One of my favourite Rheumatoid Arthritis blogs is Rheumatoid Arthritis Guy and I regularly check out his blog for new updates.
One thing I came accross recently was his 60 second guide to RA, which I think sums up the main points perfectly. If you aren't too sure exactly what Rheumatoid Arthritis is and who it effects, I suggest you take a look :)
Friday, 22 March 2013
So after waiting for a sooner appointment, I heard nothing for weeks and therefore I decided to email my rheumatology nurse. It has happened before where my nurse hasn’t had any of my notes passed to her, so I decided to tell her everything that had happened in my appointment with the consultation so that she was prepared.
I had been in more pain since reducing my dose of mtx and my skin had become quite sore, but I just set my sights on my appointment in March to get me through.
So yesterday was the day that I could finally get started on a new treatment that may work. I was apprehensive about having to inject myself, but at the same time excited to get better. When I arrived, it was not my usual nurse who greeted me, but another nurse named Jill. When we got in the room, Jill said the words that made my heart sink “so you’re here for a check-up”. Instantly I knew that my notes had not been passed along from the consultant.
I knew that this would happen, which is why I emailed Judith a few weeks earlier. Jill explained that Judith is on long term sick and therefore she will be taking over her patients, as well as her own, but she had no access to Judith’s email.
Obviously, Jill could not take my word for it that I was meant to be starting injections, so she has to contact my consultant to confirm this. The second bad news of the day was that my consultant has just left and gone to Tenerife, so there is going to be a delay. Once this has all been confirmed, the injections need to be ordered, which can take a while.
Then even more bad news, Judith was the only nurse who knew how to use the metoject, therefore Jill needs training before she can show anyone else. On top of that, because she is having to see both her own and Judith’s patients, it is going to be a long wait to get another appointment with her.
So basically, I am left in limbo with no idea of when it is all going to get sorted. This is just one of many occasions where I have been let down. It is incredibly frustrating and I don’t even know what to do about it all…
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 21st 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...