2 years later…

For a while I’ve been wondering if I should restart this blog or not. My weird online diary, weird in the sense that diaries are usually private but mine was open for anyone to read. For the most part it was completely candid, I didn’t withhold any information, there had been times where I left details out because I didn’t feel comfortable sharing, but for the most part it was honest. My reasoning for the blog was to raise awareness for Lupus after realising nobody understood or often hadn’t heard of Lupus. I’m not a natural born writer by all means but I throughly enjoyed it and it proved helpful. I could go back to posts and pin point when a new symptom started, when a flare started, when my last flare started, medication changes – the list goes on. There’s a 2 year gap where nothing was recorded and I can’t remember it.

Various life events stopped me writing. One thing happened after another and it wasn’t a priority for me and for once it wasn’t lupus related…crazy I know! I’ll be honest, when life did calm down, I didn’t even think about this blog despite the app being on my phone. It wasn’t part of my life or routine anymore. The wind must have changed directions because recently I have been thinking about my odd little corner of the internet and the more I thought of it I realised I actually miss it. So here I am writing a very overdue post.

If you can’t remember me or have somehow just stumbled across this blog, hi, I’m Emily. I have lupus and a few other auto immune diseases scattered around my body. As a collective I call them Lupus and friends.

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Medication

I don’t think medication has changed but I’ll recap in case it has or just in case you’re interested – you’d be surprised how interested chronically unwell people are with each others medication. Do you remember sticker books as a kid? And you’d say to a friend “I have that one!”, it’s a bit like that but with pills…ahh how life changes.

• Mycophenolate this is for Lupus, this is the medicine that suppresses my immune system – in layman terms it essentially makes my immune system really naff so lupus can’t attack my body. It also makes me susceptible to colds, viruses and infections. Out of all immune suppressing medications I have been on – I have been the most stable on Mycophenolate which is ironic because my rheumatologist told me he didn’t think it was effective for lupus.
• Hydroxychloroquine again, this is for lupus. It’s a mouthful so us lupies call it Hydroxy. Fun fact: it’s actually a medication used to treat and prevent malaria but for some reason it helps lupus. I have been on Hydroxy from the day I was diagnosed. It’s typically the first treatment a rheumatologist prescribes and if it doesn’t help immune suppressants might be introduced along side it. It might sound familiar because Donald Trump made national headlines when he believed it would stop people contracting Covid if they took it. It didn’t and it still doesn’t. Really good for Lupus though.
• Apixaban these are blood thinning meds, not for lupus but one of its close friends: Antiphospholipid Syndrome. I have a post on what Antiphospholipid Syndrome is lurking around somewhere, I’ll link it at the bottom of this post. This medication thins my blood to lower my risk of blood clots. It does have the unpleasant side affect of bleeding the equivalent of the River Nile with the smallest cut and it also makes me bruise easily.
• Naproxen for pain. It’s a prescription ibuprofen. I was taken off it for a while because they thought I had a stomach ulcer – I didn’t and I eventually figured out the cause of my gastro issues myself which the doctors agreed was correct. Anyway, they recently put me back on it after some issues with my hip. They really do think ibuprofen will do the Lords work. I don’t rate it myself. I didn’t notice a difference when they took me off it and haven’t noticed a difference being back on it.
• Amitriptyline this both for pain and to help sleep. The dose was recently increased due to the hip pain mentioned above. I think it somewhat helped my sleep but haven’t noticed a huge difference with pain.
• Sertraline usually used for depression but I was put on Sertraline when I was taking steroids because steroids unfortunately completely mess my head up. My GP decided to keep me on Sertraline after the steroid treatment for an existing anxiety problem. Lupus has definitely made my anxiety and occasional periods of low mood worse – I haven’t spoke to a single person with lupus whose mental health has not been affected.
• Ferrous Fumarate usually known simply as iron tablets. Apparently I’m slightly anaemic these days.
• Lanszoprazole this is a medication reduces stomach acid. I take it to protect my stomach from all the meds I take.
• Levothyroxine this is for an under active thyroid. It gives me the hormone my thyroid doesn’t make.
• Propranolol for anxiety. I only take them when I feel anxious.
• Carbomer Eye Gel self explanatory really. I use the eye drops for another disease called Sjogren’s Syndrome – which I’m almost certain is a misdiagnosis. Sjogren’s is a disease that affects the parts of the body that produce fluid. Now the reason I believe this is a misdiagnosis is because the only symptoms I have is dry eyes and mouth and I’m sure lupus can cause both of those symptoms.

