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Posts Tagged ‘Rheumatologist’

Just a quick note to say that I sent my Rheumatologist a weekly update on my condition, which isn’t getting any better. My current joint count includes: both hips, but especially my left being painful and unstable, both knees being very swollen, sore and restricted, left elbow swollen, painful and very restricted, both shoulders painful with fluctuating levels of restriction, neck stiff and sore, left wrist and fingers starting to feel puffy and stiff and developing pins and needles through to that hand, both ankles feeling tight and the left side of my jaw quite painful and tender to touch. So, you can probably understand that my hopes for Tocilizumab ever working are slowly dwindlng away…

I said as much in my email to my Rheumatologist and was relieved that he feels we have given the current treatment combination enough time now and that he is looking into other options to see what we should try next. I have been on Tocilizumab for 6 months now; 4 in combination with Methotrexate and 2 with Ciclosporin. Blood test results have show significant improvement but my joints have definitely not; in fact, I am much worse now than when I started.  In his reply he stated that the next step will probably be a stronger anti-tnf drug; Enbrel worked for a long time, but I eventually formed antibodies against it. I know there have been a lot of advances in anti-tnf since then and so I am happy with this option.

I’m due for my next infusion on Friday and will see my Rheumatologist to discuss things further then and hopefully come away with a plan of action. I’m guessing I’ll at least have this last dose of Tocilizumab and then maybe we will start the application to fund something new. I also hope that they will be able to take some of this fluid off my joints, particularly my knees, to give me a bit more movement. Not being able to bend my knees or weightbear on my hips properly is certainly proving to be a challenge!

Until then, I’ll be doing some research of my own into the anti-tnf options available,

L

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After two weeks in hospital, and one of my scariest flare ups, I finally came home today. It was a slightly confusing turn of events, as on Thursday they were talking about me going to a mobility rehabilitation centre for a time and then suddenly the arrangements were being made for me to go home, even though everyone seemed to have different ideas about whether I was ready for this. After a lot of discussion, I made the decision that I would rather be at home to continue my recovery as I didn’t really see what more could be done for me as an inpatient, now my pain was controlled and I’d had all the relevent procedures. I’m lucky to have good support and facilities at home, plus they have arranged for me to have home physio and an assessment by the Occupational therapists to see if there is anything more I would benefit from.

My elbow had been the main factor holding me back once my hips were sorted, as it became swollen, restricted and very painful – especially when needing to bear weight through it to use the walker/crutches. My Rheumy came to examine it and found more inflammation and fluid around the joint, so I had this injected with cortisone too, which should settle it down and give me more movement and use of that left arm. I tried the stairs with crutches for the first time and although it was hard going, I think I can manage doing it once a day until I’m strong enough to try more. One important factor that has been reinstilled with me during my hospital stay is just how important it is to keep moving, even through pain and inflammation, and this is something I will be posting about once I catch up on everything.

The past two weeks have been a real eye opener for me in many different ways, so I have lots to post about. The wordpress format seems to have changed while I was away, but I’m hoping that once I figure it out I will be able to backdate posts relating to my stay, while updating with current issues as before. The reason I feel the need to backdate is that this blog also forms a record of my disease activity, which is useful for myself (and hopefully others) to look back on. I was making notes on paper during my stay, so hopefully will be able to keep it accurate.

It feels really good to be home and I’m confident that it will speed up my recovery; little things like needing to use steps to visit my little furbaby Jasper will encourage me to do so daily and even trips to the toilet provide more exercise than having a toilet in my room. I just have to remember to go as soon as I need to as it takes me about 15 minutes to get there with my walker and I’ve had a few close calls already!

Finally, thank you to everybody who visited, sent cards and messages of support to me while I was away. It makes all the difference in the world to dealing with all this and I count myself very lucky to have you all.

Take care all,

L

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{Backdated Post}

Today was a rather confusing day. I woke up in a lot more pain than usual and several jonts in my arms had started to swell and seize up again; not surprising when I was having to bear my weight through them when using the zimmer frame to walk about.  Disappointingly, I needed more help than I had done over the past couple of days and the nurses soon noticed and assured me they’d get in touch with my doctors and the Pain team.

