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.

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Azathioprine, steroids and symptoms resurfacing.

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

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

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

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

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

A week without immune suppressants…

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

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

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

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

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

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

Rheumatology Appointment – 30th November, 2017: Changes I wasn’t expecting.

I had a funny feeling that something was going to change or happen at this appointment, I’m not sure why, but the last time I had this feeling, my whole treatment plan changed. It could just be that I’m a superstitious person, but so far that feeling hasn’t let me down. Although the change is only minor, it was enough to irk me.

If I’m honest, I was already in an irritated mood, it was snowing with bitter winds. Which, I admit, sounds like a stupid reason to be annoyed but when Raynaud’s sets in and you can’t feel your own limbs, you get irritated. I think I made it worse for myself by imagining the things I’d rather be doing than trekking to the hospital in snow and winds.

There’s something about the waiting room which depresses me, either because it’s a room I’ll spend so much of my time in or because it’s a hospital waiting room – probably both. I sat and read a mind numbing celebrity gossip magazine until I was called by the nurse for the routine checks of blood pressure, weight and urine.

I was expecting all 3 to come back clear as they usually do, which my weight and blood pressure did but for the first time my urine did not. It showed positive for protein, something usually not to worry about but I have researched mostly everything you can about Lupus and I know that protein in urine can be an indication of kidney involvement. I asked if that was anything to worry about and the nurse told me that people can naturally have protein in their urine and there’s usually nothing to worry about. She wrote my details on the bottle, I assume the sample went to the labs for further testing.

I struggle immensely with figuring out what is significant enough to tell my consultant, there was 6 months in between appointments this time and I think it’s too long. I decided that the most significant issues were the two bad flares I’ve had since my last visit.

I started with the flare that was caused by a viral infection, the flare that resulted in a visit to an out of hours doctor. I mentioned that the doctor I saw had said I needed steroids to get the flare under control but I could only get them prescribed from my consultant. I wasn’t surprised to see my consultant look a little puzzled by that. He confirmed my suspicions that, if I need steroids, my GP can prescribe them.

I proceeded to tell him about the flare that was so prolonged that I thought it would never end, the flare caused by insomnia. I explained that I slept for 10 hours in a week. I told him my joints were painful and swollen, that I had headaches and pretty much any other symptom you can think of, he said no sleep for that length of time will do that to me. I have spoken to him about poor sleep in the past which he confirmed is all part of Lupus.

The appointment moved onto the usual questions, are you still having regular headaches? “Yes”. Are you still having joint pain and aches? “Yes”. Have you been getting rashes? “No”. Slight lie, I have but they don’t stay long and ironically after the appointment, I had two – both on my face.

One of the hardest things for me to overcome and it’s something that I’m still trying to overcome, is that I’m not a pain in the bum to doctors, family and friends. Which means, admitting that you don’t think your current treatment plan or dose is working as best as it should. Which brings me to the part of the appointment I wasn’t expecting…

Are you having more good days? “No”. Are they mostly bad days? A thought flickering through my head to be honest with the doctor trying his best to help, “yes”. There was a slight pause in the conversation and then he told me he would like to increase my dose of Azathioprine. He asked me if we should increase it to 125mg or 150mg. It’s was like he was asking if I wanted the small bag of sweets or the large bag. I was more in shock because in the past I was told the dose would more than likely never go above 100mg, and if it were to be raised, doctors would need to be cautious due to low TPMT test results. I shrugged and said “I’ll leave that decision to you”.

He raised the dose to 150mg and lowered my appointments to 4 monthly. He handed me a prescription, a blood test form and a form to hand to reception. As I was leaving he said the sentence that irked me “your blood tests are now fortnightly”. It had taken over a year to just get to the 3 month mark for blood tests and now I’m back to fortnightly. I know nobody is to blame, but it’s annoying.

I went to the hospital pharmacy and then on a hunt for the biggest bag of Maltesers I could find…I found a bag and I also found Toblerone and I’m yet to find a regret.

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 5. Would I recommend it?

I’m back in little old England, I landed at 5am this morning after the most dreadful flight – a toddler screaming for the majority of a 4 and half hour flight isn’t what anyone wants. I started travelling last night at 10pm Turkish time (8pm British time), so it was a long night of waiting around and what seemed like endless security checks at Dalaman Airport. 

I was awake for just over 24 hours, which is a risk in itself with already having chronic fatigue, you never know if forcing yourself to stay conscious for such a prolonged period of time will cause a flare up. For me, it usually does, I’m currently feeling extremely fatigued, aching, headache and I keep getting waves of nausea. 