When I see it typed out like that it doesn’t seem much but most of the medication is what I call ‘multiples’ because I take multiple of them. Mycophenolate for example is 3 a day.

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Symptoms

I remember seeing a video of Selena Gomez cooking and her hands visibly shaking and she apologised for it and stated it was due to her lupus. I sent it to my mum and said I would hate to have that symptom. I think you can guess where this is going. I got the lupus hand shakes. But, it’s not just shakes, oh no…it’s shakes, pain, weakness and swelling. It has quickly became my most hated symptom for one reason: it’s my first visible symptom. Sure, rashes are visible but thankfully for me the facial rash isn’t an everyday symptom for me. The hand issues however are a visible symptom and people have noticed it.

I first noticed it getting my nails done but I thought nothing of it. Then I’d noticed it after preparing food, washing my hair, grooming my dogs, holding my dogs…I noticed that after I did pretty much anything my hands would shake. Tasks that had repetitive movements, like food prep would cause the swelling along with the shakes. Now eating a meal causes them to swell and shake. And I hate it. I hate that people can see it. I hate that slowly this ‘invisible’ disease is uncloaking itself.

I still get headaches. I still have multiple in a week but I’m pretty good at handling them. Well, I’m not sure if I’m actually handling them well or if it’s just such a common occurrence that I’m used to them, if that makes sense.

Hip pain is somewhat new too, I’d say it’s developed within the last couple of years. It mostly happens when I sleep but sometimes it can start for no apparent reason. It’s a difficult pain to describe it’s a bit like an intense ache, an ache that’s so deep it’s almost to the bone. It is only the right hip that is affected.

I still have pain in the usual areas like my shoulders, elbows, wrists and knees…at this point it’s easier to sing the Head, Shoulders, Knees and Toes nursery rhyme. I have always said my elbows and knees were the areas that caused the most pain and this is still true but my hands are firmly in this category too. Have you noticed it’s areas of the body that are most used? You can’t avoid moving your elbows, knees or avoid using your hands. That’s what makes living with it that bit harder.

Muscle pain still happens. It usually occurs in my thighs. It’s what I imagine being stabbed feels like. You know when you get a pain and you clench your teeth and breathe in? Yeah that’s the affect lupus muscle pain has.

Fatigue never changes. Somedays it’s severe, I can wake up from a 10 hour nights sleep and go back to sleep for 2+ hours. Somedays I can get through the day without a nap. It varies but it’s always there.

UTI’s in the past year have been the bane of my life. I’ve had so many urine infections. I’d get rid of one and then a month or sometimes even weeks later I’d have another. Back in July my GP referred me for a scan of my kidneys and urinary tract. UTI’s are very common in lupus but lupus also loves to attack a kidney. My GP just wants to rule out if anything else is causing them and if my kidneys are ok. But, I’m yet to receive the scan appointment, I should probably chase that up.

All in all lupus is still a brute and keeps throwing curveballs at me but I reckon I’m still winning.

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Life

I have been quite lucky in 2023. My highlight of the year has already happened. I’m a big Harry Styles fan and I was incredibly lucky to get tickets – they were like gold dust. I don’t get to do things like that often with having lupus and experiences like that take a huge toll on me but I’d do it again in a heartbeat.

I also went to see Formula 1 at Silverstone! Who’d have thought that me, who has her nose in a book when Seb watches it, would go see it? Me either. I ended up really enjoying it. Seb has been away a lot with work this year so spending that time with him, watching something he loves was just brilliant and lovely. Like the concert, it took it out of me but it was worth it.

We also went on our annual canal boat holiday which I spent mostly reading! For Christmas 2022 I got a Kindle from Seb and it was like he gave me the gift of reading again. I was struggling to hold books with my hand issues so I hadn’t been reading much and reading is one thing I truly love to do. That was I until I got the Kindle! So I sat there on my camp chair as Seb meandered us down the canal, reading with my dogs around me.

A view from one of our spots for the night.

A lunch stop – I remember telling him I think I had UTI before I took this too. Lupus doesn’t take a holiday 😂

The Tiny Mafia. My 3 little comforts. ❤️

As you can see I’ve had really good year. But I do want to reiterate that the concert, the F1 and the holiday took a toll on me. I don’t want people to think I can do things like that without repercussions from lupus. I pay for it massively afterwards.

