Introduction

Hi, Thanks for viewing my blog. It lets me have a rant and I may even help someone along the way. Got the idea to do a blog following using an Arthritis Forum for the first time at www.arthritiscare.org.uk

I suffer from Psoriatic Arthritis which is very demanding in all aspects of my life and this is my story on how I deal with it on a day to day basis.

I have been spending lots of time recently researching arthritis and pregnancy, there isnt loads of information out there and the most helpful thing i have found to date is forums and hearing other peoples story. This just confirms to me why I am 'blogging', if someone like me wants to know they are not on their own.

Saturday 9 July 2016

Next chapter of my arthritis story

And so it all begins again...

It's been a while I know it's seemed like I've been crazy busy. TBH though it may be down to the fact I have actually been feeling quite low. Everything has been quite a struggle due to the PAIN. Yep, you guessed it my treatment failed.

When I last blogged I was starting on methotrexate injections weekly. Unfortunately; however as predicted, it wasnt very successful. So on the plus side it didn't make me feel nauseous and vomit like the tablet form of methotrexate did and I found it easy enough to inject (that is when I was actually able too - downside!) The negative side, I wasn't able to inject every week as, as previously on methotrexate it made me prone to picking up infections. In the 8 weeks I stayed on the methotrexate for I believe i managed to inject about 4 times as you have to miss your injection if you have an infection or are on antibiotics. Well in this short space of time I got so poorly, can't remember picking up so much since last time I was on methotrexate and even then I can't remember it having been this bad. I managed to get a throat infection, chest infection and ear infection in this time as well as just generally feeling pretty shitty.

I'd had enough, I think I'd given it a fair try. I couldn't carry on being this unwell when having to look after my two young children. Especially as it was having no benefit on my pain.

It's been a long process since then and thankfully (after seeing the rheumatology nurse practitioner whom I used to see that has returned after spending time doing research) it was agreed that I could not continue in the state i was in, and yes it was clear the methotrexate had failed but I'd jumped through the hoops necessary to be considered for other treatment.

It was decided I would retry entracept. This anti TNF treatment I tried previously to coming off everything in my attempts to conceive my first. Whilst it benefited me back then I was still taking methotrexate too and just generally feeling too poorly. I believe however that this was down to the methotrexate. It took a lot of explanation and discussion to make rheumatology aware that I'd only stopped the entracept previously to try for my babies and not that it was because it hadn't worked. It was therefore decided that this would be our next try.

I had to wait for it to be ordered and then consequently delivered to me before I could commence treatment. And it turned out that before I could even be prescribed it that I had to have yet a further blood test to check I didn't have TB, not that it was suspected I did. Thankfully that came back clear (yay! I passed a blood test). So then it was ordered. I got my first delivery of the entracept injections Wednesday this week. Stored them straight in my fridge as directed. Then spent the next couple of hours keeping myself busy and distracting myself. I had become very anxious. Not about administering the injection just about starting the treatment again, this time without methotrexate, this time a few years on from previously (now I have two little ones relying on me to function). I came to the conclusion though that I couldn't surely feel much worse than I do currently. My pain is on an all new level and whilst yes I do learn to live with it, I'm finding each day more of a struggle. This is turn is affecting my mental state, some days I could just hide under the duvet all day or spend the whole day crying. Neither really an option with two small kiddies relying on you.

I took the leap and plunged into the next chapter of my arthritis story. Here goes.....


Wednesday 6th July 2016 approximately 3.30pm first dose administered successfully (well eventually). Slight, erm, stumble along the way. You see back when I used to inject the entracept (then enbrel) much like my more recent experience of injecting methotrexate - you push the injection pen right down on your skin and then press the button which triggers the needle to fire and the drug to be administered.



Now the entracept (aka Benepali) unbeknown to me wasn't quite the same. There is no need to press a button as you just press it down onto your skin and the needle is pushed in which triggers the drug all by itself. Ouch! Wasn't expecting this, begun to push the pen onto my skin thinking I'd then have time to pull myself together a bit before pressing the button, when I'm pricked by a needle and my knee jerk reaction was just to pull it away, something must be wrong. It had only slightly broken my skin and the drug hadn't been triggered. I looked at the instructions (yes, this is why you should always read the instructions first), oh there isn't a button to press afterall, its supposed to go straight into my skin as I push the pen into my skin and it will start automatically. Yay, this is a good thing no more a struggling to press the button with my doggy thumbs when they are not wanting to work, but, boo hoo no mental preparation time. It'll take some getting used to, but it'll be fine. It stung more than the methotrexate injection but from memory not as much as the entracept used to. 