Before I get to the whole “would I recommend putting yourself in blazing heat with a illness that hates heat” discussion I thought I’d recap on my final two days.

Thursday: Wonderful, despite the temperature reaching a firey 40+° and me being on codeine for joint pain in the knees. I was under a parasol for the whole day and yes, probably completely oblivious to the fact the temperature felt like fire around me due to being on codiene. It was our last day on Coco Beach, we stayed on the beach until the Garson no longer took orders. I honestly couldn’t tell it was that hot but again, codeine was clouding my mind. On the evening we walked around Icmeler, catching up with friends from a previous year of holidaying. It was just a lovely day. I took tramadol that evening and slept better than I did the whole holiday. 

Coco Beach.

Final dip in the sea at Coco.

Friday: In contrast to Thursday, this was a horrible day. It was 45°, that’s what the barman told us at around 5pm so during the afternoon it was probably hotter. My day started later, I got to the private jetty at 10:30am. I couldn’t cope. I was in and out of the sea like a yo-yo, as soon as I was out, I needed to go back in. I felt like I was going to hit the deck at any moment. We went for lunch and sat in the shade with cold drinks, that seemed to bring me back around. As soon as we got back to the jetty, I deteriorated again. It’s like a sense of being restless because you just don’t know how to gain control of the symptoms you’re experiencing. In the end I left the jetty and went back to the room and laid on the bed for about 30 minutes, I took a shower and then started packing. There’s absolutely no way I could of sat in the sun any longer. As you know, by nighttime I was embarking on my long journey home. It was an extremely long and tiresome day. 

Would I recommend it? Yes. Do it, go on holiday. Lupus strips us of so many things in our lives. We put up with so much, we’re beaten down by our own bodies daily – why shouldn’t you be rewarded for being a total badass and fighting yourself daily? 

Yes, there will be bad days, but don’t feel guilty for needing to go rest in your room or sit in the shade. If I’m honest, I spent the majority of my holiday in the shade, I didn’t put myself in the sun for prolonged periods of time, if you do that then you are asking for trouble. I understand some Lupus patients suffer a considerable amount in the sun and their rashes turn to big blisters, it’s a no-brainer on why they avoid holidaying abroad. I do suffer in the sun, it does bring me out in rashes but not the extreme scale that it blisters. If you react moderately well in the sun, try it. It’s 14 days out of 365, you have nothing to lose by trying it. So what if I flared? I was going to flare anyway with the damp weather in England. Instead, I chose to flare in the sun and a waiter brought an ice cold drink to my lounger. You see, that’s the point, we flare in cold weather and we flare in hot weather…we can’t win. 

Some people are probably still wondering why I did it to myself, I technically brought bad days upon myself. Why? Why did you make yourself suffer? And the only answer I have for that is I refuse to let this illness control every aspect of my life. I will never bow down to it. And I certainly will not let it frighten me, not now and not ever. 

Lupus and being abroad: diary entry 4.

This post is going to be a mixture of how I’ve been the last few days. Like I said in a previous post, I’ve had fairly equal days in terms of being good and bad. However, I have noticed in the recent few days my days have almost been split, I’m fairly good in the morning and I quickly decline by afternoon. The temperature is rising as the days go on and the breeze is slowly withering away to nothing. There usually is a breeze in the morning hours but it seems as it gets to 1pm it suddenly stops, and returns at late afternoon/sunset. This means by afternoon I’m typically under the parasol or cooling off in the water. 

I have noticed I’m affected more when my head is directly in the sun. Which is where a sun hat comes in handy, the downside is the hat makes my head sweat and can make me feel worse, it almost gives a sense of over heating. 

I thought I was doing well on the rash side but on a morning walk earlier this week I developed one. I was in Turkey in 2015, I was in limbo with getting a diagnosis and I developed a rash on my chest, just next to my shoulder. The rash I developed this earlier this week was in the exact same place. At first it didn’t bother me, in fact I hadn’t spotted it, my mother did whilst we were in the sea. But, as the day wore on, it started to itch and it became hot. The heat from it could of just been my skin in general as my shoulders were slightly red but my Lupus rashes are generally hot to touch. The rash was slightly raised, it lasted longer than I anticipated, a day and a half. I kept applying factor 50 and Nivea Soft cream. I always find Nivea Soft soothes Lupus rashes, I didn’t think ahead to pack it but luckily the little shop in the hotel sells it. 

The rash on my left shoulder/chest.

