Not sure what to do with changing medication

[Newtorunnin]

Hi,

I appreciate that I can't get any medical advice here but would like others opinions.

I am currently pregnant and likely to have a c-section at the end of March.

I was diagnosed with RA in September and started on Sulfasalzine and Hydroxychloroquine. Unfortunately these don't seem to have worked and at my last Rheumy appointment they suggested moving onto Cimzia.

I agreed at the time but have some serious concerns regarding moving onto it before the baby is born.

I understand that it is safe during pregnancy but also that it can significantly increase the risk of infection esp of sepsis after an operation. For this reason I was told I would need to stop it 4-6 weeks before I was due to have the section.

This would mean stopping at end of Feb at latest and I haven't even started the meds yet. I asked whether it was worth starting a new medication when I would have to stop it a few weeks later and was told yes so agreed to it.

But recently I have started worrying about it. I have a 3 year old already and tbh as unreasonable as it may be the thought of sepsis terrifies me. This is a weird thing for me as I'm normally pretty relaxed about health issues and not someone to panic. I started worrying about what would happen if I ended up needing a section early and the meds weren't out of my system yet.

So I am thinking of asking if I can just start new meds once baby here but also worried that they may be funny about giving me them again as I understand Biologics are expensive. Hoping the fact that I haven't received them yet helps.

Anyone been in a similar position or any ideas what they would do in this situation?

Any advice welcome. Thanks for reading this far!!!

[Hidden]

If it were me I'd be inclined to wait until after baby born...congrats by the way! Seems odd to start it only to stop a few weeks later. These things take a while to work anyway. For such a short space of time my feeling would be that its not worth the risk to you or the tot.

[Hidden]

Hi I understand your worries and they are not unreasonable. If this was me I would wait until the after the baby was born. I doubt you would gain any benefit in the short time you would take it. I would expect that you would need time to heal and you are susceptible to infection after your c section as anybody. The more I think about it and it was me I would wait you have enough to deal with. Good luck with the baby let’s us know how you get on.

[Newtorunnin]

Thank you both for the reply. Makes me feel better that I am making the correct decision.

Just hope it doesn't prevent me from getting a different medication in the future.

[oldtimer]

It seems to me a perfectly reasonable decision not to start until after delivery. I cannot see any reason why the rheumatology team would not accept your decision - it is meant to be a partnership between the patient who is the expert on their own body and the medical team who have the specialist knowledge of the disease.

[AgedCrone]

Have you spoken to your Obstetrician & Midwife about your concerns?

Maybe they have faced this situation before?

A lot of drugs we are given for RA lay us open to all sorts of infection....but we don’t all get them.....so talk to all your doctors ...ask if your rheumy can talk to your midwife/OB.

Deciding whether you do start this drug or not should only be decided after you have had thorough discussions with all of them.

I have no idea how Cimzia works....maybe it gives some RA protection for a time after you stop taking it?

But don’t just not take it without full informed discussions.

We have no medical qualifications....so can only pass on a personal feeling...personally I would want all the clinical information available .......maybe start with your GP?

[Newtorunnin in reply to AgedCrone]

Yes, I spoke to my Obstetrician and Midwife before Christmas but they have never dealt with this previously and had never even heard of Cimzia before.

I left a message for the Rheumatology Nurse yesterday and unfortunately missed their call back. Its just an answering machine so have left another message!

I was meant to be being referred to a Rheumy Consultant which a special interest in pregnancy but this hasn't happened yet and I have today had a phone message about delivering the medication so don't have time to wait for that before giving my final decision.

I asked my GP yesterday but was told to speak to the Rheumatologist!

I agree with the fully informed discussions, I think I am just feeling a bit under pressure to go with it because I agreed when contacted over Christmas but am now concerned.

It doesn't help that these medications sound scary when you look them up! I think in a normal situation I wouldn't be worried so much but adding the pregnancy in has made everything feel riskier.

Thanks very much for taking your time to respond. I wish I didn't have to think about all of this......

[AgedCrone in reply to Newtorunnin]

Yes it really is especially important for you....& you with your time scale

you are under pressure ,& you deserve straight answers not buck passing excuses.

I would pick up the phone right now & get on the phone to Whomever has referred you to a specialist rheumatologist with an interest in RA drugs in pregnancy.......or find out his/her name & call direct.

I might even try the womanly wile of being a bit hysterical.,,but needs must...you are worried & you deserve to get an answer.....wishywashy excuses are not acceptable.

I would also speak to my GP again and say he is your family practitioner responsible for your health and the wellbeing of your unborn baby.....what is he going to do about it? Saying speak to your rheumy, is not a clinically acceptable answer. Ask him to speak to your rheumy,...he can then explain to you Risks...if any....and the pros & cons.

Think about it ......if his Rolls-Royce broke down he wouldn’t expect the mechanic to tell him to go call Rolls-Royce would he?The professional on the spot has to find out the answers for you....that is what a good GP should do,

If he is not the senior partner in the practice ...find out who is & approach him her.

I may sound a bit of a dragon (I am,) but I do find up fronting these people in a determined way....does get results....also an ex nurse .

so I know if you are really determined doctors will get moving..

You need advice...go get it....Good Luck!

[charisma]

Hi Newtorunnin

I think there’s lots of good suggestions and opinions expressed already. I sympathise with the fear factor, scary when you have small children.

Did you tell the drug delivery service (I had Lloyd’s Homecare) that you don’t need the meds yet?

Once you have an agreement with Rheumatology (maybe via callback after your last message), they can inform the drug delivery team. It is a hospital prescription so Rheumatology is in control of that. If the delivery is already arranged, simply refuse it when the delivery person comes to your door. That is what they told me to do eg if sick. Then it is not wasted.

Plus, there’s no reason why you won’t get started on the same drug later. Your reasons for not starting are good. It is just a delay. You’re already approved.

Best of luck with that return call from Rheumatology!

[Newtorunnin]

Thanks to everyone for your advice. Just as an update I spoke to Rheumatology today and they completely understood my concerns.

They have just put it on hold for now until after the baby is born.

Feeling very much like a weight has been lifted.

[AgedCrone in reply to Newtorunnin]

So pleased to hear you have sorted everything.

Do let us know when the Happy Event occurs!🦩🦩🦩