Behcets, Pregnancy and Fatigue

[MrsR_75]

Hi all, was diagnosed with Behcets earlier this year, after becoming pregnant with my 2nd child. I've been lucky and been to the London Combined Clinic and they were great but there's little they can give me until baby born. Am 26 weeks. Pre-pregnancy my symptoms were mild. Much worse now. Fatigue and head pain overwhelming. Was wondering if this will get better post birth? Also bit worried about transient neonatal BD and intrauterine growth problems. Any thoughts? Thanks!

[devonshiredumpling]

Hi Mrs R

Firstly congrats on your pregnancy. BD is bad enough unpregnant but with a little one on board it must be overwhelming.

The most important thing to say is that this forum is not medical, we are all BD sufferers or carers of BD sufferers and the main remit is to support one another through a little-known and poorly-understood disease. However...

In a previous life I worked as a senior midwife so I can 'talk you through' your concerns. What I can't do is give medical advice - for that you need to speak to your obstetrician. As a person with BD you should be on the high risk list anyway and should be able to get an appointment quite easily via your community midwife or antenatal reception.

Okay! The first thing I would say is that second pregnancies are invariably characterised by more fatigue than first pregnancies. It stands to reason really - gone are the days of quick naps and feet-putting-up! Now you have somebody else to consider apart from yourself and being a mum to a young child is exhausting at the best of times.

The second point is that headaches can sometimes be what is known as one of the 'minor disorders of pregnancy.' Although these tend to be experienced earlier in pregnancy because they are thought to be due to the changes in your circulation and the increase in blood volume necessary to support your unborn baby.

I'm not minimising your concerns and saying they are caused specifically by the pregnancy, but these facts have to be taken into consideration. You need to ensure that any pain relief you are taking for the headaches is okay for use in pregnancy. Neurofen/ibuprofen for instance, should not be taken in the third trimester - so from 28 weeks onwards.

As to your other concerns - IUGR and passage of BD to the baby before and during delivery - these fall squarely in the realm of the obstetrician. I suspect there is no concrete answer but they will be able to guide you.

I hope that helps a bit.

[MrsR_75 in reply to devonshiredumpling]

Hi there

Thanks for your helpful comments. My obstetrician has arranged growth scans every 4 weeks from 28 weeks. I'll see my midwife each fortnight in between. I will raise the IUGR and transient neonatal BD again at my next appointment. My only concern is that they proposed daily Heparin injections. At the time I had to see my cardiologist due to chest and lung problems, so they delayed the Heparin. He couldn't see the need (as my chest X-ray and ECG showed no clots). My immunologist at Barts has asked for more info from them before giving me the go ahead.

BD is still very new to me, so there may indeed be a good reason.

I see the neurologist this week re the headaches. Doubtful she can give me anything whilst pregnant, but we shall see!!

Thanks again

[supernova]

Dear Mrs R.,

Wow! 26 weeks!! Congrats.

My twin baby girls just turned two years old this month. They are healthy, thriving and fantastic...such sweet babes!

I have a few tidbits of advice to offer:

1) Be gentle with yourself! You have made it to 26 weeks and this is quite an accomplishment.

2) Find medical practitioners that will be anxious FOR you...thus allowing yourself to let go and trust their knowledge and judgement. It IS possible to just let go of worrying.

3) Plan ahead. Be honest and realistic about your needs and try to arrange/anticipate how much support you will need around the time of birth and postpartum. Slowly have everything ready to go...meals, childcare, doctors appointment assistance.

4) There are many medications for a variety of health conditions that have been deemed safe to use during pregnancy. You MUST take care of yourself throughout the pregnancy and postpartum.

5) Rest, rest, rest. Hydrate, hydrate, hydrate.

6) Life is unbelievably resilient to all the things that come our way. We are living proof

7) Be gentle with yourself. Oh! did I already suggest that??

If you ever need to chat...I would be more than happy to share my pregnancy and postpartum experience.

Take care!