Category Archives: juvenile arthritis

Methotrexate madness

Wow, so my last post was almost a year ago… How has time gone so quickly?!

I’ve been seen in my Rheumatology clinic twice since last September and a lot has changed! I feel like it is time for an update.

Back in February I saw the rheumatology registrar who confirmed that I have a type of inflammatory arthritis, but was unable to determine the exact type of arthritis. Back then my arthritis was causing me a lot of problems. My SI joints had really started kicking off at the end of 2015, and I actually spent New Year’s Day unable to walk because I had gone on a night out for New Year’s Eve and over did it. Since then, my back hasn’t improved. By the time I saw the Rheumy reg, in Feb, my SI joints, costochondritis, fingers, toes, ankle, knee and my ligaments and tendons were all flaring. I wasn’t in a great way, thats for sure. We decided to step up my treatment plan by adding in Methotrexate (MTX) – an immunosuppressant.

As I had a chest infection and was on antibiotics at the time of my appointment meaning I couldn’t start MTX until I had been off antibiotics for at least a week. I didn’t start MTX until the start of March. I started on a really low dose of 7.5mg which equated to 3 tablets once a week. After 2 weeks I increased my dose to 10mg once a week, or 4 tablets. With MTX you always have to take folic acid to counteract some of the side effect of MTX so I was started on these too… But even with the folic acid the side effects were horrendous. I had nausea 4-5 days a week, I could only eat one meal a day and on top of that, I still had loads of joint pain, stiffness and inflammation.

MTX requires quite close monitoring as it can affect a lot of different organs, especially the liver and lungs. I have been having bloods about every 2-3 weeks since February to ensure my liver was functioning okay but also to check my kidney function and full blood count to make sure my white blood count did not drop too low and so far so good! Everything is just about in range, but there is nothing too out of range to worry about. A rare side effect of MTX is pulmonary fibrosis, which tends to present with a dry cough and shortness of breath. As a precaution, the reg decided it would be best to send me for a chest x-ray and pulmonary function tests to establish my baseline lung function for if there were any issues – but again everything looked fine!!

MTX can take about 12 weeks to kick in, and by week 14 or 15 on 10mg it was clear that my joints weren’t responding enough. I phoned the rheumatology helpline and explained what was happening to the nurses. They spoke to my consultant who increased my MTX to 15mg (6 tablets) but kept my folic acid the same as before. The nausea was way worse on 15mg: I dreaded MTX day, I dreaded eating, I lost more weight. Things were just not fun.

After being on 15mg tablets for about 8 weeks I made the decision to switch to injections. With injections you can sometimes reduce your dose by 30-40% because that is equivalent to how much absorb with the tablets so I switched to 10mg injections via the Metoject pen and so far things are a lot better in terms of side effects. I’ve had 2 doses of the injections so far and although I still have hardly any appetite, I can eat without nausea. I also got an intramuscular steroid injection because my SI joints and hip were making walking without an aid difficult, my costochondritis meant that taking a deep breath was virtually impossible and my shoulder (a new joint that kicked up a fuss from March onwards) was pure agony. The steroids took the edge off everything but my back and chest are still sore, just less sore.

I think that brings us up to speed to this week! Yesterday I saw my consultant rheumatologist who was amazing. My nurses had briefed my consultant on what had been going on before my appointment.When I was called in, before I had even said anything my consultant said this:

“Your arthritis is not controlled. We need to treat this more aggressively, but not over-treat at the same time. It’s a balance, but I would prefer to be more aggressive now because it’s easier to reduce meds than never get full control”

I am so glad that we are taking a more proactive approach, it’s scary that there are medications out there that I wouldn’t be able to access unless my rheumatologist was taking a more aggressive approach.