Late morning, the Physios arrived to see me. Despite my painful arm joints, I had to keep on using the zimmer as the ‘lesser of two evils’; I couldn’t come this far in building up my walking, only to let my hard work go down the drain to protect my arms. Plus I was making progress. Since the cortisone injection in my hip the previous day, I was finally able to lift that stubborn left foot of the floor a few centimetres and take a proper step. This did a lot to reassure me that I would get normal function back, because I was still very worried it would be lost at this point.

The Physios had their concerns too: now that I’d had the procedure to my hip, the rest of my recovery was down to rehabilitation and they mentioned that I was due to go to a Residential Mobility Rehabilitation Unit for a few weeks. However, although I’d benefit pysically, they said that because of my age various people felt that it might not be the best place for me emotionally, being mainly old people there. Instead, they had put the suggestion forward to provide the same support within my own home, which to me sounded much better.  But I knew I had to have that support in place straight away, because I wouldn’t be able to manage on my own and they agreed. They left shortly afterwards, telling me that they would communicate my thoughts and, if it was agreed that I could avoid the Rehab Centre, would start putting the ‘home plan’ into action. They would see me on Monday to make a start on using crutches.

I have to admit, I was a little worried that I’d end up at the Rehabilitation Centre; my Nan had spent time in one, so I had a clear image of what they were like. It sounded promising that I’d get the support at home though and nothing was going to happen just yet, so I tried not to think about it too much. My main concern for now was to sort my elbow and shoulder joints out, so they wouldn’t prevent me from using the zimmer and carrying on with my walking. The day passed as normal; then, at some point in the afternoon, a doctor I hadn’t seen before came to see me. I assumed that he was one of my Consultant’s juniors, come to assess my joints and pain, (which was quite severe by this point), but instead he declared that I was free to go home!

I was a bit stunned as he left the room. Obviously, it was great news that I could go home, but only hours earlier I had been facing the prospect of a Rehab Centre and talking about my next Physio session on Monday…. then again, it was Friday and I know how they like to clear people out before the weekend if possible!  A nurse came in to tell me that my medication was all ready and I asked her all the questions I hadn’t managed to get out with the Doctor: mainly about the support I would receive at home. This wasn’t something she’d been aware of and so she left to chase it up, returning to say that I could only leave when that was arranged and the appropriate equipment provided.

A lot of confusion ensued.

The Physios returned and weren’t very happy that it was all happening so sudden and fast – they had a few hours, last thing on a Friday afternoon, to liase with a different County Trust about providing my care at home – something that proved very difficult, taking over a week to put in place – and to get me up on crutches, ready for home. I was already struggling with the zimmer, but putting weight through my locked elbow using crutches was agony; I knew so and they knew so, but it seemed I just had to grit my teeth and get on with it. I didn’t manage very well – a couple of steps – and the stairs were a nightmare that drove me to tears, but by this point I felt so confused and frustrated with the situation that I just wanted to go home. The Physios had their doubts but the decision had already been made..

Back on the ward, nurses and auxilliaries kept popping in to say their goodbyes. Eventually, my Rheumatologist came to see me and the whole situation suddenly felt too much. Here I was, feeling worse than I had been, unable to do much for myself or to use the crutches to get around and yet being sent home all of a sudden; moreover, I was being told different things by different people about whether I was ready to be home or not. And so I got a bit emotional. I don’t really remember what bothered me the most, I think that was probably the issue – I didn’t know what I felt myself anymore – just bewildered.

