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Archive for October, 2011

Just a quick post to create another poll on something I’m yet to get to the bottom of after all these years: What is the best form of relief for a swollen, painful joint? You would think, that since most swollen joints are also hot thanks to the underlying inflammation, a cold compress or icepack would settle things down. But, at the same time, joint pain can often increase in cold weather, so heat seems like a reasonable option too.

Personally, I think that cold may help with the swelling if I gave it chance, but I really can’t bear cold on my joints as it increases my pain. At the same time, heat is quite soothing on the joints and can ease or at least disguise the pain, but it does nothing to take down the swelling.

So which of these options is best for you?

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I haven’t had the best of weeks this past week as I think I must have picked up one of the lovely winter bugs that is knocking around and it knocked me for six. I never seem to get the cough/cold side of things but feel like my body is working overtime to fight something off, leaving me with temps, racing heart, weakness, fatigue and general yuckiness.

The last time I posted I was hopeful that the Tocilizumab was starting to take effect as the swelling in my right knee had subsided. Unfortunately, this was short-lived and a day or so later the knee had swelled up again and is back to being hot and stiff. My left arm is starting to seize up again too, although I’m trying to keep the joint moving as much as I can, with gentle exercises, to pevent this.

I’m not saying the Tocilizumab won’t work, just that it’s probably not going to this month.

There is still a bit of infection in my wound but it is healing and we are making slow but steady progress. The remaining tissue is about 1cm x 6mm, so not far to go at all.  We have moved on to smaller dressings and weekly clinic appointments, woo hoo! 🙂

L

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Bits and Bobs

There doesn’t seem to be much happening on the Still’s front news-wise so you’ll have to make do with some more updates on me.

I had an appointment at the clinic for wound care this morning. The dressing wasn’t as covered with the blue/green drainage as the other day, but still enough to prove that the infection is there.  She cleaned the wound with some anti-microbal stuff and applied another Iodine-soaked patch before replacing the dressing with a fresh one. Boy does that stuff sting! I’m taking it as a sign that it is actually doing something under there!

Thankfully, the wound itself looks pretty good.  There had been no deterioration of the tissue, which is the worry with this type of infection; in fact, it seems to be healing quite nicely and looks much smaller and neater. I’m hoping that we’ll be able to get on top of the infection quite quickly and that it will have healed completely before long and with a not-too-unsightly scar. Then it will be time for round two, but I’ll cross that bridge when I come to it…

It has been two weeks since I had my first Toclizumab infusion, although it actually feels a lot longer! I hadn’t really noticed any difference and wasn’t holding out too much hope after my experience with Abatacept (not just the fact that it didn’t work but getting my hopes up so much I was convinced it was!). However, last night I suddenly realised I had a bit more movement in my right knee, which has been swollen, stiff and very restricted recently. For the first time in weeks I was able to climb the stairs normally (well almost) and when we looked at the knee, the swelling had subsided and the knee was nearly the same size as my left knee. Now, my knee swelling has never subsided without the help of steroids/injection, so I took this as a good sign!

Today, the knee isn’t quite as good but still much better than it was. It is more painful now than with the swelling but I can feel something going on in the joint – almost as if there’s a small battle going on in there, which I guess there could be of sorts. I just hope the Tocilizumab wins! I’m trying not to get too excited, but maybe this is a step towards getting things under control once again. It has helped so many others after all, perhaps it really could be the wonder drug we are all looking for.

L

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I had my annual flu vaccination this afternoon.  This year it protects against British Flu, Swine Flu and Australian Flu.

Everyone with a compromised immune system, including from the immuno-suppressant drugs used to treat Still’s Disease and similar conditions, should make sure they get this vaccination. A lot of people worry about the side effects or feeling flu-like symptoms afterwards, but I can honestly say, that in the ten years I have received it, I have never experienced anything more than a bit of a sore arm at the injection site.

Make sure you book in early for it each year, as there are usually long waiting lists at the GP surgeries. I booked mine at the end of August! You don’t want to be left vulnerable at the start of flu season, which is often the worst time, as the body is easily overwhelmed with the new strains of germs lurking everywhere. Because of the increase in severity and flu awareness in the media, there are greater demands for the vaccine and so supplies may also become more limited the longer you leave it.