Once I had updated my consultant on things from my point of view, she suggested 3 options:

  1. Increase MTX
  2. Keep MTX the same but add a third DMARD
  3. Do both

We decided to just increase MTX since I had just had a steroid injection and we had’t given the last increase enough time to become effective, but at the same time we couldn’t do nothing. Starting tomorrow I will be on 15mg MTX injections and I will also be learning to self-inject. I also have open access to my consultant for the next 6 months when my next follow-up appointment will be, so if things don’t settle I can go back and see her with an emergency appointment.

My consultant also confirmed that my arthritis is seronegative because my rheumatoid factor is negative, and that spinal involvement is common with seronegative arthritis. We are now treating my condition aggressively rather than watchful waiting to see if lower doses will help. I feel like this is the turning point, where we will hopefully manage to get full control over my arthritis, or at least it gives us the best shot of getting full control!

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#RABlog Week Day 3 – How my condition affects me

The third prompt for #RABlog Week is “Explain your RA”. Technically I do not have RA, I have another joint condition caused by my immune system attacking my joints that hasn’t yet been identified. I can’t explain what exactly is going on because I don’t know that myself but I can explain to you how my condition affects me, and how it makes me feel.

When I was diagnosed back in November I wasn’t ready for a diagnosis. I had gone for 7 and a half years with everyone telling me that they believed my pain but no one could tell me what was going on. I remember asking my Rheumatologist in despiration if she has ANY idea what was going on… her answer was “It might be autoimmune, it might not be. I do not know what is going on with you”. That was what I was told when I was 14. I wanted to cry, I was so frustrated at my body, at being sore all the time. I found it hard to explain what was going on to people because I didn’t have a diagnosis so I felt as if I was a fraud. Other people would go to the physiotherapist because of a sports injury and they knew how to treat it, I would go and they would say that they would try a treatment… but when it didn’t work I would get passed to a different physiotherapist. I saw 6 different physiotherapists in the space of 5 years. That is a lot of physiotherapy, and it is a lot of specialists who couldn’t help me, even though they truly believed I was telling the truth. They would all look at me with really sad eyes and tell me that they were sorry they couldn’t help, and that I should see my rheumatologist again. And every time that happened, any hope that I had built up was gone again and I felt really alone.

I felt that people would stop believing me because I didn’t have an answer for what was going on, and apparently no one else did either. So when my Rheumatologist turned around to me and said “I think you have an autoimmune condition, I want to start on you Hydroxychloroquine” I didn’t know whether to cry with happiness because I finally had an answer or to cry because I had found out that what I was hoping wasn’t true, was true.

As I said before, we haven’t quite narrowed down what condition I have. There is speculation that I could have Lupus or Mixed Connective Tissue Disease… or I could have Psoriatic Arthritis or Seronegative RA. We haven’t worked it out yet. I personally believe that I could have something similar to Psoriatic Arthritis or Seronegative RA due to my negative test results and the inflammation in my ligaments and tendons… and more recently, the whole finger that swelled up for 5/6 days for no reason [AKA dactylitis, although I need to get that confirmed by my rheumatologist]. I am lucky that I am studying physiotherapy so my lecturers understand what sort of problems I may have at uni but the problem with not having a name for my condition means that I can’t tell them straight out what I have and then have to explain the whole “I’ve been diagnosed but they haven’t said what it is yet… because I am a mystery to my rheumatologist”.

Of course all that emotional stuff stems from how my condition affects me physically, and also partly on how other people treat me because of my condition. If you look at me you cannot tell that I have a joint condition. If you had a line up and you had to choose someone who you thought was chronically ill, I very much doubt you would choose me. I look healthy… and to some extent I class myself as healthy but if you read my medical file you would probably picture someone who is unhealthy. I want to quote some things that my rheumatologist has written about our meeting and I want you to try to think about what a person with these ailments would look like.