My Rheumy explained that I wasn’t actually admitted under his care (as I had come via A&E), but the care of the doctor who had visited me earlier, and it was this doctor’s decision to discharge me. He also explained that now they’d done the procedure, there was little else they could do for me in hospital, but that he was happy to request I stay until Monday if I felt I needed it in order to cope better. But who asks to stay in hospital? If they thought I was well enough to go home, I wanted to go home! Aslong as I had the support they had promised in place. He took a look at my joints before he left for the weekend. There was nothing he could do about the shoulders, since they had only been injected the previous week, but he agreed that we should inject the left elbow. This elbow has troubled me for some time now, swells painfully and locks at an angle, but doesn’t respond very well to cortisone injections; however, it was worth a shot (excuse the pun) if it gave me a better chance with the crutches.

In the end, they weren’t able to provide me with the equipment I needed for home that night and so I had to wait for it the next day. It somehow made staying there harder than it had been, but at least I knew I would be home soon and it gave me a little bit of extra time to practice using the crutches.

I was right to be worried though. Even then, I didn’t realise quite how hard a transition it would be to go home, but we would do it and manage.

L

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{Backdated Post}

This morning was an extremely difficult time, but I was closer to getting things more under control and was finally receiving the right care.

They woke me at 8.00am to take me down for an MRI (Magnetic Resonance Imaging) scan of my hips and spine; unfortunately, the porter collected me before the pain medications were dispensed and by the time we got down to Radiography, I was distressed and shouting out with the excruciating pain once again, especially after being ‘patslided’ numerous times (this is undoubtedly a useful way of manouvering immobile patients, but does not protect you from the pain of such movement). They had to call up to the ward to bring some relief down, since I needed to be still for the 40 minute scan and at this point it wasn’t looking likely. Even the Morphine didn’t really settle things down; I was realising that by the time it got to such extremes, it took repeated doses to get back on top of it. They asked me if I wanted to postpone the scan but I felt that it was needed to get to the bottom of what was causing the pain. The sooner we found that out, the sooner we could treat it properly.

So I told them I wanted to go ahead, grit my teeth and attempted to take my mind elsewhere.

The MRI Scanner

I’ve had many MRI scans in the past and usually find them quite relaxing, despite the noise. They lie (sometimes strap) you on a stretcher that moves into a tunnel, where the scan takes place. In the above picture it looks like the patient has gone in headfirst, but in my experience my head has been at the entrance – much less claustrophobic. Usually, they give you headphones (often with music), both to protect your ears from the noise and to communicate with you from outside of the room; they also place a buzzer in your hand, which you can press at any time you feel distressed or want to stop. The scan is not painful. It basically consists of rotating magnetic signals being blasted at your body as you lie very still – you cannot feel these but they are expressed as noise patterns that change with different frequencies etc. So for five minutes it might sound like you’re surrounded by knocking, the next five by drilling, the next five by clicking, tapping, zapping and so on… A lady I met even described one of the noises as reminding her of frogs croaking first thing on a wet morning in Borneo!

I tend to just shut my eyes and relax, as if going to sleep; but this particular scan wasn’t that easy though. It was torture just making myself lie still, as my body kept trying to tense up to protect itself from the pain; I had to consciously relax every muscle and breathe. I think I cried through a good ten minutes or so of it but knew that wasn’t helping, despite it being an automatic response. The pain was still severe but eventually I managed to distance myself from it; I can’t exactly explain how – I’ve read a few books on meditative practices, so maybe they came in handy? I knew that each change in the sound pattern meant a certain amount of time passing and soon enough it went silent and a voice in my ear was telling me it was finished. To say I felt relieved would be an understatement!

Obviously, it takes time for someone to analyse the MRI scan pictures and give a full report, but sometimes things are apparent straight away. For me, they noticed that I had a lot of fluid surrounding my left femoral head (ie. Left Hip joint) and a smaller amount around the Right. I was taken straight to another part of the department to have this removed by aspiration and ultrasound. By that point, I was allowed further pain relief and this dose worked enough for me to feel a lot calmer. It’s embarrassing to look back on now, but I caused quite a scene that morning howling like a banshee and such. Thank goodness the worst was now over.

