Archive for December, 2011

I went to see my GP earlier this morning because this neck and back pain has been getting me down and I’ve finally had enough. He examined both my neck and back quite thoroughly, asking to me to try and move this way, that way, forwards and backwards… while he felt the problem areas. Almost immediately he told me that the muscles from my neck down to my lower back have all gone into spasm, probably to protect itself from some other problem.

Finding out what that problem is will be difficult until the spasms ease off and so he has prescribed me a low dose of Diazepam to work as a muscle relaxant. Once I notice some improvement I am to arrange to see him again to reassess the situation; he thinks it could be either common neck pain from a trapped nerve, disc problems or joint damage.  I’m very young to have disc problems or joint damage in my neck, but with the Still’s Disease you never know; I’m hoping it is the common neck pain as that is easiest to treat.

I was slightly worried about taking Diazepam, it is a drug I’ve heard of before and for some reason it has negative connotations to me. But I’ve had two doses so far and although I feel a bit dozy, it’s not too bad and I’m pretty sure I’ve noticed some relief already so will be worth it in the long run.  He also gave me some simple neck exercises that I can try once it does start to loosen up again, to prevent it from seizing up.

I gave him the copy of my recent blood tests and he too is confused by them. My inflammatory markers are all reduced and yet he said it is obvious I am still having joint involvement – swelling around knee and elbow plus the pain in my shoulder and hip. The Tocilizumab’s main mechanism involves ‘mopping up’ excess CRP so my results correspond with that, but something else is obviously still causing this joint pain… unless they’re just slow to catch up.

Time will tell anyway; I feel positive that this is the one and that things are going to start to turn around, even if slowly at first.


Ps, To follow on from yesterday; the coldsores haven’t spread any further so I am to continue with the Zovirax and get in touch with him for Aciclovir tablets if it does get any worse.

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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.



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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.


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Infusion number three has soon come round.

Today was an early start as I needed a fasting blood test to keep an eye on Glucose and Cholesterol levels while on Tocilizumab / RoActemra. We got to the ward at about 8.30am and the nurse that did my last bloods (when I fainted) welcomed me, told me I was looking brighter and went on to take today’s blood. We decided to fit the cannula there and then, because I only have the one vein that gives, and just bandaged it up well so I could go shopping for a few hours before my infusion in the afternoon.

All went fine, (no fainting spells this time!) and I was soon tucking into some cereal and my morning brew – don’t know how I managed to get up and out without it!  Once I was feeling more human, we were free to go to the Trafford Centre to do a bit of Christmas shopping and get some lunch. It was nice to be out and soak up the Christmas atmosphere a bit, although I would rather not have bumped into the Occupational Health doctor while doing so!

Anyway, we were back on the ward just after one and it wasn’t long before I was hooked up to the Tocilizumab – thanks to the early blood tests, it had been mixed early too so I was finished a whole three hours earlier than usual. I had no reaction of any sort either, it all went through fine and I have my next infusion scheduled for January 5th 2012.

I was disappointed that I didn’t see my Rheumy though, as there were things I wanted to mention to him, but it sounds like he has a clinic off-site on Thursdays now.  The ward sister came to unhook me and said she’d spoken to him and he’d said I was doing really well on the Tocilizumab.  My blood work is better than it has been for a long time (I’m sure it says my CRP is less than 1?) but even though I am noticing small improvements joints-wise, there is still some way to go before I’d class myself as doing well. His secretary said she’d send a clinic appointment for me in the post but I’m not sure what I have to say is worth going all that way for.

I took a copy of my blood test results to give to my GP so I can keep him on track with how things are going. Of course I had a little nosey myself as I like to try and understand how what I am feeling translates into biologically on paper. Most of my results were pretty normal and much different to what I’m used to seeing – WBC and neutrophils for example, were well within the normal range rather than sky high and my Haemaglobin (hb) is creeping back up from 8.0 to 10.1. The Haematocrit results were a little bit out but that is probably to be expected with the anaemia; the only ones I have slight concerns about are my Serum ALT, which was raised a little and my total cholesterol, which was raised at 5.3.

I was home by 4.30pm and fell straight into bed for 2 hours. I always feel completely wiped out after hospital visits – physically and mentally.

Here’s to seeing some more improvement this month.


