA DAAA! negative… So new batch of bloods have been taken that should pick up a wider range of markers. I don’t exactly fit the typical classic symptoms, but I don’t even give a fig anymore, I just want a bloody name. I keep going through phases of thinking I am being a drama queen and imagining it all and then I have a bad day and can’t move much, or think actually, my fingers are trying to die, or look over old blog posts and remember my toes dying… And yep, my body is trying to kill itself, so a name for the particular flavour of idiocy would be nice. It isn’t likely to change the treatment plan much, but it would be a bit of emotional closure! Given things are trying to do a repeat process anyway, also was decided to go ahead and pretend it is systemic sclerosis for now and change the pentoxyfilline I have been on three times a day since… March? to Sildenafil…
This is basically the whole reason for this blog update. I am still vastly amused and got to go and pick it up today. Sildenafil…
Very amused. Was a bit irked when picking it up today though, as although my Consultant had already written me the prescription, my GP confirmed that she could NOT prescribe it for me. It is a restricted drug, UNLESS it is for men with erectile dysfunction in which case she can write prescriptions all day… So my fingers falling off don’t warrant a drug that has very clear rationale behind the use of it. Not to suggest it is widely used, but systemic sclerosis is not exactly super common and honestly, I don’t exactly full fit the profile. Fun drug paper below anyway for anyone who thinks I am making up crap about viagra potentially keeping my fingers attached…
So just to confirm for everyone wondering, I will obviously let you know if I suddenly develop an erection that doesn’t go away, but the main side effects I am likely to experience are the usual crap that comes with basically every drug I am on already – like headaches, getting dizzy, changes in bp, turning pink… Just hoping it doesn’t get as exciting as the horrid iloprost did, as I cannot manage a permanent migraine. No amount of fingers are worth that being my life. FYI I am joking about the erection. If you don’t mind your search history looking a bit weird, research how viagra works. I am not going to suddenly grow a penis either. Or develop uncontrollable sexual urges. Sorry!
Getting home after the Consultant appointment was even more weird. I was a bit spaced out so crashed out in the car park for 20 mins, then set off, knowing I would have a diversion at some point. I do not know what happened (it is a peculiar talent of mine) but I swear I did exactly what the signs and the nice police persons all said… Got as far as… Somewhere and the road ahead was also suddenly closed, with people turning back round and saying that THAT bridge was also now closed… So the only way left was to turn back round. I scoffed at that idea, realised I was somewhere I recognised a bit and headed off up Hardknott Pass! It was just turning dark, so this was maybe not the cleverest idea I have ever had, but it seemed like a genius move at the time. There is no phone signal, ridiculous hairpin bends going all the way up and down a mad crazy mountain road, with added sheep sleeping on the road for funsies. It was pretty fun, in a put your foot down and sing along louder to Aerosmith kind of way. The fact it was dark by then was good, as I couldn’t see the sheer drop beside me… That road takes a LOT longer than you think but I committed hard and eventually made it back to Duddon Bridge and something kind of resembling civilisation and I only nearly drove very slowly into one cow and she didn’t seem too bothered!