I was quite nervous about the hip aspiration. I’d had it done as a child but they put you under with gas at that age; this time it would be an injection of local anaesthetic. The team of people with me were lovely and great at making me feel at ease; the Radiographer in particular had a very calming effect and I felt in very safe hands.  He used the ultrasound scanner to examine my left hip first and to pinpoint just where the fluid had accumulated around it. This is similar to the scanners you see unborn babies with – a cold gel is placed on the surface of the skin and onto a ‘probe’, which the radiographer slides over the area in question, sending ultrasonic waves through the skin. These waves bounce off things inside at different levels (according to density I think), to create the pictures you see on the screen – the main thing I learnt is that fluid bounces back as black, so when he was looking for the fluid around my hip joint, it appeared as a large black shadow around/within the hip, which appears a greyish-white as that is denser.

Once he found the fluid, he needed to find a straight path to it from the skin surface without passing through any major blood vessels – there is actuallly a lot more time spent preparing the procedure than the procedure itself. Happy that he’d found a route, the radiographer then slowly began to administer the local anaesthetic by long needle; he did this in stages to ensure that I was as numb as possible, but as he came closer to the joint itself, he began to warn me that I’d feel quite a bit of pain but it would be shortlived. The pain didn’t come. He kept asking me “are you sure you can’t feel anything?”, while jabbing the needle further in, and I kept shaking my head. It was a bit like the movie ‘Death Becomes Her’ where the doctor can’t understand how her very broken wrist isn’t troubling her!

I asked him if this was something to worry about and he pulled that confused, thinking look that doctors do sometimes, as he explained that most patients find it at least uncomfortable to have a needle in the joint capsule. He said if I really wasn’t feeling anything, then he’d be concerned that I had some nerve damage to the hip itself and that this should be investigated too. For now though, we concentrated on the aspiration. With the needle in place, he was able to aspirate 5ml of fluid from the hip capsule; this didn’t look an awful lot to me – one small syringe, whereas my knees used to drain 2-3 much larger syringe-fulls as a child – but apparently it is a lot, as there is very little ‘spare room’ within hip joints. I was told that this explained the level of pain I was in and the lack of response to pain relief. He told me that they could have given me all the pain relief in the world, but as long as that fluid was stretching the joint out of place as it was, I’d have had excruciating pain. Hopefully, with it now gone, things would settle to a more bearable level.

I was confident that they would; in fact, I was pretty sure that I noticed an improvement as soon as the fluid was gone. I was by no means cured – the fluid needed to be sent for testing to rule out septic arthritis and we needed to find out if anything other than the Still’s Disease was causing the hip to produce so much fluid / get the full report on the MRI scan etc…  I have had very fluidy joints in the past, but I can’t remember where it fits in with things. Since this has become a major issue this past week, I will look into it myself at some point. After the hip aspiration, I was also given an abdominal ultrasound; something I was due to have that day anyway. It showed that my liver and spleen were enlarged, but since this is common with my flares, it didn’t cause him too much concern.

The rest of the day blurs in with the rest; I was to remain slightly propped up on my back in bed to take the pressure off my hips until the full MRI report was back, but with no turning timetable; instead I had to be checked for pressure sores and, when developing the starts of them on my heels, had to rest them on an inflatable. The auxillaries had to do everything for me – wash me, dress me, toilet me, help feed me… but when you feel so poorly those things don’t bother you, you’re grateful for the help and they were brilliant at providing it. I slept a lot but my Kindle came in handy as I managed to hold it above me to read for short periods but then my friend downloaded some audiobooks onto my blackberry, which was even more perfect! People were always popping into my room to see if I was okay and I had plenty of visitors, so strangely, I never felt bored!

It was decided that we would go ahead with my fifth Tocilizumab infusion that afternoon; the initial feeling on examining the fluid from my hip was that it was ‘viscous and stringy’, a good sign that there was no infection present. If it turned out there was, I’d be hooked up to IV antibiotics straight away anyway… it was one of those ‘risk-weighing’ decisions and I guess there was more risk in leaving the Still’s untreated by this point.  My infusion ward was only next door and my regular nurses took it in turns to pop round and check on the infusion and to see what ‘trouble’ I’d got myself into. They all have a way of making you feel that they care about you as an individual and they have a lot of patients going through their ward each week/month/year.  I guess this is an example of how good care can be in hospital too – from one extreme to the other.