“Lumbar sacral spine movements were grossly restricted”

“… restriction of plantar flexion subtalar movements and mid foot movements” [AKA restricted movements in my feet and ankles]

Morning stiffness remains a significant problem and can last between 1 and 3 hours”

“…feels extremely tired”

“… grossly restricted movements in neck and back”

If I saw a description of this written down I would expect to see someone who probably wouldn’t be very active, and probably wouldn’t be able to move very well because of all the stiffness. However, that is not the case. I am active, I can run, I can jump… Some of the time that is. And this is the thing with chronic invisible illnesses of an autoimmune nature, sometimes you can feel really good and the next day, or even the next hour, you can feel absolutely horrendous.

There have been times that I have used a disabled toilet because of the fear that I wouldn’t be able to get up off of a normal toilet without handrails. There have been times where I have sat in the disabled seat on buses because my joints couldn’t cope with me standing any longer. There have been times where I have been physically sick from pain. There are days where I can’t write, or when I find it hard to type. What I want people to learn from this is that living with an illness is very unpredictable and you have little control over which days you feel great and which days you don’t. I deal with pain, swelling, stiffness and inflammation every single day and yet some days I can still be “normal” whatever normal is. The point is that you cannot see my suffering so just because I don’t tell you that I am sore doesn’t mean that I am pain-free. Please remember that your sister, brother, parent, friend, relative, colleague… who ever you know with RA/Autoimmine arthritis, will most likely be sore every day and have symptoms every day. Just because you can’t see them, doesn’t mean that they aren’t having problems. If they are doing things slightly differently to normal then this is probably them compensating for said symptoms in a functional way… they might even ask you for help. Don’t make a big deal of it, just help them. Don’t treat them any different to normal, they are the same person they have always been. They do not need to feel more isolated by their illness because you feel the need to make a big song and dance about what they can/can’t do or what they may/may not need help with.

#RABlog Week Day 2 – Managing fatigue

The prompt for Day 2 of #RABlog Week is managing RA fatigue… In short I am rubbish at managing my fatigue. I have a very busy lifestyle which lends itself to late nights and early morning starts which little time to nap during the day. I tend to survive on coffee, much like other students BUT having said that, I know when my body has had enough and when I need to give my body time to rest and recuperate.

I try to stay as organised as possible. If you looked at my bedroom right now you would probably think “How the hell is that organised?” which is true because my room is a complete mess at the moment. But I am usually quite good at keeping my room tidy. If I keep my room tidy then it means that I don’t have to do a massive [potentially exhausting] clean out when it gets to the point where I can’t cope. The same goes for my uni work… I try to stay on top of my work load by going over lectures and doing homework when I get it rather than waiting till the last minute and staying up all night writing and assignment. When I first started Uni, I was more interested in socialising than going home and doing my work which lead to me becoming so exhausted that I had no energy to do anything else except work in the end… and I didn’t even have enough energy to do that a lot of the time.

I also try to keep to a healthy sleep pattern so I try to get to bed by 12am and I don’t sleep past 9am at the latest… I try to go for 8 hours of sleep every night although most nights I get somewhere between 4 and 6. Along with this [attempted] healthy sleep pattern, I try to keep my day structured… Not like an army bootcamp where everything is planned to the second, but I try to make sure that I do at least 2 hours of work in the evening so I don’t fall behind, I try to keep to a cleaning rota, I make lists of what I am going to eat and make lunches in the evening so I don’t have to get up early in the morning to make something for lunch. Making lunches the night before has become particularly important now that I am trying a gluten free diet, since I am still not sure what foods contains gluten and which don’t so it is just easier for me to make lunches rather than get something at uni.

Along with sticking to a structured day, I try not to nap during the day because I find it harder to fall asleep in the evening… Obviously if I am so exhausted that I need to sleep then I do, but I try to limit my naps to a couple of hours max. I am not ashamed to admit that there are days where I have been so tired that I haven’t bothered getting out of bed. These days usually occur during a flare, when getting out of bed is difficult enough anyway… so coupled with the fatigue, I don’t get out of bed.

So those are a few things that I do to try and manage my fatigue… Personally I don’t find that it helps very much but everyone is different and I know a few people that this sort of thing works wonders for. I have actually been looking forward to this topic since the prompts were released because I want to see what the other bloggers write and suggest. I’m always open to suggestions.

