Medication: 2018.

My medication has proved to be an interest to many people. Lupus needs to be controlled, if it isn’t then it would have a field day attacking all my precious organs and healthy tissue. I’ve noticed that Lupus patients discuss their medication with each other but rarely speak of it to others. This is not what every Lupus patient takes, treatment plans are unique to the patient.

Hydroxychloroquine / 200mg / Once a day: This is for Lupus. It’s hard to find a Lupus patient who hasn’t had experience with this medication. It’s the medication mostly everyone is prescribed when first diagnosed. It’s awful at first too, I had intense nausea for weeks and it can take up to 12 weeks before you feel it taking affect. I find it good for keeping rashes down, I initially started on 400mg but my Lupus needed something stronger, especially for pain.

Azathioprine / 125mg / Once a day: This is for Lupus. Azathioprine is the medication that suppresses my immune system, it’s the reason why I have to be extra vigilant around people who have something infectious, my immune system isn’t strong enough to fight things off. The correct medical term would be ‘immune compromised’. This is medication that buggered up my white cells and neutrophils earlier this year, resulting in an unpleasant experience with steroids (I’d have to be on my death bed to accept them again). It was only when I was taken off them for my white cells to recover that I realised that these dodgy coloured pills do in fact work a charm. Azathioprine is the reason I get reguar blood tests because it can affect your liver and evidently your white cell and neutrophil count.

Apixaban / 5mg / Once a day: This is for Antiphospholipid Syndrome. Once upon a time I took Aspirin to lower my risk of blood clots. However, my consultant believes I was having blood clots on my brain that ‘fizzled’ out on their own and that was the cause of my intense headaches. He decided to trial me on this, which is an anticoagulant – like Warfarin but it doesn’t require weekly INR testing. It lowers my risk of blood clots, strokes and heart attacks. My headaches have been reduced and they aren’t as intense. It was decided that Apixaban would permanently replace Aspirin. However, if you cut yourself, you know about it.

Carbomer eye gel / twice a day and when needed: This is for Sjogrens Syndrome. There isn’t much to say about it, it’s a gel I put in my eyes to stop them feeling dry. I’m one of those weirdos who can touch their eyeballs so I’ve had no issues with it. It works and I also use it if I have pain in my eyes which is usually a sharp pain or burning sensation.

Levothyroxine / 50 micrograms / Once a day: This is for Hypothyroidism. It gives me the hormone my thyroid is too lazy to produce itself. My thyroid is just slightly under active, hence the small dose. I haven’t felt different on this mediation but again, that’s probably due to my thyroid only being slightly under active.

Propranolol / 80mg / Once a day: This is for anxiety. This was the first medication I was regularly prescribed. I was diagnosed with anxiety years before Lupus but since developing Lupus it has heightened. It gets particularly worse on the days my pain and fatigue are at a high level. It works and if I miss a dose I start to feel anxious about the silliest things, like someone knocking on the door.

Lymecycline / 408mg / Once a day: This is for my skin. Since I’ve had Lupus my skin has decided to resemble the skin of a teenager. It works to an extent, it definitely tries but you couldn’t solely rely on it, you definitely need a good skin care routine to back it up.

Lansoprazole / 30mg / Once a day: This is a stomach tablet. All it does is protect my stomach due to taking so much medication. I can’t miss this tablet because I’d end up with horrendous acid.

I’m prescribed two pain medications, which I can request at any time from my doctor:

Codiene 30mg: I take 60mg at a time. Oddly, a lot of people can’t take codiene due to it hurting their stomachs. It does give me headaches so if I already have a headache, I won’t touch it because it’ll turn it into a migraine. But, I do find it to be helpful for my pain.

Tramadol: I very rarely take Tramadol, I can’t remember the last time I requested it. I tend to use it if I have a headache and can’t take Codiene. I don’t find it very helpful for pain. But, it is good for taking the edge off migraines.

At least one of these tablets give me vivid dreams and nightmares but I’m not 100% sure who to put the blame on but I think it could be Hydroxychloroquine or Propranolol. And, yes, I have forgotten to take them before, especially in the early days of my diagnosis. I now use a ‘med organiser’, which I have wrote about before. I also have an alarm set at 7pm everyday to remind me.

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Rheumatology Appointment: 14-06-18.

I’m sat writing this post and wondering if I should even write it at all. It was a mundane appointment, I’m not saying that past appointments have been a joyous afternoon outing. But, so much had happened between my last appointment and this one. To recap: Azathioprine temporarily stopped due to low white cells, steroids, crippling anxiety due to steroids…you can see why I thought it would be at least a little bit interesting.

