Coming off medication for RA and lupus

[Panda91]

My medication is not improving my pain or symptoms. I use do use cbd vapes and muscle balms which does help a bit. I was thinking about stopping my medication because I don’t want to be on so much medication for years and also I am trying for a baby. Does anyone have any pointers with what can help me manage symptoms without taking medication?

[Ar29980]

Hi Panda91

I think this is an important decision and this forum isn't really the right place for such advice. It very much depends what your symptoms are and what medication you're on. Some medication is totally safe in pregnancy and some isn't. Also bear in mind that the body undergoes a huge strain in pregnancy and that in itself can cause flare ups of your Lupus.

My underlying lupus was not diagnosed until after my 2 pregnancies and I had multiple complications during both of them. I had to have 2 emergency caesareans but we lost our son within 36 hours as he was born at just 29 weeks and I would have died if they hadn't got him out. Only after I was diagnosed with lupus years later did it all fit into place.

Lupus can cause miscarriage and pregnancy complications like pre-eclampsia and HELLP syndrome so i wouldn't advise you to just stop treatment. Its important for the lupus to be super well controlled before you fall pregnant so that your baby can get the best possible start in life. Its not great when they whisk your baby away to be placed in an incubator after delivery.

I would advise you to talk to your doctor and decide on a plan that works for you both. And they will make sure that your pregnancy is managed by the specialist obstetric and maternity team throughout. Hope this was useful - sorry it's a bit long! All the best x

[svfarmer in reply to Ar29980]

Just wanted to say I’m so very sorry you lost your little son xxx

[Ar29980 in reply to svfarmer]

Thank you

[svfarmer]

Hi I’m sorry your meds don’t seem to be working however I wouldn’t just come off of them before checking with your GP/ consultant sorry I can’t be of more help, luckily I had my children before I was diagnosed with lupus but good luck in your journey xx