There are also a couple of other things that I want to point out/make you guys aware of. Fatigue has been linked to the level of inflammation in a person’s body, obviously with RA and other autoimmune conditions, this is higher than in other, more healthy people. It sounds simple but if you can control the inflammation then this is probably a good starting point for managing your fatigue. However, the difficult thing is working out how to control the inflammation in your body. If I had the answer to that, I would be a very happy person… but I don’t so the only thing I can suggest is taking your medications as you have been prescribed them, and to work with your doctors/rheumatologist to try and find the best medication/combination of medications that work best for you. You might want to explore alternative therapies for coping with fatigue, or herbal medicine. I can’t say if that works or doesn’t but if you do decide to go down those routes PLEASE CONSULT YOUR DOCTOR FIRST. I don’t understand how herbal things or alternative therapies work, and you never know some might cause weird side effects so it is best that your doctors know what you are going to do.

Fatigue can also be caused by some deficiencies [e.g. iron deficiency] so if you find that you are becoming more tired than usual, and you aren’t flaring then maybe it is worth getting checked to see if you have any deficiencies… Most deficiencies can be easily corrects and if that is the case then that is great.

Is it a flare? Or not?

I apologise for the lack of posts… I have been revising for a couple of exams at uni which hopefully went okay. I don’t get the results for a little while. It’s crazy that I only have 4 weeks of placement until I finish my first year at uni.

Today was my first day of placement and although my joints held up while I was there they seem to be hurting quite a lot more now. I’ve had a sore lower back and sore hips for a little while now, to the point where I am needing naproxen twice daily and paracetamol multiple times a day… I feel like I’ve taken a step back in terms of how controlled my joints are. I’m struggling to work out if the back pain is actually because I have a sore back or if it’s referred pain from my hips since my hips are also sore. Or if the back and hip pain is a result of SI joint issues. Either way, I hurt and it’s seriously pissing me off.

On top of the back pain and hip pain, my knee and ankle are also kicking up a fuss which makes walking around in placement more problematic… I have some joint supports that have helped in the past so hopefully that will help tomorrow.

I’ve also found my hips have been getting creaky… Usually this means stiffness but my hips are creaking once I’ve been up and about for hours. I wake up with them creaky and they are still creaky when I go to bed. My elbows have also been creaking a lot recently but thankfully they aren’t warm to touch or swollen, just creaky and sore so I am only keeping an eye on them, but I’m not too worried at the moment.

The warning signs of a flare that I look for are swelling, increased pain, heat at joints, increased stiffness and fatigue. So far I have:

• Swelling of my ankle, knee and wrists (periodically). 

• Increased pain in my lower back/SI joints/hips, knee, ankle, elbows, wrists, and various fingers.

• Heat at my knee and hips 

• Increased stiffness at hips, knee, ankle, wrists, elbow and hands

But I don’t feel any more fatigued than usual so I am watching and waiting to see what happens. I am hoping that this is a reaction to the added stress of exams and organising placement but there is also a chance that Plaquenil isn’t working as well as it was especially since I’m experiencing ulcers and hair loss… I see my rheumy in July so we can hopefully work out what’s going on then, if there is something going on.

You’d think that after dealing with this disease for so long, I would have more of an idea what’s going on with it… But it’s still a bit of an enigma to me.  

A review of today’s appointments

I have a lot to update you guys on! Today has been hectic!