I sat in the little waiting room, an elderly lady looked at me in confusion. Then another lady entered and she also started looking at me. It happens a lot, they aren’t used to seeing a 23-year-old in a department typically used by older people. I can see them studying me, trying to figure out why I’m there. I could tell them why I’m there but seeing the confusion humours me whilst I wait.

The regular checks of weight and blood pressure were fine. However, my urine flagged up again, it did at my previous appointment. My consultant remembered this and asked if my water works were okay, I told him they were fine and he wrote something in my file (I can’t read his writing so I couldn’t tell you what). But, as he wrote he said “we need to keep an eye on you”. It was just a urine infection for which I have antibiotics for. I know urine infections are common in Lupus but it made me wonder (with him asking if my water works were the same) if frequent infections are an early symptom of kidney involvement. Just for the record: my kidneys are fine and performing perfectly well.

On this particular appointment, I felt awful. I was exhausted and sore in most of my joints, I told him but he didn’t say much but then again there isn’t much he could say. He’s very matter of fact that I have an illness that causes fatigue and pain. I also informed him that I recently had a butterfly rash, which he put down to the warmer weather we’ve recently had.

I asked “did my white cells drop because my body couldn’t handle the higher dose of Azathioprine?”. Interestingly, he nodded but also revealed that someone of my age should be able to handle 200mg of Azathioprine (my dose was 150mg). He also told me that when Lupus is active white blood cells tend to drop, so he believes it’s a mixture of the two. I’ve been curious if he would eventually try and increase the dose again but when I asked he said no and reminded me that we have to test different doses out to find the best one for me.

If everything remains stable for 6 weeks, my fortnightly blood tests can be moved to monthly. I next see my consultant in August, a little bit early but he’s going to Canada for a conference. He said he didn’t want to wait until he’s back because it would be too long in between appointments.

Anxiety: the side affects of steroids they don’t tell you about.

Steroids are a miracle medication but 3 weeks into taking them, I now realise why people despise being on them. They come with unwanted and unpleasant side affects, and side affects can appear at random times – even if you have been taking them for weeks to months. Over the weekend, I was plunged into the side affect nobody talks or warns you about: anxiety.

Before I go on, because this is important to note – a couple of years before being diagnosed with Lupus, I was diagnosed with anxiety. This is usually controlled by slow release medication (propranolol).

I lowered my dose from 15mg to 10mg on Friday 18th May. I thought of this as a happy occasion. To me, it meant my time on steroids was decreasing. The weekend was quickly passing but my anxiety levels were quickly heightening. At this point, I could handle it by distracting myself with various activities.

However, Monday ran an entirely different course than the weekend. My heart was racing, I had butterflies in my stomach and a feeling of impending doom. My breathing would become heavy at random points throughout the day. During these attacks, I couldn’t sit still, I paced the living room with my racing heart and I began to get hot and clammy. I guess you could say these were panic attacks and they happened regularly throughout the day. When I wasn’t in a panic attack, I sat with the churning feeling and thoughts that something terrible was going to happen. At night, these feelings and attacks increased. I would lay in bed to fall asleep and it would start again, I’d sit up like it was an involuntary action. I started to feel mentally tormented and at some point in an attack, I bit the inside of my cheek and drew blood.

Realising this wasn’t normal for me, I put 2+2 together. I grabbed my phone and asked on Twitter if anyone had experiences of anxiety whilst taking steroids. 14 people replied to me and each person had experienced it, some saying they can’t take steroids anymore because of it. Someone told me if you have a history of anxiety, you’re more than likely to experience this side affect. I laid back down and I could hear the faint mumbling of my brothers TV. I turned my fan off so I could hear it better, hearing and knowing my brother was in the next room made me feel safe enough to sleep.

Tuesday went the same as the previous day. But by now, I was almost hugging myself. Hearing the cars outside put me on edge and I jumped at the door being knocked on. I looked at my steroids and walked away, I couldn’t bare the thought of taking them, knowing they were the cause of intense anxiety. Mum came home from work and I finally told her how I felt, she remarked how I looked on edge and anxious. I hadn’t eaten a thing all day but I knew in a few hours I’ll be taking my usual meds so I needed food. I had to force the meal down. As my bath was running, I held my hand out and it was trembling. Whilst in the bath I decided it was best that I saw the doctor the next day. I went to bed, this time bringing my dog for comfort. He must of sensed something was amiss because he slowly crept up to me, gave me a shower of kisses and slept by my side all night. I don’t care what anyone says, dogs bring a level of comfort and calm that’s hard to replicate. Knowing I had to take the steroids at some point, I took them right before I fell asleep.

