Downward Spiral...

Hi Everyone

So I realise that I have been extremely quiet on the blog front recently, but it is because so much has gone on.

In a previous blog post I mentioned that my consultant had decided to increase my dose of methotrexate to 20mg, as 15mg didn’t seem to be working all that well. After two weeks of taking the higher dose, I became so ill that I could not eat at all. I didn’t have a full meal for two weeks and I was lucky if I could even get a third of the way through my food. Also, I was having a really bad flare with my arthritis, pretty much all of my affected joints swelled back up and I had to go back on to crutches.

In the end I emailed my rheumatology nurse and told her everything that was going on. She got in touch with my consultant and got me an emergency appointment for a few days later. I was so grateful at how fast they were to help me, as I was pretty miserable by this point. I had blood test results around this time and recently found out that my inflammation count had risen from 8 to 24, where as it must be under 20.

At the appointment with my consultant, she said it was obvious that the methotrexate was not being absorbed enough, therefore I was to start on methotrexate injections, or metoject as they call it. This would mean that it would go straight in to my bloodstream and hopefully work a bit better. It also means that it would bypass my stomach and stop me from feeling so sick all of the time. There was also mention of starting another drug as well as the metoject, but I’m not sure if that is if the metoject doesn’t work on its own.

The other development was that my skin had broken out in psoriasis up both my arms and on the back of one of my legs. This meant that my consultant could officially diagnose me with psoriatic arthritis. The diagnosis also explained a few other symptoms, such as extreme pain in my right heel. It is pain underneath my foot rather than a joint and I can barely put any weight on my heel at all some days. My consultant explained that with psoriatic arthritis, you can also develop another condition where the tendons can also become inflamed and this tends to start in the foot.

So at the end of my appointment the plan was made to get an appointment with the nurse to learn how to inject myself and then get started on the metoject. I mentioned that I already had an appointment for March 21^st for a check up with the nurse, so my consultant said that she would try get me in sooner, but if not I will have to wait until then. In the mean time I was to reduce my dose of MTX so that I wasn’t feeling as sick, but this also meant that I may be in a bit more pain temporarily. So now I just had to wait for my appointment...

An arthritis upgrade...

Hi everyone

So as I mentioned in my last blog, I had a check up with my consultant this week. I first saw her in August 2012 when I was diagnosed with arthritis, click here to read the post about my first meeting with my consultant. The plan was to get started on medication and to come back in three months to see how I was doing... Well five months later I finally got my appointment!

My expectations of how the appointment would go were nothing like what actually happened! After being told by my rheumatology nurse that I was improving nicely and therefore didn't need to see her anymore or have my blood tested as regularly, I expected for the consultant to match this notion. Even though in the back of my mind I felt like I was going downhill again and a lot of my pain had returned, since the nurse was happy with my progress, I assumed that I was just having a bit of a blip because of the snow and cold weather.

In actual fact, after being examined by my consultant, she told me that since I still have so much swelling and pain in my joints, this is an indication that my medication (Methotrexate) is not working properly. I was slightly confused by this, as a few weeks ago I felt almost back to normal, but it turns out that my steroids were masking the fact that my medication wasn't working. When I was reducing my steroids, my medication should have stepped in its place, but instead I have just got progressively worse.

The consultant also asked if I had any rashes on my body. I told her about a small rash that had started on my elbow and had appeared up my right forearm over the past week, but it was only minor and I didn’t have it anywhere else. (It turns out that I also had it on my other elbow, but couldn’t see it) My consultant believes that this is the start of psoriasis, and therefore I probably have Psoriatic arthritis.

About 1 in 10 people with psoriasis develops psoriatic arthritis and in most cases, the arthritis develops after the psoriasis. However, in a small number of cases the arthritis develops first, sometimes months or even years before the psoriasis develops. Trust me to be the minority!

This also highlights the fact that my medication isn't working because if it was, it would have stopped the psorasis from a developing. In a way, this is a good thing because it means I can have a firmer diagnosis of the type of rheumatoid arthritis and get the most accurate treatment, but at the same time I'd rather have nice skin. Although, at least I only have very small patches of it at the moment.


