Time for a change

Remicade was the first arthritis medication that really worked for me. I mean the others helped somewhat, but they never seemed to make that real difference that I was looking for. With everything else I was slightly better, but nowhere near functional. On Remicade I’ve been able to attend college, and even compete as a college athlete. It has never put me in remission, but it’s brought me really close. I’ve been on Remicade for just over three years. It seems crazy that it’s been so long as I still remember vividly the day that I had my first infusion. But lately Remicade hasn’t been working as well for me. Over those three and a half years I’ve gone from infusions even eight weeks, to every six weeks, and now every four. Yet even going ever 4 weeks I’ve had some pretty big flare ups. That coupled with the inconvenience of having to go into Boston Childrens Hospital so frequently, as well as a number of odd side effects I have (hyperinsulinism being one of them), has led my rheumatologist and I to decide that it’s time for a change.

This week I will be leaving my faithful friend Remicade behind and starting Humira. Its a change that will hopefully be for the best, but as with any major change I’m anxious. Sure Remicade wasn’t working as well for me as it used to, but what if Humira is even less effective? My rheumatologist has reassured me that she thinks Humira will work great for me, after all it’s mechanism of action isn’t that different from Remicade. But still I have this niggling worry that she might be wrong, that I’ll switch to Humira and be worse off. After all Humira doesn’t work for everyone, including people who respond to Remicade. But then again maybe I’m worried over nothing. Maybe Humira will be wonderful. Maybe I’ll even finally go into remission. Maybe… maybe.. maybe. I guess only time will tell.



Ugh… sorry I have been so bad at posting lately. I have had lots of ideas for posts, but just don’t seem to have gotten around to them.

I was going to write a post called oopps… Because a couple of weeks ago I let my excitement that I felt good get ahead of me, which ended badly. Ooppss.. So I was with family friends, when I was asked what I wanted to do. I knew what I wanted, I had wanted to do this for a long time, I just wasn’t sure if I should do it.  But I put those feelings aside, and decided that I was going to do, if only because I could. So that was that. This is how I ended up with C and J, eleven year old twins, skating along on roller blades. Throw in a bumpy path, some sharp down hills, and well me, and there was a recipe for disaster. In the space of about 20 minutes I managed to fall bruising (at least we think?) my coccyx, and shortly after falling and dragging my knee over some rocks, successfully gouging a nice hole in my knees. So with blood trailing down my leg, we decided to go home, clean the wound (which took ages and much scrubbing, as there was so much dirt in there that didn’t want to come out) and do something a little more tame.

Looking back maybe it wasn’t such a great idea, but I think I would still do it again. For the same reason I did it the first time. I wanted to take advantage of every ‘good’ minute I had, before I couldn’t anymore. The only thing I would change is to maybe have gone in and got stitches or steristrips applied to my wound, as my mom (a Dr) thinks that I probably should have gotten stitches. So now I will have a lovely, bigger scar, and a funny tale to tell.

But I digress. The point of this post was to talk about the frustration I am feeling, about being on the downward slope again. Yup you guessed it, my infusion seems to be wearing off, with the peak being at only five weeks. It’s frustrating that it hasn’t lasted me the full eight weeks. But even more, it’s frustrating that I don’t have the same amount of energy, that my joint pain is once again increasing along with stiffness.

After two beautiful weeks, where I felt so close to normal that it actually felt like a dream, I once again am facing the reality of my autoimmune arthritis. After being able to ride a bike, go rollerblading, only need about 10 hours sleep, I am finding it hard to adjust to once more having limitations, to having to be more selective and plan out my day. I miss the spontaneity, the freedom, and the energy that I had. Even though it was only for two weeks (and kind of for the three before them) I once more feel like I have lost something. Even though I am still much more able-bodied and energetic than I was before my infusion I feel disappointed with my current level of health. I got to have these golden two weeks, and though I tried to grasp it with both hands it has once more been tugged from me. It’s just hard to accept where I am now, knowing where I was two weeks ago. And even though just a month or two ago I would have killed to feel how I do today, it doesn’t seem enough. I had a taste of how my life used to be, and am now going through a new process of adjusting and mourning that loss, as the wound has opened up afresh.

Don’t get me wrong, I am still making sure that I enjoy every minute, that I do things that I wouldn’t have been able to do, and that I appreciate the fact that I can do them. I am still thrilled to have the amount of energy that I have, to be in a place where my pain is so much better than it was, to be able to play with my little cousins. To go out and see the sights, do things, anything. It’s just I know it could be better, I have felt better just a few short days ago, and it is hard not to be frustrated that I don’t feel that way anymore. That even though I can do so many things, there are still things that allude me.

I guess this will always be hard, no matter what position I am in, no matter how good or bad I feel. There will always be a part of me that wants more, that longs to be the person I was before. I just have to try to make the part of me that is happy, that enjoys things, that takes advantage of everything I do have, that see the good in everyday, no matter how small, just a little bigger (hopefully even more) than the part of me that wants more.

