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.

Thursday 6 September 2012

Another great REASSURANCE from the NHS

Today I had my rheumatology appointment.

I had been thrilled at my last appointment to be told i wouldnt need to be seen again until after the baby had been born; which was fine by me as I had been managing well. It was sad however as Dr C said it was the last time i'd be seeing him as he had a job elsewhere. He had been looking after me since my arthritis was first suspected. Unfortunately, a week after this appointment my arthritis started flaring - the main problem being in my hips and not being able to put weight on them but also swelling and pain in my lower limbs and hands. I wasn't expecting an easy pregnancy but I was hoping i'd be one of the lucky ones whose arthritis would go into remission for this time. Still i'm plodding on. Its been six weeks since the flare started and things have become much easier again, however joints keep playing up intermittently and are quite stiff. Just trying to keep mobile.

So back to the appointment today, I have been stewing over it the last couple of days; as i was a bit nervous about seeing my new consultant for the first time as well as it being the chance to ask some important questions about certain aspects to consider, now, at the birth and after. After sitting in traffic longer than I expected I reached my appointment with a minute to spare, and my pregnant bladder desperate to be emptied. I dont know why I was expecting to be seen on time.

I was called in by Dr S, not in the usual fashion 'Mrs Grant' or 'Charlotte' or 'Charlotte Grant' but instead 'Grant, Charlotte' which I didnt really appreciate and to be honest wasnt a good starting point. Next I see the Dr pick up my records at the same time I am entering his room. So he has no clue about me, OK. So when he asked me how I was doing I thought I'd help him out a bit by responding 'Dr C didnt want to see until after having my baby as I was managing well when I saw him but a week later I started flaring.' Nope, obviously this was not enough as I was next asked 'How olds the baby?' ARGHHH!! NO, I'm 20 weeks pregnant, obviously he just thought I was a fat cow. So I correct him and explain the flare and where I have been experiencing symptoms. Obviously, sods law I was having one of my better days today so hard for him to see. He carried out an examination and at least could see the pain my left hip is causing me. He therefore decided to refer me to a physio, which I am happy with, as obviously drugs carry too many risks in pregnancy so anything else I can do to help is a bonus.

I had the questions I had pre-prepared as I wasnt expecting another visit between now and after the birth. So I start by trying to find out with him if the inflammation in my back will pose any problems or complications if an epidural or spinal block was needed in labour or in the event of a caesarean. He agreed this was a very valid question but couldnt understand why i'd have inflammation in my back. I explained that I suffer with pain in my back, especially the lower back and coccyx. He told me this was to be expected in pregnancy at which point I had to correct him saying my arthritis has always affected my back. He therefore checked a lumbar xray from 2010 and confirmed it should be fine. I was looking for more of a confident answer bearing in mind the situation of inflammation could very well have changed since 2010.

Next I went on to explain that I would like to go back on medication as soon as possible after the birth and therefore wanted to discuss this so it could be ready to start. I mentioned I didnt want to go back onto Methotrexate. No question was asked as to why, and I was shocked by the next thing which came out of his mouth. 'Well there's Leflunomide.' If you are a regular reader you may remember that this was the drug I was initially told I had to be off for a year before trying to conceive but when it came to it they had changed this and said 2 years, so I had to go through a wash out procedure and then wait ages for special blood tests to confirm it was out of my system. At this time I was told (and it was coroborated with information I was able to find on the internet) that this drug is no longer given to women of child bearing age. Not only am I definitely of child bearing age but the Dr didnt even establish if I was likely to have any more children. I told him I wouldnt be going back onto that either but it scared me that this was suggested so easily and makes me wonder how many other women which may want children are still having this prescribed to them. I think I will discuss my medication at my next appointment as I will be seen again in 2 months.

The last question was advice on whether i should let the obstetric consultant know about my recent flare up, as I saw her also when I was managing well and on that basis she had said she wouldnt need to see me again until 34 weeks. Dr S, said he see's no reason as its just 'a mild flare up'. Yes mild now! Not 6 weeks ago. I think I will ask this question at my 20 weeks scan next week instead.

So i'm given my follow up appointment sheet to take to reception and notice he had written my name as 'Charles Grant', so not only am I fat, not of child bearing age, but I am obviously also a MAN! At reception I had to ask if this was my new consultant as in all honesty I had expected a woman from what I had been told previously. The receptionist said that it was a locum I had just seen covering until my new consultant starts in November. I couldn't help but to respond 'Thank God.' If it had of been my new consultant, I would have been insisting on a change in consultant. My appointment in 2 months should be with my new consultant too so hopefully will find this more beneficial. I made sure to point out to the receptionist the error with my name, I wasnt going to let that go by unnoticed! So now I await my physio appointment to come through.

Not an over impressive day and a bit disheartening as I was expecting to come away with some answers. Now it will just be a waiting game until I can ask these questions to someone which can help and with any luck may be familiar with my notes first.

1 comment:

  1. Hi Charlotte,

    Good luck with this new blog - it's great to have a platform to share your thoughts and feelings about this condition which is not usually well understood - You might be interested to collaborate in the research I am conducting for Arthritis Care - Here's a link to my blog explain it - do get in touch if you're interested to share your thoughts:

    http://toweb.tumblr.com/mydoctoralresearch

    Take care

    T.O

    ReplyDelete