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.

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I recently had one of my worst flares to date…

The start of August wasn’t great, my Lupus intensely flared up. I picked up a virus and due to that, it went haywire causing an array of issues. I’m late writing about this, it happened from Saturday the 5th of August to, well, now as I’m still recovering. You unfortunately don’t wake up one morning recovered from a flare, it can take days to weeks or even months to recover.

Friday the 4th, I was my usual self, maybe a little more fatigued than usual but nonetheless – nothing dramatically wrong. However, that night I slept dreadfully, I fell asleep around 3am but even then I woke every hour with a nauseous feeling. Every time I woke up, the sun was getting brighter and at around 8:30am I decided to just get up. I sat outside with a cup of tea and by 9:30am decided to try go back to sleep, as soon as I got into bed I was back up and vomiting. By 12pm I had vomited 3 times and had given up on sleep entirely.

Sunday the 6th. I woke up, from another sleepless night and feeling worse. This was the day my Lupus started to rear it’s ugly head. I was sat drinking water and I was almost certain I was about to faint, luckily I didn’t. But, I was shaking, my head was pounding, my joint pain was relentless and I started vomiting again. Just keeping my eyes open was exhausting and I couldn’t bare the thought of moving. I couldn’t even tell you what conversations I had and with who that day, I was so exhausted and in pain I can barley recall the day. What I can recall though, is it was the first time since my diagnosis that I rang out of hours for help. I was taking Tramadol and even though it dulled the pain, it wasn’t helpful and I was still suffering. They told me I had to see a doctor and on the way there I said to myself “I can’t be bothered with this illness anymore” because I genuinely didn’t have the energy to try and fight back. I wanted to curl in a ball, cry and honestly, disappear. Luckily, I was the only one in the waiting room so my wait was less than 5 minutes. The doctor took my temperature and it was raised, checked my ears and listened to my chest and they were clear. He checked my throat and he said it was red, he had me do a urine sample which was also clear and he checked my stomach which was sore as he pressed down on it. His diagnosis was a virus or the start of laryngitis, since the visit my throat hasn’t got worse so it was a virus all along. He couldn’t prescribe me anything stronger than Tramadol, so he prescribed me more to keep taking. After the checks and prescription were done he had a chat with me, he told me I need to get my Rheumatology appointment brought forward and told me that I really need to go on steroids. As soon as I heard the words “you need steroids but I can’t prescribe you them” I wanted the ground the swallow me. From the start of my diagnosis, I have been dead set against going on steroids unless I’m told I will die without them. I am yet to bring my Rheumatology appointment forward for the fear of being put on steroids.

This week has been rough. I’ve eaten next to nothing, my joints have been so sore and my fatigue just doesn’t seem to be improving – it feels like I’m at a dead end.
I try my very best to stay optimistic but this week has tested me, I’ve found it very difficult to take part in everyday activities and do basic tasks and I’ve felt extremely low in mood. I hate the thought of people thinking I’m snappy or horrible, I try my best to not be and it’s for those people I try my best to keep a smile on my face. My mood is slowly improving but I’m still struggling with a lot of pain, aches, headaches and nausea, but thankfully I haven’t vomited since Friday.

It’s the first viral infection I’ve had since being put on immune suppressants, which is good going as I have been on them since November. I was told I would more than likely constantly catch viruses and bugs. And, because of my lowered immune system it’s taking longer for me to shift it.

I can only hope that I start to properly improve this week. This has probably been my worst flare to date.

Lupus and being abroad: diary entry 2 (19/6/17)

I wouldn’t say today was a write off, but it wasn’t the best day. I didn’t expect my first “bad” day to be on my third day here, I expected it to be at least 5-6 days in. But, I guess that’s Lupus to T – unpredictable. 

What confuses me the most is, today is cooler than yesterday, there’s more of a breeze. I mean, yesterday Lupus had its moments but it seemed to clear after an hour or so – especially after cooling off in the sea. Not today, I can’t shift it. It’s a feeling I struggle to describe (I say that a lot, don’t I?). My eyesight goes fuzzy and I get lightheaded, sometimes I think I’m about to faint if I don’t sit or lay down. My head starts to pound or feels like it’s swelling. It’s generally just a very uncomfortable/unwell feeling, which sucks whilst you’re trying to have enjoy your holiday. 

I did find myself some shade to sit in whilst having a cold drink, that seemed to help a little. During my shaded rest, the sun crept behind the trees which shaded my sun lounger so I went back to lay there and continued reading. All I’ve really done today is read and drink very cold drinks with ice in – I can actually enjoy a drink with ice in as I’m practically Raynauds Phenomenon free for 2 weeks. Saying that, I haven’t dipped in the pool all that much today because as soon as I get in I’m covered in goosebumps, but it is a very cold pool, but it hasn’t aggregated my Raynauds at all. 

