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.

A VERY overdue blog post. Shielding, Covid-19 vaccine & Lupus update

I have been gone from my blog for so long that I don’t even know how to start one anymore. I can’t say I haven’t wrote anything because there’s a post in my drafts from September. I have read it back and it looks like it should have been published, so I either changed my mind or I wanted to add more – I’ll revisit it soon. I space writing a post over a few days, I never write one in a single sitting and usually they’re written late at night. So, I’m going with the idea that more was to be added. Although, in my defence, there is only so much I can write about shielding and my rheumatology appointments have all been via phone calls which are about as interesting as watching paint dry.

In regards to Covid-19, I’m still shielding and my shielding dates have been extended until March 31st. Although this time I can leave the house for medical appointments and for exercise. Shielding the first time round was tough, especially the longer it went on, so this change was very much welcomed. Some days it’s hard and I miss the simplicities of going for a meal and seeing a film at the cinema. Other days are easy and I find that I quite enjoy being in my own bubble and doing my own thing. I’m not a social person, I wouldn’t label myself as unsociable, more introverted. I have a very small group of friends and I think being quiet and introverted definitely helps during lockdowns. I imagine that social butterflies are finding it tremendously difficult and are climbing the walls for social interaction.

To keep myself occupied during shielding I read books, I’m currently reading the Scarpetta series by Patricia Cornwell, which were recommended to me by my mum. I love them, however, Scarpetta is a forensic pathologist so there’s a lot of scientific wording used and some days my brain fog just won’t allow me to take it all in…and I’d be lying if I said I hadn’t had to google a few things. There’s 24 books in the series and I’m slowly making my way through them all, I’m only on book 9 so they’ll keep me occupied for a while, they are hands down the best books I’ve read in a while! I have been watching far too much TV (and then I feel guilty for not reading). I say far too much TV because generally I’m not someone who watches a lot of telly or films. I go out for walks with the dogs every other day because I physically can’t walk them daily, it becomes far too much for my joints and my pain and fatigue levels shoot up. I’ve seen some people saying this is the hardest lockdown so far but for me, it’s the easiest but that’s probably because I can leave my house this time.

I received my first dose of the Covid vaccine, which is something I really wanted to write about because I have seen a lot of people worrying about it. I had the Pfizer vaccine. If you get the annual flu jab, I would say it feels like that going in, it isn’t painful. I was asked some brief questions; if I’ve had a Covid test in the last week, if I have any symptoms of Covid and if I had received any other vaccine in the last week. Once the questions were answered the vaccine was administered. The longest part of the process was waiting the 15 minutes afterwards, which I’m sure just applies to the Pfizer vaccine, with the other vaccines I think you can leave straight away. I had my vaccine around 5pm and for the rest of the evening I felt no ill effects. However, the next day I woke up with a crippling headache, a slightly sore arm, which I expected, and fatigue. In the days running up to the vaccine I was already suffering headaches so I think the vaccine exaggerated it. I already suffer fatigue so I was dealing with fatigue from lupus and fatigue side effects, it was like fatigue on steroids. At 7.30 that night I gave in and went to bed but I felt a lot better the next day. I believe headaches and fatigue are the most reported side effects. All in all it was easy and the side effects didn’t last too long, all you need is a lot of water, paracetamol and a good sleep.

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I suppose it’s time to discuss lupus. I’m still handling Mycophenolate well, I haven’t had any side effects from it, overall I think it’s a landslide better than Azathioprine. My daily symptoms remain the about same but I think it’s doing a much better job at controlling my lupus from going haywire. I haven’t had a phone call about abnormal blood test results in a while. However, I can’t put that down solely to Mycophenolate, due to Covid I haven’t been having my blood tests as regularly as I usually do. And, there has been times where I’ve felt so unwell that I think they would have come back somewhat abnormal. I know what normal lupus pain is and what ‘uh-oh’ lupus pain is and there has definitely been some uh-oh lupus pain. The snow and minus temperatures we’ve recently had haven’t helped, the cold weather seems to seep into my joints and once the cold is in my joints my other symptoms snowball. Over the years with lupus I’ve found January-March are some of my worst months, I cannot cope with the cold, which is a shame because winter is my favourite season (very unpopular opinion, I know!).

