Time for a reduction

So since my last blog post, I had been starting to really struggle on the days that I took my MTX injection, even to the point that I was being sick several times throughout the day. My hair was tons thinner and every Friday I would go home from work, have tea and get into bed to sleep off the side effects.

For a while I thought that this is the price that I have to pay in order to have my normal body back and that I should really count myself lucky because it was MUCH better than being on crutches for months. But it got to the point where I was so ill and fed up of wasting my Fridays that I decided to get in touch with the rheumatologist.

This was at the start of May, when I was actually long overdue a 6 month review that should have taken place in March. So I phoned up to find out how much longer I would have to wait for an appointment, to be told that there was a huge backlog of at least 4 months. This would mean that I wouldn't get an appointment until July at the earliest and there was no way I could wait that long.

One of the most important things I have learnt since being diagnosed with arthritis is that you have to fight to get an appointment, if you sit and wait, you could be waiting for months (which has happened to me before). So I stressed how much I need to see a rheumatologist ASAP and managed to get appointment for a few days later as someone else has cancelled. Proof that you can't take no for an answer!

After seeing the rheumatologist, I have been given anti nausea medication for the day of injection and a lower dose of injection. I have also been given folic acid to take every day rather than once a week, which will hopefully help my hair grow thicker again.

I've had three weeks of this new medication and so far so good, I still feel a bit peaky on a Friday, but no where near as bad. Also, Im sure my hair is getting thicker, so I'm feeling much less self conscious.

Hopefully this is a sign that things are on the up!

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.

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!

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! 

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!

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?!

  

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!

MTX Week 4 & Pride of Britain

Hi everyone

So, once again its methotrexate Wednesday, meaning the 5am wake up call included 6 MTX pills today. I still haven't noticed any side effects, which is great and since this is my fourth dose I'm hoping to start to see some improvement soon.  

I have also now started on a new medication omeprazole, as my heart burn from the steroids was starting to get unbareable and making me throw up all the time. Rennies and Gaviscon were my first point of call, as I really didn't want to be taking another pill, but when they made no difference I backed down and rang my GP Dr Wilkinson. She really has been very supportive and brilliant with me, and she prescribed omeprazole straight away in a rush at 5.30pm on Friday so that I could start on it immediately. Even though I didn't want to add to my long list of pills, I have to admit that they started to work the very next day and I now am heart burn free!! It's just annoying that I am now having to take more medication to reduce the side effects of other medication!

I used to take extra strength cocodamol before bed to help me sleep through the night, but I decided to stop this over the weekend to see if I still needed it. Turns out that I am still sleeping as well without it, so no more cocodamol for me!

I have aslo decided to stop taking ibruprofen in the morning, as not only is it a prime culprit for causing heart burn, I don't want my body to become to reliant on such a cocktail of medication. Since stopping the ibruprofen I am in a bit more pain in the morning, particularly in my hands, and it takes me longer to loosen up throughout the day. But its not causing me enough pain to make me desperate to take pain killers. so for now I am staying off them!

What I also really wanted to talk about on my blog today was the Pride of Britain Awards that were televised last night, and in particular, one of the winners Alice Pyne. Alice is 16 and has terminal cancer. Rather than be defeated, she has decided to create a bucket list, with her number one aim "To get everyone eligible to join a bone marrow register". Her blog documents her life and progress with her bucket list. She knows that there is no getting rid of her illness, but she has decided to do everything she can to prevent others from getting in the same predicament. So far, she has inspired 40,000 people to sign up to the bone marrow register.

Alice Pyne - an amazing young lady

This really struck a chord with me last night, not only because she is so inspirational, or because she is from Ulverston, which is where I work and 20 minutes from my home town of Barrow, but also because she demonstrated exactly how powerful a blog can be in raising awareness.