Silver linings

With any chronic disease I think it is very easy to get sucked into the swamp. That all-consuming place where things aren’t going right, when we’re sore and tired and getting up each more seems like a chore. We’ve all been there. That little known place where we are not sure if things will ever be right or ‘normal’ again. Today though I want to talk about some of the good things that have been happening, the positive changes, that at one point seemed more like a faint possibility, something I would have loved to have, but wasn’t counting on.

Over the past week I saw a cardiologist, because my heart is weird. Like the rest of me, it wants so badly to be out of the box. I have had pretty much persistent tachycardia, since diagnosis of Enthesitis related arthritis (part of the ankylosing spondylitis family). My heart has felt off, beat so hard I think that it might be a hammer, more than a heart. It has been painful, but mainly it’s been fast. This cardiologist was lovely, and unlike most people who thought I should just deal with it, he realised that if it was interrupting my daily life, we should do something about it. So after a normal echo, we decided that a 48 hour holter, should be repeated (I had one about a year ago). A holter is like and ECG (a heart monitor) that you keep on, in my case for 48hours. Here comes the good part. My holter does show that my heart beats fast, it was better than the last one I had. So the cardiologist thinks this shows a downward trend, it’s going back to normal. Yippeee… I think this is due to the Remicade, which seems to be making headway against this disease. Double yippee…

We did however decide to still trial me on heart meds, to see if this makes a significant difference, else we will leave it for now.

This week I also had cortisone injections into my jaw, my first ever joint injections. It was sore, although netter than I thought it would be .It was nerve-racking. It felt odd, especially the left side, which felt like a big cylinder was being knocked through layers and finally pierced into the joint. Most likely because this is the worse of the two, and most likely has some synovial thickening and a smaller joint space. The right side though just seemed to glide in, and although still sore, wasn’t as bad. All of this was done without any anaesthetic, as Dr. P says that there is a nerve that is close to the jaw, which can make your face droopy, and he wants to know whether it has happened due to the injection or the anaesthetic. Makes sense, and I was actually happy that this meant less needles poking me, and local anaesthetic has never really worked for me anyway.

How is this good, you might ask? Well, since the injections my jaw has been so much better. I opens better, it clicks and grinds less, it’s not sore all the time. I don’t have a constant headache anymore, and when I have one it’s less intensive. also my neck seems to feel a bit better too. Which makes me really glad that I made the decision to have the joints injected.

Last, but certainly not least, I have managed to wean off of my opiod patches (durogesic patches, similar to morphine), and now am only taking Tramadol as needed. This is so great. After almost a year of having pain that was needed to be controlled by such strong pain meds, I am free of them for now. It is such a blessing to be more in control of my pain, and on top of this disease. It’s still hard, but a slight weight has been lifted from my shoulders, and I am going to enjoy every minute of it.

Infusion Number 2

So yesterday I went for my second Remicade/Revellex infusion. I think everyone was a bit anxious about it, including myself, as you are most likely to have an infusion reaction during your second infusion. So far though I seem fine. Although when that IV started I had this sensation, it was skin crawling. I felt agitated and like I wanted to shed my skin, just crawl out. But it passed soon enough and the rest of the IV went of with just the regular bumps. Hard veins to find (I personally think they just like to play hide and seek with the nurses, for their own amusement), Blood pressure cuff was too big (forgot to bring my paed cuff), so they took my blood pressure on my thigh, which thankfully was big enough, and rather amusing. Pressure seemed to roller coaster around a bit, slightly high, bit low. All the usual things.

Once again the infusion took it out of me, pushed through so that I could go to my violin lesson, and crashed and slept like a rock for a couple of hours. Annoying? Yes. But hopefully it will be worth it.

So keeping my fingers crossed that it’s going to work. That it’s starting to work. I mean I have had a bit more energy since the first one, and my heart rate is around 115bpm rather than 130bpm. Which is always great. But I have had a bit more hot inflamed joints, and had a sever couple of days with my IBS. So some good, some bad. Guess I just have to wait and see. I’m told if I respond to it, I should feel it in the next four weeks. So here’s hoping.

Wishing all of you a bit more energy, and less pain today.

Snap Crackle Pop

For years even before I was diagnosed with ERA (enthesitis related arthritis) – if I remember right it was at 11 or 12 years old – I have had jaw pain that always seemed to be accompanied by a lovely cracking/popping sound. I always used to think that maybe I had just moved it funny and it was out of place, and this was reinforced by people telling me that it was nothing, that I shouldn’t worry. Recently I read a study that stated that it is very common for the first signs of arthritis in children and one of the most over looked ones, to be in their jaw. It also stated that this inflammation is often unnoticed by the child themselves, as in early stages it is often not accompanied by pain.This Jaw pain in the last year has intensified, and become almost a constant reminder to me of my illness.

Since I was diagnosed I have learnt and researched a lot about this disease. So much so that my mum, a doctor herself, jokes that although I have yet to go to college, I have a mini doctors degree, and I’m a walking encyclopaedia. One of the things that came as a surprise to me, but is actually quite logical, is that jaw pain can make you feel like you have an awful ear infection, even when there is non in sight.