Moving to the uh-oh lupus pain. It started about a month ago and I genuinely thought and in some ways still feel like I’m heading down the road to steroids. Some days my fatigue is as high as the Burj Khalifa and I’m taking naps, which for those who know me, it takes a lot for me to give in and go to bed for a couple of hours sleep. I’m really struggling with concentration and brain fog. The other day I was making a cup of tea and was about to put the milk cap into my mug instead of back onto the milk bottle. I’ve put bread in the fridge and cheese in the bread bin. Thankfully I realise what I’m doing so no milk cap ended in my tea and the bread and cheese went back to their respective homes.

I’ve been suffering from intense headaches, the GP believes I’ve had a migraine without aura and a tension headache…simultaneously to really brutalise the pain. I was prescribed Rizatriptan, which I was told would make me sleepy and that I should sleep well…that is not how it went down. It gave me bizarre dreams and I kept waking up. It was like the time I took morphine and instead of knocking me out, I was up all night staring at the walls and ceiling until the sun rose. I never get the side effects that I desire. The pack had 3 tablets in and I took them for 2 consecutive nights and they did help but by the 3rd I was desperate for a solid night sleep that I took a sleeping pill instead. I’m still getting headaches – I always will have headaches but the migraine has finally gone. So the tablets that gave bizarre dreams did help in the end – they were rancid though, they had to melt on the tongue and they did try to make them minty but it definitely didn’t hide the bitter taste of tablets.

On top of the migraine and tension headache I have had dizziness. This was along side the headaches and I brought them both up on the same phone call with the GP. I couldn’t look out the sides of my eyes or move my head to certain angles without the room spinning or feeling like I was going to faint. The GP thinks a crystal in my ear has ended up in the wrong place so I was told to do the Epley manoeuvre to try and get it back to it’s rightful place – I won’t go into detail because it’s boring. This annoyed me a little because I have a history of crippling headaches – which we eventually learnt were blood clots on my brain that fizzled out of their own and these headaches felt pretty much identical. I did the Epley manoeuvre but it had very little affect, I was told to call the doctor back if it didn’t help but I chose not to. I appreciate my doctors but sometimes I feel as if I waste their time as well as my own, because when push to comes to shove, they do not understand lupus. Unfortunately it is a common feeling with those who have chronic and complex health issues and eventually we learn to deal with issues that arise by ourselves.

My Rheumatology appointments are still via phone call. I much prefer face-to-face, I feel like it’s easier to talk to him in person about my lupus than it is by phone. My next appointment is in March, originally it was going to be in person but a few weeks it was changed to a phone consultation. I understand why he would rather ring me than have me in the hospital, it isn’t safe for someone immune-suppressed. I feel like I can get my points across better in person then I can over the phone. It might sound odd but when I’m at a face-to-face appointment I can remember more, at home I have things that distract me and my mind can’t stay focused on the list of things I need to tell him. For my next appointment I’m going to write a list and check off each thing when I’ve mentioned it.

I think I will leave this post here. It was good to be back on my little blog! Until next time…

– Emily. X

*This blog was set up to educate and raise awareness for lupus so please don’t feel or think you can’t ask me questions about it. If there’s anything you’d like to know please don’t hesitate to contact me and I will compile things into blog posts to answers your questions. You can contact me via the contact page on here. I have never been bothered about questions regarding my lupus so don’t feel as if you can’t ask.

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 27/2/2020: unstable lupus & anaemia.

Once again, I have been neglecting my little blog, I did have post ideas but I didn’t get started on one of them. It was just one of those things that got pushed to the sides. But, the time has come to see my rheumatologist and that always gets a post – mostly for my own sanity that most details of the appointment are somewhere other than my forgetful brain.

