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.