My consultant visited that afternoon but I don’t remember much about the conversation now. All I know is that I was pleased he took the time to see me and it again reassured me that I was on the right track. One thing that we both agreed though, is that I’ve had some nasty flares and some severe joint involvement over the years; but this hip pain was totally out of proportion to anything I’d ever experienced and we needed to get to the bottom of it fast.

L

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So, December flew by and it was infusion time again. I woke up earlier than normal to get to the hospital on time and wasn’t feeling great at all. It took a lot of help and determination to get myself into the car as I was stiff, in pain and as weak as a kitten.

We arrived on the ward and the nurses noticed I was struggling straight away; I don’t even remember them fitting the cannula or taking my blood, but while taking my observations the Sister asked me how long I’d been feeling this way. I told her everything, she asked if I was feeling breathless and I explained that it wasn’t breathlessness exactly but a sense that I might forget to breathe if I didn’t make a conscious effort. I’m sure others have felt this too at times. She was obviously concerned and called my Rheumy straight away.

It wasn’t long after, that he came to see me; he asked if I felt awful in the usual way and I explained mainly as a Still’s flare but that I’d also experienced muscle weakness comparable to when my diagnosis was Dermatomysositis at 14. He examined my joints and said that he could feel the heat from them through my clothes, particularly my elbow and knee, which he injected with cortisone. Since there was no reason not to take Ciclosporin with the Tocilizumab and I’d responded well to it in the past, he decided to take me off Methotrexate and put me back on Ciclosporin at 300mg a day.

He also said he had spoken to a Paediatric Still’s specialist called Dr Helen Foster, who has lots of experience with Tocilizumab and had told him that it is not unusual for there to be an interval between test results and symptoms improving.  So I am still hopeful that this could be the winning combination and if I ever feel as good as my inflammation markers currently are (ESR of 8 and CRP less than 1 – both results the best we have ever seen for me) then I could end up feeling pretty fantastic in the near future. We just have to keep an eye on some of my other blood test results, as my WBC is low at 3.5 and neutrophils at 1.5. I don’t want a repeat of last year when Imuran caused Neutropenia and left me in an isolation room in hospital. Hopefully, this time round it has been the Methotrexate and not the Tocilizumab.

The last thing that we discussed was my recent neck pain and current hip trouble, which is agony. He had barely moved my right hip before I started yelping out in pain. It could be inflammation, or joint damage from the Still’s but he also mentioned something called Avascular Necrosis, which is when the bone tissue dies and can be caused by prolonged use of steroids. It has been fifteen years on Prednisolone without a break for me, plus the joint injections and occassional IV, so he sent me off for xrays of the hips and neck.

I was wheeled down to the xray department, where I struggled getting changed into a gown, getting up from lying on my back after the hip xrays and standing up for the neck ones. It made me realise just how much I have been relying on other people and on minimising what I do. Once we were back on the ward, I had a nap while we waited for the Tocilizumab. The infusion arrived just before 5.00pm and takes an hour to go through, it makes me feel warm but apart from that I have no reaction to the infusion itself. We left the hospital just after 6pm with my next appointment booked for the 2nd February, and knowing that my Rheumy would get in touch in between with my xray results.

So now I’m pooped and have that slightly overwhelmed feeling I get when having to take so much information in from hospital visits. I’ve probably said it before, but it makes things feel so much more real on days like today.

I’ll be good after a sleep,

L

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After missing my Rheumatologist at my infusion on Thursday, it was nice to find an email from him in my inbox this afternoon. He said that my recent test results were much better than they’ve been for a while now, which would be great news if only it reflected how I feel! The fact is, my joints have been feeling pretty terrible – with the ‘usual’ left shoulder and elbow pain / restricted movement, swollen right knee, sore neck and awful pain in my hips that makes me queasy.

So I don’t understand how my blood test results are improving!