Before I get to the appointment details I will give an update. I didn’t give a round up of the flare that started in September 2019. If you remember, my medication was switched from Azathioprine to Mycophenolate in November. I seem to be tolerating the medication so far, I had a few side effects, mostly headaches and dizziness. I still don’t class myself as ‘out of the woods’ with it yet because I did a long stretch on Azathioprine before I stopped tolerating it. I finished the course of steroids on 7th December. Despite being on them longer than I thought and wanted to be, it was a much better experience than I had in 2018, I still had side effects but they weren’t as debilitating this time round.

I’m now anaemic. The GP called a couple of weeks ago due to a drop in my iron levels. My levels were tested again on Tuesday, the nurse was telling me symptoms of anaemia – fatigue and feeling cold. I’m chronically fatigued and I have Raynaud’s, without the regular blood tests, I would never have known something was amiss. That showcases another way of how Lupus can be dangerous. On Wednesday (yesterday), the GP called again to tell me it had dropped lower and he was prescribing iron tablets. I asked if this is possibly down to changing to a vegetarian diet but he wasn’t certain as I made the change over a year ago and the drop in levels is sudden. He asked me to bring the subject up with the rheumatologist in case its lupus related or a case of unexpected anaemia.

The appointment: My usual checks of blood pressure and urine were clear. The first question is always “how’re you?” and I told him that I’m very tired and my fatigue levels have been higher than usual. He brought up my low iron and I let him know the GP started me on iron tablets yesterday. I asked if Lupus has caused the low iron but he said if Lupus interferes with iron the levels typically go higher not lower. That being said, he did reveal that back in 2015 when I developed Lupus my iron levels were low – something I was unaware of. I then asked if it was due to being a vegetarian and he said it’s a possibility but it’s also possible that my age and being female is the cause. I personally think it’s purely coincidental but having low iron in 2015 when all this started is food for thought.

I said I suppose the low iron is why my fatigue and joint pain has recently been heightened and he let me know that my other blood tests results weren’t great. My white cell count is bordering being too low again. So, in other words, my lupus is once again unstable. He showed me every white cell count I’ve had done since 2017 and there was a lot of crappy results. It seems it’s never really stable for a great length of time.

He is writing to the GP surgery regarding my white cells. In future whenever my white cell count drops too low (I believe under 3) I will be taken off immune suppressants. The immune suppressants will be replaced by steroids. My heart sank at that moment. It means steroids are more than likely in my near future. I truly can’t stand them, it’s such an awful medication and the side effects are horrendous.

I didn’t expect ANY of this at this appointment. I genuinely thought it would be a case of discussing the anaemia and him asking how I am on Mycophenolate. I’m not sure what has prompted him to write that letter to the GP, maybe he has noticed there is never much difference in me or maybe he studied my bloods in more detail and realised they never stay stable long.

I didn’t even look at the form to see when my next appointment will be, it’s either 3 or 6 months, I doubt it’s any longer than that. I’m back to weekly blood tests to monitor the borderline low white cells.

Having Lupus feels like you are constantly going round in circles and sometimes, like today, it leaves me feeling defeated and sad. But, I did get a couple more books and I’ll admit that I had two hot chocolates…possibly a creme egg but it wasn’t the best day so I think my unhealthy choices are forgiven.

Goodbye Azathioprine, hello Mycophenolate!| Rheumatology appointment 14-11-2019

If you’ve read my previous posts, you’d know that I entered a vile flare, possibly the worst I’ve experienced. During this flare, Azathioprine once again made a mess of my white cell count and we believe it also affected my liver. On October 30th, I was given the green light to restart Azathioprine. I had voiced that I did not wish to remain on Azathioprine numerous times throughout this flare but it seemed like nobody was listening to me. When you have a chronic illness, you slowly realise you’re in charge of your body and that means sometimes you have to say no to doctors and essentially, refuse treatment. Instead of restarting Azathioprine, I brought forward my Rheumatology appointment to discuss a new treatment plan.