I have never seen my ankles and feet be as swollen as they were from the concert.

I was in bed early in pain after the F1 and I was taking pill killers and sitting down through most of it. We took chairs with us for this reason. I’m also very well looked after by Seb, he can get protective of me when it comes to lupus.

I was in bed early most nights on the holiday and also relied heavily on my pain medication.

Everything I do comes with a price but I would rather have the experience of something than not. This year has been unusually busy in terms of doing things, my life is never that exciting – I usually don’t do anything and if I do it’s certainly not the things I’ve done this year.

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If you got this far thank you for reading! I really enjoyed writing for my blog again. I’ll definitely be back.

Until next time,

Emily xo

*Link to my post about Antiphospholipid Syndrome.

Update, Isolation and Rheumatology appointment.

Hello. It’s a bit mad out there isn’t it?

I got a letter from the NHS (and multiple text messages) stating I’m high risk of severe infection if I contract the corona virus. There’s social distancing, isolation and then there’s shielding. I come under shielding which means I cannot leave my house under any circumstances and nobody can enter (unless they live with me, obviously). There was quite a large list of instructions for me to follow which I won’t bore you with. I will say there was one upside to the list: I can open a window. What a treat.

At first I hated it, it was a case of being told I can’t go out that made me want to go out. It’s like being told you can’t push the big red button. I’m generally an introverted person so mentally this isn’t a struggle for me. There has been occasions where I’ve wanted to go out for fresh air and a walk with my dogs to stretch my legs properly. Today is my 39th day in the house, the longer it goes on, the less I hate it – the opposite of how many are feeling.

One thing I’m struggling with is not seeing my boyfriend. We missed each other’s birthdays, we had a holiday booked for the 13th April which was cancelled. We FaceTime and text a lot but it’s still a crappy situation all round. I just want to see him but I can’t and I hate that.

I’ve been filling time by reading, watching Netflix and helping mum paint the kitchen – I did a small bit but I class that as helping. Oh, I almost forgot, I got Sims 4 because I can go outside on that.

I turned 25 on the 23rd. Despite my birthday being spent in lockdown, I felt so much love from everyone. My mum made a vegetarian buffet which was lovely, it was nice to eat the same meal as my family for once. Although my dad and brother kept holding up food asking what’s in it, I’m sure they believe they will die if they have a meal without meat. The whole day was just chilled and it was sunny so that was a bonus!

I recently had a new symptom. Well, I say new, it was just a more severe version of an already existing symptom. It was a dull but persistent pain in my right calf. Nothing I did helped, I tried Tiger Balm, hot Epsom baths and painkillers. Even resting it on something soft hurt so you can imagine standing and walking was painful. Everyone I told suddenly went into panic asking if it was swollen, red or hot because what I was feeling was classic DVT symptoms. Thankfully, there was no swelling, heat or redness and after 3 or 4 days it finally subsided.

I’ve had some days where my fatigue is heightened and I’ve had to go for a sleep in the day time, something I curse myself for doing every time I do it. It makes me feel lazy.

My headaches have been more regular but I’m managing to more or less keep on top of them with a mixture of painkillers.

My joint pain has been around the same levels. Some days it’s bad and some days it’s more manageable. It’s in its usual places: shoulders, elbows, knees and wrist/hand. More recently I’ve had some in my feet, which isn’t unusual but it’s not the most common place for my joint pain.

I surprisingly had a rash on my face a couple of weeks ago, I say surprisingly because Hydroxychloroquine does really well to keep my rashes down. Thankfully it didn’t last long.

I’m not 100% sure how I am on the anaemia side of things. Next month should be my last on iron tablets. I haven’t had any blood tests done since February. My GP wants some doing next month and he’s going to send a nurse to the house. I tried to tell him it’s not necessary and I’d wait until everything blew over. But he said it’s important that I have my blood tests regularly because my results have a habit of not being settled for long. I still feel like I’m wasting a nurses time by having them come to the house just for blood tests but the decision is out of my hands.

RHEUMATOLOGY APPT:

I had my appointment via phone today. It was very short which is why I’m not doing a post solely dedicated to it. At first I thought it was fabulous that I’d get to stay in my PJs and not trek all the way to the hospital for my appointment but I soon figured out I’d much prefer to see him face-to-face. I find phone consultations with GPs fine but I don’t think it works quite the same with specialists.

