Rheumatology appointment: 28-02-2019

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

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

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

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

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

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

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

An insight to Lupus – Novemeber 2018.

Thursday 1st: I have pain in my back and abdomen, it’s a dull type of pain and it hurts to stand up straight. I have pain in my right shoulder. I can feel my fatigue heightening by the hour. There’s pain in my elbows and knees. I think I’m starting to flare.

Friday 2nd: I woke up with a headache, it’s in my eyes and temple area. I still have the back pain but today it’s stretching to my sides. My elbows have sharp pains in them but it’s mostly concentrated in the left elbow. The small joints on my left hand have a dull pain radiating through them. As the day progressed the pain and fatigue got more intense.

Saturday 3rd: I didn’t sleep well, I was tossing and turning all night and my headache from yesterday is still in tact. I’ve started to properly flare, horrendous pain in my elbows, knees and hands. My body aches and it feels like I’m lugging around a dead weight. My fatigue is at a high level, my eyes are constantly stinging and begging for sleep. The intensity of my symptoms got worse as the day progressed.

Sunday 4th: I didn’t sleep well at all, the last time I looked at the clock it was 3am. The pain in my elbows is intense. My knees started to hurt within an hour of waking. My headache is still there, I’m taking paracetamol and ibubrofren regularly but it’s not helping. The little joints in my feet hurt, a sharp pain. My fatigue is terrible today, it’s been difficult to keep my eyes open. My body aches from head to toe. My back has started to hurt again too.

Monday 5th: I slept well, for 12 hours in fact, and I only woke during the night a few times. However, it hasn’t made me feel better. I just wanted to go back to sleep when I woke up, I’m ridiculously tired. My headache has doubled in intensity and my brain feels clouded. I had pain in my elbows, knees and thigh muscles.

Tuesday 6th: I didn’t sleep well, I fell asleep around 2.30am and kept waking through the night. I had pains in the usual places: elbows and knees. But I had pain in my hips and thigh muscles again – a mix of sharp and burning type pains. My brain still felt clouded this morning and early afternoon. I had back pain at irregular intervals, which might tie into the hip pain? Before I went to bed the muscles in my arms had sharp pains too and the pain in my right knee got worse. My headache was nearly none existent today, which is something positive!

Wednesday 7th: I slept reasonably well but I did wake a few times throughout the night. My fatigue has been very high today, it feels like everything is an effort. I have bad pain in my right knee, my elbows and my back. The headache made a return this evening. I just can’t wait to go to sleep tonight.

Thursday 8th: I didn’t sleep too bad. But, it was still a bad day for fatigue. I barley did anything. I had bad pain in my knees and back and I had a headache throughout the day. It felt like a really long day. I had sharp pains in my hips and thighs at night time.

Friday 9th: I didn’t sleep too well, I woke up numerous times throughout the night. I’ve had a high level of pain in my elbows, a mixture of dull and sharp pain. I also had dizziness and pain in my hips whilst walking around some shops this afternoon. I’ve found it difficult to concentrate today. The pain in my right elbow got significantly worse by the time I went to bed and the left one wasn’t much better.

Saturday 10th: I slept the best I have in a while. Today started well, I thought it would have been a good day but by afternoon Lupus came out to play. My hip started to hurt, a tingling sensation with sharp pain. My knees were in a bad way whilst trying to fall asleep. My back is sore too, it’s hard to find a comfortable position to sit or lay.

Sunday 11th: Awful nights sleep, my back was sore, after 10/15 minutes of laying in one position, I’d have to change. I eventually fell asleep at 4.30am but it was still broken sleep until I got up at 9.30am. It was very difficult to keep myself awake throughout the day. Obviously, my fatigue levels were through the roof. Thankfully, the pain levels were at a bearable level today.

Monday 12th: I slept a lot better. I have pain in the usual places like my elbows and knees. By afternoon my fatigue levels crept back up and the joint pain started back up.

Tuesday 13th: I slept reasonably well but I kept waking from around 5am. Lupus is working it’s magic this evening with bad knee pain and sharp pains in my thigh muscles, I can actually feel my knees throb. There is some discomfort in my right hip. I have pain in both elbows but it’s not a severe as my knees. There’s a sharp pain in my left rib area and chest.

Wednesday 14th: My sleep was the same as the previous night, from early doors I kept waking. I have pain under my ribs, a sharp pain. I struggled to get going today and this afternoon my fatigue heightened. I had pain in my elbows, wrists and hands today but it seems to be settling for now. The pain in my knees doesn’t seem to be easing though. My skin is really itchy today especially on my arms and back, it feels like there’s millions of insects crawling under my skin.

Thursday 15th: I didn’t well. I was waking up often throughout the night which means my fatigue levels are quite high. I have the usual pains in my elbows and knees. The pain in my back is still there but it’s intermittent.