I’ve noticed more and more that other places like pharmacies and supermarkets are offering the vaccination on a walk-in basis too, albeit for a small price. (I think Boots Winter Flu Jab Service  were advertising it at £7.99, Asda at £8 and Sainsburys & Tesco at £10).

For more information on flu vaccination take a look at the NHS Choices site or the official campaign leaflet here.

L

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So seven (or is it eight?) weeks after the Hidradenitis surgery, after things going so well, I noticed that my dressing was completely covered in a blue-green drainage two days running, plus the wound was getting quite sore.

I mentioned both of these things to the nurse at clinic this morning and as soon as she removed the dressing she said it was a Pseudomonas infection.

Ugh.

She covered the wound with iodine and I’ve got a general antibiotic, Ciprofloxacin, until the swab results come back and show what specific antibiotic I need.  She also told me not to look into things too much online as there is some quite frightening information out there. Anyway, hopefully we have caught it pretty quickly.

At least I know why I’ve been feeling so grotty though.

L

Edit: This post has been viewed many times by people wondering about Pseudomonas, so I have decided to add a photograph of the dressing and blueish discharge. I’m sorry if this grosses people out, but it may help others identify an infection before it gets too serious.

The blue-green discharge of Pseudomonas

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Usually, when I talk of rollercoasters, it’s in relation to the rollercoaster nature of this disease – the ups, downs, twists and turns of Still’s Disease… but today I’m talking about the real thing.

Yesterday, I fought fire with fire and went to Alton Towers.

Okay, so it probably isn’t the best thing to do when you’re flaring, BUT the thing is… I wanted to! I hate missing out on things because of the Still’s and I knew that I was coming to the end of the ‘steroid boost’, meaning the flare is probably going to get worse again from here unless the Tocilizumab is effective.

Plus, it was my friend’s 30th birthday and what better way to celebrate than fearing for your life (Being 30 doesn’t seem so bad after all that). I surprised myself by going on every ride apart from Nemesis; I didn’t think my wonky knee would appreciate the dangling and swinging about. At least on all of the other rides you are strapped in very securely and they are ‘steelies’, so very smooth coasters. My favourite was a ride called Air, a rollercoaster that you ride kind of lying on your front – actually very comfortable! – and which gives you the sensation of flying.

I must admit I am shattered today but it was worth it for all the laughing I did.

L

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Call it what you want: Crepitus, Joint Cracking, Popping, Grinding, Crunching, Snapping, Clicking… we have all probably experienced it in at least a couple of joints, if not all.  I decided to look into things a bit more and write a post about it after noticing a definite increase in the amount of crepitus I’m experiencing myself at the moment. Unfortunately, I think I’ve ended up with more questions than answers!

Crepitus of a joint can occur in Rheumatoid and Osteo Arthritis and is defined as the sound and sensation experienced when the cartilage around the joint has eroded away, reducing the joint cavity space and causing the surfaces to grind against each other.  Most of the time it causes no pain and isn’t a sign of anything serious (but a release of gas build-up in the synovial fluid), but when it is accompanied by pain does it become a reason for concern?

In Rheumatoid Arthritis crepitus can arise when ‘inflammatory tissue invades the cartilage and bone surface and causes cartilage and bone tissue destruction’, in which case, crepitus can be considered a clinical sign of joint surface destruction. And this is what we all want to avoid. So does an increase in joint sounds signify that things need to be controlled better, or, by this point, is the damage already done?

You would think that if it was a significant symptom, it would be evaluated alongside other symptoms in clinical practice, but I know it’s not something that I have ever really discussed with my Rheumatologist, since other symptoms always seem more relevent. However, my worry is that sometimes we ignore what is right before us, the most obvious things, and I wouldn’t like this to be one of those times. If crepitus really is a signifier of joint damage and it is getting worse, then obviously I need to do something about it.

I only found minimal information on the subject in my internet research today but I’ll post links to the most useful information that I have found at the bottom of the page. Any further information anyone has would be greatly appreciated.

A couple of final things though. There were two suggestions that kept cropping up as ways to reduce crepitus (in addition to disease control) and they were:

  1. Increase your intake of Omega-3 through oily fish and supplements.
  2. Gentle, low impact exercises to help keep joints mobile – in particular swimming.

