i know i havent been on here in along time but need to get things off my chest tonight to people who can only truely understand what its like suffering Ra.im not having a good pregnancy(well i am in terms of sickness).im in agony in bed with hip pain (which i had before mtx) then had awful upper back pain which is starting to cripple me.lastweek i rang my rheumatoid nurse who was brilliant and referred me for physio later in month.she reckons its trochanteric burstitis(in my hips),which can be helped with ultrasound.
during all that ive been working fulltime as a hairdresser.
now a whole new situation has occured,,, im now having a bad flareup untop of that,the pain is from my shoulders right down to my knees.im like a 90 yr old when ive sat for 5 mins and then have to get up.
ive read so many great things about pregnancy keeping RA in remission,and i feel really sad that im so sore when i should be enjoying this precious time,and also being selfemployed really is taking its toll on me.
my gp prescribed 500mg paracetamol which is equivalent to smarties,but was her that agreed that its all down to Ra.
if anyone can give me any advice thank you.
and hope you are all well
love sarah xxx
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sarahj
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I too flared continuously through my pregnancy (dispite taking sulphasalazine throughout) and know completely where you are coming from.
My first recommendation would be to ask for a steroid injection. I had several if these. My rheumy consultant said there was no problem using these as they are exactly the same steroids that are given to ladies who are expecting twins. In this case they are given to mature the lungs of the babies as they are more likely to be born prematurely. Therefore it also had the advantage of if I had a premature labour my baby had a greater chance of survival.
I don't know if you are taking any dmards but you should discuss this with your team. Hydroxychloroquine is licensed for use during pregnancy (as it is also used to treat malaria). Sulphasalazine is not licensed but has been used by thousands of ladies with no known side effects to the babies.
Try to rest as much as possible but from experience I know this is much easier said than done.
I hope everything continues to go well. Just keep the goal in sight - its worth it in the end.
Becky
Hi - just to confirm that if steroids are advised they would probably be a good idea. I didn't have RA during my 3 pregnancies but I did have the most awful head to toe eczema for my first and scratched throughout. Like you I was told that it usually goes away in pregnancy so was very disappointed to find it actually worsened by miles. It got so bad that I was put on a dermatology ward and encouraged to take steroids. Foolishly, in retrospect, I refused them. But all the scratching and stress of this 9 months meant that he was born early at a low birth weight and is mildly autistic (and covered in eczema!) where the other two were fine big lads (no eczema with them!). So looking back I wish I'd taken the steroids as I think it would have been better for both of us. Hope this helps. Tilda xx
Hi Sarah. Sorry to hear that the RA hasn't 'magically disappeared' during your pregnancy??? (who said it did????!!!). I have recently had 2 children and for both pregnancies, I am afraid the RA was bad. I had a really bad flare 6 weeks after the birth of my first daugter and basically sufferred for a few years whilst I was breastfeeding and having my 2nd daughter. Things didn't get under control for me until I could go on medication again. A few paracetomol just doesn't cut it eh?! The only advise I can give you whilst you are going through this is make sure you look after yourself and get as much help and rest as possible whilst you are going through this bad phase and remember that it does pass. I am now quite active with my 2 daughters and they are definetly worth it (although I won't be doing that again!!!!). Best of luck to you and hope everything turns out OK. Sharon
Firstly, congratulations on the little miracle growing inside you! On first seeing the midwife you should also have been referred to a consultant at the hospital who will see you through the pregnancy due to the RA – I was. If this has not happened then chase it up.
I am very surprised at you GP, it seems to show very little concern just t prescribe such a feeble medication when there are there other, and safe, options. As Becky says, a kenalog injection may well be the way to go.
For my second pregnancy I took non of my RA drugs, my decision even though I was told some of them were safe. You need to get in touch with your RA consultant and get an urgent appointment.
And it will all be worth it. I swear if I did not have my children to keep me going I would have given up a long time ago.
My RA was also bad during pregnancy - I didn't take steroids because I and my specialist thought it better not to, so I soldiered on through - stupid in retrospect as my waters broke early - and what did they do, pumped me full of steroids!!
thank you very much everyone,great to hear all your experiences. ive only spoken to rheumy over the phone and that was before id gotten this bad.i will be in contact with her again now though.she did say if i got really bad i could get a steroid injection but she said that would be a last resort so id be a bit scared to get one but hearing yous recomend it makes me feel better.thanks again and keep well! xxx
My heart goes out to you. Reading it brought back some sad memories as RA started for me in pregnancy, so u heart goes out to you.Were you assigned a consultant at your hospital when you went for 1st scan? I did in my second pregnancy when they knew I had RA and GP had stripped me of all my meds. She was so on the ball, even had a pregnancy plan written out for me at 6 weeks pregnant, that I think if I had needed, she would have offered some great advice and alternative therapies/med etc. You may have to rethink you being on your feet all day! Sit where possible, even on a stool whilst weaving your magic on someones hair, take a light portable one with you if necessary :o) Big gentle hugs to you and a super gentle pat on yr tum for that little bit of magic you are creating inside you xxx
thank you very much tamnwill! no i wasnt assigned a consultant,basicaly i was told when i last seen rheumy he said id be seen again in ayears time because i was off mtx and i wouldnt need to be seen unless i had any problems.but i rang rheumy nurse last week and shes helped me with physio which is more than my gp did for me.
goes to show how different circumstanses can be for every individual,im so glad you got the best treatment you could. i personally feel my gp just thinks its pregnancy trouble.(shes not seen me in last two weeks shel get a shock!) a lovely client of mine donated me a chair which i can relax on and ive a big pillow and hotwater bottle so between appts i can rest.
ive realised now its not about me anymore,i need to think about my son and stop pushing my body.
i see you have lots of animals,my passion is dogs,border collies.i have 3 of them and they are my life.
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