March Madness & MXT

March was a blur of appointments and being in and out of work. I last left it waiting for my IBD nurse’s clinic appointment – a Wednesday morning, two days after being back at work and getting more sighs from my line manager about “more time off for an appointment” – to discuss my options.

She has had my blood work back – for my antibodies and trough levels – and they were sky high. I still haven’t been able to get the parameters for these two tests, but she described my antibodies as thus; “there is a limit of 200 on the scale, you are *way* above it“. Simply put, my body is fighting the drug, as soon as it comes into my system. And by the time I have the follow-up one – which should just be a top up, in theory – there is hardly anything. No wonder my body is in so much pain, it’s fighting, every single day, to keep me going. No wonder I am exhausted.

The plan was to push my case to the top of the MGT meeting the following Tuesday – hours before my clinic appointment with my consultant – to issue my infusions six weeks apart. I was to continue the steroids and hope nothing untoward happened in the mean time.

So I returned to work that afternoon to be told I was being made redundant at the end of term, a mere three weeks away. Talk about piling on the shit, pun intended.

Fast forward a week to my clinic appointment with my consultant; who has only been in charge of my care since I started Infliximab back in November 2013. He has only my medical notes and me to explain to him about my experiences of drugs and care before that date. That being said, we discussed at length my options, as they stood then. He never talks down to me and always makes sure I understand the risks versus the benefits of everything we could try. Since the start of 2015 I have been more vocal in what he has planned beyond this current treatment. I always want to be one step ahead and never have the terrifying fear of being in between treatment plans.

It started with my blood results; antibodies and trough levels. Knowing how bad they were and how it was probably unlikely I would be able to retain the drug like I did in the very beginning; he suggesting maybe switching back to Humira. He asked about my experience on it, knowing that my file documented the majority of it. I said it was bad by the end, I felt very much like I do now; unwell but not sick enough to be hospitalised by it.

Then it was Infliximab and Methotrexate. This would be having a six weekly schedule of Infliximab and a weekly dose of MXT alongside a routine of folic acid to counteract the side effects of MXT (low dose chemotherapy, well used in Crohn’s Disease for achieving and maintaining remission, alongside biological treatment). “Chemo” drug; immediately has me on edge; am I that sick now? Has it gotten to this point already?!

Following that, he suggested experimental drugs – some of which I can’t remember, the side effects *did not* outweigh the positives – and then a referral; for a bone marrow transplant up North.

***

The lesser of all the evils discussed on that appointment was the Infliximab / MXT combo. He wrote me a script for a months supply of MXT and folic acid and asked my IBD nurse to schedule my infusion. This is what it now takes to keep me “healthy” – and not even healthy in the same sense of everyone else, not suffering from an autoimmune disease – taking a drug with strong side effects. Is this the start of slippery slope? I ask myself the same question, when do I call it quits on medication, especially medications like this?

Infliximab #8

Yep, its been the two month wait for Infliximab. Feels longer; it was overdue by a week, caused by scheduling problems. Alas, I attended the hospital yesterday; after a problematic and rough week or so; very glad to be there and finally getting my infusion.   Prior to this, I had two lots of bloods taken. Both were okay, not as good as usual – WCC was up along with my CRP but my LFTs (and associated liver function tests) were falling FINALLY! – but what was troublesome to my GI, IBD nurse and infusion nurse, was these tingling sensations […]

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Infliximab #7 and Liver Problems

For all of 2014 my liver function tests have been steadily rising. When the new GI took over just before Spring, I suffered a couple of problems that lead me to A&E on a busy Saturday afternoon, in which we discovered how high my AST and ALT’s were – way over the parameter maximum of 40; some where in the 200’s – and the testing began. My GI order ultrasound, more bloods and finally a MRI scan in June before referring me to the Queen Elizabeth hospital in South Birmingham. My appointment was last Thursday, two days after Infliximab number […]

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Infliximab #6 and more…

Updates galore tonight – I’ve been extremely busy and to some extend, ignoring my problems a little. The build up to the latest Infliximab infusion was interesting; ten days before I started experiencing extreme fatigue in my leg and arm muscles. This would get a little worse each day, until four days before when I was unable to raise my arms higher than my shoulders. I consulted with my GP to see if this was an inflammatory response from an infection I had (possibly) or were my joints being attacked because the Infliximab was all but gone? After a round […]

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Infliximab #5

Another eight weeks have passed..   Another Monday lunchtime spent at the hospital, this time only for two hours; a one hour infusion followed by a hour of observations. As always, there were problems prior to the infusion, discussed before the weekend in “Spring Forward” concerning my liver but after being given the green light to attend, I turned up, fretful from a good yet bad counselling session that morning, to have a difficult time being cannulated. Cannulation, I hear you say, isn’t this a common problem with IBD patients? It can be, yes, but then again, no. Despite how […]

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Spring forward

Nothing like spending a Saturday evening in the hospital is there? That’s where I was two weeks ago, after a painful afternoon of sickness, I succumbed to my body and was taken to our local A&E department. I got assessed, had my blood taken, lots of poking and prodding and then proceeded to wait for my test results. They came in, gradually over the next couple of hours; move from a stomach bug, to a infection, to a possible Crohn’s flare up, to finally a inflamed and angry liver:  my ALT level was 214  – it is usually between 0-45/50 […]

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Infliximab #4

So, its been eight weeks since the last hospital visit for the magic mouse juice. This time, I was due to have a two-hour infusion and only one hour of observation. I had gone the eight weeks as was set out by my GI, IBD nurse and the hospital’s Gastro MGT team. Eight weeks are the standard set of time between infusions. As I had gone up and up in time between the first initial “loading doses”, I was now going a whole two months without another infusion and boy was it a long time! I had a great first […]

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Rough / Cough

This has been a rough one for me, more so than before. I can’t quite remember feeling this awful before, without the bowels going crazy and my body flaring. This, in all sense and purpose, is a cold. But given my immunosuppressed body, it has hit extremely hard; with each day providing me with a new and strong symptom, so much that I finished work on Friday afternoon – after a five hour shift that mostly consisted of me sneezing, coughing and generally loosing all sense of body strength and temperature control – and could not see any light at […]

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Half way through or half way there?

