Posts Tagged ‘Abatacept’

Just a quick post. I have posted a poll on the blog’s Facebook Page asking what current Biologic Treatment people with Stills are currently taking, so that I can try and see which drugs are the most widely used in the treatment of Still’s Disease.

The poll here is slightly different, in that you can vote for more than one option, to give you the opportunity to record each Biologic drug you have tried, since I figured this might give us a broader spectrum to base results on.

You can take part in both if you wish!

NB. Please only vote on the poll if you do have a diagnosis of Still’s Disease, Adult Onset Still’s Disease or Systemic Juvenile Arthritis, thanks.


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I don’t know where this week has gone and can’t believe I’ve neglected the blog for so long, it’s not as if I have nothing to write about.

To update you on the Still’s situation I need to go back to mid-September and my last Orencia infusion, which was quite literally my last.  My blood test results weren’t looking any better at all and the fact that my knees were swelling for the first time in ten years seemed to prove a point; so, both myself and my rheumy came to the conclusion that Orencia wasn’t effective at treating the majority of my symptoms and never would be. Instead, he decided to put things in motion to start Tocilizumab (RoActemra) at my next appointment if the funding application went through fast enough.

I’m pleased to say that he emailed me at the beginning of the week to let me know that my local PCT has agreed to fund the switch to Tocilizumab and I shall be having my first infusion on Thursday 13th October, on the same ward as I’d been going for the Orencia. I’ve heard a lot of good things about this drug and so I’m trying to keep optimistic, although it’s hard to when I haven’t responded typically in the past.

My joints were in a pretty bad state when I saw him in September too, I was finding it difficult to walk/dress etc and needed a few cortisone injections – there were plenty of joints to choose from but in the end I went with my locked left elbow (hoping that some would travel to the shoulder/wrist) and my right knee (hoping it would help the hip too), which I needed to be up to walking the streets of New York. Thankfully, the injections and a short boost in prednisolone did the trick and there was only one time that I struggled on the trip.

Even the time difference didn’t send things flaring, which I had half expected because I know what a major role my sleep pattern plays in keeping me ‘well’. Usually, I only have to go to bed a few hours later and I suffer the next day – I can’t sleep in as that makes me feel rotten, but even if I did I wouldn’t feel any better.  But I managed to say awake for almost 24 hours on both journeys – must have been the steroid rush.

Since being home and reducing my Prednisolone, the aches and pains have slowly started to creep back in but I’m still doing better than I was last month and have been trying to make the most of it by sorting out a few things around the house.  I guess it makes things easier knowing that I’ll be trying a different approach next week.

I’ll leave it there for now and promise not to leave it as long in future – there is so much more I need to write about, not to mention catching up on my articles!


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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.


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I’ve got a busy few days ahead so not sure when I’ll be able to post updates.

Firstly, tomorrow I’m going for my fourth Orencia / Abatacept infusion in Manchester, which means another blood test and hopefully a visit from my rheumy.  I’m interested to see what the results will show. I’m not really sure what to expect from them, as I’ve been up and down on a  physical rollercoaster since the last ones four weeks ago – just before I ended up in hospital.  If they’re better, then great but are they better because of the Orencia or because of the Prednisolone? If worse, well where does that leave me?

Results aside, I do feel better in some ways – like I’ve said before, I have more energy most of the time and I am up and about, able to do chores and things nearly every day. But I am also in pain every day, in numerous joints, especially my left shoulder, elbow, wrist and fingers.  Most days I can barely move this arm; the elbow has been locked since May and is showing no signs of improvement, even when I increase the Prednisolone.  I guess I’ve just become accustomed to the fact that it hurts and doesn’t work properly, although I know that’s not right.

Hopefully, I’ll get more answers and a plan of action tomorrow.

On Friday I’m having minor surgery on my hidrandenitis abscess/gland/tracts/scar tissue – all of which is hopefully going to be removed and then stitched back up. I’m sure he said it would be stitched back up; sometimes they leave the wound open to heal from the inside but I want those stitches… I’m still feeling a bit nervous about it all, I guess it’s unknown territory for me.  What I have to remind myself of is all the misery it’s caused, having to put up with the damn thing for over a year now, and how sore and uncomfortable I’ve been every day because of it. Hopefully, this will be a means to an end of all that.

