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.

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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.

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.

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.