He first asked if I had received a high risk letter, which I confirmed I did and he said he was glad as he wanted me to receive one. He also doubled checked that I wasn’t having contact with anyone outside my home. He also said he hopes I’m coping with being isolated from the world, I said I am, I’m just incredibly bored.

He asked if I was still taking my Hydroxychloroquine, Mycophenolate and Apixaban, I confirmed with him that I was but told him my GP still haven’t put Mycophenolate on my repeat prescription (this has been an on going battle since November of last year, I’m over it at this point). He is as confused as I am as to why they’re not putting it on there. He’s going to ask them to put it on my repeat in his letter so I assume I should see it on there shortly.

He asked how I am and I said I still have the usual aches and pains but there’s not much that can be done. He said he thinks he has me as well as he can get me. He has put me down for an appointment in 6 months time but he said that could change but he hopes to see me in person next time.

That was it. It was over in less than 5 minutes. If it was a face-to-face appointment it would have been different. He would have had more recent blood tests to go off to know where we’re standing with Lupus at the moment and he probably would have ordered some more.

It’s the best we can do given the circumstances but still didn’t enjoy it and honestly I found it to be a bit of a waste of time (not for me but for him).

I’m incredibly busy and have a list of things I need to get through so I’m going to leave this here. I think I’ll start with my weekly Ben Nevis climb*

*that was sarcasm for the people who think I’m busy and could climb Ben Nevis (to clarify, I could never)

Rheumatology appointment: 28-02-2019

This appointment had 3 months between my last appointment which you can read about here.

All checks such as blood pressure and urine were fine. For some reason I wasn’t weighed which isn’t a problem for me as I haven’t been eating as healthy as I usually do in the last couple of weeks…chocolate, crisps, Costa’s with a cake at the side and popcorn at the cinema last night.

My consultant firstly asked about headaches, probably due to the last appointment being centred around them. I told him I have noticed a difference since my dose of anti coagulants (Apixaban) had been increased. But, I also told him in recent weeks I had suffered some headaches but no where near on the pain scale as they previously were.

At my last appointment he increased Hydroxychloroquine back to the original dose of 400mg a day in the hopes it would help my aches and joint pain. Today he asked if I felt any benefit with the increased dose and I admitted that I felt no benefit or difference . He seemed disappointed and said he hoped it would improve things.

I told him that today I had pain mostly located in my elbows, knees, right shoulder and that my fatigue has been heightened recently. I recently had an odd rash on the inside of my left thigh, he asked how long it stayed for and I confirmed it was there for a week. I showed him a picture of it and he said it was burst blood vessels which is normal with my conditions. I also mentioned that my knuckles keep swelling and at one point my right hand wanted to stay closed.

Another point of the appointment was about teeth. I had discussed teeth with some other Lupus sufferers and they all said I need a prescription toothpaste. I asked my consultant if it was Lupus, meds or a combination of both that caused damage to teeth and he confirmed Lupus likes to pick on teeth. Mostly because Lupus often comes with secondary Sjogrens Syndrome which causes a dry mouth…guess who has secondary Sjogrens? He agreed that the toothpaste would be beneficial but he has struggled to get hold of it in recent years and that I’d have more success obtaining it via the dentist. In the mean time he has prescribed a spray to use as often as needed which stops the mouth from becoming dry and preventing damage to the teeth.

The time between appointments has changed from 3 months to 6, which I’m glad about. I had some blood taken and was sent on my way.

The post Christmas flare has hit

The post Christmas & New Year flare hit me like a train, a train I expected to hit me, it always does. I can more often than not predict flares but I can never predict the severity of it. Post Christmas flares tend to hit me at full force when I finally stop and stay still. I’d compare the on set of this flare to having a brick launched in your face by a champion shot putter.

There was something new with this flare – swollen knuckles. My hands are a part of my body that usually goes unaffected, they get sore and sometimes they’re weak and I drop things but they have never swelled for a long duration like this. My right hand is the most affected and it has been swollen for a week, my left is also sore but it only swells every now and then, mostly at night. There has been some days where my hand has stayed in a ball and despite it being less painful for it to be open, my fingers would curl back into a ball on their own. The swelling tends to get worse at night which I presume is due to using my hands throughout the day. I have tried Ibuprofen, Diclofenac, Tiger Balm and Deep Freeze but none of the above seem to help, it’s a case of waiting for it to go down on it’s own accord.