So, this week I’m half way through my four weeks of this second infusion. This also means, I’m more than half way to my next infusion too. In fact, its 9 days away and honestly. I’m excited. The difference between now and before Inflixmab is huge. And add to this how different I feel between first and second infusion, and now, awaiting the third, it’s quite amazing how this is really helping. Now, as you already know, I am not biological naive, meaning I have received biological treatment for my Crohn’s in the past. That was between December 2011- and […]

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Infliximab #2

Two weeks came around fast. I could hardly believe it was my bloods check up last Friday, let alone how quickly the weekend came and gone, then it was Tuesday. Time for an all day stint at the hospital, sitting around waiting for time to pass. This time, everything was delayed. I was on a later appointment schedule, so that I could make my already scheduled GI clinic appointment that afternoon, and from the start, it was running late. There was already three other patients on the pumps, so I had to wait for the first to finish, which was […]

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Infliximab #1

Yesterday was very interesting. I am very used to being at the hospital, the regularity of my clinic appts and my ‘need’ for blood tests within the NHS trust system, I’m there at least once a week some weeks. That being said, it was extremely nerve-wracking waiting to be called into the infusion room. With my regular IBD nurse off sick at the moment, I was handed over to her back up, partner in crime and she administered my medication. She is great, not as brilliant and proficient and professional as my regular IBD nurse, but she was just what […]

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A bag of nerves

So, tomorrow is my first Inflixmab infusion. This is my second and final attempt at a biological treatment for my Crohn’s Disease. Last December the decision was made, after much discussion and scoping, that I was to stop Humira. I was feeling a mixture of relief and freedom. No more fortnightly injections, no more struggling to get through a 14 day cycle, no more crappy immune system, I could finally start a Crohnie life without medication. For both my medical team and myself, it was a little test to see how well my body and disease could go without medical […]

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Infliximab

Yesterday I got the call that will hopefully start to change my Crohnie life again. My IBD nurse confirmed that the GI GMT have successfully approved me for Infliximab.  I go back to the hospital next Tuesday for a “routine” clinic appointment to fix my first infusion date, after my bloods, TB test and chest X-ray. I had had an god awful day at work. Short staffed, in pain and bloated to within an inch of my work uniform, I was eagerly anticipating my vibrating phone my apron pocket, telling me my answer was finally here. I was in completely […]

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Welcome Home

With another hiatus come and gone, its time to start writing again. Since my last post, I’ve spent two separate nights in A&E with Crohn’s related pains. Since then, I’ve been without any real help, it has been weeks and weeks of pain and frustration. That was up until the start of September when I was working too much, too hard, and I had a flare up. I struggled on, continued to fulfill my responsibilities at work, but would come home and sleep. I was too tired to make dinner, to wash properly without being in pain, too lazy to […]

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Humira Review

Tuesday was my medication review with my GI at Good Hope. I’ve been asking about my review for a good 3 months to date, and finally, I’ve been given an answer. After all the hoop jumping, all the tests and bloods and scans, finally, FINALLY, I’m off the Humira. I had a speech all planned and all the evidence I’ve accumulated in the last couple weeks, only for my doctor to suggest, after having looked and explained my blood results and historiography of my colonoscopy, we stop my medication. I hadn’t expected this. A little grin appeared on my face […]

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Unhappy isn’t even half of it.. I’m full of anger, too.

Yesterday, my Humira injection was due. Yesterday, I visited my GP to discuss my ongoing symptoms. Yesterday, I was told I was had gained so much weight that I was unable to take contraceptive pills. Yesterday, I cried and inwardly cursed the drug that had brought me back from the brink. Yesterday was tough. I finished work in the middle of the afternoon, carried myself up the road to the doctors. I sat with my new GP – a lovely Welsh lady – who wanted to know why I was back, not even a week after my last appointment. Basically, […]

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The needle stick

For those who are new to this blog or need some reminding, I currently take Humira as my only method in my Crohn’s treatment plan. I’ve been on it since December 2011 and for the most part, it’s worked well. However, for whatever reason or a mixture of reasons, lately, its been causing more problems than it solves. That aside, I know more Remicade Crohn’s patients than I do, Humira ones. In fact, in that spectrum, alot of the people I’ve come into contact with Crohns, take tablet treatment also, or instead. Despite being a “treatment for moderate to servre […]

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NYE – New YOU Entirely

In true Louise fashion, the dawn of the new year had brought up all the emotions regarding my review in three weeks with my gastroenterologist. I spent last winter in and out of the hospital because without fail, my guts decide it wouldn’t be too horrible for me to go without some sort of hospital visit; be it a day in for a procedure or a check up, bloods or a short stay. This year, I’ve remained healthy, and for the most part that is due to my care into maintaining my remission. It is the combination of taking care […]

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Result!

…and moving forward, slowly. I last wrote on the afternoon of my bowel prep, on Thursday. I got through the first hour of Moviprep without too much of a problem, it didn’t taste as bad as I thought it might do – my experiences of Klean Prep for my MRI didn’t really set me yup well for this – but after a hour, I was done with my first litre. I got some juice and got settled down for the runs to the bathroom. After about a half hour, I finally went – some 90 minutes after starting prep, but […]

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