So, it looks like I’ll have to put up with the snap, crackle and popping for now.

L

Links:

Patient Guide To Joint Cracking  (Johns Hopkins Orthopaedic Dept)

Joint Popping (Washington Orthopaedics)

Joint Cracking and Popping; Understanding the Noises Associated With Articular Release. (An Osteopathy-based article but still interesting)

Painful Cracking in Joints During Exercise  (Live Strong)

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I did manage to get some rest yesterday and, after an early night, woke up feeling better than I have the past few days. For some reason, since Monday I have had this edgy feeling (a bit like restless legs but all over) and I’m not really sure what is causing it. The steroid injections I had before New York are also starting to wear off and so I can feel the familiar tightness returning to my joints; mainly my right knee and hip. I look a sight trying to get out of the car I can tell you.

But I needed to forget all that because I had a fun-filled day ahead; firstly, watching my local football team lose once again (booo!) and then an evening watching the comedian Peter Kay.  They do say that laughter is the best medicine and I believe there is a lot of truth to that; I love having a good giggle at a funny film or comedy show and tonight was no exception.

I particularly liked his take on doctors’ receptionists and how they (many of them at least) stand between the patient and doctor like guard dogs, determining who does or doesn’t get to see them as if they are qualified in making medical decisions. He also joked about not being surprised so many people turn to the internet instead, googling their symptoms and self-diagnosing, when it takes a month to get an doctor’s appointment. He’s obviously been doing his research!

Best of all though, were his misheard lyrics: KD Lang singing about ‘arseholes’ and Michael Jackson claiming ‘your burgers are the best’. It reminded me how for months I thought Lady Ga Ga was singing about ‘my little bedroom man’. I’ll let you work that one out!

Great night, only problem is my sides are aching now 😛

L

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It’s the day after my first Tocilizumab infusion and I’m feeling a bit rotten but Im guessing that is more to do with the long day, sitting in uncomfortable chairs and so on, rather than the drug itself. Thankfully, there has been no further signs of reaction so I’m hoping that was just a one off.

I had an early wound care appointment at the clinic and then I planned to spend the rest of the day taking it easy, to save some energy for tomorrow.  The wound is starting to close up at the ends and turn a nice shade of purple there, but is still overgranulating along one edge, meaning it is not healing as it should. Today the nurse covered it with a double pressure pad to encourage the excess tissue back where it belongs. I don’t think it is a major problem and it isn’t bothering me in anyway, but the scarring will be much neater if it stops overgranulating and heals as planned.

By the time I got back home, the postman had been and I had a letter waiting for me. Inside where two things: Firstly, a copy of the Occupational Health report on my current condition and then an appointment date for my next hearing with the Head and Human Resources – a week today.

The doctor’s report was only a paragraph long but it was still hard to take in his view of me. I’m forever trying to look on the bright side and convince myself that things aren’t that bad, so when I see things in writing from someone else, it comes as a bit of a shock. Basically, he says I suffer from severe Still’s Disease and am failing to respond to potent medications, meaning it is difficult to predict if/when the condition will be stabilised enough for me to return to work. *sigh*

Don’t get me wrong, I’m still sure that we will find a medication that will stabilise things as we have done in the past; I had a good few years with only occassional flareups and minimal joint involvement so I know it is not impossible. But, I also know that it is becoming more difficult and taking longer, and I need to allow myself that time to stabilise without feeling guilty about work.

Which brings me on to my next point: The Stage 2 Capability Hearing. I don’t know what my management is thinking about the current situation, but I imagine that they want someone to be doing my job and would rather terminate my contract than leave the situation long and drawn out. However, I’d also guess that they don’t want to risk terminating my contract in case there was some comeback from the Equality Act, (especially since I work at a SENs School). Then I’m torn between fighting for my job and feeling that I could do without the niggling guilt and added stress (like capability hearings) that come with having it right now.

Even having to think about it all is more than I want to do right now; it is so hard to make decisions and handle situations like this when you feel so flat.

L

Related Posts:

Preparing For DoomWork and Other Worries, Work Issues,  Occupational Health Appointment.

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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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