I have had severe joint pain too. Shoulders, elbows, wrists, fingers (probably tied in with the swollen knuckles), knees, ankles, feet and toes. It’s a sharp pain but it can often be dull too. It’s a constant pain, it seems to always be there but in varying degrees throughout the day. By early afternoon it tends to grow in intensity and by night it’s at the most severe level. Doing small tasks like sorting laundry triggers the pain to get worse in what seems like seconds. One evening last week, I noticed that my knees had began to swell, they haven’t gone down but at least they haven’t swelled any further.

If sore and inflamed joints weren’t enough, I have been experiencing a lot of muscle pain. It’s most severe in my calves and upper arms but it has been affecting muscles I didn’t even know I had. It’s a sharp pain but at times it’s a dull like bruise pain and it’s more often than not a constant pain.

I have very limited energy. I seem to be craving naps and napping is something I try to avoid. It makes me feel lazy but it’s more to do with waking up from one feeling worse symptom wise. I usually keep myself awake throughout the day but there has been occasions where this is entirely impossible and I end up falling asleep. I feel as if my eyes are constantly burning and that I need match sticks to keep them open. Very small tasks like getting washed and dressed seem enormous. I haven’t (unsurprisingly) been sleeping well, I keep waking multiple times throughout the night, which isn’t helping my fatigue levels.

I’ve been having headaches. There was one evening last week where I suddenly developed a severe one. I was sitting in the living room with my family and out of no where a sharp pain abruptly started in my temples, just moving my head caused significant pain and the lights were hurting my eyes. After half an hour I started to feel nauseous so I went to bed. The next morning, I realised it was more than likely a migraine. I’ve had less severe headaches almost daily, like a dull constant pain in the back of my head.

Most people are over Christmas, after the decorations have been taken down, it’s not given a second thought. I’m not over it, this is what Christmas and New Year does to me. This isn’t a random occurrence, it happens yearly, Christmas is the hardest time of the year for me. I struggle with the preparations for it, I struggle through Christmas Day, Boxing Day and all the days in between. By New Year my body is begging me to stop. And, when I do finally stop, the punishment for enjoying Christmas starts and I have no idea how long it will last.

Azathioprine, steroids and symptoms resurfacing.

I went to my last set of blood tests (Friday 11th May) with low expectations of any change to the results. Tuesday 15th, the doctor rang me and if I’m honest my first thought was that something else had gone wrong. But, he called with good news, my white blood cells and neutrophil levels had returned to normal! By afternoon, I was nearly skipping into the surgery to pick up my Azathioprine, the dose has been reduced from 150mg to 125mg. I can’t say for definite why this all happened but I believe my body just couldn’t tolerate the higher dose of 150mg. Before all of this happened, I thought Azathioprine was borderline useless. It wasn’t until they were abruptly stopped that I realised just quite how much they helped.

Thursday 17th: I received a call from my Lupus nurse. It basically consisted of her telling me I could restart Azathioprine and my blood tests can go from weekly to fortnightly. I happily cancelled my blood tests for the following day. Weekly tests get beyond tedious.

Friday 18th: I reduced my steroid dose from 15mg to 10mg. I will remain on this dose for just 2 weeks before reducing again to 5mg. The first side affect I encountered was hunger and I can fully understand why people gain weight – it’s insatiable. You could have put an extra large mix grill in front of me and I’d have probably demolished it (I never eat mixed grills, I don’t think I’ve ever ordered one). But thankfully, the hunger feeling seems to have disappeared. The next slightly bizarre side affect was and still slightly is, a sore tongue. This only really bothered me when I drank cold drinks or when I was cleaning my teeth. The final side affect that still comes and goes is feeling HOT. It mostly happens at night which disturbs my sleep…not totally helpful for someone who can’t sleep at the best of times.

When I first started steroids, I felt incredible. I felt like I could do task after task without becoming instantly fatigued or sore. However, last week we had family over which put me out of my usual routine and I was doing too much to be able to cope. My energy levels rapidly declined and small tasks started to feel like I was being asked to climb a mountain. Body aches were the next symptom to resurface, it was like I had been dipped in concrete, an overwhelming heavy feeling. My headaches had reappeared, with sharp pains around the eyes. And, the dreaded joint pain started to radiate through my joints, even the tiny joints in my feet hurt. On Saturday, I felt like my body was about to give up, just walking to the toilet was too much. By the afternoon, I had no choice but to go back to bed. I slept all afternoon, even through my Grandfather and Dad drilling through the wall below my bedroom. It was heart wrenching and frustrating to go from feeling well on steroids back to feeling so sore and poorly. It just proves how powerful Lupus can be and if it demands to be felt, it will.

