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Posts Tagged ‘Methotrexate’

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 wish that for once I could just feel better.

It’s a week since I had the cortisone injections and a few joints have improved; I was pleased to be walking better than I was previously, although I still don’t know how much better I’ll be at walking distances as I haven’t been anywhere! I also began to wake a bit earlier each morning, which I took as another good sign, and I’m no longer feeling low.

At the same time though, I am having more temperatures and rashes on a daily basis, I’ve been feeling queasy and last night I was finally sick. I don’t know if this is Still’s related, mediation related or just a bug that I’ve picked up. I don’t remember if I had any side effects the last time I stopped Methotrexate as it was over ten years ago and I was very ill in hospital at the time. It seems unlikely I’d feel the effects only two days after being due a dose though. I also can’t remember having any side effects from the Ciclosporin in the past, so I’ll just have to see how I go.

Joints-wise, the hip pain is still prominent and I keep getting twinges in my neck again, so I’m back to the exercises and minimising time spent at my computer, reading, etc… anything to prevent me needing to go on the Diazepam again. I’ll give the hip until Tuesday and let my rheumy know how things stand (or sit as the case may be).

So I’m a bit all over the place – neither here nor there.

Here’s another rash photo for those interested – it tends to be red and patchy on my face, neck and chest and gets more ‘speckled’ on my abdomen and arms, particularly on the back of my hands.

Rash starts to spread during a high temp.

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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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At my last Orencia infusion on the 15th September, Dr S and I came to the conclusion that it wasn’t helping the majority of my symptoms, plus my bloodwork was either getting worse or staying the same. The decision was made to switch to Tocilizumab (RoActemra) and I had my first infusion today.

It’s been an extremely long and tiring day. I arrived on the ward only to find it extremely busy with the chemo clinic, so there wasn’t a room available for me. Instead I had to sit in the waiting area, having the nurses take my observations (BP, Temp, Pulse rate etc) from there; thankfully, we managed to hijack a room to fit my cannula, take my bloodwork and then, later, to talk with the doctor but it seemed an even longer wait out there.

My consultant was away this week so I saw one of his registrars, since it was the first time I had received the drug. He went through things really well and I had a good chat to him about further treatment options; it’s always interesting to hear a different point of view. Firstly, he explained why Tocilizumab was a good treatment choice for me (Commence Science Lesson 1 as understood by yours truly):

When we have flu one of the things that makes us feel so unwell is an excess of a cytokine called IL-6. This cytokine plays a role in the production of CRP, which is also an inflammation marker in conditions such as Rheumatoid Arthritis and Still’s Disease. Tocilizumab is an Il-6 Inhibitor, which in layman’s terms means it ‘mops up’ any excess Il-6, preventing CRP production. Because my CRP levels are consistently high when the Still’s Disease is active, it suggests that I am producing too much Il-6, and so there should be plenty for the Tocilizumab to ‘mop up’, in theory making me feel better.

This sounds very promising but, of course, there is no guarantee.  He went on to say that if it didn’t work he felt it was good idea to return to the anti-tnf drugs because I had a really good response to Enbrel for a number of years (and so to Science Lesson 2).  The reason that it became less effective is because my body gradually started to produce antibodies against it, which is why a person usually takes Methotrexate alongside Enbrel and other anti-tnf – to stop the antibodies forming rather than to treat the disease.

I was on Cyclosporin alongside Enbrel, which is another immunosuppressant drug, but perhaps it didn’t do an adequate job preventing antibody production; then again, it did a good job keeping things at bay. He suggests trying one of the other anti-tnfs alongside Methotrexate, although he also mentioned another drug similar to Cyclosporin, called Tacrilomus, which I’ve only heard a bit about. This is the only oral DMARD that I haven’t tried and that isn’t a nice thought.

Anyway, after speaking with the registrar and a bit more waiting, it was eventually time to be hooked up to the Tocilizumab. Things went through fine for the first half an hour and I was happily chatting away to one of the nurses when I suddenly came over all lightheaded, hot and turned a fetching shade of red. The nurse went to fetch another nurse that looks after me and they took my obs again – BP was lower, temp higher and pulse rate 148 but within 10 minutes I started to feel better and the results returned to normal.

We went ahead with the whole infusion, which took an hour in total, and then I stayed for an hour afterwards to make sure I was okay. I’m still not sure what caused such a reaction but I did have a bit of a ‘moment’ during my first Orencia infusion, only not quite as dramatic. My heart rate was already up a bit when I arrived today (125) and I haven’t been feeling too good all week, but there have been no signs of infection in my wound or anywhere else.  Still, maybe there was something underlying that contributed to it and it’ll be a one off.

Unlike with Orencia, I am going straight into having Tocilizumab every four weeks and my next appointment is November 10th. The literature says that some people feel a benefit after only two weeks, so here’s hoping!

L

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The past couple of days have been quite bad Still’s-wise; today is slightly better but I think that’s down to me switching back to my regular Tramadol rather than the Prolonged Release form I had been trying out.  That didn’t seem to keep the pain away enough at all.

Since waking up on Wednesday, there has been a lot of joint involvement – my left arm joints suddenly felt a lot worse, with the elbow even more restricted than usual, both knees felt painful, tight and stiff as if there was fluid in the joint (there may be, just not as severe as when I was a teenager and they swelled up like footballs), plus my right hip is extremely wince-worthy painful, meaning I can’t lift that leg on its own and have to take stairs etc. one step at a time.