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I think I’ve mentioned before that I’ve been experiencing some neck pain recently (edit: looking back through posts, my first mention of it is back in early October!), well it doesn’t seem to be getting any better; in fact, if anything it is getting worse.

It started with an increase in joint sounds, (ie, crepitus) on moving my neck and developed into pain and fatigue on the lefthand side shortly after. Since then, it has gone on to affect my whole neck and I have painful spasms even when only moving it a tiny bit – you know the sort you get sometimes, when you turn your head too fast? Ouch.

The pain has been so bad at times that I’ve felt queasy and even seen stars. I can’t turn my head properly and struggle to sleep because it is so uncomfortable. I have also been struggling to open my mouth and cannot swallow very solid food, it just won’t go down! Pain killers don’t seem to work on it and so I have resorted to using my TENs machine on a regular basis, which does help a little – the only problem is you are restricted as to where you can place electrodes in the neck area and so I can’t reach some of the most painful parts.

I don’t know whether this is a muscular, joint or nerve problem, but it is getting me down. When I was younger, I had similar problems and struggled to hold my head up, so I ended up having to wear a neck brace and collar. This time though, the doctor is reluctant to advise that, as he feels the limited range of movement you have in a collar could cause my neck to seize up further, as well as the muscles to weaken. I can see the logic in this but wish he could have provided me with some other option that might bring me relief.

As well as the discomfort, I’m concerned about the damage that could be occurring if this is part of the Still’s Disease inflammation. Any joint damage is bad, but necks are so fragile and so crucial too, that the prospect of damage to its intricate structure is quite scary.

Still’s really can be a pain in the neck at times.


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The Christmas Markets

After building up my energy reserves, we went on a family trip to the Christmas markets in Manchester yesterday. It was something I’d been looking forward to for a while and was determined not to miss; it can be quite hard getting into the Christmas spirit when you spend most of your time at home – one of the reasons I’m missing work right now (There’s nothing better than being around children during the run up to Christmas).

The markets were wonderful and we enjoyed ourselves despite the wind, the rain and the cold. Thankfully, I was well wrapped up in my thermals and we managed to find shelter from the worst of it; and, although I did start to feel it my hip after a couple of hours, it didn’t spoil things.

I love looking at the different crafts, especially the handmade christmas decorations, plus there are so many different smells that it makes you hungry. We had a pork sandwich and hot chocolate (with Baileys yum!) and bought some fudge but I had to stop myself buying any more sweet treats. After a while, it got too busy for our liking and so we hobbled down some of the quieter street stalls and had a meal in the Printworks before going home.

It was a really lovely day and although I’m suffering for it today, it’s definitely worth it.

I’m well on the way to feeling Christmassy,


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I’ve been on Methotrexate for five months now, firstly at 7.5mg and increasing to 15mg after three months. The nausea / fatigue hangover has become more bearable over time but I have also noticed that my periods have become increasingly heavy and painful too, (she says, clutching a hot water bottle to her stomach!)

I remember experiencing something similar the first time round, as a teen, when I was taking 30mg a week – periods were terribly heavy and painful and would make me so queasy that I dreaded them coming round. Painkillers helped a little, but usually I would have to spend a day or two at home, trying to get over the worst. One time, at the cinema, I had ‘changed’ on the way out and by the time I got to the car outside, I had already soaked through.

I didn’t associate these problems with the methotrexate at the time, but since everything has been okay in the interval between the ages 20-29 I’m guessing it has something to do with it. Although most of what I have read about the connection suggests it is more likely to cause irregular periods, I’m sure there is a connection.

Another things to add to list of reasons I hate taking Methotrexate.


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So I just had a phone call to arrange a medical assessment for my ESA claim as one who is unfit to work. They want me to get to their centre in Bootle – Liverpool I think – without a car or public transport (Even if there was a route, I’m not exactly well enough to travel by myself). When I tried to question / explain this to the guy on the phone he told me that there would be directions in the post. Even after saying it wasn’t directions I was concerned about but transport, he said the same thing so I gave up.

The problem is, you have to go on the date they give you or you can lose your entitlement, which means I am going to have to find someone to take me and rely on them, yet again.

The appointment itself doesn’t bother me, but the fact that they expect someone who is physically unwell to be able to travel 20+ miles for it seems ridiculous, and there must be people worse off than me, thinking the same?


*gets off soapbox*


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