Advice on treatment and potential pregnancy?

[cshah]

Hello friends...

Wondering if anyone out there with anti-ccp positive lab results is getting any real relief from this awful disease?

I’m anti-ccp+ and I know that disease course tends to be more severe with that lab result.

I was on plaquenil for about 4 months and Experienced no relief. My rheumy switched me to sulfasalazine about 2 months ago. I feel like things are getting worse if anything. Joint pain, body aches, malaise/nausea on a near-constant basis. I have better days and worse days but I haven’t actually felt good in a long time.

For the time being I’m staying away from biologics and mtx as I was hoping to get pregnant at some point soon. I’m considering putting the pregnancy attempts on hold to try other treatment options. I’m starting to wonder whether that’s the right path for me anyway... I’m afraid I won’t have the energy to care for a child. I also can’t help but think that any child I have will be at risk of developing the same disease. I would not want to bring someone into this world just to make them suffer.

I’m curious to hear about the effectiveness of different treatments for accp patients and insights into how people cope with managing this disease and parenting.

Any responses will be greatly appreciated.

Carolyn

[Hidden]

Hi Carolyn

So sorry you ve got this when trying for baby, awful for you. My kids in 20s and worries me too however would just say no one else in my family has it & i'm pretty good on family history so going back a while too, it's not purely hereditary. I'm accp positive too, dx 5 months ago, felt awful first 3 but joints have definitely improved, drug side effects ... slightly, fatigue getting there. I'd always ring advice line if side effects too much, they can alter things for you, i left too long. Really good luck with treatment etc

Keren

[Tinkerbell5]

Hi I’ve I’m ccp positive I have 3 children I find it hard doing things with them due to this illness but I’ve had a really good pain free week wish u the best of luck x

[cshah in reply to Tinkerbell5]

I can imagine it must be hard. I hope your pain free week continues.

[helixhelix]

I'm CCP-positive and have been in remission for the last 5 years..... the first couple of years were rough, but it's fine now. Generally with all the new treatments there are now the received wisdom that anti-CCP disease is worse isn't necessarily the case any more.

As for your future children, please don't think like that. First off, it's a very weak hereditary link. What seems to be more important is that people can have the genetics to have RA but it also needs to be triggered by something - stress, smoking, other environmental factors. It can also appear spontaneously. And personally I'm happy to be here, so happy that my parents never considered not having me because of some possible future problem. And I'm sure your children will be happy to have you as their mum even if you can't do as much as other mums.

Secondly, who knows in 10 years time there might be a cure for it!

Perhaps one approach would be to get pregnant as soon as you can - pregnant women often go into remission for the whole of their pregnancy....

[cshah in reply to helixhelix]

Helixhelix all great points. Thank you. I did smoke - and no one else in my immediate family has it. So yeah, I really shouldn’t think that way.

[EmsMac]

Hiya. So awful you are having a horrible time of it. I did not have RA prior to becoming pregnant with my first child. My GP suggested that a rough pregnancy could have triggered it. My symptoms come on about 4-5 weeks after giving birth. I was on sulfazalazine when first diagnosed but I felt sick constantly. I’ve been on methotrexate for about a year now and have been ok but on a low dose so still having the odd flare up. I’m due to see my consultant end of jan as we hope to try for a second baby this year and need to discuss treatment options as I will need to stop my current meds b4 trying to get pregnant. My rhmy told me a pregnancy will likely naturally reduce symptoms during the pregnancy.

As for having a baby with this disease my experiences were pretty poor but I think this was due to being diagnosed when my little girl was so little and having no family support near. My husband and I just dealt with it but having to go to hospital for scans, bloods etc with a newborn, different meds, having to stop breastfeeding (I could go on) was pretty tough. You do get through it but I don’t think people realise the added pressures of looking after a baby with this illness. I guess if u already have the diagnosis a lot of this stuff isn’t necessary but I do worry how it will effect me the next time around but it hasn’t put me off wanting another baby so it can’t be all bad!

[cshah in reply to EmsMac]

Thanks Ems. I think in the back of my mind I know that even if it’s hard it’ll be worth it. But if it’s hard being a new mom I’m guessing it’s doubly hard for people like us.

I’ve heard it’s best to stop mtx 6 mos. to a year before getting pregnant. Since I plan to get pregnant I was limited to plaquenil and sulfasalazine. There might be some biologics options that are safe for the first trimester, though. Not really sure.

Best of luck with the next pregnancy and everything else!

[Kai--]

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Kindly see 👁👁 Anti-CCP Positive ➕ , cshah/ Carolyn:

👁➕ healthunlocked.com/nras/pos...

👁➕ healthunlocked.com/nras/pos...

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Kindly consider 🤔 for effectiveness of treatments (& pregnancy/ parenting):

🤱 Monica Aggarwal: healthunlocked.com/nras/pos...

🤱 Jenn: healthunlocked.com/cure-art... (scroll downward on page to ‘Meet Jenn’ video)

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Jury’s 👩‍⚖️ still out on decision to have 🤰offspring 👶 👼 — its wisdom, practicality, personal/ spiritual ‘fulfilment’, legacy, etc.. All legitimate concerns & profound implications you’d thoughtfully noted. 🤔 😳

🎶 📹 : Pendulum swings between "Don’t Worry, Be Happy" ( vimeo.com/35208015 ) to "Virtual Insanity" ( vimeo.com/58139812 ).

Only you & your beloved 💑 can decide ‘what makes sense for you’ weighed in balance ⚖️ with your desire, passion, drive, need to have children 👫. 😌

Wishing you the very best, Carolyn, whatever paths you choose to pursue. 🙏 🍀 🌺 🌞

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