Is my body just a bit slow on the uptake?

Hopefully, it is a good sign though, especially with the brief improvement I had after the first infusion. My theory is that once it builds up in my system a bit more this improvement will be more noticeable and long lasting. The drug is obviously having some effect on my body if my blood is showing changes that it hasn’t done before?! Many people with Still’s Disease receive Tocilizumab once a fortnight rather than four-weekly, so perhaps this is an option to consider too.

He also said he’d be happy to see me in clinic if I felt I needed my knee injecting… but now I’m even more tempted to struggle on a bit longer, in case I see some improvement with the Tocilizumab. Otherwise, I might get a false impression of what’s going on joints-wise. Of course, if things get too bad, I’ll be straight on the phone to him because I don’t want to do more harm than good.

L

Edited to add: I’m sure I have a bit more movement in my knee again, I seemed to be managing steps much easier this evening. Fingers crossed!

 

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Apologies if this post is a bit rough around the edges, but I wrote most of it post-surgery and I’m feeling rough around the edges too!

Infusion days always feel full of hope at first, that today could be the day that things turn around. We arrived on the ward at the normal time and had the usual pre-infusion checks – Blood test, BP, Pulse, Temp etc.  The nurse asked about any new symptoms / pains, so I had to mention the stitch-like pain beneath my ribcage, even though it could disappear as fast as it came – there have been no obvious side effects from the Orencia, thankfully.  With the cannula fitted easily, it was back to waiting for the test results and the go ahead for pharmacy to mix the infusion.

My rheumatologist came to see me a couple of hours later and I filled him in on how things had been since the last infusion – to cut it short, that I’d been having too many days when I couldn’t even get out of bed on my own and so had increased my Prednisolone to 20mg again, and that I’d been more stable since but still not brilliant.  My blood test results told the same story, I was still anaemic with a haemoglobin of 8.3, but there was a slight improvement in my inflammation markers, with my CRP down from 112 to 80ish, thanks to the extra steroid.

For the first time since starting Orencia, I am beginning to lose my enthusiasm for it and my rheumy pretty much admitted the same thing.  We both want to give it a full opportunity to work though, so are going to stick with the infusions a bit longer. I mentioned that it has definitely helped with the fatigue, which is the difference that I noticed straight away and what got my hopes up initially, but it just hasn’t reached the joints yet and I’m not sure if it will.

The infusion itself went fine, no line resistance thanks to the vein having time to recover and sticking to those guidelines too of course! I didn’t feel the rush I had felt after my first few infusions but then I’d had a late night and was pretty shattered anyway.  I’m trying not to read too much into it, but it is getting harder to believe things could turn around at this point.  I just don’t want to be negative but at the same time I need to be realistic.

My next infusion is in three weeks, rather than four, to fit in with my trip to New York, and in the mean time I need to double the dose of Methotrexate to 15mg – ugh.  I am definitely not enthusiastic about that but I’m willing to give it a go if it gives the Orencia a better chance.  It is still smaller than the dose I was on all those years ago; I just hope I don’t get hit with terrible nausea when things have been so good so far – I don’t want to be sick on the plane or in New York(or anywhere for that matter!)

Speaking of New York, my rheumy seemed really pleased that I was going and said it was one of his favourite places.  We made a plan to try and make sure I will be as well as possible for going, including the early infusion and then a couple of joint injections to give me some relief/movement in this left arm, and maybe another increase in the Prednisolone.  I felt really pleased that he was supporting me, because it reaffirms that I can’t let the Still’s Disease get in the way of enjoying my life.

So for now, I’m just trying to take it a day at a time and not look too far ahead. Ce sera sera.

L

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I was surprised to find six new articles about Still’s Disease in my inbox this morning, thanks to the drug Tocilizumab being approved in the treatment of children with Systemic Juvenile Idiopathic Arthritis.  This drug is being hailed as a wonder drug in the treatment of Still’s (sJIA), with patients so far showing a 90% increase in wellbeing; as these articles state, even children that were previously wheelchair bound have been given a new lease of life.  What I didn’t know, is that Tocilizumab is actually the first drug to be approved to specifially treat sJIA/Still’s.

