When I say 'medication-free'...

Isn't it funny the things that worry you at 2 o'clock  in the morning.  This morning I was trying to calculate the 'real' time and wondering if the clocks had gone back yet or not?  It wasn't long before my mind started to go over the whole pregnancy and RA situation I seem to find myself in.  I seem to think that I am now medication-free but what I really mean is that I am 'mega hard-core kick RA ass' medication-free.  Yes I have stopped taking the big guns Methotrexate and Enbrel, along with any NSAIDs (Diclofenac, Naproxen) and Meptid but I am still on Prednisone, a steroid.  I have been told by anyone and everyone medical that this is fine to take whilst trying to conceive and also during pregnancy.  I also have a niggle that I would like my baby to be brought into this world without having to have been exposed to any medication whatsoever.

Is this the protective instinct that people talk about?  The hard-wiring in us to do anything to protect our children and to give them the absolute best start in life?  Or has it got more to do specifically with the RA?  The longing that  no one else would have to go through the difficulties that we face day in, day out?  Either way, I want know that I have done absolutely everything I can to provide a good basis to health for my child.  

After talking to my GP about having come off the Methotrexate, she told me about a blood test to check my folate levels which can deplete due to the Methotrexate.  Folic acid is very important in the development of a baby in early pregnancy and there is evidence that taking it can reduce the risk of babies born with spinal cord problems such as Spina Bifida, and also other defects.  I was relieved to be able to have this blood test but am still waiting for the results.  I have been taking 5mg Folic Acid for the last 3 months and for the last couple of weeks I have been taking Pregnacare vitamins in addition to the Folic Acid so my levels should be through the roof!! 

I have been advised that I can continue to take Enbrel up until I know that I am pregnant.  This doesn't sit comfortably with me so I stopped taking it last week.  I won't know the effects of this decision until it's too late I guess...to be honest I am not sure it was doing much for my RA anyway!  

My GP told me that NSAIDs can interfere with conception...I can't quite remember what she said (I blame the RA brain fog!) but I am sure if was something to do with ovulation?  If anyone can correct me please do!    I decided that I would stop taking those too about a month ago....

I have been on (15mg and then) 20mg of Prednisone for a few weeks now and I think that it is finally starting to do some good.  I feel like I can move better and the stiffness isn't so bad.  It is almost like I am in a normal flare up now rather than feeling like I might just die at any given moment.  Oh okay, that's very melodramatic! 

I usually can tell how bad things are in terms of knitting....bear with me on this one!....so I love to knit - on a good day, I can make good progress with my projects, on a flare up day I persevere through the pain and do some, and on a monumentally bad day, knitting doesn't even come onto my radar as I lie under a duvet watching some trash on TV (I recommend Glee and 16 and Pregnant for quality 'I hurt lots' TV viewing!!!)....now for anyone who knows me and my addiction to making things with yarn, they will know just how awful I feel if I am not attached to some knitting needles! For the last few weeks I have been at the duvet stage but today I have got some bonkers craft ideas going around my head which makes me think that finally the Prednisone might be doing it's thing.  I haven't actually picked up any yarn this morning so I'm not quite back to 'normal' yet, but I think things are heading in vaguely the right direction.  

Painkillers are something I recently realised, in horror, were something I wouldn't be able to take during pregnancy.  I felt like I was in a lecture and the person at the front had just said something exceptionally controversial and I had wanted to put up my hand and say 'Er hang on just a minute, you said what??! You can't say that!  How on earth is that ever going to work?'...except sadly I wasn't in a lecture where I could establish some kind of misunderstanding on my part...I had been listening carefully, I had understood: No painkillers apart from the odd paracetamol.  I feel as prepared as you would stepping into a hungry lion's den where he's licking his chops with my only defence being a ball of cotton wool to tickle him into submission... Surely there must be a back-up plan?  There usually is isn't there?! If anyone finds one, please let me in on it! 

Even though all these things are hard.  Hard to mentally prepare for and hard to physically deal with, I know that I will come through this.  What doesn't kill me will only serve to make me stronger.  

(I will say here that I have no medical experience apart from picking up bits and bobs along my own RA journey so please don't take anything I say about medication as the be all and end all!) 

Medication free after 12 years

Since I was diagnosed with RA I have been on and tried a concoction of medication - Sulphasalazine, Methotrexate, Humira, Enbrel, Folic Acid, Prednisolone, Diclofenac,  Naproxen, and a whole variety of things to dull the pain and to help me sleep.  When something didn't work, I tried something else until two years ago when it was clear than my previous combination of Methotrexate and Diclofenac had ceased to do the trick and I was deteriorating fast.  My husband jokes that it coincided with the time we got married.  I was on crutches still on the morning of our wedding but managed to hobble down the aisle in high heels hanging on to my Dad - amazing what a cooked breakfast and adrenaline (plus a very lovely dress!) can do to you!

The last two years have been a bit of a medication nightmare to be honest.  My rheumatologist put me on the highest dose of Methotrexate and signed the papers to put me forward for funding for the Anti TNF drug Humira.  Self-injecting at home once every two weeks soon became the norm but a certain level of disappointment was felt when we realised that it wasn't living up to the 'miracle' drug reputation.  Next I was put on to Enbrel injections which I injected once a week and were much less painful than the Humira injections (or perhaps I was just used to it now!).  I tried Enbrel for a good while only to be told my my rheumatologist at the 'I've stopped the Methotrexate to have a baby' appointment that the Enbrel wasn't doing what it ought to be doing either.  After some really helpful conversations with the Nurse Practitioners along the way I knew that this wasn't the be all and end all.  There is a drug called Rituximab that they are going to hit my RA hard with once I've given birth - I wasn't keen to try it before trying to conceive.

So essentially I have probably done everything in the wrong order and waited until my RA has got to the worst it's ever been, uncontrolled by the medication, come off everything and now paying the price...but the reward in all of this, I hope, will be a healthy baby.  That thought outweighs all agony and feeling chronically very unwell.