Spondyloarthritis, Benepali, and pregnancy

[kerryhannah]

Hi All,

I'm 32 and have spondyloarthritis. Have been on Arcoxia for a year and they have been fab. We want to start a family so I came off of them forgetting how bloody awful the pain is and how debilitating spondyloarthritis can be!

Had to go back on the meds but consultant has changed me over to Benepali as it's safe to have when pregnant. This is such a positive for me and this morning I had my first dose of Benepali so the change over has started. We will start trying to conceive again on September once the Benepali has kicked in.

My question is, has anyone been pregnant with spondyloarthritis/ had a baby and willing to share their experience? Am a little worried about complications etc.

Thanks in advance!

[Lizw08]

Hi

I'm in a similar situation to you and unfortunately don't have any answers but am keen to hear of other peoples experiences too.

Im 33 and was diagnosed with RA after my son was born 2 1/2 years ago. I had my symptoms under control for 6 months just on sulpha, hydroxy & prednisolone. But Ive been in a flare up since December, annoyingly coincided with us starting to try for baby no 2. Ive been on all sorts of NSAIDs which work to a varying degree but my symptoms have still been getting worse, not much fun with a very active Toddler and a dog to look after! Ive finally been given the go ahead on benepali, I really hope it works. My consultant and Nhs website both say it's ok to take whilst trying and whilst pregnant but I did note that the pharmaceutical advice is against it. Have you seen much research on it?

I'm glad to know I'm not alone. Good luck for when you start trying in September and I hope benepali works for you!

[kerryhannah in reply to Lizw08]

I think general advice is always to not take anything! Been assured by 2 consultants and told that countless babies have been born with the mother on anti-TNFs.

I have been told it's best to take it throughout and it just means that the baby cannot have any live vaccines for the first 6 months which is only polio so my husband and o decided that was ok if it meant me actually getting through a pregnancy!

The Benepali stings more than I expected but have only had one dose so hopefully that will get better!

It's good to hear that someone else is going through something similar!

Kerry

[Mhairi54 in reply to kerryhannah]

Sorry but don't have any advice on pregnancy whilst on Benepali. Thankfully I had completed my family before I became unwell and needed to start Benepali so didn't have that worry to deal with. I just wanted to wish you all the best for the future. Exciting times! That must be a real worry for you. Benepali has worked really well for me, hopefully it will work for you too.

I've been taking it for 8 months now and the injections do sting. I just scrunch my eyes and grit my teeth and count to 15. By the time I reach 10, the stinging has passed. A small price to pay for the benefits I get from it. Good luck! x

[kerryhannah in reply to Mhairi54]

Thank you! We did start trying and I went without any meds for a while but it was horrendous so am looking forward to the Benepali kicking in and then starting again!

How long did he Benepali start to work please? I have been told to stay on my Arcoxia and slowly come off of it over the next few weeks.

Thanks, Kerry

[Mhairi54 in reply to kerryhannah]

I started to notice the difference after a couple of weeks! I have AS so not sure how that will compare with your experience of the drug. To not be in that level of pain anymore was wonderful! I still have pain to a degree, but it's more like a post exercise achy feeling rather than that relentless stinging burning pain that I used to have. And I'm functional now, which I am very grateful for. But would love to have my old self back..... . I really hope it works its magic for you. x

[Eiram50 in reply to Mhairi54]

I'll echo mhairi's sentiments - wishing you the very, very best with things.

Marie

[Lizw08]

Kerry

How are you getting on? I'm finally due to start benepali this Friday then hoping I can get off the anti inflammatories and other drugs before trying again for another baby.

Hope the benepali is working properly for you now.

x

[kerryhannah in reply to Lizw08]

Hi, I've had 4 doses now and am pretty much off of Arcoxia. Have not had it for 5 days now and I would normally start feeling stiff by now and get my symptoms back so fingers crossed we're still on schedule for next month!

Hopefully you'll get on with it too. I've. It had any site reactions either which I'm pleased about.

I'll keep you updated. When do you think you'll be able to start trying?

Kerry

[Deminem]

Not sure why so many say Bene stings. It shouldn't. Are ya'll leaving it out of the fridge at least half hour before use? I find the belly area couple of inches away from the belly button best. Doesn't hurt at all if you follow the guidelines,

D

[kerryhannah in reply to Deminem]

Yes my nurse said an hour if possible and so I have been doing that. She also said to do it in my legs so I'll continue there for a bit. It's getting a little better but definitely stings/ hurts! Maybe I'm just a coward!

[Deminem]

I leave it out for at least an hour, and they told me legs best too, but it did sting in my leg same as you. Try where I said. Face it the ppl that tell us this stuff have never used the meds so they are just going by the book not experience.

D

[kerryhannah in reply to Deminem]

True! How do you do it technique wise? Pinch fat or just straight in?!

[Deminem]

I was taught to stretch the skin out with my thumb and forefinger, stretch it taught, bish bash bosh done. No pain at all, just when I did in leg, that smarts badly! I do it an inch away from belly button diagonally.

D

[kerryhannah in reply to Deminem]

Thanks for sharing... one more Q... do you alternate sites so do it at different points around the belly button? Oh and another Q... do you sit up straight or slouch?! Random I know but figure they might help when doing it this week! Prob will have to continue in the leg when we do actually get pregnant though!

[Deminem]

Yep alternate each side, and I sit up straight.

Lemme know if it helps.

Good luck

D

[kerryhannah in reply to Deminem]

It was so much better- thank you for the tip! Still a little sore but more of a dull pain rather than sharp and stingy! Will see how it reacts there but will def do it again in the future- thank you! x

[Deminem in reply to kerryhannah]

Ah glad there was some improvement!

As I said I leave mine out for well over an hour, more like 3 or more hours tbh, and it's totally ok to do that as instructions say it can be left out of fridge for up to 2 weeks straight if needed. Not sure if you did this step? I think that makes the extra difference as far as the sting goes. Bcz when I did it once after an hour it stung a tiny bit.

D

[Lizw08]

Hi Kerry

Sorry I haven’t been in touch. How are you getting on?

I’ve been doing well on Benepali and managed to fully come off the prednisolone and NSAIDs. It’s helped my body get back to ovulating again (I’m sure the NSAIDs stopped it even though the Doctors said it wouldn’t make a difference)

Anyway think my body went it to overdrive and I’ve just found out that we’re expecting twins! Very early days though.

My husband is really worried about all the medication I’m still on so have an appointment with the main obstetrician next week to chat it all through.

Hope you are doing well!

[kerryhannah]

Woo hoo that is such fantastic news- congratulations!

We just trying at the moment so nothing yet but pleased to actually be thinking about it again now am just in the injections.

Are you just on Benepali?

K x

[Lizw08 in reply to kerryhannah]

Thanks

No, I’m also taking sulphasalasine and hydroxychloroquine a long with the Benepali. Trying to reduce sulpha first but not having any luck. It’s progress that I’m off the NSAIDs and pred for now.

It’s hard too feel confident about the medication not affecting the pregnancy when I’m getting conflicting advice from the Rhemy and Early pregnancy unit, but hopefully I will get more clarity next week.

I found trying to relax and switch off to all things pregnancy really helped in us actually getting pregnant. Fingers crossed it sticks!

Good luck

x

[kerryhannah in reply to Lizw08]

Good advice (easier said than done!) ha ha! Will keep you updated! I'm lucky I guess that I'm just on Benepali and asthma inhalers medication wise so should be good when it comes to it!

Twins would be so exciting!

K x

[kerryhannah]

Good news... am pregnant! Very early days but happy that we’ve got a positive at least! Hoping for an ok pregnancy! xb