I felt nervous for this appointment, a part of me thought my consultant would refuse to change my treatment and tell me to stay on Azathioprine. I brought my mum along with me, I prefer having someone with me at ‘big’ appointments, in case I forget anything he has said to me.

He started the appointment by telling me he has been in contact with my GP quite a lot recently – most likely discussing my blood tests and treatment for the flare. I told him I’m starting to feel better and like I’m coming out of the flare. I did question how I’m meant to be lowering the steroid dose, I was given 4 boxes of 1mg tablets and each box had the same instructions. It implied I would be on 4mg for a month which didn’t seem to fit the original weaning process we had planned. I did drop to 3mg on my own accord, something I told my consultant and he said I did the right thing. He told me to reduce the dose by 1mg each week, which means I will be steroid free within 3 weeks. This stint on steroids has lasted much longer than last years stint, I can’t wait to be free of them again.

I then explained that I feel as if we have come full circle with Azathioprine and that it’s time to give it up. It doesn’t seem logical to stay on a medication that keeps messing with my white cell count and liver and the last couple of times it’s happened, I’ve been put on steroids. He asked if I wanted to solely be on Hydroxychloroquine or if I wanted to replace the Azathioprine with a different medication. I told him I wanted to replace Azathioprine. I’m not stable enough to be on just Hydroxy which is why I was put on Azathioprine in the first place.

We have swapped Azathioprine for something called Mycophenolate which is also known as CellCept. Like Azathioprine, it’s an immune suppressant. That means it could affect my white cells and liver just like the Azathioprine but it could also be the wonder drug I’ve been searching for. It’s a bit of a gamble but you have to try these things to find out. My dose is 500mg in the morning and 500mg at night. I need fortnightly blood tests until my body has settled on it which isn’t too bad as I’m already on fortnightly tests. As of writing this, I’m on my 2nd day of the Mycophenolate and I haven’t encountered any side affects yet so let’s hope that continues. It doesn’t work immediately and it can take up to 8-12 weeks before I feel any benefit. I logged my experience with starting Azathioprine here and I plan to do the same with Mycophenolate.

I’m lucky that my Rheumatologist listens to what I have to say in regards to how I feel about my treatment plan and takes in what I think is and isn’t working. I didn’t need any blood tests at this appointment as I’d had some on Monday. I see him again in 3 months time.

At the appointment previous to this, my consultant said he will see me in 8 months time. When we left the room, I turned to my boyfriend and said “something will happen in that 8 months, just watch”. It’s funny how you’re right when your body is dysfunctional.

Onwards and upwards. Lupus 0 – Emily…I’ve lost count.

Azathioprine, steroids, blood results and anti depressants.

Steroids. Turns out I still hate them. I’ve been on them for just short of 3 weeks and I have at least another 3 weeks left on them. I was clinging to hope that this time would be different and it was, but it wasn’t the difference I was hoping for. They haven’t kept me awake for most of the night this time – well one night they did but that was because I took them in the afternoon and not the morning. My increased appetite was worse this time than last year but that side affect seems to be decreasing and I’m finding that my appetite is fading away again. My steroid rage is in full swing, little things are annoying me, it could be something as small as a noise but it will make me livid. I have experienced some difficulty in regulating my body temperature but it hasn’t been as bad as last years experience on that front. Bizarrely, the sore tongue has resurfaced – a side affect I find beyond weird. I believe that’s about it for bearable side affects.

I do feel better on them but I thought I’d feel better than I do. I’m still struggling with fatigue, it’s not as severe but it’s still quite high. It still feels like I’ve ran a marathon after doing basic things. As evening approaches, my eyes start to sting and feel heavy. Although the steroids aren’t keeping me awake, I am waking regularly through the night which isn’t entirely unusual for me. I’m still getting headaches but thankfully not as frequent. I’m suffering with joint pain and body aches. The pains in my back/sides and under my ribs is still with me, it isn’t there 24/7 but it’s happening more than I’d like. All in all, there is an improvement but it’s not an improvement to write home about.