I’m very tired but again, it’s a mix of the heat, general Lupus and I’m probably still recovering from the travelling. I haven’t suffered too much from joint pain, it’s still there especially in my knees and elbows – as I’m writing this it’s starting in my left wrist. Just like at home, it comes and goes when it pleases. I’m still regularly taking paracetamol and ibuprofen, I don’t really want to touch codeine in the day time. I don’t want to be in a haze in high heats or around water. I’ll take it on an evening before going to sleep. I’m still chugging water like it’s going out of fashion but my favourite drink today has proven to be Orange Fanta, it’s a bit more refreshing than plain water. 

I seem to be taking the sun well on my poor feet, I’ve been sat with my beach cover up over them as they feel like there on fire! My ears too, apparently the sun has taken a liking to those. Don’t worry, I won’t be returning to the UK with just tanned feet and ears – the rest of me is tanning as well. 

I’m back in the hotel room now, with the air conditioning. I’m probably going to lay on the bed for the rest of the afternoon to try make me feel a bit more human. Mum and I will probably venture back out in the early evening.

I’ll be sure to keep this updated as much as I can. Thank you for reading! 

Lupus and being abroad: day 1 (17/6/17)

Hello from beautiful Turkey! The weather today has been glorious, reaching around 33°c. This is my first post on how I’m surviving in this heat, because as most of you know, Lupus and heat don’t tend to mix well. 

I arrived at my hotel at 4:30am, although it was 2am UK time…and I had 45 minutes sleep because I’m apparently an overgrown excitable child. The flight was, meh, it was okay. I don’t mind flying, in fact I love take off but that’s about it, after an hour I start to get sore and extremely uncomfortable. Mix that with screaming children and a screaming need for nicotine (I’m an ex-smoker and I’m probably too addicted to my e-cigarette) it’s just not a fun situation to be in. But, needs must if you want to end up in a beautiful place like this…

7am today. I watched the prettiest sunrise.

So, to deal with the intense heat? Water, and I mean, chug so much water down that you think you might explode. Surround yourself in water, get in that sea and pool…although I found the pool pretty cold so I preferred the sea. This hotel has two pools so I’m planning on seeing how the other is tomorrow. 

I also applied factor 50 suncream regularly, topped with a factor 30 facial sunscream and sun protective balm for my lips and nose…if you ever need suncream, come to me. 

I took painkillers often as well, however they haven’t stopped my headache which I think is a combination of fatigue, heat and generally just having a disease that gives the gift of headaches regularly. My left ankle started to seize up later this afternoon, mum thinks it could be a side affect of the glamorous flight stockings I had to wear. They are so tight and the tighest point is at the ankle. Since I also have Antiphospholipid Syndrome it’s crucial I wear them as flying is a big risk factor for me developing a DVT. 

Overall, I’m pretty happy with how I managed my first day. There was some points of the day I thought “this is too hot, if I don’t cool down asap, I think I’ll die on this lounger or just disintegrate into it”. I’m not naive and I expect some days to be tough in the heat, but I’ll carry on with what I’m doing because for the most part, it works. 

I don’t plan to update this blog everyday with how it’s going because I think it would eventually get tiresome for you to read. However, I am planning a to write more than just this and if a day doesn’t go quite how I like, I’ll let you all know. 

I have to get a shower now because my hair and body is full of salt, but I’ll leave you with some pictures of my day! 

Still alive…didn’t disintegrate into my lounger.

View from one of my many loungers today!
Another view…from another lounger!

Rheumatology appointment | 1-6-17.

Hello! It’s been a while since I’ve updated you all – I’ve said it before but I haven’t really had any ideas regarding posts. That being said, I’m going on holiday later this month and I’m planning to write posts whilst I’m there. They will mainly be concerning how I’m handling the heat, as many of you have probably guessed that Lupus and heat typically don’t mix very well. But, I’ll be damned if Lupus stops me going on holiday! 

 I had my check up with my consultant earlier this month. There was a 4-month gap between this visit and my previous appointment, which is fine but Lupus is so unpredictable and changes daily that it’s near impossible to remember and tell him all symptoms I experience in between visits. I tend to highlight the most bothersome and most occurring symptoms to discuss. 

All usual checks (those being: weight, blood pressure and urine) were absolutely fine. One of my first points to make was my headaches are staring to re-occurr again except there is a slight change, sometimes they aren’t particularly painful. They feel like a pressure – I describe it as feeling like the Red Queen from Alice in Wonderland with her huge head because it feels like my head is just swelling and could burst at any given moment. He asked how long this sort of headache lasted and I said it could be anything from an hour to a day. Aside from my Red Queen headaches, I do still get my ‘usual’ headaches that can be anything from mind to excruciating. A few weeks ago I had a migraine that lasted several days. 