My joints are still very sore and I’m still very fatigued with body aches. But, I’m going to use this week to relax and recover. It can take anywhere from 6 weeks to 3 months for Azathioprine to fully kick in, obviously I’m hoping it doesn’t take long at all. But, we’re at least back on the right track.

Steroids: what are they like?

I’m nearly at the end of my first week on steroids, it’s time to give my initial thoughts on the dreaded medication. When I initially started them, I spoke to a few people in the chronically ill community about their experiences with steroids. There wasn’t one person who wanted to be on them, despite knowing they would help. Steroids work by reducing inflammation and they also suppress the immune system – which is why they are commonly used for auto immune diseases.

Steroids tend to raise the level of glucose and sugar in the blood and they also cause an insatiable appetite – those combined can lead to the side affect that nobody wants: weight gain. I’m being strict with what I consume, carbohydrates turn into sugar, so anything with a high carb content has been eradicated from my diet. The only carbohydrates I eat is what naturally occurs in fruit and vegetables. I have significantly upped the amount of protein I eat too. It’s a complete change around for my diet, I usually consume more carbs than I do protein. Despite constantly feeling hungry, I haven’t caved to it yet. I ignore the hunger pangs and only eat at meal times…I guess that’s where being stubborn comes in handy. Out of everything I’m used to eating, all I miss is a cup of tea with one sugar and a handful of biscuits.

However, I am suffering from two side affects. The steroids are making my body temperature rise and I feel unbearable hot, this mostly happens at night but it has occurred in the day time too. The second side affect is disrupted sleep (as if my sleep couldn’t be anymore disrupted), I definitely think the body temperature has a part to play in this too. I constantly wake up through the night or it takes me hours to settle down and sleep. That being said, I’d rather have those two side affects than any others.

Despite having disrupted sleep, the steroids have worked wonders for fatigue. I seem to be able to do a little more in the day time. Not only that, but I can concentrate on things better and my brain fog isn’t as bad. However by late afternoon I start to become tired again, but it’s probably down to me taking advantage of not being so fatigued. I’m still having joint pain, but it’s not as constant and it usually starts in the early afternoon and it intensifies a little by early evening. The steroids haven’t worked for my headaches yet, but whilst reading the side affects, it said they can cause them – so I’m not entirely sure if it’s a side affect or lupus.

I would say that so far, the only great improvement I feel is the fatigue. Which is okay with me, fatigue is a symptom I can’t stand or get used to. If my consultant decided to keep me on the steroids for longer than expected, I wouldn’t complain for this reason. But, there’s still time for the steroids to start taking affect on the other symptoms – time will tell. My recent blood tests show that my neutrophil level is still low, so I still don’t have a clear idea of how long I’ll be on steroids.

I’m (reluctantly) on steroids.

The break from Azathioprine continues, if I’m honest, it’s lasted much longer than I had anticipated. And, to be frank, it’s been an utter nightmare. It feels as if nobody is communicating with each other, it’s almost like they have no idea what’s happening with my treatment plan.

My Lupus nurse called me on Monday 23rd April, to tell me I had to stop Azathioprine (by this point, I’ve been off the medication for 2 weeks). She told me that my white blood cells have returned to a normal level, but my neutrophil level remains low. She said she was going to talk to my consultant about restarting Azathioprine and that she would call me back in a few days. By the Friday afternoon, I hadn’t received a call which prompted me to call her – it went to her answering machine.

Wednesday 2nd May: there still was no call back from my Lupus nurse. I tried to contact her again. It went to her answering machine but this time there was a message alerting me that she was on annual leave until next week. To get a message to my consultant, I next tried calling his secretary and hallelujah, she answered! I had to tell her the full story: no Azathioprine and how long I’ve been off it, low white cells and neutrophils, frequent blood tests, Lupus nurse called and then didn’t call back and finally that my symptoms are progressively worsening from being under medicated. She noted everything I said and told me she would speak to the consultant and call me back.