The steroid induced anxiety is back. At first it was a jittery feeling, something that was bearable with the 10mg tablets of Propranolol but it soon became too much for that. Looking back to last year, it’s the same pattern, it starts manageable but increases in severity quickly. My hands haven’t stopped shaking, my heart feels as if it will beat out of my chest and I have the feeling that something terrible is about to happen. I can’t have a conversation without thinking “did I say something wrong? Was I off hand?”. I feel as if people are upset or annoyed with me despite knowing I have done nothing wrong. I feel very restless, I don’t like sitting still, possibly because it gives me time to sit and overthink things. I feel like I was a lot more prepared for the anxiety side affect this time round and that I’m handling it a lot better but despite that, it’s still unpleasant to deal with. It’s mentally exhausting and it’s one less thing I could do without.

The biggest difference I’ve noticed this time round is I feel sad, there’s nothing in particular making me sad. At first I thought it was because I was fed up of this flare, the constant blood tests and having weekly phone calls with my GP, not leaving the house and counting down for more painkillers. On top of that, I’m thinking about my abnormal blood results, wondering why the hell they’re putting me back on Azathioprine when I’ve voiced twice that I do not wish to continue with it. But, I know the difference between feeling fed up of my disease and everything it throws in my way and feeling sad. And, it’s just that, I feel sad. Due to my weekly phone calls with my GP he already knew the anxiety had started and he told me to come and see him whenever I needed to.

On Monday 28th I decided it was time to see the doctor about it. I sat down and before I could say anything he said “we’ve poisoned you again haven’t we?” and I said “yes you have”. We had a chat about steroids and he believes it isn’t the steroid dose being reduced that causes me to become anxious but the steroids in general. I told him I felt sad but I wasn’t sure if it was the flare getting me down or the steroids and he confirmed it’s the steroids. I told him that last year when I finished the course of steroids, the anxiety didn’t pass as quickly as I was lead to believe and it in fact lasted for a further 3 months. He pondered on what to do and he came to the conclusion that I should take anti-depressants. I was shocked and said “but I’m not actually depressed, it’s the steroids”. He told me, because the steroids are causing mental disturbances, this it the best way forward. I have been given 50mg of Sertraline and I have to take it until Spring which will cover me for the 3 months after finishing the course of steroids. They should battle both the anxiety and the sad feeling. I’m still not sure what to feel about being put on them when I’m not depressed but I’ll try anything that will possibly help. He also informed me the 10mg of Propranolol would do nothing for the anxiety and that it’s designed to help tremors and racing hearts. I have been taking Sertraline for just 3 days so I haven’t noticed any changes in my mood or anxiety as of yet.

Throughout this, I’ve been having my tedious weekly blood tests. I like my nurses but I’d really like to see less of them. The receptionist was getting used to seeing me every Monday and would say “it’s for bloods isn’t it?”. They have been up and down over the weeks, at first my white cells had got lower and my liver result had worsened. Next time, my white cells had returned to normal but my liver results remained unchanged. The next set of bloods, my liver had improved, it was still abnormal but it was nearly back in the normal range but my white cells had depleted again. And, now, they’re both finally back to normal!

Due to my blood results going back to normal, I can re-start my Azathioprine on a lowered dose. However, I no longer wish to continue with the treatment. This is the second time they have messed with my white cell count and it is the third time the dose has been altered. I started on 100mg and it wasn’t enough to control symptoms so the dose was altered to 150mg. My body couldn’t tolerate 150mg and it messed with my white cells, I was temporarily taken off it for my white cells to recover…this is when I was put on steroids last year. I restarted it on a reduced dose of 125mg. Which brings us to present day and the same story, my white cells got too low and Azathioprine was stopped, but now they’re within normal range, I can restart it on a lowered dose of 100mg. Which, as stated above, was the first dose I tried and it wasn’t enough. I’ve come full circle on it, it obviously isn’t working for me and nor do I think it’s suitable for me anymore. I’m currently trying to bring forward my Rheumatology appointment to discuss how I feel and possible new treatments.