So the new plan is I have had my dose of Methotrexate increased to 8 pills, and will continue with this dose for the time being. I will have to go back to see my rheumatologist nurse in 6 weeks to see how I'm doing. If it looks like I'm still not getting better than this means that I am just not absorbing enough of the Methotrexate for it to work and therefore I will have to start injecting myself with it.

So I'm hoping that the increased dose gets to work ASAP!

Its Christmas!!

Firstly, appologies for such a long delay since my last post once again! 

I mentioned in my last post that I was starting to feel ill with a sore throat and cough, but I was planning to spend the weekend recouperating... Well this has turned into several weeks and I'm still not 100% better! I got really ill and slept for pretty much 3 days straight, I even had to take a day off work which is not like me at all. But I slept for my entire day off, so it was definitely the right decision. Now I am much better, but I still have a cough and I am still going through several boxes of tissues!

Anyway, since it is nearly Christmas, I thought I'd reflect on the past few months with how far I have come since my diagnosis with RA and look forward to the future.

I can honestly say that compared to two months ago, I feel like a completely different person now that I am on methotrexate. I actually feel like me again. I can run up the stairs, I can stay up past 8pm without feeling exhausted, I can even get up and ready in the morning before I have to take my meds. These all sound like small things, but it's the little things that you notice more when they are taken away from you. Like not being able to unscrew a bottle top or wear shoes that have a slight heel.

There is definitely still more improvements to be made, mainly with my index finger which is still swollen. I cant really use my index finger for anything yet, so I struggle to write or do things like squeeze shampoo out of a bottle. But I can straighten my finger now, so I guess it will just be a longer process to get back to normal.

I am down to 7.5mg of steroids now and I am hoping to reduce this to 5mg over the Christmas break.

My hopes for the new year are to get completely off steroids and to get as close to normal as possible. I would really like to get back to my normal weight and fit back into all of my clothes too. But with coming off the steroids and hopefully being able to start exercising more, this should be possible! (Fingers Crossed) I am feeling very positve about the new year. 

One thing that I want to add really quickly,


Wishing everyone a fantastic Christmas and a wonderful 2013!

World Arthritis Day

Hi everyone

Since today (Friday 12^th October 2012) is World Arthritis Day, I have decided to write my first ever blog post about my own battle with Rheumatoid Arthritis. I was only diagnosed with RA in August, so I am still in the early stages of treatment and adapting to a new life style. But here is how it all came about.

One morning, at the beginning of June, I woke with a sore knuckle on my right hand. It felt bruised, so I assumed that I had hit my hand against my bed side cabinet whilst asleep and didn’t think much else of it. However, after about a week, it was still as painful and was now bright red. Those who know me know that I am porcelain skinned, so a bright red knuckle was very noticeable. I felt pain with even the slightest touch to my knuckle and especially if I held something slightly heavy in my right hand, such as a cup of tea. My fiancé Jamie thought that I should get it checked out at the doctor, but as I was going to Spain at the end of June for a hen weekend, I decided to leave it until I came back. At the time I didn’t even contemplate that it could be anything serious, so I didn’t see the point in rushing to the doctor for a sore knuckle?!

Whilst in Spain, I noticed that my left foot was looking rather red and slightly swollen. Immediately, I thought I had sun burn on my feet. I always wear socks on holiday because my feet burn so easily, but I had been in and out of the pool, so it was very likely that there was a period of time where my feet were exposed to the sun. And although it was quite painful to walk on, once again, I didn't think much of it. A day or two after we arrived back in England, the swelling in my foot went back down, the redness faded and the pain subsided. My knuckle however, showed no change.