I went to the doctor and told him everything. He said, because of the timing of reducing the dose and the anxiety starting, it’s most likely the steroids. He explained that steroids can cause mental disturbances. I asked, because the dose being only 10mg, if I could just stop them that day. He said if I stopped them without weaning, I’d end up in hospital. He emailed my consultant for advice on what to do, listing everything I had said and also stating I have a history of anxiety. I had to leave and wait for the GP to call me with what my consultant replied. I came home and tried to distract myself with various activities but not a lot worked.

I received the call today with what my consultant suggests. The weaning process has been sped up, I have to continue taking 10mg for the rest of the week. I will then reduce down to 5mg for a further week and then I’ll be free of the wretched things. My consultant is positive I’ll return to my normal self after the weaning process.

Everyone knows how steroids can physically affect you, weight gain and puffy face etc. But, it’s almost like you have to discover these hidden side affects for yourself. Nobody talks or warns you about this side of steroids, which is what prompted this post. If someone is on steroids and going through this, I hope they stumble across this post and realise it’s common but hardly spoken about.

In previous posts, I remarked how I didn’t think steroids were bad. However, I would now describe them as mental poison. I have felt nothing but dread and fear. This experience has restored my fear in steroids, there’s not a chance in hell that I would take them again.

My immune surpressants have been stopped.

On Saturday (07-04-18), I received a letter with the test results from my last Rheumatology appointment, bare in mind, the appointment was on the 15th March. The letter informs me that my white cell count remains too low to carry on with the Azathioprine but this is only a temporary measure. I need weekly blood tests whilst the levels return to normal and once it has I can resume the treatment but at a lowered dose of 125mg.

I spent Saturday feeling angry that I had been informed of this nearly a month after the appointment and in that time I had been unknowingly taking a medication that is potentially causing more harm than good. Not only did I feel angry but I felt a little upset because it sometimes seems like I can only get so far until I’m knocked back again.

I’m filled with dread because I’m now under medicated for Lupus, my treatment for now is just 200mg of Hydroxychloroquine and that’s not enough to stabilise me. I had thought about upping the dose to 400mg myself, but I realised that would be a rather stupid thing to do without a doctors consent. This morning, I went to see my GP regarding upping the Hydroxychloroquine dosage…it was a no go. It was a gamble anyway, he’s not in charge of my Lupus medication. But, there was a couple of other reasons: he doesn’t want to mess with my important meds and we don’t know how quick my white cells will take to return to normal, it could take as little as a week. But, that still doesn’t make me feel less dread, I’ve felt Lupus at full throttle before and it’s less than pleasant.

My last dose of Azathioprine was Friday (06-04-18) and according to my research, it should be out of my system by now. My GP and I decided my first weekly blood test should be Friday – a week from my last dose.

I’m not looking forward to climbing the blood test ladder again, I just can’t seem to surpass the 3 month mark and that’s frustrating to me. I’m just hoping that my levels return to normal quickly. My GP is going to call me with the results and if they are still low, I’m going to try and get in contact with my consultant in regards to upping the Hydroxychloroquine. I’m not prepared to be under medicated for longer than I need to be.

I’ll keep this blog updated with everything. But, if I’m honest, all I think it is, is my body not enjoying the higher dose of Azathioprine…life with a chronic illness keeps you on your toes!

A final update on Azathioprine

It’s nearly been a year since I was prescribed this medication so I thought it was time to do a final update and for all my fellow sufferers, let you know my thoughts on this immune suppressant medication.

Immune suppressants are a serious thing, more serious than I originally thought. I first realised this when the packaging came with a warning label, reading ‘cyto toxic‘, I had no idea what a cyto toxic drug was which prompted me to research it. A cyto toxic medication means the drug contains chemicals that are toxic to certain cells. The next thing which made me realise that this isn’t a simple medication was the amount of blood tests you have to have. You even have to have your blood tested before you start the medication, the test is called TPMT – I later figured out this was to show how well your liver would tolerate and filter the drug. Mine was slightly low so my dose of Azathioprine will not go beyond 100mg.

At first, the blood tests were extremely tedious, they were initially every week for 6 weeks. Then they moved to fortnightly for 6 weeks and then to monthly for 6 months. I have now reached the end of the tunnel and my blood tests are once every 3 months, if I remain stable on the medication they may be moved to once every 6 months. I didn’t mind the monthly blood tests and luckily they fell on the same day my prescriptions were ready to be picked up. I believe the blood tests are for: full blood count, liver function test (as this medication can cause liver problems) and urea and electrolytes.