It started off with a rheumatology appointment at 9.30. I was super nervous about this appointment because I didn’t feel that my joints were as controlled as I would have liked even though my morning stiffness had improved and I am able to exercise now [I am training for a 5K 3 times a week, and I swim twice a week] as my joints still hurt and swell, I still have bilateral achilles tendonitis, both my MCL and LCL in my knees are still playing up and I am absolutely knackered. I was worried that my Rheumy would suggest an immunosuppressant [AKA methotrexate or azathioprine] and I was worried about the implications of this on my course and placement as I will be on an infectious disease ward on placement… but thankfully things have turned out for the better and right now I do not need to go on any sort of immunosuppressive therapies [although I was warned that this could change]. I don’t even need to change medications! I had struggled with fluid in my left knee throughout February but thankfully taking Naproxen twice a day [rather than as needed] every day has sorted that and I am happy to report that my rheumatologist found no inflammation or fluid in any of my joints!!! *Cue the happy dance* I also found out that I don’t have any inflammatory markers or auto-antibodies in my blood! First time in 5 years I haven’t had antibodies in my blood guys! This is big!!!

However, we did find that I have lost a significant amount of movement in my right ankle and I have experiences catching/locking in that ankle so the plan for now is to stay on Naproxen and Plaquenil/Hydroxychloroquine at the same dose [400mg a day] for another 4 months, get an MRI on my ankle to see if it is a mechanical or inflammatory issue, continue with my achilles tendonitis exercises, get bloods done and follow up in 4 months.

The nurse I had today was absolutely brilliant, I only had 5 tubes of blood taken today and the nurse remembered me as the girl who usually gets 8 taken… I feel that I must have a bit of a reputation. We had some great banter together, and swapped some funny patient stories about what we experienced on placement, or in her case, in work. I feel that people like her really make your day. My rheumatology clinic can be really depressing, no one wants to be there and you can feel the dread hanging in the air as you sit there surrounded by [mainly] elderly people, or worried parents of younger children/teenagers, but as soon as this nurse walks into the room it really lifts the atmosphere and lets everyone have a little chuckle… Things like that are important.

Me and mum then had to rush up to my university accommodation [about 50 miles from the hospital] so that she could get back down to go to work… and the road was full of lorry’s so that delayed our progress because a lot of them thought they were powerful enough to overtake each other, when they really weren’t. But I got up here in plenty of time to make my asthma annual review.

This was my 3rd asthma annual review… that’s crazy right? I got diagnosed nearly 3 years ago, it really doesn’t seem that long. This is my first asthma review since I moved to university and it was my first asthma review with my new asthma nurse, in fact it was the first time I have met my new asthma nurse so I was quite nervous. But I shouldn’t have been, the appointment went very well. I explained that I felt that I am well controlled [with the exception of a little episode the other week, as a result of having a drink with ice in it] but my big problem is exercise. I find that exercise sets my asthma off quite a lot and I feel that it is preventing me from getting to my full potential during exercise. So we discussed my treatment options, I am already on a combination inhaler so I am to increase that on days that I exercise [although she didn’t tell me how much to increase it by… I’ll probably take an extra puff on the morning and night], I can also pre-medicate with more Ventolin than I do already… She also phoned the GP in my practice who specialises in asthma who advised that I should have a trial of Singulair [AKA Montelukast], so I have to pick up my prescription tomorrow and try it for a month. And then I have to see my asthma nurse in April to see how I am getting on. My asthma nurse prescribed the brand of Singulair rather than the generic, Montelukast, which turns out has to be ordered in [I checked at 3 pharmacies] because it is 14 times more expensive than the generic… If this works I hope she will start prescribing the generic because it is crazy expensive! We aren’t sure if Singulair will help me because I do not have allergic asthma but we decided that if we don’t try it then we will never know, and if it does help, then it was an easy fix.

Every asthma review I’ve had has resulted in a load of follow-up appointments and changes to treatment plans so I am hoping that this won’t end up getting too complicated. I just want to be able to exercise when I want without worrying about having to plan it out with increases in meds on certain days and not on others… Is that too much to ask? Apparently it is… although if it works then I will take it. I have a feeling that we may end up increasing my Flutiform to the 250/10 inhaler in the future if this doesn’t work because I am exercising about 5 days a week now so I will have an increased inhaler dosage for 5 out of 7 days every week… It might just be easier, and cheaper, to have an inhaler with a higher dosage, but we shall cross that bridge when, and if, we come to it.

