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Posts Tagged ‘RoActemra’

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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I can see my toes again!

{Backdated Post}

We made some progress today, in that I was able to sit up a bit more and eventually moved into a special reclining chair that one of the lovely male nurses managed to wrangle for me. This proved to be a fantastic help over my remaining days in hospital; it was remote controlled, raising and lowering as well as reclining, and so I was able to sit/stand without bearing too much weight through my hips. It was also a lot more comfortable than being stuck in the bed all day, with my legs stuck out in front of me; it’s surprising what relief a change in position can bring. Now that we knew there was no damage to my spine, I was able to switch between the two and make further steps towards getting myself more mobile – things were looking up.

And then came the ward rounds.

My Rheumatologist’s Registrar came to see me with a few other curious doctors. He told me that there was no infection present in the fluid they had taken from my hip on Friday and so it was looking like the Synovitis and Joint Effusion was down to an exacerbated Still’s flare.  He said he believed that the Still’s was getting worse because the Tocilizumab wasn’t working, despite the improvements to my bloodwork. He then went on to say that that the problem was, I had tried all the different mechanisms of drugs by this point: Enbrel, the anti-tnf, Anakinra the il-1 receptor antagonist, Abatacept the T-Cell inhibitor and Tocilizumab the il-6 receptor inhibitor.

As a result, he said I had run out of options and that my main hope was for them to look into future clinical trials that may include Still’s Disease patients. He mentioned the possibility of returning to anti-tnf therapy but felt that there was only a limited chance that I would respond after forming antibodies to Enbrel previously.  I was lost for words and he went away leaving me in a lot of doubt and feeling quite scared about the future. I have always known that my Still’s Disease was difficult to treat and did not follow the typical pattern; my Rheumatologist and I had often joked about how complicated I was, but we had always had a plan of action, another drug in the pipeline if the current one didn’t prove a success. I had always had faith that we would get on top of things eventually, even if it was a long, hard struggle to get there. Was I wrong to be so positive, naive even?

For the rest of the day I was out of sorts; I became tearful when I needed help from a nurse to go to the toilet, frustrated with my dependence and disability all of a sudden – was this going to become the norm for me? I spent a lot of time talking to my friends and family about it and they reassured me that I needed to see what my Rheumatologist said first; as I said before, he had always kept me optimistic about my future. He came to see me at about 6pm that day; I can’t remember the conversation now but nothing he said made me feel like a lost cause. Instead, he suggested that we persevere with the Cyclosporin a bit longer (with the Tocilizumab), since that had always brought some level of control in the past and I had only been on it for a few weeks at that point – some of which may not even have counted, since it is possible I may not have absorbed any medication while I had chronic Gastritis.

He admitted things were pretty dire and couldn’t offer me any guarentees, but he at least didn’t make me feel like I had completely run out of options.  I was able to relax a bit more and focus on the here and now again, taking small steps towards getting back on my feet and home – washing at the sink, using the toilet, getting between the bed and chair on my walker etc.

But I have to admit, the Registrar’s claims have been niggling away at me ever since.

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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I can’t believe it’s already time for my fourth Tocilizumab infusion; December has just flown, but then I was asleep for most of it.  I’ve been trying to think of things I need to mention,questions to ask etc, wondering if the blood test results will be good again and if they are enough evidence that it is helping the Still’s when I’m still struggling physically. Chances are, I won’t get to see my rheumy but maybe the nurses on the ward are supposed to be monitoring my progress and I should be more open with them?  When they’ve asked ‘and how are you?’ in the past, I assumed they were just being polite, rather than prompting me to tell them how things really are. I didn’t want to bore them with the details if that wasn’t their intention, but I have to tell someone.

On showering this evening, I found three HS sinuses; they are tiny holes, like vampire bites but very deep and can easily get infected, causing swelling, abscess and further pain. No wonder I’ve been so uncomfortable.

I’m kinda freaked out that they keep appearing; I’d assumed it would be a one (or two) off and I’d be free but now it looks like something else I’m going to have to put up with. There is a theory that it is conneceted to having other autoimmune diseases. Lucky me.

Early morning tomorrow so early night for me too.

L

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Just a quickie.

I woke up with a stonking great big coldsore on my top lip this morning; by lunch time it had developed into two or three more and had made the left side of my face sore and puffy. Apparently, it is quite a common side effect of Tocilizumab and needs to be treated quickly; due to suppression of the immune system it can rapidly develop into complications.  I didn’t know this until I checked it out this morning so thought I’d give a heads up.

I’m currently treating it with Zovirax cream but if it continues to get worse I can mention it to my GP tomorrow at least. Let’s hope it doesn’t take over my face.

Yuck.

L

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It’s official, the Tocilizumab infusions absolutely wipe me out for a few days. I thought at first it was the trip to the hospital itself that was wearing me out but I’m pretty sure it is the medication now, because the symptoms/signs are the same each time. I thought it was worth posting them, in case others experience the same and wonder if it is normal:

1. Fatigue – more than your usual tiredness. I’ve been sleeping a lot more after the infusion and don’t have any choice in it, I get so tired my eyes hurt and I have to sleep.

2. Headache – Especially first thing in the mornings, but I think this may be related to my next point because it eases when I drink plenty of water.

3. Thirst – Need to make sure I drink plenty of water.

4. An Increase in Joint Pain – I’m not sure if this is temporary but I have noticed each time that my joints throb after Tocilizumab infusions on top of the usual aches and pains. To me, it feels like there’s a battle going on in there with the Toc fighting the inflammation, so maybe one day it will win.

5. Bad skin – it hasn’t happened so far this time, but I’ve been getting terribly sore spots on my chin for a week after infusions.

6. Feeling hormonal / Moody – maybe it’s not related but it feels like it is to me. I’ve definitely noticed an increase in grumpy days and crying at really random things like the donkey sanctuary advert…

These are just things I feel I’ve noticed myself, there isn’t any medical backup; however, through talking to other people that are being treated with Tocilizumab I am finding that they do seem to be shared by others.

But hopefully it will be worth persevering; I’ll gladly put up with these things if it kicks the Still’s into touch.

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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