My consultant gave me a two-sided information sheet on Azathioprine when I firstly commenced the treatment. One side is more or less for my GP, a lot of medical jargon that I can’t understand but it did tell me how much blood work was needed and when. It was great to have a clear idea of how long each stage of the blood tests could potentially last. I was on my monthly stage for longer than expected, it was nearing 9 months, there wasn’t an issue or I would have been alerted – I just think they forgot to move me up to the 3 monthly stage until I subtlety asked “do you know when I’ll move to 3 monthly tests?”.  The sheet also educated me on vaccines and that live vaccines are not recommended on this medication – a reason unbeknown to me, but that I also needed the flu vaccination along with the pneumococcal (pneumonia) vaccination. I was also told to try and avoid people with mild ailments such as coughs/colds/sickness bugs etc, because my immune system would be lower than normal and I would pick the bugs up easily and struggle to fight them off.

Did I find this a miracle medication? Initially this medication helped with one symptom that I’m plagued by: headaches. However, this didn’t last long and I started suffering daily headaches again. I still suffer pain in my joints daily some days better than others but at some point in the day whether it lasts 5 minutes or 5 hours, I will have joint pain. I still suffer aches usually my back, arms, shoulders and legs – I suffer achiness more so in the mornings and evenings. I still suffer greatly with fatigue and it’s made worse by doing things or going places but I cannot fault the medication for not improving fatigue as I don’t believe any medication will help.

It doesn’t sound like Azathioprine has helped a great deal, but when I think back to when I was solely on Hydroxychloroquine, I am better and this medication has slightly helped. I can do just that little bit more on ‘good days’, however if I overstep the mark on a so called good day, I still pay for it on the days that follow.

Considering I was told I would pick up bugs and virus’ easily I have suffered from very few one being a cough at the start of the year that lingered for months. And more recently, a virus that spiralled me into a flare I couldn’t control and needed medical intervention. I have suffered very minor bugs but they seemed to be 24-hour bugs that I managed to fight off. I made a conscious effort to avoid friends and family with bugs, my friends have been greatly understanding of this and they cancel any plans if they or their children come down with a cold/bug. Of course, it’s harder to avoid with immediate family, especially when we are in the same house but they also make an effort to not spread their germs, they do this by not getting too close to me or touching me. I also keep a bottle of hand sanitizer in my handbag for whilst I’m out and I also have bottles in the house.

Have I suffered any side affects? Oddly enough, I have suffered none. I say ‘oddly’ because when I started Hydroxychloroquine (very tame in comparison to Azathioprine) I suffered horrendously with nausea and could barley eat. However, I have noticed a difference in my teeth, yes I just said my teeth…go with me on this one. I’m on a few online support groups for Lupus and I was alerted that immune-suppressants can cause dental problems. I asked my dentist this and she confirmed that they can indeed cause many issues. I have noticed that I can no longer use toothpaste that has a whitening agent in because it causes horrific sensitivity. And since I’ve mentioned I suffer many auto-immune diseases and take immune-suppressants, my dentist has started to put a fluoride gel on my teeth and gums at every visit, the first time she used it she told me “this lowers your risk of tooth decay”. I’ve also been told numerous times to use Sensodyne toothpaste and I did but that toothpaste is truly vile. It’s safe to say that I no longer put off going to the dentist and when I get my reminder letter, I’m straight on the phone booking in.

Would I change my treatment plan? At the moment, I would be very reluctant to change my treatment plan. It’s not a little change, it’s a whole new medication that I’d have to look into, potential awful side affects, possibly going through all those blood tests again and not to mention…learning how to spell it, seriously why are they so difficult to spell?! I honestly believe if I changed medication, a year later I would be writing about how I feel exactly the same. At the end of the day, the medication is there to control Lupus and I think Azathioprine is controlling mine, despite still suffering flare up, I have suffered no tissue or organ damage *touch wood this continues*. There is no medication that can eradicate the symptoms of Lupus. I once told my consultant “I think this is as good as it’s going to get” he didn’t verbally reply but gave me a nod as if to confirm what I just said was true. I will always feel Lupus because it demands to be felt. If my consultant was to propose a change in medication because he thought it would be best for me, then I would. But, for now I think I’ll stick to Azathioprine because like I said, I think this is as good as it gets…unless my teeth start falling out, then I’ll change my meds faster than a speeding bullet.