Friday 16th: I slept fairly okay, I still kept waking up through the night though. I had a bad headache today and my joints were quite sore. The back pain seems to be subsiding.

Saturday 17th: I slept okay but again, I woke up often. I have pain in my right shoulder today and my headache is still there. I had a sharp pain in my right knee which spread down my calf.

Sunday 18th: I slept well. I woke with a headache that lingered all day, it started in my temple area but soon went to my eyes. I had joint pain in my knees and elbows again. My fatigue was pretty high, especially in the afternoon and evening.

Monday 19th: I slept okay, not the greatest. I still have the headache but it’s not as bad as yesterday. My joint pain today is mostly concentrated in my elbows, specifically my left. It’s a mixture of dull and sharp and goes down my arm. I had hip pain, mostly in my right hip. I’m feeling quite tired today.

Tuesday 20th: I slept fairly okay but I was waking a lot. I was achy today, espcially in my legs. I had pain in my elbows and knees and some muscle pain in my upper arms and thighs.

Wednesday 21st: I didn’t sleep too bad. I’ve felt unbelievably tired today. I’ve had back pain, my head has felt foggy and I’ve had a headache. I had joint pain in my left wrist, the small joints in my hands (mostly left). And of course, pain in my knees and elbows. I felt feverish during the evening.

Thursday 22nd: I slept well. I saw the doctor this morning and I was put on anti biotics for an infection which explains the fever. I have intense pain in my elbows, wrists, fingers (mostly left) and shoulders. There is a mixture of a stabbing and burning pain in my left thigh and calf. I also have a headache and my fatigue is at a high level – all of the above symptoms are from one Christmas shopping trip.

Friday 23rd: I didn’t sleep too well, I kept waking. It’s been a really tough day, my whole body ached and I had pain pretty much everywhere. Every task was an effort to do. I’m still feeling quite feverish but I’m hoping the antibiotics bring that to a stop soon.

Saturday 24th: Again, I didn’t sleep too well, it took hours to fall asleep after taking a sleeping tablet at 2.30am. My fatigue levels are sky high, my eyes are stinging. I feel beyond achy today, it feels like I’m dragging around a dead weight. Again, I felt pain almost everywhere. I’m still feeling the effects of Thursday’s shopping trip.

Sunday 25th: I didn’t sleep well, it was a case of taking me hours to fall asleep again. I don’t feel as achy today but my fatigue is hitting a new height after the last few days and nights. I have joint pain in my elbows, wrists, knees and shoulder.

Monday 26th: I slept a little better but not much. I have an intense headache today. The aching body is back. I have pain in my shoulders, elbows and knees.

Tuesday 27th: I slept okay. I had a minor headache this morning but it has turned into a nasty one that is making me feel nauseous. It’s at the back of my head and goes into my temple area and eyes.

Wednesday 28th: I didn’t sleep well, my head hurt every time I moved. I had terrible joint pain, just holding a cup of tea caused pain to shoot down my arms. My headache hasn’t eased, it’s still in the back of my head, temples and eyes.

Thursday 29th: I didn’t sleep well again, for the same reasons and my headache is still with me. It’s the same, back of the head, eyes and temples. I’m getting really fed up with it. I had bad joints today too; elbows, wrists, knees and feet. I feel so exhausted.

Friday 30th: Yet again, I didn’t sleep well. My headache is still firmly in tact, it feels as if it won’t go away. If it doesn’t improve over the weekend, I’ll see the doctor. I had a strange mark on the left side of my neck which was itchy and later on pain started in that area. I’m still suffering quite bad joint pain in my elbows, knees, shoulders, wrists and feet.

How Lupus made me an actress

Everyday I have pain surging through my joints. I have headaches daily. My body aches, walking can feel like wading through water. I feel like I’m drowning in fatigue. Lupus is felt by me daily, because it demands to be felt, but it doesn’t demand to be seen.

“How’re you?” is, like most people, a question I’m asked daily. My answer is always the same “I’m doing good”, very few people can detect that I’ve just lied to them. I recently started flaring and my mood slipped low, it’s something that happens a lot during a flare. I’m almost certain that my efforts for it to go unnoticed were successful.

When you’re diagnosed with an incurable illness, you slowly learn how to act. You learn how to smile when smiling is the last thing you want to do. You learn how to do a convincing laugh, when all you want to do is be in bed resting. You learn how to act like everything is OK and that you’re OK.

My main reason for covering up how I truly feel, physically and mentally, is because I don’t want to upset people. I don’t want my loved ones to feel hopeless because they can’t help me. I don’t want people to think “oh here she goes again with endless complaints”. I certainly don’t want to look like I spend half of my time moping around about my illness and how it affects me.

I view my illnesses as a personal thing. There isn’t much anyone could do to help me feel better, it’s a matter of me listening to my own body and doing what it asks. I decide what painkillers would be best with the level of pain I have. I decide if I need to spend the day resting in bed and I decide what I can and can’t do. My family disagree with this, but I struggle to get out of the mindset of it.

