Good Days and Bad Days…

We all recognise this pattern I’m sure. I have been working at my pacing, and I have eliminated milk from my diet (not quite dairy completely… but not far off), and I am a lot better than I was 4 months ago:

Fat Fingers!

Fat Fingers!

I’m sure the above changes will have made some difference, however, as every medical professional keeps telling me, ‘as it [pregnancy] is a high steroid state for the body, RA tends to get better naturally during pregnancy’, maybe it’s just that as the months pass by, my natural steroid levels are helping me keep my pain at bay.

My last consultation with a medical professional was with my obstetrician. She informed me that despite there being no real risk to baby with taking the prednisolone, if I continue with it for the duration of the pregnancy she will have to have me on IV hydrocortisone during labour and keep me in for observation for 3 days post-partum. This means a consultant led labour in the hospital. I had kinda had my heart set on a labour that was midwife led, and ideally involved a water-birth. So I have decided to give it a go giving up the steroids.

The last time I came off the steroids was at about 8 weeks pregnant (March-April time), I went from being on 10mg daily to nothing, I lasted 5 weeks and I was in hell…. See hand photos above.

Since going back on the steroids, I have reduced them down gradually from 10mg to 7.5mg to 5mg to 2.5mg, but before the obstetrician appointment, I found I was still struggling at 5mg, and therefore didn’t spend many days at 2.5mg. I was in turmoil, I felt that if I was still getting pain and stiffness at 5mg, what was the point of taking them anyway, but the pain stopped me from stopping them all together as I knew I just wouldn’t be able to carry on at work. So I stuck at 5mg, knowing that I had pain, but that it was less than I would if I wasn’t using them at all**.

After seeing the obstetrician, I made the decision to try to wean myself off the steroids, and have accepted (reluctantly) that this may mean I have time off work if needed. I wanted to come off the steroids if I could anyway, as I wasn’t 100% sure they weren’t giving me muscle and tendon pain (or was it just my tendons with synovial linings that were giving me the jip and therefore all part and parcel of the RA… the trials and tribulations of being your own therapist!), which to be honest I could do without, especially with a little baby on the way. Plus I’ve got to stop them eventually, therefore, I feel better now, with it maybe effecting my work, than when I have junior to look after, love and enjoy!

Essentially, this is me starting to consider my life and health over my sickness from work…. A big step for someone who abhors being off work.

So, my regime has started, my week on holiday was my last week of 5mg/day. I then started to alternate 5mg/2.5mg for about 4 days (I have a short time frame if I’m to get off these drugs in time for my obstetrician to be happy!! 28 weeks… I’m currently 24 weeks!), I’m now at 5mg/0mg… the first few days of 0mg weren’t too bad, and some days even the 5mg days were worse (possibly activity related), today has been a 0mg day… I was hoping to go swimming, but I have postponed that until tomorrow – today was tough. I have a big fat swollen knee, and a very painful left ankle and midfoot… but it has been a busy days at work too. Hopefully tomorrow will be better!

The plan is, to break my 5mg days down to 2×2.5mg initially, then go to 2.5mg/0mg, and a few days before week 28 to finally get to 0mg/0mg……

That’s all well and good, but I then have to manage with that until week 36 until I see my obstetrician again to start making birthing plans.

I am so grateful for my other half, he is being so helpful and understanding, and equally isn’t treating me like a patient! I still have to ‘do’ about the house, there’s no being waited on in this house! Which I might moan about at times (in jest), but I am hugely thankful… I don’t want to be sickly, or get into a ‘sick’ role, I just sometimes need support, and that I have in abundance (and the fact that the dishwasher, washing machine and dryer get filled and emptied now makes my life a little bit happier!!).

**I’d love to hear if any of you have any thoughts on the steroids and muscle pains/tendon pains and coming off the steroids after an extended period of time? Part of me keeps wondering if the battles I’m having now are a little of my own making for taking the easy route?

 

Me at 23 1/2 weeks...

Me at 23 1/2 weeks…

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Welcome to Wordpress!!

Hi there!! So please bear with me, this is my first ‘blog’!!

I’m Nina, I was diagnosed with Rheumatoid Arthritis in 2007, I was 23, it wasn’t a huge surprise to me, I had just finished a physiotherapy degree, so I was pretty clued up on the early symptoms, so when I went to my GP with pain and swelling, I think he was more surprised than I was at the blood results. I was, however still pretty devastated, which thankfully once on the right mix of meds, ebbed away.

I didn’t ever think about blogging about RA, I didn’t have much to say, I was well controlled early on (after a rather shaky start**), and had a career and a life to be getting on with!! In fact I didn’t know much about blogging until very recently (and I still don’t know much at all!) when I met a colleague who was blogging about her life here in the UK, following a move from South Africa. This piqued my interest… but only over the last 3 months have I really seriously considered writing my thoughts down.

So what happened 3 months ago? Well, it actually started last May (2013). When my other half and I decided we were finally as ready as we were ever going to be to start a family***. I was, at the time, pretty well controlled by Methotrexate 25mg, and Etanercept 50ml injection once a week, and to start the planning of our little human, I stopped the Methotrexate.

Straight away I noticed a difference, but I put up with, and managed myself with the addition of NSAIDs (Non-Steroidal Anti-Inflammatory Drug) until October. I had decided to be off the Methotrexate for 6 months, rather than the 3 months suggested by the consultants, because I wanted to be sure it was clear of my system…. (I think if I were to do this again I will look a bit more thoroughly into the evidence behind the recommendations, as six months was tough!). In October I got in touch with my consultant and the addition of Prednisolone helped me cope enormously! Steroids really can be magic…. Forgetting about all the side effects for a moment!!

Along came February… and the news we were all hoping for!! I was PREGNANT!

So here we are, 15 weeks in, due in November… all meds stopped 15ish weeks ago… No steroids, No Etanercept, No Methotrexate… exhausted, worn out, and in pain.

And this brings me to why I’m here, I have been looking for an outlet for all my thoughts and feelings at this time of my life (which I have A LOT of!!) and hopefully connect with other people that might be going through the same dilemmas, highlights and lows. Since deciding to take this on, I have discovered that there are LOADS of blogs about RA, and I am only just beginning to scrape the surface of them… I wish I had known about them over the last 7 years of my life… I might be far more educated and informed than I am now…

So, my fist blog completed…. Let’s hope I manage a few more!

 

 

** Initially I was prescribed Sulphasalazine… which did not agree with my liver AT ALL!! So apart from being in pain, I was very unwell, but thankfully, a change of hospital, consultant and DMARD (Disease Modifying Anti-Rheumatic Drug), and I was well on my way to being very well controlled for the best part of 5 years

*** well, add a little human to the house hold, as there is already the two of us, two pooches Riva and Zeus, and two Yellow Bellied Sliders George and Gonzo – photo’s to follow!

 

Waiting patiently on a picnic break in the hope of a buttie!

Waiting patiently on a picnic break in the hope of a buttie!