Friday, 24 May 2013

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.

Friday, 10 May 2013

Metoject Update

I have now injected myself three times, each time with little problems. Of course it hurts a bit, but after 5 minutes it is completely forgotten about and I can get on with the rest of my day.

I was so pleased to have absolutely no side effects after I injected the first time and just hoped that this time the medication would work.

I started to notice that my psoriasis was less red and noticeable. My arm didn't look completely clear by any means, but it was definitely improving. I also managed to start running again, something I wasn't sure I would ever be able to do again. These were all positive signs and I began to gain a bit of hope.

The next Friday I woke up to have no voice at all. I had been feeling a bit off for a few days, quite tired, no appetite and I had slight sinus pain, but Friday it had seemed to hit my chest all at once. Regardless, I did my injection and went to work, which happened to be at a client's premises. 

Despite the fact that I was unable to speak, I actually felt okay for the first hour or so. But at around 10am, I suddenly started to feel very nauseous and by lunch time I had to go home to be sick. I went back to work though as I didn't feel as bad after that, but the rest of the day I felt very drained.

After a few days of having no voice and feeling pretty under the weather, I went to the doctors to find out I had bronchitis. This explained why I was feeling so ill, but as it is a virus, there is no treatment for it, I just had to ride it out. 

By the next Friday I was still feeling ill, but got up and did my injection none the less. Once again, after a few hours, I was sick, but this time it kept coming. After a few times being sick in work I had to go home, I felt horrendous and slept for the rest of the day. 

I have contacted my nurse as I am concerned that it is the injections making me sick, but since both times I have been sick I have also had bronchitis, the nurse can't be sure which is causing it, or if its a mixture of them both.

So for now I have had to stop my injections until I get rid of this bronchitis. I'm hoping that will be soon as I have had it for two weeks now. Then once it's gone, if I take my injection and I am sick again, we will know that I can't tolerate them either.

I really hope not because it is such hard work trying to get started on a new medication. Fingers crossed I can take my injection next week and all will be okay!


Friday, 19 April 2013

Metoject - My First Go

So in a previous post I mentioned that there had been another mix up with my notes and therefore a hold up with an appointment to start injecting Methotrexate. Thankfully the nurse managed to get me an appointment a few weeks later, for Friday 19th April at 9am.

Today was the day and I was understandably nervous this morning. I am not afraid of injections or needles, especially since I have to have blood tests every month, but injecting yourself is a different matter.

I had a new nurse today, who was lovely and made me feel slightly more at ease. That was until I saw the needle and syringe! I actually expected to be using one of them pens that diabetes sufferers use to inject insulin, so when I saw a needle I panicked! 

The nurse went through explaining all the do's and don'ts, how to check the medication is okay, how to store it etc.. basically everything I needed to know. Then it was time for me to hold the syringe and get used to it. It felt very strange holding it, you see it on the TV all the time and watch nurses hold them in front of you, but when you hold it yourself, it feels like its something you shouldn't be allowed to do!

Once I was comfortable, I cleaned my hands with the sanitiser foam and got started. The first challenge was to get the cover off the needle, which is actually very difficult! You cant squeeze too hard or else some of the medicine will escape, but you have to squeeze hard enough to get it off. 

Then it was time to bite the bullet and inject. I must admit, I did pause for a second in slight panic, but quite quickly told myself to stop being a baby and just go for it. It's one of those things that the longer you wait, the worse it gets. And to be completely honest, it barely hurt at all. I felt it going in, but getting my bloods taken hurt way more than this!

It was so simple! No bleeding, no cotton wool over the wound, nothing! Its been about 3 hours now since I did it and there is still no mark.

So overall, nothing to worry about! Now my main concern is how well are they going to work...

I will keep you all posted!



Thursday, 28 March 2013

Want to know more about RA?

RA GuyOne 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

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.

Tumblr_mhrxvwhzpe1qkvjujo1_250_largeSo 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.

Tumblr_lmmx2ageep1qjiz8bo1_500_largeThen 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.

270444_2239264426773_1402911773_32683064_1091542_n_largeIn 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.

_(kgrhqv_!h8e-v!on52bbp2uj30gkw__60_12_largeAt 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.

Tumblr_mjenhfjylv1s1f7dwo1_500_largeSo 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...



Wednesday, 6 February 2013

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!
    

Friday, 1 February 2013

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! 

Friday, 25 January 2013

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.

FacebookIn 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!



Friday, 18 January 2013

New Year Update

Hi everyone

Happy new year! This year so far has been a bit of a busy one for me, hence my first post of the month being on the 18th of January!

Before I start, I would just like to acknowledge the late Alice Pyne. It was so sad to hear that she had passed last weekend. She was an inspiration to so many people and she showed that just because you have been diagnosed with an illness that you will have for the rest of your life, doesn't mean that you have to dwell on it. She also showed the power of using your illness to help others, which is what I am trying to do. RIP Alice.

So since my last post, I have reduced my steroids down to 2.5mg (I'm nearly off them!). Although, I have started to get pain back in all of the places I did before, so I am wondering if I will need to go back up to 5mg :( I am at the Rheumatoid Arthritis Doctor (Dr Wood) next week so hopefully she will advise me with what to do next. I've had to start wearing my wrist support occasionally again, I am struggling to get my arm above my head because of the pain in my collar bone, my feet are quite sore when I walk and most annoyingly, my fingers on my right hand are swollen and painful again. It feels like I am taking a step back, but I hope that Dr Wood will be able help me.

My appointment next week is for my 3 month check up from my first appointment... In August!! I was diagnosed at my appointment in August, then Dr Wood gave me a steroid injection that was to last three months and then she would see me again once I had started on my medication. Well, I finally received an appointment in the post in December for January 11th at 12pm, in Kendal! I had to ring up and rearrange for an appointment in Ulverston, otherwise I would have had to take pretty much the whole day off. The problems I have had with getting appointments has been ridiculous!

On a more positive note, I went to my monthly clinic with the Rheumatologist nurse this week. My blood test results showed that during the week that I was ill in December, my inflammation count shot straight back up to when I was first diagnosed with RA, so it was four times higher than the week before. Luckily my next blood test showed that it started to go back down again after that, so it was just down to me being ill. But other than that, my blood results showed promising signs, which means that I have now been passed to my GP and no longer need to go to the monthly clinic. It also means that I only have to get my blood tested once a month now rather than every two weeks which is also great news!

I am still on 6 pills of Methotrexate once a week, which I am pleased to say still aren't causing me too much trouble. I do tend to feel a bit dizzy and sometimes a bit sick on a Wednesday, but nothing too horrendous!