The aim for my blog is to have a place for young people to turn when they are diagnosed with Rheumatoid Arthritis. I plan to document everything I go through in terms of medication, side effects, relationships, lifestyle changes and so on, so that other young sufferers have some idea of what to expect. 

When I was diagnosed, and still to this day, I struggle to find anything about young sufferers with RA. It is a scary time when you are only at the start of your life, and you suddenly lose control of how it is going to go from now on. I'm still at the start of my journey, so I'm in the dark about what is going to happen over the next year, I have no idea if I will get to a point where I can walk down stairs without pain, or if i will ever able to use my hands again properly. So hopefully, I can build up a fairly detailed diary of what happens next, and this will help others. 

Please help me spread awareness of this blog and pass it on to as many people as you can.

Thanks :)

MTX Wednesday - Week 3

Well its Methotrexate Wednesday again already!

Today I had to increase my dose to 6 pills, giving me 14 pills in total to take this morning. Once again, I seem to have a bit of a dizzy head and I'm not feeling 100%, but at the same time I'm not throwing up or having to go to bed, so I can't really complain.

This is what I had to face at 5am this morning!

I also had my first blood test to check my liver functioning. I have to get this done every two weeks for the next few months, because MTX can cause liver disease among other things. So this morning I had to take myself up to the Path Lab at my local hospital (Furness General). 

Since the path lab opens at 9am, I thought I would get myself there nice and early and try to get in and out as quick as possible. But I arrived for 8:45am to find a large group of people waiting in the corridor. I got my queue ticket which said I was patient 14, so much for in and out! 

Just after 9 they opened the doors and let us in, so once I had handed in my queue ticket and blood test requirements slip at the reception I could sit down in the waiting area. I know I must have only been stood for 20 minutes, but I was desperate to sit down by this point! 

This is the slip I have to hand in at reception to tell them what I need to be tested for.

 
I ended up having to wait for about 40 minutes, but once I was called, the actual blood taking was quick and painless. I have had quite a few blood tests over the years, so getting it done never really bothers me anyway, but I have one or two experiences when the nurse cant draw blood, and I get turned into a human pin cushion! Luckliy this was not the case today!!

So overall not a bad experience for my first trip to the path lab, just a few pointers for the future:

1. 15 minutes before is not early enough to be in and out - maybe I'll get there for 8:30 next time
2. Take a book to read - it can be a long wait!

And as for the MTX, I haven't seen any improvement in my condition as of yet, but at the same time I haven't had any horrible side effects either. There's still a long way to go...

MTX Wednesday - Week 2

Hi everyone :)

As today is Wednesday, it was time for me to take my second lot of Methotrexate (MTX) this morning. If you haven't read my first post, I started taking MTX last week to treat my Rheumatoid Arthritis. At the moment I have to take 3 MTX pills once a week, however next week this will be increased to 6 pills.

My Wednesday morning pills (The yellow ones are the MTX)

I was told that I would see no positive effects from the MTX for at least 4-12 weeks, however I may start to feel some unpleasant side effects right away. The nurse said it is pretty common to feel or be sick and to feel generally unwell for a few days, but she also went into detail about a large list of side effects including ulcers and hair loss. There is more information about the side effects here. I know they have to cover every possible outcome just in case, but I couldn't help feeling worried about what was going to happen when I took the medication! I have to take Folic Acid on a Saturday, which is meant to reduce the side effects of the MTX, so this gave me some comfort. But again its just another pill to add to the list that I have to take.

My medicine drawer - steroids, MTX, folic acid and prescribed extra strength pain killers.

I have to say that so far I haven't really had any side effects. I feel a bit dizzy, sort of like my brain is taking a second to catch up with my eyes, but other than that I haven't felt any different. I haven't been sick thank goodness, which is what I was worried about because I have a history of not being able to stomach any medication (even Penicillin). But it is only the second week, I wonder if the side effects will kick in next week when I go up to 6 pills... Did anyone else find that the first few weeks were relatively side effect free?