I found the next day that it had left me with a nice little bruise but other than that 4 days on (touchwood) no side effects. Obviously I know it's early days but so far so good. Hasn't made a difference to my pain but it's not miracle overnight cure or anything - MUST FACE REALISATION THERE WILL NEVER BE ONE OF THESE! But fingers crossed and thinking positively that in a few weeks maybe I'll start feeling a little better and in the long run hopefully this will be the answer to make me more comfortable and enable me to get a better quality out of  my life. Not only for my sake but my husband's, children's and the rest of my family and friends. Apologies go out to you as you haven't been getting the best of me, especially recently, I haven't been the happiest due to the constant battle with pain and in turn my depression. I've probably been more distant, and not overly ' in the room ' , I quite often go away from our conversations or meet ups not convinced I've actually been there and/or contributed anything. Please know I always try my best and you all mean so much to me, without your continued support I would be utterly lost. 






Tuesday 26 January 2016

Tea rations

I started the methotrexate a week ago today. It's been a busy week with my sons birthday so hard to tell if the tiredness is related. I know that most people say, of course you are going to be tired, you have a baby and a toddler -but I really can't blame them  they both sleep through; it's me which doesn't!

Apart from the tiredness the initial side effects have not been too bad, I felt a bit nauseous the day after the injection and walked around like a zombie. The worst of it was a horrendous headache the day following the injection. Of course, all of this could just be coincidence. It will take a few weeks to establish what is linked to being on the methotrexate.

I don't usually, but I actually read the patient information leaflet which came with my medication and was distraught to find out that I need to try and avoid too much intake of black tea. Now alcohol that doesn't really bother me, I don't really drink but my black tea Nooooooooo! Don't take my tea away, I need that to function. Therefore I have been on tea rations since last Tuesday. I decided two cups a day just wasn't enough so saw no option but to try green tea. I was sceptical, but had it delivered with my shopping this morning and promptly had my first cup. It was lovely, so I've had a few more. This I can live with!!!

I administered my second injection this morning, no problem, I'm quite proud of myself. I was worried if I'd be able to do it as my fingers are quite swollen and painful today as I am flaring, but I did it. Now all that's left is to hope it helps.

At the weekend my big boy turned 3, I do not know where those 3 years have gone, and how is my baby turning 6 months on Friday. Time just goes too quickly. My family keep me strong and it's for them that I do everything in my power to try and be as well as I can because I do not want them to miss out on things because of me.

Wondering now what the week ahead holds???

Tuesday 19 January 2016

Over the initial hurdle

So, the injection itself was fine. Unlike previously when I had to inject myself, I managed to do it straight away. No working myself up into a state! Also, in contrast to enbrel which is the drug I used to inject, I couldn't even feel it. Afterwards the site of the injection stung for a short while, but all in all I'm feeling positive.

Next week, I haven't got to go to the hospital to be supervised doing it, I will just be doing it myself at home and I'm actually feeling OK about it.

I'm still going to bed nervous tonight, the dreaded side effects, all I can hear myself saying is ' don't be sick, don't be sick, don't be sick'. Fingers crossed I will wake up in the morning side effect free, and who knows this journey may even take me to one day waking up bright eyed and bushy tailed, symptom free! So I may be dreaming but we can all hope.

I left the hospital today with my support I went in with (mummy and kids - hubby was working), paperwork regarding the medication or as it is also referred to subcutaneous chemotherapy treatment (how scary does that sound? 😧), 4 weeks worth of injections and an oversized sharps box. I really am starting to look like a pharmacy with my collection! My 3 year old son was very helpful and carried the sharps box, my poor kids, hospitals and drs are like their second home. On the positive, hopefully they shouldn't have any fears of hospitals!

I will update my journey as it goes, thanks for reading 😊.

Today is the day

So, it's taken longer than expected to get to this stage. But today is the day, today I start on methotrexate again. I have taken the decision to administer it weekly via injection rather than take the tablets as it should lessen the side effects on my liver and the sickness!

I haven't felt a stranger combination of feelings that I do today in a long time. I am surprisingly so excited to be starting this as I am in so much pain and just hoping that it will help. But I am so nervous too, never been a fan of needles, but also worried about what side effects can occur. Will I be chucking my guts up tomorrow??? 😖😖😖😖

Watch this space...