It really isn’t looking promising for the Orencia / Methotrexate combination. I’ve now had two doses of the 15mg Mtx and that is the only thing to have changed – funny then, that I feel worse. Still extremely tired and so I’m giving myself rests in the afternoon and going to bed earlier again; I figured that my body was working over time to heal this open wound after all, so I will listen to it.  Hopefully, after my infusion and Rheumy visit on Thursday (expecting to need some joint injections), I’ll have much more energy for New York. Besides, I’m so excited that I’m sure I will run on adrenaline alone.

I’m no longer too concerned about my wound and travelling.  The nurse was very pleased with the progress it had made and reduced my clinic appointments to twice a week. The rest of the time I am to change the dressings myself and she has given me everything I need to do so. I’m getting used to it now and can even remove and replace the packing myself, it’s not too bad now I know what I’m facing. Plus the wound itself has improved so much that it is no longer the bottomless pit that it seemed at first; it’s amazing how the body works to heal itself.

I’m surprised that it hasn’t ever really been painful – of all the things that are going on with me at the moment, that is the least of my pains.  The Hidradenitis itself is more painful, especially this second site in my left groin. It is nothing to look at really, just two pin-prick sized holes where it has channelled to the surface, but I nearly jumped through the roof when they swabbed it the other day, whereas I haven’t flinched at all with them poking and prodding the open wound.  Obviously I’d love for it to clear up itself, but at the moment I’m okay with the possibility of needing the surgery again, but I would like to get an idea of the scarring first.

Anyway, that’s everything for now. There isn’t much I can do until I see my Rheumy really, except maybe ask the GP about some different painkillers again.  Looks like I’m back to waiting around for things to improve; it just can’t happen fast enough.

L

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It’s been almost a week since I doubled my Methotrexate dose from 7.5mg to 15mg.  I was expecting that maybe I’d feel a bit queasy again like I did when I first started it, or perhaps even worse, but I haven’t noticed any difference in that respect. Instead, I am just ever so sleepy! Even when I have been very unwell during this current flare, I have managed to stay awake all day – with the fatigue presenting as a body-wide weakness.  However, for the past few days, I have struggled to keep my eyes open once it gets to lunchtime and I just want to sleep. Trying to stay awake makes them burn and there’s no point anyway, because my brain just can’t focus on anything, which is why I haven’t managed to post as often on here.

Losing part of my day to sleep is bad enough but the ‘brain fog’ (as people call it), is even more frustrating. I’ve mentioned before how words just seem to drop out of my head and how I make silly mistakes like pouring water from the kettle over my cereal and find that I’ve put the milk away in the dishwasher… well yesterday it took a more worrying turn, when I forgot to switch the gas hob off and left it burning for about 4 hours before I noticed. Thankfully it remained lit or I could have had a major gas leak.

I’m hoping that the shock of forgetting something so vital will make me extra vigilant now, so that it won’t happen again. Also, that the ‘brain fog’ clears up after a time, as the nausea did.  But I can’t help but feel that the Methotrexate is having the opposite effect to what we hoped.  When I first started Orencia I felt like a different person, full of energy, even if the inflammation was still there; then I started on a small dose of Methotrexate and lost some of that energy and feel good factor; now, after doubling the Methotrexate,  I feel sapped of all energy. It makes me wonder how things would be if I stopped taking it and just had the Orencia – would I feel as good as I did at first?

I know it’s not the end of the world, but I’ve always said that fatigue is (most of the time) more difficult to deal with than pain – you can take pain medication to provide some relief with that, but there is nothing for fatigue. It just knocks you for six and stops you in your tracks, leaving you with no choice but to put everything on hold.

And with the New York trip around the corner, I just can’t let that happen.

For now, I’m just going to do as my body tells me and hope it’s enough to pull myself out of this sleep-hole, I guess it is working overtime to heal right now too.

Sweet dreams,

L

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There hasn’t been much to report since the surgery on Friday; I’m still on bed rest mainly, so as to keep my legs raised and help the healing process. The wound is currently repacked with Aquacel or Kaltostat every morning and then redressed, meaning a daily drive to the local clinic. It’s not the nicest experience, having someone prodding around in an open wound, but I had visions of it being much worse and I’m pleased to say the pain is only mild.

The first nurse I saw told me not to look, that they’d taken quite a chunk out of my thigh, so I didn’t. However, yesterday the nurse somehow managed to stick the dressing onto the wound itself, meaning that it peeled away and gaped every time I sat on the loo, giving me no choice but to face it. I made sure that the nurse this morning stuck the patch well and truly over the wound and taped it down doubly, as not only did it make me feel queasy seeing the gaping hole, but I was also worried about it being contaminated. I have had a wound infection in the past and it wasn’t nice; thankfully, this one is looking nice and pink, which I have been told is a good sign that it is clean and healing well.

I am not allowed to shower so am having good old fashioned flannel washes twice a day and my boyfriend washed my hair for me last night. He’s also looking after my little furbaby, Jasper, as I’ve been told to keep away from pets for a while; I’m sure I will have a very sulky bunny by the end of it. I think both of them will deserve a treat by then too, especially considering how close my squeamish bf came to passing out during the first dressings change.

Still’s -wise, everything is pretty much the same and being kept stable by the Prednisolone and painkillers. Tonight I am to make a couple of changes to my medication; firstly is to switch to Modified release Tramadol capsules, which I only need to take twice a day and should give me a more steady level of pain relief. Secondly, I need to double my dose of Methotrexate to 15mg.  This is still a lot less than I took when I reacted badly to it, but I’m still feeling a bit hesitant  – the ‘hangover’ side effects have gradually faded over the past weeks and now I have a feeling it will be like starting over, if not worse.

But that’s being negative and only time will tell.  I have to know that I’ve given the Orencia the best chance of success before giving up on it; this could be just the boost it needs.

L

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