Metoject take two!

So since my last post, I have taken a break from the metoject to get rid of the bronchitis. Thankfully it has almost gone now, with only a slight cough left behind.

I decided to try again with my injections last Friday, but this time to inject into my leg to see if this would help prevent being sick. It actually hurt a lot more than my stomach, but maybe this was because I was so nervous about it this time. I also bled a little bit, which I never did with my stomach.

Despite this discomfort, I wasn't sick! I was extremely tired over the weekend and slept for most of it, but other than that, I was okay.

This morning I injected into my leg again, this time with much less pain, however when I took the needle out, a bit of the liquid from the needle came back out of my leg. A bit strange! I have emailed my nurse to make sure that this is okay. Once again, I have not been sick, which is great.



My finger was swollen and stuck in the
position in the first picture for months,
the second picture shows that I can now
bend it nearly all the way and it's much
thinner!

So is it working? I would say without a doubt the injections are having a positive effect. My psoriasis is definitely reducing and my joints feel almost pain free. I feel slight discomfort in a few of my joints at times, such as my index finger if I pick up something heavy, but definitely there is a massive improvement.




Hopefully now I am on the road to recovery and I can tollerate the metoject.

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...

10 Things I Took For Granted...

Below is a list of the top 10 things I took for granted before having Rheumatoid Arthritis:

1. Washing & styling my hair - Since my hands have become very painful and swollen, I have lost the ability to squeeze anything. I currently use herbal essences shampoo, however the design of the bottle is a nightmare for me to get anything out of it, particularly the conditioner! I have devised a new way of getting the shampoo out of the bottle, which is pressing it against the wall with one hand and putting my other hand underneath to catch the shampoo, but this does take a lot of effort. I think I may start choosing my shampoo based on the bottle rather than the contents! Once I have got the shampoo out, I really struggle to get my left arm higher than shoulder height, which means anything to do with my hair has to be done with one hand. It doesn't sound that bad, but try washing your hair with one hand, its not that easy! Especially when the fingers on the hand you're using are swollen. This also goes for putting my hair up, so if you see me going for the "bed head" look, this may not be out of choice, it is probably because I haven't been able to do anything with it!

2. Not having to worry where I can get a parking space - There are times when no matter how sore/tired/lazy/ill you are feeling, you have to go shopping, and this applies to everyone! There's always that one thing you consider leaving for another day, but in the end, you really need it that day and have to go out. On these days, I will drive round and round for ages to try and find a spot close to the shop that I need to go to. Even if I have been driving for 15 minutes and there is a perfectly good spot further away, sometimes I just cant manage the walk on top of having to walk around the shop.

 3.Wearing what ever shoes I want, when I want - I adore shoes! And in particular, I adore high heeled, platform shoes. However these do not mix with swollen and painful feet or weak ankles. Don't get me wrong, there are some days when I can wear heels, but more often than not, I can't. If I know I want to wear heels at the weekend, I do try to walk less during the week to try and keep the pain down, but this does not always work. Also, it's not just heels, sometimes I cant wear a pair of flat shoes simply because my feet are too swollen to fit in them.

4. Helping people - So many times I hear "will someone help me carry this" or "can someone pick one of these up" and previously I would be the first one to help. Even though I am small, I was surprisingly strong and would never think twice about helping someone with anything. But now I simply can't! I am in pain in so many places that I struggle doing things for myself let alone helping anyone else. My consultant also told me that putting too much pressure or strain on an affected joint could tear my tendons around it very easily. Even though I know this, I always feel guilty when I hear someone ask for help , especially when no one else volunteers and sometimes I will try anyway. 

5. Being able to pick up a cup of tea with one hand  - I first noticed the start of my arthritis when I felt pain in my knuckle picking up a cup of tea. Since then it has spread to my fingers and wrist, which makes it incredibly painful to pick up anything with one hand, even a cup of tea! I cant put any pressure on my index finger because it is so swollen or my middle finger because the knuckle is so painful, which means that the only fingers I can put in the handle part is my ring finger and little finger. If you've never tried picking up a cup of tea with just those fingers, it's really hard! My left wrist is also too weak to hold it, so I have to share the weight between both hands.