I can’t see there being an issue with bringing my appointment forward. I just hope it’s sooner rather than later. I’m very reluctant to restart Azathioprine this evening, I’m sick of stopping and starting it and my doses being altered.

Torturous Flare and Torture Pills

I’m currently in a flare that has floored me. I would go as far as saying it’s the worst I’ve experienced since my diagnosis – I feel as bad as I did when Lupus first hit me. I can’t do anything other than sit or lay down, count the hours down until the next dose of meds and watch mind numbing TV. I can’t get through the day without having a sleep. The most strenuous thing I’ve done is shower or have a bath, I get out of PJs and straight into a clean pair. I have only left my house 3 times – to see either the doctor or nurse. It’s been extremely frustrating and I’m starting to get cabin fever.

My joint pain is horrific, it’s everywhere – shoulders, elbows, wrists, hands, fingers, hips, knees, feet and toes. There’s muscle pain, particularly in my arms and thighs. I’m beyond exhausted, as I said above, I can’t get through the day without sleeping. There’s pain in my lower back and my sides. The lymph nodes in my neck and groin are swollen and the ones in my groin are particularly painful – sorry for TMI but this is Lupus and it isn’t exactly the most glamorous of things. There’s been headaches of all different degrees, some making lifting my head difficult and others being more tolerable. I’ve had fevers of different severities, one in particular kept me awake for most of the night. I’ve felt nauseous and vomited. At times it has felt like the organs in my abdomen were being squeezed. It’s been difficult to stand for longer than a few minutes, my knees get sore and I get slightly lightheaded.

At the start of the flare, when I realised it was going to be a bad one, I decided to take morphine. I have taken morphine once before but took half the dose because I’d never taken it before. But, because of the severity of the pain, this time I knocked the full dose back and what an experience that was. I was looking forward to it knocking me out and going into a deep dreamless sleep. I took the morphine at 11pm and I was still awake (off my face might I add) at 3am. I was completely bewildered that I had taken such a potent drug that puts most people in a coma like state and I was awake. However, due to my altered mental state, I couldn’t have cared less about being awake and the hours seemed to fly by.

As the morphine wore off and the morning went by I realised I needed to see a doctor because the symptoms were piling up. I told him about my ordeal with morphine and he also looked at me bewildered that I had managed to over power morphine and stay awake. It turns out that it can be a side affect but it doesn’t affect many people. I find codeine a helpful painkiller but I can’t take it when I already have a headache because they induce headaches. I was given more naproxen and a hefty box of tramadol. The GP thought I’d benefit from a steroid injection – causing an instant rise of panic because I had a bad reaction to steroids last year. They caused intense anxiety and panic attacks. He reassured me that I would not get that side affect with the injection. Before he could give me the injection he had to get the go ahead from my rheumatologist. He asked me to return to the surgery the next morning for blood tests and said he would call me in a day or two with the results and with the rheumatologist verdict.

The blood results were fairly stable, which in Lupus, means absolutely nothing. The only one that was abnormal was my white cell count, it was low. My Rheumatologist (to my surprise and annoyance) decided against the steroid injection. I was told to return to the surgery in a week for more blood tests. I felt let down, it felt like another “here’s some painkillers, just let it pass on its own” situation. I was then left confused, he said if I felt the same after the next set of bloods, I could have the steroid injection. So, why wait?

The night before my next set of blood tests I was in one of my ‘what’s the point in having them? I’m not going’ moods. I was fed up, in pain and exhausted and I didn’t want another phone call that ended with “see how you go”. But, if I skipped them, my mum and boyfriend wouldn’t have let me hear the last of it. I felt no better, in fact I felt worse – just sitting and being awake was too much. I asked the nurse to put me down for a call back the next morning.