I’ll be glad when it’s all over and I can spend the weekend relaxing.  We should actually be celebrating, because Friday marks four years with my wonderful boyfriend, but I guess that will have to be put on hold unless he has something up his sleeve…

For now, I’m just making the most of time at home and looking forward to film night with my friend – who is bringing Zoo Keeper and Mr Popper’s Penguins round later.

You’re never too old for Penguins..


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As I mentioned in my last post, I have had more good days than bad this week and am feeling much better in myself, even if the joint pain and swelling is still there.

This could be down to the Orencia and Methotrexate combination I started at the end of June; I have had three infusions so far and my next one is scheduled for August 25th.  I was sure that I felt a difference after the first, I had more energy and even managed to have a dance at my friend’s wedding a couple of days later. However, at my last infusion, my rheumy was concerned that my test results were actually getting worse, which of course doesn’t fit.  I was confused  but decided to listen to my body and take every day for what it was; time would tell in the end.

I have read of other people who experienced an increase in wellbeing and energy levels, whilst being treated with Orencia, despite still having active disease and joint involvement.  Perhaps this is the case for me, or maybe it just takes little longer to dampen down the inflammation?  But there is another factor that could explain my current ‘wellness’ and that is where the dilemma comes into play:

Both times I have been on the better side I have been taking 20mg of Prednisolone, which I initially tried to taper off.  The most recent increase to 20mg was just under two weeks ago and I’m still currently taking it, grateful for some relief.  We all know how effective Prednisolone is at providing this short-term relief so it would seem that this is obviously to thank for my good days (in part at the very least). 

But my worry is, how are we supposed to know how well a new drug is working for us if we ‘mask’ our symptoms and disease activity by taking Prednisolone and even pain killers?  I know that the theory is to taper off the steroids after so long on the new treatment to see if it ‘holds’ things at bay, but how disappointing to go through months of treatment, convinced that it is working and find out that it was only the Prednisolone doing its stuff, not to mention the frustration of having to do it all over again with another drug.

I’m not suggesting we shouldn’t use steroids and pain killers to tide us over the worst times; in fact, I don’t even want to think how bad I’d feel without them!  I just wish there was an easier way.  It’s hard to explain to people that see me looking a little better and want to enthuse about my new treatment, that it might not be down to that after all – just a pred boost.  Speaking of which, I saw my manager while I was out yesterday and immediately felt guilt ridden.  There I am, out and about, yet unable to let them know even a general idea of when I’ll be fit to return to work.

This doesnt mean I have given up on the Orencia working for me.  I’m probably being a bit impatient; after all, I was told it could take 3-6 months to really feel any benefits and I’m not even at the two month mark yet.  I just don’t want to have to depend on the Prednisolone for good days over the next few months and I want to be able to tell whether my new treatment is helping or not – even a general idea would be good. If only scientists could produce a similar drug to Prednisolone, without all the horrible side effects, all of our problems would be solved.

It’s a battle of wills, but we must keep fighting.


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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.


Previous posts related to this one:

First Orencia / Abatacept Infusion

Second Orencia Infusion

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Considering we only had an afternoon slot at the hospital this time, it has been a loooong day.  Arrived on the ward at about 12.15pm – just in time for lunch! – and then had my canula fitted and routine bloods / obs taken.  I was expecting everything to be fine but my temperature was slightly high at 37.3 and my pulse rate 118, meaning I was given an infection risk score (which my high WBC probably only added to later). 

These levels are pretty normal for me, but they still needed to get a doctor to give them a go ahead for the infusion.  I can only guess that this is what took so long, but finally at 4.30pm I was hooked up and ready to go.  The infusion got off to a shaky start, repeatedly claiming that the line was blocked, then just as we were about to try another vein it decided to behave and went through uninterrupted.  I am definitely going to insist on a different vein next time though as we went for the previous one again, despite having this issue before.

Again, there were no drastic side effects from the infusion itself – just a bit of tingling at the base of my skull and then a five minute spell of feeling tipsy afterwards (again not unpleasant!).  After half an hour observation, to make sure all was in order, I was free to go!

I swear that by the time we were on the road home I could feel a difference –  revitalised and like a pressure had disappeared from my chest.  I even joked that I would run home to beat the traffic!  To me this is a very good sign, I have always said that the fatigue was possibly the hardest thing to live with, but obviously I need to see some improvement in the joints too, which I have to admit I didn’t get last time round. 