The first article from the Daily Mirror tells of a young girl with sJIA, who was bullied for being in a wheelchair and was crippled by pain, even with Morphine, but is now leading a ‘normal’ life thanks to Tocilizumab; she talks about how it has literally transformed her life, which is what we all want.

The next article  from the Daily Mail is my particular favourite, since it features my Paediatric RD Eileen Baildam, who played a major part in the drug trials:

“Dr Eileen Baildam, consultant paediatric rheumatologist and triallist at Alder Hey Children’s Hospital, Liverpool, has treated 12 children with the drug and seen them all make a remarkable recovery.  She said ‘These are very sick children, the disease affects every single joint in their bodies as well as heart and lungs. They can die from heart failure and other conditions if they don’t get treated. It’s much worse than rheumatoid arthritis in adults.”

The article goes on to say how two thirds of patients treated with Tocilizumab had a 70% improvement after just three month, with this increasing to a 90% improvement after a year of treatment, with little or no side effects.  The drug costs the same as similar biologic therapies available, but the NHS is currently assessing whether this will prove cost effective in the treatment of children.  Dr Baildam says:

 ‘I hope and expect it will be approved and I think it should be given to children as soon as they are diagnosed to limit the disability caused by this dreadful disease.’

And I would agree with this – surely in offering this drug to children as soon as they are diagnosed will limit the amount of damage the disease causes, mean less hospital admissions, tests and procedures, plus shorten the length of time spent by doctors trying different medications, many of which have serious side effects that could in turn lead to hospital treatment being required.  All these things would suggest that early treatment is absolutely cost effective.

The other articles are all pretty similar but I’ll link to them anyway: The Independant Health News and The Liverpool Daily Post; the sixth one was very basic so I’ll leave that out.

All of this is extremely good news for Still’s patients, whatever their age.

L

Ps. To see why the terms Still’s Disease and sJIA appear to be interchangable in this article, please read my earlier post ‘Confused About Still’s Disease?‘  This interchangability causes much confusion.

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Perhaps my bubble is about to burst...?

After everything that happened at the hospital yesterday, I was feeling pretty confused and disheartened, plus I was absolutely exhausted.  Hospital visits do this to me – so much energy is put into preparing myself for them: thinking of the things I need to discuss, prioritising a host of symptoms, making notes and then trying to make sure I express everything that I need to clearly… and then in the appointment itself, taking in what the consultant says, absorbing and digesting it, understanding what it means for me and thinking about the consequences of any decisions on the present and the future. 

When I’m flaring, I go to these appointments with a sense of anticipation, that maybe my doctor will have a new solution, a miracle up his sleeve that will make me feel better – something solid I can take away with me there and then.  Although, realistically, I know that this isn’t how the game of treating Still’s Disease goes – it’s more like snakes and ladders, just as you think you’re getting somewhere, you get sent sliding back down to the bottom – so perhaps I’m setting myself up for disappointment each time. We try to keep our discussions positive, but at the same time you can’t shake the feeling of uncertainty about it all and I always leave feeling like I’ve been through the wringer, with my mind whirling and body exhausted.

However, I woke up this morning feeling more like myself, determined not to let this latest setback get me down; yes, the things we discussed were worrying and confusing but at least I was feeling more able to do certain things and surely I need to make the most of that even if I can’t explain it. Maybe the bloodwork is just taking its time catching up, I don’t know, but I was happy just to carry on and know that my doctors were keeping an eye on things.

Morning and early afternoon passed by fine; I’d managed to get a few things done when I noticed I was getting quite a bit more pain in certain joints.  Half an hour later, I felt it was bad enough to require an additional dose of painkillers (I try and stick to 2 doses a day) and as my heart was racing too (156 is high even for me), I decided to have a bit of a nap.  I must have dozed off because it was teatime when I woke up, but I quickly realised that the pain had gone even worse, so much so I couldn’t lift my head from the pillow or move my arms from under the duvet, every inch of my body seemed to burn or throb with pain.