 6. Enjoying lying around in bed at the weekend - I used to love the feeling when you first wake up at the weekend, with no need to get up right away, so you can just lie in bed  under your nice warm covers and wake up gradually. Not anymore! Now when I wake up, I want to sit up right away because something, somewhere will be hurting, no matter what position I lie in.

7. Unlocking a door - It is a nightmare for me when I have to use a key to unlock or open a door! I find it really hard to grasp the key and then I also really struggle turning it. I feel like Alice in Wonderland trying to open a tiny door, using a tiny key, with a massive hand! I have to use a key every day to get in to work and quite often at weekends there will be no one home when I arrive. There have been times when I have spent 10 minutes outside my house trying to get the key into the lock or trying to remember which way I am meant to turn it, because neither seem to be right!



8. Being able to open up bottles, jars and packets - This is a bit of an obvious one, but when you have swollen fingers, it is almost impossible to open anything. I can't count the number of times I have gone to make pasta and not been able to open up the jar of pasta sauce, or gone to make a drink and can't open up the vimto bottle.  It is so frustrating when you are on your own.

9. Not having to arrange my life around medication - At the moment, I take 8 pills of methotrexate on a Wednesday morning. This means that my Wednesday evening is pretty much a write off because I feel horrendous. I have never known nausea like it and it can last for days. I try to arrange everything I have to do in the week so that Wednesday is clear. That way I can go home after work on Wednesday and spend the night watching films, reading or having an early night. I also have to take advantage of the times when I don't feel sick and try and eat something, because at the moment I can't make it through a meal without having to stop due to feeling sick. I can't actually remember the last time I ate a full meal.

 10. Feeling secure in public places - It has never been something to cross my mind until I got RA. But if I know I am going to a public place, I can't help but worry that I am going to get hurt. Places like pubs and clubs are the worst because people will just push past you without thinking that they could be doing some real damage to a person who is fragile. But I even worry in places like waiting rooms because I'm scared a child is going to bash my feet while I'm sat down. I didn't realise before, but public places can be very stressful places because you have no control over other people.


This may seem like a negative post, but I thought it was important to show what RA sufferers go through on a daily basis. I also thought it was important to highlight how much some people take for granted, I wish I realised before hand. They may seem like small issues, but it's hard to deal with when they occur on a daily basis and you never had this problem before.

My next "10 things" post however, will be a positive one , so look out for it!
    

Steroid Free

Hi everyone

So since my last post, I have decided to come off my steroids completely. They weren't doing me much good painwise and they were giving me far too many problems. I started to get a painful and bright red rash around my mouth and on my chin, I put on nearly a stone and they gave me terrible heart burn. I have been taking steroids since July, but since I was on 2.5mg before hand, I decided that I might as well just stop altogether.

Red and swollen index finger

My main concern with coming off steroids was that my foot would balloon again, like it did last time I stopped taking them. Luckily this hasnt happened! The arthiritis has got really bad in my shoulder and collar bone, I can't raise my left arm above my head without being in a lot of pain. My index finger and middle knuckle is also causing me a lot of greif at the moment too and to be honest, my pain is back pretty much everywhere. I am also beginning to get really tired again. This was all already happening before I came off the steroids though because my tnedication wasn't working, so I am not going back on them! At least now my consultant and RA nurse can see my real pain rather than it being masked with steroids. 

Swollen index finger

As for increasing my dose of Methotrexate, there has been no positive things to say yet, but I am struggling to eat because I feel so sick from it. I took my latest dose on Wednesday and have felt constantly sick since. Im hoping that the Folic Acid I need to take tomorrow will do it's job and get rid of the nausea.