My next point was sleep, it’s becoming an issue. I told him I typically fall asleep fine, my issue is staying asleep…which made me look like a liar because I couldn’t fall asleep last night, I eventually went to sleep at 9am this morning for a grand total of 4 hours. He asked if there was a reason why I struggle to stay asleep, sometimes it’s pain but others there’s absolutely no reason for me to keep awakening. I told him it’s odd because I’m chronically fatigued, to which he assured me it’s a common issue with Lupus patients. We discussed treatments but he told me he would be hesitant to prescribe them because of the addictive nature of the medication, which I fully understand and accept. I admitted to sometimes using over the counter remedies, which he was fine with. 

My final topic was holiday advice, at first he said don’t go…but then he gave me actual advice – things I already knew but I thought it would be best to throw it in there in case he had any other tips. I have to get a hat, wear factor 50 suncream and apply it often, drink a lot of water and to try Turkish watermelon…doctors orders, I’ll have to get myself the biggest wedge of watermelon I can find! 

I didn’t have any blood taken at this appointment, I get it tested so often by my GP that it would have been a waste of time. All my blood tests are fine and I’m still tolerating the medication. He said although I’m still experiencing symptoms, it’s in my best interest to stay on my current treatment plan. It came across to me as a kind way of telling me this is as good as it’ll get. I’m at a point where I fully understand I probably won’t ever be symptom free, I just want it under control as best as it can be. 

My appointments with my consultant have gone from 4 monthly to 6 monthly and that’s good news to me. 

A little update…

Not much has been happening, apart from being put on new medication – which has been going well, I haven’t had any side affects to it yet, however it’s too soon to report if I feel any improvement. I have started my weekly blood tests and my Friday mornings are now booked up with a nurse. At some point I need a pneumonia vaccination, I was going to get one on Friday 11th but the nurse didn’t have one to give me. This new medication can put me at a greater risk of picking up viruses and infections. I’m not sure if viruses and infections are worse for those with Lupus than someone with a clean bill of health. I don’t think my GP has the letter from my consultant yet, he’s going to include that I need treatment for my spots, I hope he recommends a treatment because I can’t use the cream they keep telling me to use. 

My appetite has returned, I’m now eating more, some might say it’s still not enough but at least I’m eating more than half a meal a day. Let’s hope it stays!

I have been oddly busy, I say oddly because I’m never busy. That’s by choice because I haven’t yet found what my ‘limit’ is so I limit what I do to avoid a flare. I’ve been doing my Christmas shopping, on the first day of shopping I did way too much and spent the next day recovering. I left a few days inbetween shops but I can happily say most of it is now complete, I think I just need one more day around the shops and it’ll all be done. This year has been much better, last year I had only been diagnosed for a month, I was still waiting for my medication to kick in so I struggled to do it all in time. 

The last few days I’ve been getting weird pain in my sides, I say weird because it’s hard to describe what kind of pain it is. Sometimes it’s sharp and sometimes it feels dull. My Raynauds has been playing up but I think that’s due to me spending so much time outside in the cold. Today, I have some joint pain in my right elbow and hand. I think it’s from doing all that shopping. I’m also pretty tired today, my eyes are stinging but other than that I’m all good!

Saturday 22nd October, 2016. 

I’ve had a headache (shock horror) for 2 days, actually I’d say 3 days. I know every post I have written has said I’ve had/got a headache but I think this is more of a migraine. It’s preventing sleep, I can fall asleep but I keep waking up and my first thought is “my bloody head feels like its haemorrhaging” that’s not me being dramatic, at some points it really does feel like that. I usually cope very well with headaches, they have become more or less part of my daily life. 

Yesterday I got my nails done, and due to lack of sleep I applied make-up for the first time in what felt like forever. It wasn’t bad weather, usual October weather the sun was out a little bit but it was really bothering my eyes. The pain is like a sharp razor blade kind of pain. Sometimes fresh air helps my headaches, but not for this one. 

I tried to sleep after that but nope, so I just sat watching Netflix. Not the best cure for a killer headache but what else can I do? Read? That’s not helpful either. Sitting in a dark room doing nothing just made me concentrate on the fact my head  felt like a drum was beating inside it. I eventually got a bath because my Raynauds was acting up and I felt ice cold. Then I watched Stand Up To Cancer, which didn’t help because I cried at all the stories.  

I fell asleep fine last night but I kept waking up, I drank nearly a litre of fluids through the night. I’m not sure if there is a connection between migraines and a really irritating amount of excessive thirst or if it was Sjogrens making an appearance. Anyway, I’d drink then minutes later it was like I hadn’t drank in hours. I remember being sat up in dim light and seeing black ‘specks’ so this is definitely a migraine. 