In the end, I needed help to even sit up in the bed and later to hobble about. My boyfriend’s parents were understanding, but I felt embarrassed and ashamed that they had to see me so helpless, especially when it came out of the blue. How can I explain it to them, if I don’t understand it myself? There are a number of thoughts floating round my head right now – could it just be that I’ve been building up for another Still’s flare these past few weeks, has the Methotrexate effected me in some way or maybe even the Orenia? Or has my mind been playing tricks on me all this time?

Do you think it’s possible to think yourself better, even if you’re not?  I was soo looking forward to starting Orencia that maybe I built my hopes up so much that I believed it was going to help and expected nothing less.  Perhaps I imagined the tipsiness, the tingling and the new strength and energy, getting through the wedding weekend on optimism and willpower alone. What if it has just been a case of mind over matter so far, and now that I’ve been faced with the reality of my bloodwork the illusion is shattered and it’s just not enough to keep the physical things away anymore..?

There are no easy answers. All I know is that I haven’t hurt like this for a while and I’m at a total loss what to do.

L

Ps. Most of this post was written the morning after, I was just too sore to even type last night.

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Well, what a day.

Arrived on the ward (just in time for lunch) and had my canula fitted, bloods and obs taken etc.  The nurses asked how I’d been since last time and I told them I had definitely noticed an improvement since starting the Orencia infusions.  I have a bit of a wait after that so settled down with my Kindle; an hour later one of the nurses came in looking quite worried and asked me if I was sure I was feeling okay, that my test results had come back and were so bad they were trying to contact my Rheumy.

They spoke to him on the phone and he said he’d pop up when he could. I was glad of the chance to talk things over with him, as I have been feeling confused and the blood test results only made me more so.  I told him how well I had felt after the first infusion and that I was noticing some improvement with my energy levels even if it hadn’t reached my joints yet, many of which are still stiff and painful.  I explained that the Methotrexate had given me some side effects, that these had lessened slightly to effect me mostly on just a few days (Friday, Saturday & Sunday) but left me feeling drained and sickly.

Today was supposed to be one of the good days – I thought I had a bit of colour – but my Rheumy said I was noticeably pale, so I told him about the bad days when I look like a zombie with purple rings round my eyes.  He told me my haemoglobin level is 8.0, so that at least explains it.  I am worried that it is the Methotrexate causing the Anaemia but my Rheumy says it’s more likely to do with the Still’s Disease being active and having lots of inflammation – Anaemia of Chronic Disease.  My GP on the other hand, thinks I have Megaloblastic Anaemia caused by low folate levels and since Mtx is a folate depleter it would make sense that it has become worse since starting it, even with taking a Folic Acid supplement.

They did check my Folate level yesterday but the result didn’t come back while I was there; Rheumy said he’d keep an eye on things and see me again at my next infusion in four weeks.  Hopefully by then things will have settled down and the methotrexate will be doing more than making me feel queasy – it takes 8-12 weeks for it to boost the mechanism of the Orencia.

I did at least get my infusion, but I was left completely befuddled by what had been discussed.  How can I feel so certain of an improvement when my bloodwork is getting progressively worse? Am I imagining that I can get out of bed in the morning, without assistance? That on most days I am showered and dressed by 10.00am instead of having to wait until my painkillers etc kick in, usually only getting myself ready after noon?  I know that I’m still in quite a bit of pain with my joints but I was happy that I at least had a bit more energy; but how can even this be when I am so anaemic?

There have been times when I’ve felt dreadful and my results haven’t been too bad, so just how reliable are they?  I guess all I can do is carry on the way I have recently, believing that I at least feel a little bit better, and hope that the results settle down and catch up with how I’m feeling. If I think about things too much, I’m just going to get more confused and disheartened with it all and I don’t want to give up on Orencia just yet.

L

Previous posts related to this one:

First Orencia / Abatacept Infusion

Second Orencia Infusion

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