Hopefully, my next post will be something positive to report on! 

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!

Improvements...

Hi everyone

I noticed a few improvements in my condition over the weekend, so I thought I'd let you all know!

Firstly, on Saturday morning, Jamie (my fiance) and I were up at 6.30am because Jamie had work. Usually when Jamie works at the weekend, he drives me home because I don't have time for my steroids to kick in before I have to drive. However, this weekend I managed to drive home 15 minutes after getting up without too much discomfort! I'm not saying it was a pain free drive, but certainly bearable, which is a huge improvement. This got me thinking that maybe I don't need to wake up at 5am to take my steroids anymore... The past two days I have taken my steroids at my normal wake up time of 6.30am and have managed to drive to work okay. So no more 5am wake up calls!!!

Secondly, after getting home, having my breakfast and catching up on Friday night's Children in Need Show (I recorded it so I just watched certain parts) I decided that I would go for a walk. My dog isn't very well at the moment, and Jamie still at work, so at 10.30am I set off walking on my own with only my iphone music for company. I didn't have a planned route or time to walk, I just went where my feet took me. I was quite surprised when I walked back through my front door to see that it was 12pm and I had been walking for an hour and a half!

I took this picture of the Abbey on my walk, how pretty does it look?!

I felt great after my walk! Admittedly my feet were a bit sore and my legs were ready for a sit down, but all in all the fresh air and exercise left me feeling awake and energised. After so long of hardly being able to do anything, it is so nice to finally become more active again. Im looking forward to my next walk now!

My third improvement is I have decreased my steroids again by 2.5mg, so I am now on 12.5mg. Each time I decrease, for the first few days I feel slightly more pain in my joints, but then it starts to get better again. I think this is because my body needs a few days to adjust to the new level of steroids. Im going to keep decreasing them by 2.5mg every few weeks until I am either in pain again or hopefully, until I am off them completely. Fingers crossed its the latter!

The only slight disappointment is my index finger still shows absolutely no sign of improvement. It is still swollen and I still cant straighten it or use it for anything. Maybe my next dose of MTX tomorrow will start to help.

MTX week 6 & Winter Walks

Hi Everyone

There is not much to say in terms of MTX week 6 to be honest, as there are still no significant changes. I am not in any less pain and the swelling of my index finger in particular is just as bad. At the same time I have not had any side effects from the drugs other than feeling dizzy in the morning that I take the MTX. So in that respect, I'm still waiting!
On a more positive note, I have decreased my steroids again by 2.5mg, so I am now on 15mg a day. I decided to decrease my steroids by myself because the visits between seeing my rheumatology doctor is 3 months, and there was no way I was waiting 3 months to start decreasing them!

I don't like taking the steroids for many reasons; 

• they can thin your bones, 
• they can destroy your stomach
• they stop your body from producing natural hormones and many other side effects. 

But the main issues I have found are constant hunger, reduced memory and water weight gain (mainly on my face). Lots of people have said that they can hardly tell I have gained weight and that my face has become more rounded, but I can tell and I have felt very self conscious about it all. You know your own body and you know when something changes.
Therefore I decided to start walking as well as decreasing the steroids, to try and shift this stupid water weight! In order to manage walking I have to strap up my feet and wear a knee support, but its worth it and I am really enjoying becoming more active again. I also love walking in the winter in the fresh air, its my favourite time of year.

Last night after walking for an hour with my dog and niece, I sort of ruined my hard work and had a hot chocolate with cream and marshmallows! I'm not usually a fan of hot chocolate to be honest, I am a big tea drinker! But on the rare occasion that I have one, I go all out with cream, marshmallows the works! I made one for my niece too and it seemed to go down well! I must admit, it was rather tasty and I can see myself having a few more over the winter months. But isn't that part of the fun of cold weather? Walks in the fresh air, big, comfy clothes  and lots of warm food and drinks?!

Don't you just love winter?!

  

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...