I thought my sleep issues would have settled during the holiday, with being in the sun and around the sea but they haven’t. I usually sleep on my right side but last night I couldn’t lay on it. I had pain in my right hip, like stated, I sleep on my right side so I kept reverting back to it and being awoken by pain. It wasn’t just last night that brought poor sleep, most nights have been restless, just like at home. I woke up feeling very achy and a bit out of sorts so I had a late start, I just sat in bed munching on biscuits (Milka biscuits are delightful, they’d be even nicer with a brew though) and strolling through the internet.  

As the holiday goes on I am starting to struggle more. I’m becoming increasingly fatigued and starting to have an ‘unwell’ feeling, again, it’s a feeling I can’t perfectly describe. But after all, I’m no longer designed to be in the sun, I’m not meant to be sat in it, people must honestly think I’m mad for being here and in a way I totally am mad but you can’t say I haven’t tried it. Mum overheard a woman on the beach yesterday saying she declared Lupus on her travel insurance – so it’s not just me putting myself through blazing heat and putting myself at risk of dire symptoms. Maybe madness is a trait we develop when diagnosed? If I flare massively when I return to British soil then so be it. I’d rather flare with decent wifi, my dogs and Netflix than here, when I’m meant to be enjoying myself…if I do flare as soon as I land at least Lupus has the decency to hold fire until the holiday was over. 

I’ve reached the second week, all in all I think I’ve done well. Yes, there’s been bad days but there’s also been fairly good days. I’m still enjoying myself, which is the whole point of the holiday. But, I must go because I’m bloody red hot and need to get into the sea. 

The wifi is co-operating with me today so here is some pictures! 

Breakfast yesterday: a waffle with Nutella, fresh strawberries and ice cream. At least there was fruit, right?
A little feline friend I made on the beach last week.
Mum and I one evening last week.
The view I had writing my previous post.

Lupus and being abroad: diary entry 3. (20/6/17-21/6/17)

I spent yesterday at my favourite beach, it wasn’t until we left the beach that we noticed the temperature was 37. It was bearable due to the sea breeze, in all honesty I was shocked to find that was the temperature. I spent some time in sea, which definitely helps symptoms. I also had a little nap on the lounger…I just can’t help it. It’s so easy to fall asleep on them, especially with chronic fatigue. It was a long day, we were out of the hotel grounds for 13 hours but remarkably I was OK. It wasn’t until I’d showered and got ready for bed that I started feeling the exhaustion and pains. I slept fairly well, mainly because the air con was off all night. Aircon plays with my Raynauds, I think it’s because it’s a high level of cold air constantly flowing out. But, I did keep waking up at random times – I have horrible sleep issues at home too so this is nothing out of the ordinary. 

I woke up today with a sore back, I’m not entirely sure what I’ve done. I haven’t done all that much to provoke it. I think it’s just a Lupus thing. It’s not a sharp pain, it’s more off a dull ache. I notice it more when I start walking around or change positions. I’m taking paracetamol and ibuprofen regularly, which you’d think would help my headache but it’s not letting up. It feels like someone has punched me in the back of the head. It started last night as we were walking back from the beach. 

It’s hot here today and there’s barley any breeze and when there is, it’s almost a warm breeze. I tried sitting in the sun but it provoked unwanted symptoms; headache worsening, itchy skin, dizziness and increasing my fatigue. So, I opted for the shade with a book today. It’s a feeling I struggle to describe, it almost feels like I’m not there because the heat zaps everything out of me. I couldn’t check the weather on my phone because I didn’t have wifi on the beach but, I’d say it was easily in the 40s. I fell asleep (again) on the lounger, it’s no surprise, I’ve done it everyday since being here. The sun and heat makes it a lot harder to fight the fatigue and I seem to just fall asleep at the flick of a switch, falling asleep to the sound of waves is utterly wonderful though. I was brought around a bit by a sugary cup of tea…could that sound anymore British?! 

Not everyday will be fine because it seems Lupus’ greatest enemy is the sun. It’s like it doesn’t want you to have the enjoyment that comes with it, sitting in the sun should be one of the easiest things to do but Lupus makes it extremely difficult.

This holiday is a test to see how I cope as it’s my first since diagnosis and with being medicated. I definitely think Hydroxy is keeping pesky rashes away, that’s the only thing I’ve found with Hydroxy, it’s good for keeping my rashes down. I guess having these bad symptoms surrounded by the sea and the beautiful mountains of Turkey is better than having symptoms at home confined to the same 4 walls all day. 

I tried to add pictures to this post but the wifi isn’t strong enough to upload. I’ll try again in my next post. As always, thank you for reading. 

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