Dis-Appointment Time

 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…

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...

MTX week 5, Bloods and more confusion!

Hi Everyone

So after my confusion yesterday about my prescription for MTX, I emailed my GP and requested more MTX and folic acid urgently as I needed to take the MTX this morning. I received a reply saying that it would be ready after 5.30pm, so it was going to be a rush to get the prescription and get to a pharmacy before they shut at 6, but at least I would have my meds on time.

I managed to get to the pharmacy at 5:45, but when I got there the pharmacist told me that my GP had only prescribed 3 pills a week for the next two weeks instead of a 6 a week for a month. They rang my GP (not my usual GP who is on holiday) and he said that he had on my notes that I was to start on 3 a week for two weeks and then progress to 6 two weeks later, which was right, a month ago! My GP was on his way out to a house visit so he said to give me what he has prescribed for now and ring him again in the morning. So basically there was a mis-communication between the hospital and my GP surgery about what stage I was at.

This morning I decided to go with my gut and take all 6 pills, because I knew I was right and I wouldn't be able to speak to my GP before I needed to take them. I rang my GP and asked for him to ring me back, and then headed out to the path lab for my second blood test.

My second visit was the complete polar opposite to my first in every way. Firstly I was the only one there until about 8.55am, secondly I only had to wait for about 15 minutes once I was in the waiting room and thirdly it hurt way more than the first time! I dont usually find blood tests painful, but when I looked at my arm afterwards, I have a large scratch up my arm where the nurse had inserted the needle. Even so I was pretty happy to be in and out much quicker this week.

When I arrived and collected my queue card, I was "patient 8" this week, despite being the only one there! Apparently people go the night before and get a card to save queueing in the morning. Only patient 1 & 2 turned up while I was there though, so I got seen to third. Much better than 14th last time!

My GP then rang me back, and after I explained the situation he said he would do a new prescription for a months worth of MTX, with 6 pills a week. He was actually very nice and said that he didn't want to make a rash decision late at night with such strong drugs, which I completely understand. So it is all sorted now hopefully!

In terms of the MTX side effects, once again my head feels a bit fuzzy and I feel exhausted, but nothing too horrible.

After a stressful few days I'm looking forward to a hot bath and early night tonight!

Drop in Clinic

Hi everyone

So today was my first visit to the reheumatology drop in clinic. It was actually my second visit to the rheumatology nurse, but the first was a sort of introduction to what is going to happen over the next few months.

I was slightly nervous about this visit today, not because I was worried about what was going to happen, but because I was unsure about what time I was meant to be there! When I had my first visit to the nurse, it was a scheduled appointment, but she asked me to come to her drop in clinic in a months time, any time between 8:30 and 9:45 and that it was just a first come first serve basis. However on Friday I received a text from "NHS no reply" saying "this is your appointment reminder for Tuesday 6 November at 09:10". 

Initially I thought that this would be an appointment with the rheumatologist doctor, but when I rang to find out, they said that this was my appointment with the nurse. Very confusing!

Anyway I went today at 8:50, so that I was there in enough time for the appointment, but my nurse was there waiting for me. When I asked her about the appointment time, she said that the text was complete rubbish and not to take any notice of the text, it is definitely a drop in clinic.

In my appointment, the nurse checked my joints to see which ones hurt, made a note of my recent blood test results and had a chat with me about how I am feeling. It turns out that my white blood cell count had gone up, meaning that I might have picked up an infection already, but she said it wasn't too high so I wasn't to worry. The good news is my inflamation count has started to decrease, not enough to notice any changes yet, but it is going in the right direction!

Last time I saw the nurse, she gave me a prescription for my first months worth of MTX and Folic acid, so I assumed that I would be getting my second months worth today. WRONG! Apparantly I am meant to get the prescription from my GP from now on, although I dont remember being told that! I am due to take my next dose tomorrow, so I had to email my GP and ask for the prescription, in the hope that she would do it today, I could pick it up after work and be sorted for tomorrow. Once again, WRONG. My doctors don't do same day prescriptions, even though I explained the situation. They said they will try and sort it for after 5.30pm today, but they cant do it before then, and they may not be able to do it at all. I just have to turn up at 5.30 and hope for the best.

So all in all, quite a bit of confusion surrounding my first drop in clinic, hopefully it is just a few teething problems and it will all get easier in time...