So along with the crackling, popping and clicking noises that my jaw treats me too regularly, I have had to get used to the added ear pain as well.

But it doesn’t stop there. My jaw at times is so stiff that even opening it slightly is painful, and don’t let me get started on what it’s like to eat. Probably the reason why soft food and myself have become so acquainted. Over time suspected jaw damage has happened. But it’s a sneaky one, happening so slowly, that it was only recently that I really noticed how it has begun to push my teeth together, and in doing this push some forward. One side of my jaw is also farther forward than the other, and this once again can be seen from my teeth and the way the top and the bottom align. I will be going to see my dentist soon, to confirm this, and to ascertain whether I will need to get braces.

When asking my Rheumatologist on Monday whether I could have joint injects, she said no, as she would like to wait to see if the Revellex (Remicade) which I just started will help. This is a decision that I both understand and don’t. I understand wanting to wait to see if the Revellex will work first, especially because cortisone has so many draw backs and risks associated with it. at the same time, I am really in a lot of pain from this, and am worried what further damage might happen while we wait for what could be 2-6 weeks or perhaps even longer for the Revellex to work.

I just wish this disease could be a bit more cut and dry sometimes. But despite what I think, there is nothing I can do to change it. I think I will just repitch the idea when I see her again in two weeks.


A New Chapter

Yesterday, was the day. The day we (or at least I) had been waiting for. The day I had my very first dose of Infliximab ( trade name Revellex or Remicade, depending on which country you are in), a biologic drug which is a TNF inhibitor.

I was pretty sure I knew what the procedure for the day would be, having read quite extensively about it, but I guess you never really know till you experience it, or perhaps it is simply that reading and experiencing are two different things. I guess what I’m saying is you will never get the picture in your mind before hand to be a replica of what the real experience would be.

So after that long aside, can you tell my mind is a bit fuzzy today, I should probably get to the punch line.

We arrived my rheumatologists office at 8:30am, which is a struggle for any one who needs an inordinate amount of sleep to be able to function. Once there we were greeted by a puzzled nurse, wondering why we hadn’t gone past the pharmacy to collect the IV pack, not knowing that no one had taken the time to mention this to us before hand. So instead she started by taking a urine sample (which apparently they will check every time I come for an infusion, ugh), and then kindly directed us to where the pharmacy was.

We were finally shown to the infusion room, which was a small room with four very large comfy chairs, where the infusion was to be done. When asking the prerequisite questions before the infusion could start the nurse seemed to become unsettled when I told here that I had a fever yesterday, despite me saying that I had low-grade fevers daily, as part of my condition. So instead of starting the IV then, I had to wait to see my Rheumie first, as the nurse was worried that I was sick, and you can’t get a biologic treatment while you’re ill. This is because it lowers the immune system further, and opens you up to possible complications or exacerbation of the cold or flu or what have you.

At my first Revellex/Remicade infusion

At my first Revellex/Remicade infusion

So finally once the Rheum had given the all clear we were ready to start, and the first of what seemed a billion observations began, as they checked my pulse, blood pressure and temp every fifteen minutes for an hour, and then every thirty minutes.

As we started, temp normal, blood pressure on the low side as usual, and pulse high, which is also normal for me, but I think a pulse of 140 bpm (beats per  minute) just seemed to add to the nurses anxiety. It was while doing these observation, that we met the first challenge for the day. The blood pressure cuff was a bit too big for me 9 or actually really way too big), and therefore would pump up way past were it normally would. It felt like it wanted to squeeze my arm until there was nothing left. So thus began the search for a smaller cuff. And it really was a search, as one after another cuffs were tried, and deemed to be too big. The nurse finally went over to the pediatric department where they gave here the biggest kiddies cuff they had. On putting it around my arm the nurse said to me “don’t look at the age it’s for”, so of course I had to look. Guess what…. it was for a nine year old. A nine year old! I can’t believe I have a nine year olds arm, I still kind of don’t.

As the infusion goes on the speed up the rate, at 15 minute intervals. This is in order to reduce reactions to the meds, as an anaphylactic or even a milder reaction is the worst thing that can happen, and was the thing that I was anxious about. But luckily the infusion went just fine, only making my shoulder of the arm the drip was in saw, giving me a headache and making my throat hot and burnt. All of which I could deal with.

After a couple of hours shared with some other lovely people who were there for their infusions, and who were quick to make me feel at home, share some of their stories and knowledge, and just generally keep me company, and I guess in turn, I them, the infusion was done.

Lastly they infused a much smaller saline drip through, in order to ensure that every drop of that pressure, and expensive med, went into my system.

Finally, after promising to come back in 2 weeks, I was free to go home, where I slept for 3 hours. The infusion having made knocked it out of me.

Now the waiting game begins, as we wait what could be 2-6 weeks to see if we have struck gold. So know all there is to do is hope that this time it’s that all elusive “one”.