But, I think this will just take longer to happen.  My rheumy did say it can take months for the drug to reach its full effectiveness and so I consider myself lucky that I’ve had such a good start. 

I’m hoping that from here, things can only get better 😀


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Today marks the start of round two in my current treatment plan: Tonight I need to take my second dose of Methotrexate (just as the nausea was subsiding) and then tomorrow afternoon I am off to the hospital for my second Orencia infusion. 

The Methotrexate has surprised me a little; I wasn’t expecting to feel so sick on such a small dose and then there was the bone pain that came out of nowhere – I can see myself becoming part of the club that dreads that day of every week.  I also can’t help thinking that I was better off without it but, then again, it is early days so I need to give things a chance to see how they pan out.  If I see my consultant tomorrow I will mentioned the side effects I experienced – maybe there is something I can take to help with the nausea etc…

He never said whether he would be popping by to see me during my infusion tomorrow, but I haven’t spoken to him since the first one and I would think he’d be interested in seeing how things went.  He’ll probably think I’m crazy when I tell him I felt a big improvement straight away – or maybe he’ll just be encouraged that this is the right drug for me.  I feel excited in a way, because if I notice such a difference this time then it means it must be the Orencia helping.  But what if it doesn’t? Am I going to feel disheartened?

I’m a bit concerned about the vein situation, since the drip struggled to go through my ‘best’ vein last time and I don’t have a whole lot of options – they have suffered from the monthly IV Ig and other IVs over the years.  I’ll just have to drink lots of water in the morning and hope for a miracle.

Wish me luck


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I guess most people wouldn’t choose to start a drug like Methotrexate on their birthday, but it seemed the best option in light of the others.  When I took Mtx as a teenager, I split the dose over two days – Friday and Saturday – which meant that I would get the nausea etc on the following days and not during the week, when I needed to get through college.  I figured that this time it might be nice to have my weekends to do nice things when I’m well, plus I may eventually work Mon-Wed at some point, so Thursday was chosen as the ‘least important’ day of the week.

I’m not really looking forward to taking it again as it did make me quite sick and never really seemed to help, but at least this time it’s only a small dose of 7.5mg to help boost the mechanism of the Abatacept.

I’ve saved taking it until evening, so here we go…


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Well, after all that worrying about how I was going to physically manage my friend’s three day wedding event, things turned out pretty well and I had a fantastic time!  I practically bounced out of bed each morning and felt much like my old self; in fact, I didn’t struggle at all.  I had expected that, after such a long day with so much standing etc, I would have to excuse myself from the evening reception quite early… but no, I was still there at midnight and even managed a dance or two. Unbelievable!

I don’t want to be too hasty in claiming that the Orencia infusion has worked a miracle; friends have suggested I may be running on adrenaline or even some sort of placebo effect and they may be right.  BUT… I am feeling stronger in myself, as if some sort of energy / essence that had been lost, has returned.  The joints are still stiff, some are swollen but there is less pain and I’ve always said that the fatigue is the hardest thing to deal with, so to me there is a noticeable difference and I do believe that I felt it straight away.

First there was the warm, tipsy, glow I felt after the infusion and the sensation that I could clench my hands again and feel some strength in them, while we were driving home.  Then, when I was trying to drift off to sleep, I felt what I can only describe as lots of little fireworks in my bloodstream – as if I could feel the stuff circulating in my veins.  Perhaps I have an over active imagination but that’s exactly what I felt. 

When my alarm went off at 8.00am the next day, I felt ready to take on the world; there was no slow rolling over and unfolding myself painfully out of bed, testing out my wobbly legs and struggling to heave myself up. I didn’t need to wait for my painkillers to kick in before taking a shower, dressing and managing the stairs.  Instead, I did those things the way most people take for granted – without even thinking – and even decided that I would NOT increase my dose of Prednisolone to 40mg after all, I felt so good that I was sure I wouldn’t need it.

And I didn’t need it.  And even now, when it’s all over and everything should have hit me / caught up with me, I am still feeling pretty good!  I don’t really know what to think… is it too early to call this a miracle drug? Obviously, I don’t want to get my hopes up to much but – 😀

Whatever it’s down to, I hope it lasts!


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