My response “I’m doing good” has become an automatic response. My mind doesn’t even think about being honest anymore for the reasons listed above. And, no matter how hard I try to be honest, my mind just doesn’t let me.

Lupus flare number…who knows?!

I have contracted some kind of bug. Lupus and what I call ‘normal people sick’ don’t bode well. It would seem that my immune system sets off to do the right thing, to attack the intruder, but gets confused on it’s way there. It starts attacking my joints healthy tissue instead. It gets to the point I can barley feel the sickness bug and can only feel Lupus. In a sense, when I get a bug I also get a shitty freebie, known best as a Lupus flare.

I spent yesterday in bed reading a book whilst on high strength painkillers, it’s a miracle I followed the story. The pain was consistent all day, a sharp pain radiating through my elbows and knees. I also had all over body aches and muscle pain, particularly in my thighs and calves. The little joints in my hands were also affected by both dull and sharp pains. The pain killers were only taking the edge off, they didn’t offer much relief.

When I got up to get ready for bed, the sharp pains in my back started. I’ve been having them quite often recently and the pain reaches under my ribs on either side. I got back into bed and took more painkillers, this would have been my fourth dose of them. And, you’d think by 4 doses of high strength painkillers, I’d be in a comatosed state ready to sleep. Haha, nope. I lay on my side to sleep but the pain meant I had to switch sides every 10 minutes. I tried laying on my back but that hurt after a few minutes too. The pain in my knees meant that having them resting on each other hurt. My elbows by this point were in their own league of pain. I wanted to use my heat pad, especially on my back and sides but due to the heatwave, my room still resembles a sauna.

I tossed and turned until I finally fell asleep at 5.30am. I woke up at 9.30am but I managed to get a couple more hours in. I’m unsurprisingly knackered and my joints are still sore. I took a warm bubble bath this afternoon in the hopes that the heat would settle my joints, it didn’t. My back and sides still hurt and my body aches like I’ve been dipped in concrete. This evening there is a new pain in my ribs, it hurts when you press down, I’ve never had it before so I’m going to have to decipher a way to combat that tonight.

I haven’t done much today, I have just rested like my body has asked. It gets unbelievably boring though, there’s not much to do during the day on your own.

Lupus is most definitely active and frolicking around my body causing mayhem. Tomorrow is another day.

Ps, I’m taking a sleeping pill tonight.

Azathioprine, steroids and symptoms resurfacing.

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

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

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

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

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

Steroids: what are they like?

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

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

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

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

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

I’m (reluctantly) on steroids.

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

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

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

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

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

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

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

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

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

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

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

Rheumatology appointment – 15/3/2018: a new medication.

I’m sure my appointments come around quicker each time. The time between my last appointment and this one was 4 months. This appointment was mostly centred around Antiphospholipid Syndrome.

As usual, the appointment started with the nurse for the usual checks. My weight and blood pressure were fine, but my urine is showing a possible infection. I’m unsure if I still have protein lurking in it, the nurse was concentrating on the possible infection.

As stated above, this appointment was mostly about Antiphospholipid Syndrome, I’ve never had an appointment that was nearly dedicated to this illness, people assume (and I did for a while) that all my symptoms are down to Lupus. In all honesty, this was an odd appointment to me, I was barley asked any questions. He asked how I felt since the upped dose of Azathioprine and when I replied “honestly…I feel no different”. And, that’s when the appointment changed direction to Antiphospholipid.

It isn’t new knowledge to me that my consultant wants me to take warfarin or something very similar to control my APS. For over a year, he’s believed my headaches are tiny blood clots on my brain that fizzle out on their own. For some reason, I have a great fear of Warfarin, the thought of taking it petrifies me. Which has resulted in a firm head shake at my consultant numerous times, essentially, I have denied treatment.

However, at this appointment, we found a middle ground. A medication called Apixaban, which has replaced my dose of Aspirin. Apixaban is an anticoagulant, which means it will greatly reduce my risk of DVTs and PEs. I take two 2.5mg tablets a day, one in the morning and one at night. My consultant believes the symptoms that aren’t being relieved by my Lupus meds, aren’t Lupus symptoms at all, but symptoms of APS. We’re hoping Apixaban will help relieve headaches and some degree of the fatigue. I have been given a months supply to see how I cope on it. The meds come with an alert card that needs to be kept on me at all times.

Another point of discussion was the back pain I’ve had for the last few months, it differs in severity. I also mentioned that I can do my first wee of the day at around 4pm. He said the urine sample I provided will be sent to the labs for further testing. He also wanted to check my full blood count, the last couple of times my blood count has been slightly low. If it continues declining, my dose of Azathioprine will be reduced back to 100mg. He will write to me with the results of both, but the nurse recommended I ring my GP to check if I need antibiotics, which she said I most likely will.

He scheduled us to meet again in 3 months time.