Whilst I was waiting for the call back, I logged into my patient access app and looked back at my neutrophil results from past to present. I realised they’ve been low before and fluctuate quite frequently:

Due to this realisation, I was getting pretty cocky that I’d be back on Azathioprine that night. The secretary called me back, she re-confirmed that my white blood cells are back to normal but my neutrophil level remains low. And, because of that, the consultant is continuing the Azathioprine ban. But, he would like me to go on steroids to control the worsening symptoms until the neutrophils are back to normal. I paused slightly and told her “I don’t want to take steroids”. I mean, bless this woman, I’m talking to her like she can change my consultants decision. She sounded quite sympathetic and told me “Doctor wouldn’t prescribe them if they weren’t necessary”. I eventually agreed to let her fax the care plan to my GP. She told me to call the surgery in 15 minutes to see what time they’ll be ready to pick up.

I started sorting the laundry out and before I knew it, I was crying because I REALLY don’t want to take steroids. I started to wonder, why everyone is suddenly making a song and dance about low neutrophils when they’ve been low in the past? I logged back into the patient access app, this time I looked at my white blood cell results past and present – they also fluctuate and in the past, both my white cell count and neutrophil levels have been low at the same time. But, I remained on Azathioprine.

An hour passes by the time I called the GP surgery, there’s no fax – they said to call again in an hour. I kill a further 2 hours and call again but there’s still no fax. By this point, after spending much of my day chasing people up and my patience hanging by a thread, I told them I would call back in the morning.

Thursday 3rd May: I called the GP surgery again and there was no fax. I would class myself as a chilled out person, I don’t get annoyed easily, but this situation was really pissing in my cornflakes. I called the secretary back, she was annoyed too. She sent the fax within minutes of getting off the phone to me and also sent a hard copy. She said she would call the surgery and re-fax the care plan and told me to call them again in 10 minutes. I left it an hour and when I called back, praise the Lord, they had the fax!

I’m not scared of the steroid itself, it’s the side affects: moon face and weight gain. I only have one logical explanation for this fear, the eating disorder I suffered as a teenager. I have been told I look tired and my under eyes are becoming dark, so the worsening fatigue and pain is starting to show – steroids are the only thing on the table for me at the moment so I have to (reluctantly) accept them. Mum and I researched what the best diet is whilst taking steroids: low carb and high protein. Although my dose is low, I’m not taking the risk and eating how I usually do. However, I have made it clear that if I don’t like them, I won’t keep myself on them.

I seriously didn’t think it would drag on for this long or that I’d end up on steroids. I’m at my wits end. I didn’t realise how much Azathioprine did for me until I was taken off it.

The dose: 15mg for 2 weeks, then reduce to 10mg for 2 weeks and finally to 5mg for 2 weeks.

A week without immune suppressants…

It’s been over a week since my last dose of Azathioprine and according to my research they were out of my system within 2 days. At the time of stopping Azathioprine, my white blood cells were reading at 3.3. However, I had the levels re-tested again on Friday (13-04-18) and they are now reading 2.8. My GP, on Monday, assured me that the levels would return to normal quickly. Instead they have fallen, which concerns me but, I seem to be the only one concerned about it.

I was fully aware that I would suffer due to being under medicated and I knew Lupus would drag me down quickly. Today has been my hardest day so far. My headaches, which were greatly reduced by the Apixaban have returned, it’s like a constantly thud in my head and there’s sharp pain behind my eyes. My joints, especially my knees and elbows have pain radiating through them, I can’t take my strong painkillers because they induce headaches – which would just turn my current headache into a migraine. My feet and fingers have lost feeling quite a few times which ended in pins and needles.

Around lunch time, I had severe pain on the left hand side of my back, just under the ribs. It was so severe that it reduced me to tears and made me nauseous, it seems to be coming in waves but so far, nothing as bad as earlier today. It was as if someone was stabbing me.

Fatigue has been mounting up, I have no desire or motivation to do anything but sit or lay. My eyes sting and burn and small tasks are beginning to feel like impossible tasks. I’m starting to feel like a zombie, I look awake and alert but I don’t feel it.

It scares me that I could and probably will get worse, I’m heading into my second week being under medicated. You can feel Lupus pull you in but you have no idea how far it’ll pull you, and that’s the scary part. But, this is what happens when you give Lupus free reign to be a dick.

I have blood tests this Friday to re-check my white blood cell levels. I’m hoping they will have risen but due to the drop, I’m dubious that it’ll be enough to re-start the lowered dose of Azathioprine.