Today, my head is still in bits. I’m trying to keep myself in dark places. I’m absolutely exhausted and the dreadful colour under my eyes say it. I actually think I’m becoming slightly delirious, my brother asked me what I was doing and I said “cleaning the kitchen” I was actually cleaning the bathroom. It’s okay, you can laugh at that, I did. I’m still ridiculously thirsty, it’s like a bad hangover that’s lingering for days. Painkillers do help, they take the edge off but once they wear off, I know about it.

There’s not much else to say, there’s not a lot you can say about headaches except they suck. I’m probably going to try sleep today, watch some movies and wait for it to go away…I have no desires to do anything else. 

Monday 17th October, 2016.

I slept bad last night, for once it’s not Lupus causing poor sleep. My top and bottom wisdom teeth have decided to start coming through. Well, I say start but they’ve actually been coming through for a while now, it’s only now and then it causes pain. I woke up every couple of hours, the longest I was awake was 2am-4am. I eventually drifted back off when my next dose of pain killers kicked in. I woke up about 7.30am and decided to just stay awake. Tossing and turning eventually got dull. 

Given my bad night sleep I’m pretty much exhausted. I mentioned in my last post that I was struggling with fatigue and I still am. I just can’t seem to shake it off. I wake up and my eyes are burning, it’s like my body is begging me to go back to sleep. I have zero motivation for anything and everything just feels like a massive task at the moment. Although, I did go shopping with my mum on Saturday, I wanted to get out from the four walls that constantly surround me. I finally saw Alice Through the Looking Glass, Alice in Wonderland is my all time favourite fairytale…if you’d class it as a fairytale? I love it, and the Mad Hatter, he’s my favourite.

Since my fatigue has been bad, so has my appetite. I discussed my eating with my mum on Saturday whilst sat in a cafe, we both agreed I don’t eat nearly as much as I should. I just never feel hungry or feel like eating, sometimes the thought of eating a meal feels more like a chore. That could be the fatigue coinciding – too tired to sit and eat a meal. There is days I don’t eat at all, sometimes it’s nearer 2 days before I will eat something. Sometimes it gets to about 7pm and I remember I haven’t eaten yet and I’ll just eat something because I know I need food. Most of my calorie intake comes from drinks. I definitely think fatigue and appetite are closely linked. It’s a viscous circle, it’s common sense that food gives you energy, but what if you have no energy to eat or the thought of food nauseates you?

The last few days I’ve had a dull ache in my back, it’s not a major or crippling pain. I’ve decided the ache is too low down to be associated with my kidneys (kidney problems are common in Lupus). I think it’s more muscular.

Despite alternating paracetamol and ibuprofen every two hours for my teeth I still have a niggling headache. Niggling in the sense that it’s up and down in severity. It seems to be holding off most of my other symptoms, however, my knees have a stopping and starting pain in them.

I’m starting to grow nervous about my next consultant appointment, I have an ever growing list of things to discuss with my doctor. One thing is my skin, I posted a question in a Lupus support group asking if anyone else has suffered bad skin since diagnosis, they have! I’m glad that I’m not the only person, I tried researching this on my own but I couldn’t find any solid answers or evidence that Lupus can cause bad skin. Obviously I will mention my headaches, usually that’s his first question anyway. I think I’m anxious at the thought of him trying me on a different treatment, the next one is Methotrexate – if you look it up, it sounds like a horrible drug and I’ve heard it’s more affective in the form of an injection. I also think I’m anxious because as I’m in the waiting room, it’s really the only time I sit and think “woah, this gig is actually for life”, that sounds silly I know, because I obviously know my diseases aren’t curable. I don’t usually give the whole ‘it’s not curable’ much thought, maybe that’s hope that one day it will be, I don’t know. Between my appointments, I’m constantly making a mental list of what’s got better or worse, what’s changed or what’s new and over the months, it just seems to grow. 

My hair, it’s started to fall out again. I’m not particularly worried about it, I have quite thick hair. You might look at the picture and think “it’s not that much” but it’s still disheartening to see it fall out as I brush it. It’s like a bitter reminder that my immune system is screwed up. I’m just clinging to the hope it stops or doesn’t get worse. 

I’m holding up pretty good all in all though, just struggling mostly with fatigue and my appetite. I’ve rambled enough and need to sort my medication out. Thanks for reading!

*I can see how many times this blog has been shared by family, friends and friends of friends. I can also see how many people have been on here from Facebook to read my posts, I just can’t see who you all are! So I’d like to say thank you to everyone who has read and shared my blog. I truly appreciate it, you’re helping raise awareness which is why I started this blog in the first place. Thank you so much! Much love to you all – Emily xo*