Right now I am super aware of how many prescriptions I have, I am currently up to 5 [or 6 if you include paracetamol] because it isn’t only going to cost me a lot as soon as I turn 19 [even with a pre-payment certificate] but it is costing the NHS a huge amount too… It’s a shame there isn’t an easy fix out there right now. Of course, I can exercise inside when it is cold but that only helps so much, I still get symptoms… and it probably won’t be any easier in the summer since humidity sets me off too. It’s annoying that the point I get to a point where my joints will allow me to exercise, my asthma kicks up a fuss!

A realisation moment

I think today was a realisation moment for my mum today. We had gone for a coffee break when we were shopping because my knee and ankle were giving me some trouble. We both ordered a cup of tea, which arrived as 2 pots of tea. When we had finished I had only drank half a cup of tea, and why questioned why by Mum I explained it was because my wrist hurt. Struggling to put why my worst hurt together with why I couldn’t drink the tea, I explained that when my wrist is sore it can be difficult to lift things like pots of tea because the weight of it aggravates my wrist.

This just shows that being diagnosed with an autoimmune condition isn’t just a learning curve for me, it’s a learning curve for the people who care about me too. I think I tend overlook that quite a lot as I am too busy dealing with it, I sometimes don’t recognise how all of this can affect my family and friends. I still believe that education and sharing experiences is the way to deal with a lot of these problems and so I don’t hesitate to educate people about how my condition affects me and generally how autoimmune arthrits conditions can affect people generally. This affects everyone differently so don’t forget that one family member might have different struggles to another family member, even if they have the same condition.

Secondary school and chronic illness

When I was at secondary school (ages 11-16) I was incredibly lucky when it came to my joints. I was very close to my PE teachers, and while I didn’t always tell them that I was having a rough time they usually knew and would ask if I needed to sit out. In fact I actually only asked to sit out once because of my joints, every other time they asked me. And more often than not I refused because I loved sports so much I would have rather suffered than sat out. I also used to feel that because I didn’t have a diagnosis that I couldn’t sit out even though it was never really like that at all.

I remember taking a lot of trips to the nurses office in the early days when my fingers hurt too much to write. We didn’t know what I had or why they were sore so she would tape them up to try and give them support while I was writing, and then I would spend the rest of the day trying to hide them from my classmates and teachers so I wouldn’t have to answer questions about it.

When I was in year 9 or 10 I took up the Saxophone which I loved. I couldn’t read music but I could play by ear when my teacher played the piece to me. However, as usual, bad joints decided to interfere and there were some days I couldn’t play because my fingers and wrists were too sore. We changed my lessons to the afternoon/late morning so it would be easier on my joints. I was also a member of the orchestra and some practices I couldn’t play, so I would sit at the back and listen. I usually just told the teacher I wasn’t feeling well but one day I decided to explain what was going on with my joints. It turned out my music teacher had Juvenile Arthritis and totally understood what was going on, and how my joints felt. 

As you can see my secondary school experience was one of support when it came to my joints. There are so many people out there who have to fight their school tooth and nail just to get some small accomodations. I’ve heard of children being made to stand up for hours because the lesson demanded that they should be standing. I’ve heard of parents having to come to school every 3 hours to give their kids eye drops because their disease is attackig their eyes and the school doesn’t want to do the eye drops. I’ve heard of kids being forced to take part in physical education because the school doesn’t understand that kids get arthritis… Probably the most severe issues I’ve heard about is parents sending their sick kids into schools, exposing immunosuppressed kids to the sicknesses that can make them incredibly ill. 

And then of course is the issue of being absent from school. My school was okay with me missing lessons for appointments, especially because I was hardly ever off sick. However for many kids that wasn’t the reality and the school couldn’t understand that sometimes kids with JA/autoimmune joint conditions couldn’t get I to school on time, or at all. And that these kids have a serious medical condition that requires the attention of medical professions, many of whom only have appointments during school time.