A few weeks later, at the start of July, I woke up with my left foot feeling very painful to walk on again. I had been wearing heels at a wedding the night before, so I just put it down to that. But the day after it felt even worse, and had started to swell in odd parts of my foot. I was worried that I was having an allergic reaction, so I went to A&E. After two hours of waiting, the doctor took two minutes to look at my foot and told me that I had probably done too much walking and had strained it, despite me insisting that I hadn’t walked very much at all. She sent me away with crutches and told me to take some pain killers. I was made to feel like I was over reacting and wasting their time to be honest.

Over the next few days my foot became more and more swollen, it looked three times the size of my right foot, so I had to go to my GP. Straight away she was concerned and thought that there was a link between my knuckle and foot, so she sent me for blood tests and X-rays. It took a week to get an appointment for a blood test and then another week of waiting for the results, which was agonising when my foot was so swollen. But eventually I was referred to a rheumatologist, with an appointment for 21^st August. In the mean time, my GP started me on steroids called Prednisolene, to try and reduce the pain and swelling.The steroids actually worked really quickly, the swelling started to go down in my foot and on some days I could manage with one crutch.

It was tough having to be so reliant on others during my wait for my appointment, but I am very lucky that family, friends and colleagues were great with me. One of the most frustrating parts for me was the judgemental look on people’s faces when they saw me on crutches. I can’t count the number of times people looked at me with a disappointed face and said “what have you been doing?” assuming that because I was young, I had fallen over when drunk. It was so frustrating!!

Then one morning I woke up and felt a new pain, this time in my left clavicle (collar bone). This made it difficult to lift my left arm higher than shoulder height, and made it very uncomfortable to lie down any way other than on my back. The fact that whatever was wrong with me was spreading while I was waiting for treatment made me feel very defeated at times, but I stayed focus on my appointment date to get me through.

When my appointment date came, I was like a kid at Christmas; I couldn’t wait to get some answers and I just wanted to get better. I was quickly diagnosed with Seronegative Rheumatoid Arthritis, which basically means my immune system is making antibodies that are fighting against the tissues in my joints, making them painful and inflamed. Doctors are unaware as to what causes RA.

My swollen index finger

The plan was to start on a drug called Methotrexate, which dampens my immune system to stop it from attacking my joints, but before I could start on it, I had to have several blood tests and meet with a rheumatologist nurse. So I was given a steroid injection which would last for 3 months, as a temporary measure until I could get started on my treatment. The bad news is the injection didn’t work at all, so I had to go back on oral steroids.

After a month of waiting, I still hadn’t had an appointment through to meet my rheumatologist nurse and start my treatment. By this point I had arthritis in my left foot, my middle toe on my left foot, my right ankle, my left wrist, my right middle knuckle, my right index finger, my clavicle and my neck. I was so overwhelmed with pain and swelling, I literally couldn’t do anything without something hurting. My GP doubled my steroid doesage and contacted the hospital personally to rush my appointment. Thankfully a week later I received an appointment to see the rheumatologist nurse for 9^thOctober. 

The whole process of diagnosis and treatment took so many months, it felt like such a long battle, when really it has just begun. In the months I spent waiting to be treated, I kept focus on my appointment dates and getting through each day without too much pain. At the moment, I wake up at 5am each day to take 4 steroids and 2 ibuprofen, and then go back to sleep until I have to get up for work at 6.30am, by this point the steroids and pain killers have had time to start working. After a day at work I am exhausted and struggle to make it to 8pm without my eyes rolling. By 9am I am desperate to sleep, so I take prescribed extra strength cocodamol and ibuprofen and get in to bed, ready to start the next day. 

The weekends are my time for extra sleep and rest, I'm not well enough to do anything with friends or go anywhere. I know that some friends will be thinking badly about me because they haven't seen me for so long, and I never say yes when I am invited somewhere, but the fact is I wouldnt be able to handle it at the moment. I know that the true friends will find out what was going on with me and understand. It's quite interesting to see who has contacted me to make sure I'm okay and who has idly bad mouthed me behind my back for never going out without realising why! 

I have just started taking the Methotrexate on Wednesday, and they say it can take up to 12 weeks to start working, so we'll see how that goes...