I waited all day and I didn’t receive a phone call, I gathered the results were either fine or he forgot. But then at 7.30pm the caller ID ‘doctors’ flashed on my phone. My CRP level (inflammation marker) was higher, my white cells had dropped further and my liver results were abnormal. I told him I felt worse and that it was resembling how I felt when my Lupus first developed. The steroid injection was now a big no, everything was out of my GPs hands and he had to contact my consultant for a new plan. Due to my white cells being low, Azathioprine (immune suppressants) have been stopped again. And once again, I’m back to weekly blood tests. Once the levels have gone back to normal I can restart on a lower dose of 100mg. I can’t see the point or logic in putting me back on them, this is the 2nd time I’ve had to stop them due to them messing with my white cells and it’ll be the 3rd time the dose has been altered. In my opinion, they aren’t working for me anymore and it’s time to try something else.

Fast forward a few days and I get the call from GP with my Rheumatologist’s verdict. Prednisolone. The same steroid pills that caused me such brutal mental torture last year. I said I’d never take them again but is there any point in arguing with my consultant? Probably not. I put my head in my hands and cried. I can’t fully describe what these pills did to my mind. They are mentally toxic and the worse part is, this dose is higher than last years. I was fine on them at first but you need to be weaned off steroids. And it was during the weaning process that the intense anxiety and panic attacks started. I’m petrified of them because I know what to expect and if it starts again I won’t stay on them. I’ll more than likely update on here with how I’m doing on them, maybe I’ll be fine?

If I had that steroid injection in the first place, would I even be on these torture pills now? My gut feeling tells me no.

Rheumatology Appointment: 29-8-2019

The delights of a hospital visit. These appointments seem to come around quickly, despite it being 6 months since my last visit. The waiting room was almost full when I arrived which meant the elderly were looking confused at a young person entering the Rheumatology waiting room again.

The usual pre-appointment tests of weight, blood pressure and urine were all fine and clear. As I went into my consultants room he informed me that my bloods were also looking fine.

Looking at my bottle of water he asked if my mouth was still dry and if the mouth spray hadn’t helped. I told him the mouth spray works but it’s more of a quick temporary fix. I also need to drink more clear fluids and if I drink more it might keep headaches at a tolerable level…which is wishful thinking because nothing will stop Lupus/APS headaches, which I’ve had a few of lately.

I told him I have been particularly sore and fatigued in recent weeks (I’ve been taking paracetamol and ibuprofen before I’ve even left my bed in the morning). I have had a busy 3 weeks with my boyfriend being on summer leave and I think it’s caught up with me.

He asked how I had coped in the recent heatwaves and I explained I found it difficult and symptoms increased. He wasn’t surprised at that.

The main topic of discussion was the development of a possible new symptom but we don’t really know what is causing it. I keep losing my balance, it’s more a stumble, I haven’t actually fallen. It happens the most upon standing but there’s no dizziness with it. It has happened whilst already standing and if I have to step over something. My consultant doesn’t know if it’s Lupus, my anxiety meds which do drop your blood pressure or my thyroid (which is already under active). He wants me to go to my GP to have the anxiety medication (propranolol) dose reduced. He also wants my thyroid re-tested as it hasn’t been tested in over a year…which was a surprise to me as I get my bloods taken every 3 months. In short, my body is trying to go from vertical to horizontal but we don’t know why yet. Hopefully it is something as simple as a medication issue and not Lupus related.

It turned out to be quite a short appointment, as I said above, it was mostly concentrated on the stumbling. He hesitated over the form for my next appointment and decided to jump from 6 months between them to 8 months. I’m not sure how I feel about that, part of me thinks it’s too long but the other half understands there’s nothing he can do for my pain and fatigue. I can’t rely on GP’s when it comes to my health issues, that isn’t a dig at them but they don’t understand my conditions as well as my consultant…I rarely see my GP about my Lupus and if I do they contact my consultant so I tend to wait it out until I see him. But, we shall see how an 8 month gap works out. I didn’t need any blood tests at this appointment as I had them done a few weeks ago.