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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4 Comments (+add yours?)

  1. theadventuresofguyandli
    Jul 16, 2014 @ 05:40:07

    Shame honey sounds like it has really been a struggle! My husband (pharmacist) suggested you look into diet and or probiotics to help control the inflammation. Apparently there is some new research into probiotics for inflammatory arthropathy…. Hang in there and good luck for these next few weeks! X

    Reply

    • minximina
      Jul 16, 2014 @ 05:43:43

      Cheers! I have started to look more at diet… There’s just so much info out there. I’m definitely going to address it further once babies out, I just can’t help wanting to eat a wide variety and balanced diet whilst I’m busy growing him/her! x

      Reply

  2. tooyoungforarthritis
    Jul 17, 2014 @ 16:36:01

    Aw bless you. I really think you are amazing going through this. I’ve always thought having ra and pregnancy was a big no no and it really is fascinating reading your blog and realising that it is going to be hard if I ever go down that route myself but so worthwhile. x

    Reply

    • minximina
      Jul 17, 2014 @ 17:05:45

      Thank you! I had planned for hard, but I hadn’t realised quite how tough it would be. But I do think a lot has to do with the comparison between how well I was controlled before and now.
      You are absolutely right though… So worth while, I’m so excited about the future!! And apart from the joints I’m absolutely loving being pregnant, it’s lovely to feel little movements and to see my body change gradually, it’s pretty amazing! I’m just so thankful that from chest to pelvis I’m pretty much pain free!! (Fingers crossed that continues!)

      Reply

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