Anyone else with RSI or RA TTC?

[Redleela]

I was diagnosed with possible RSI of my hands/wrists in March this year after blood tests for RA, ruling out carpal tunnel etc. Although I now have pain in both ankles too and some of my toes. I am waiting for my first hospital appointment next month.

Despite this my DH and I are TTC for the first time. The main reason being I turn 37 this week and don't want to delay starting a family. Also my pain is chronic so I don't think waiting until this is resolved is an option. My GP knows I am TTC.

I'm on 1g of Naproxen & 3 or 4g of paracetamol a day (or tramadol on bad days). I know that Naproxen can impact TTC (delay ovulation and affect implantation) but I don't think I can function without it.

I could use some company or advice from anyone else in the same boat. Has anyone got experience of TTC while on an NSAID?

PS. I use voice software for the computer if you were wondering.

Looking forward to hearing from you.

Hello Redleela, I was diagnosed with RA this time last year after 9 months of excruciating pain. I have it in my wrists & elbows, some days the pain got so bad I wouldn't be able to brush my hair or do my bra up. I was given a couple of blood tests for RA which both came back negative but have since discovered you can get a negative blood test result even if you have RA. It was a relief to be diagnosed as I was thinking worst things. I have one dd who is 2 and a half. Have since discovered pregnancy can trigger RA which I didn't know before. Women are 3 times more likely than men to get RA and especially between the ages of 30 - 50 (I'm now 38) so am slap bang in the demographic. We have been ttc a 2nd child for 2 years now (for a year of that I had RA undetected so my body wouldn't have coped with a pregnancy anyway). But since I was diagnosed with RA have been on steroids - prednisolene which are safe to conceive with. Initially I was on 20mg a day and am now down to 7.5mg a day. I've changed my diet drastically which has really helped. My rheumatologist is really keen for me to go on DMARDs which you can't conceive on and is a bit unsympathetic as we already have a dd. We've had fertility tests done and have both been given a clean bill of health but due to the RA I feel time is running out. We've got to make an appt with a private fertility clinic now as the NHS won't go any further with us as we already have a dd. I have read about lots of people though who have successfully conceived on steroids. Good luck and let me know how you get on.

Hi, I was diagnosed with mild RA 1 year ago, aged 27. Am now off methotrexate as TTC in next few months (after 6 months being off). I am still on two DMARD which are safe when TTC. Good Luck with it. My rheumatologist told me a lot of RA goes into remission when pregnant.

Dear Summerglory and hhg. Thank you so much for your replies. Sorry its taken me ages to reply. Since I posted my pain has been much worse and I couldn't face/manage lots of activities including logging on to the computer.

I've now been diagnosed with mild undifferentiated inflammatory arthritis with secondary carpal tunnel (I have rheumatoid factor of 30). I had a steroid injection (maximum dose) and am still on my other meds. Unfortunately the steroid hasn't helped at all.

Now I feel I'm between a rock and a hard place - the next atep is a DMARD but I've been told its best avoided when TTC. Also my work expect me to go on a DMARD - I don't know how long they will continue to be patient about my reduced working hours.

Sorry if I sound like I'm having a moan. I'm normally pretty positive about my arthritis.

Summerglory, I sympathise. How are you getting on at the private clinic?

Good luck hhg. Let me know how you get on.

Fingers crossed that we'll have baby news soon!

I have RA but went down the drug free route to TTC. stopped all DMARDs and took ibuprofen only only the days of my cycle when it did not matter (leaves your body in 24 hours). had a general remission in pregnancy but had an infection related flare at about 14 weeks, so was put on steroids. still taking them but otherwise drug free because I am breastfeeding my five-week old girl. happy to chat/answer questions about any arthritis/TCC related stuff. i really needed an arthritis support thread when TTC but it did not exist.

hope you are all well.

Dear CurlyCasper thanks for your reply & support. Congratulations on your new arrival.

I'm seriously considering not taking a DMARD and making some lifestyle changes like leaving my well paid job (eek) for one that pays less but is more 9-5 and arthritis friendly. We've been TTC for 5 months now with OPKs so I'm now going to read a few books on fertility to see if there is anything more I can do.

How did you manage without the DMARDs? Was it a real struggle? Were you able to continue working?

Looking forward to hearing from you.

will reply properly when not holding screaming child - marking place so i don't lose this thread!

Hi Red, sorry for the delay in replying.

I guess my situation is a little different. I was diagnosed with RA in my teens, so have been medicated for about half my life. By the time the decision to TTC came along, my condition was pretty much in hand. yes, pain and stiffness was part of every day life (I can't remember when it wasn't), but I was able to live a "normal" life. when not on maternity leave I work full-time, with some extended hours, keep house, walk the dog etc etc. Of course, I don't have a job that involves physical activity or participate in any sports or other active hobbies, but that's not a problem because the RA came before I made any big decisions about my adult life. I've never had to give anything up, so to speak.

Anyway, when I did come off the drugs, I was prepared for the worst. I was terrified that my body would fail and I would not be able to do my job. But I didn't suffer any more than before! I was amazed. I had three months to clear the drugs from my system, then three months TTC before I got pregnany, and all the while it was almost as if I was still DMARD medicated. The usual amount of disease activity, but nothing that got in my way.

It might just have been a good phase. Some would say it was a result of a positive mental attitude. I'm not sure I could have taken the decision to ditch the drugs if I hadn't been well, in RA terms, at the time.

I cannot advise you. But I do know that, looking back, I did have some level of remission from RA during pregnancy and for some weeks after. It is returning at the moment and I have spent the last week switching my baby to bottles of formula. My milk supply has nearly dried up - which means it's nearly time to go back on the drugs.

You can only do what you think you can cope with. I was fully expecting the worst - but not prepared for it. I had no plan for what I'd do if my arthritis became unbearable. When I did have the infection-related flare in pregnancy, I was a mess. I was signed off work and my boss was very understanding. But I'm not sure how that would have panned out had I been ill longer term and they knew it was because I had made a decision to run that risk. I doubt it would have gone down well.

TTC plans aside - you might find that the change of jobs is better for you anyway, long term? But then, I guess you have to weigh up the money thing - and also maternity leave etc. It might be better to stay somewhere where you have worked for longer.

I can see that you'd really like to have your baby before starting on the DMARDs, so wish you every bit of luck with getting pregnant. (although OPKs are the work of the devil!)
I used fertility friend to check temps and other signs. And had a great deal of support from the BESH thread - a group of women in their 30s, each with a personal TTC struggle (mine was ditching the drugs) and a wonderful black sense of humour that can raise a smile through even biggest floods of tears!

REMEMBER The most important thing is to try not to stress, as this can make your body worse.

I'm not sure there's anything that will help you in there. But if you want to vent, I am here. (not always finding it easy to reply though - both computer and child seem determined to get in my way!)

Hi, I ould suggest that you get some advice from your rheumatologist and rheumatology specialist nurse about TTC. I am going to be TTC when on 2 DMARD's and fingers crossed everything will be ok. I personally think it's important to be pain free and feeling well before TTC, as it will be hard to look after a newborn with sore/stiff/painful joints. RA is such a pest but not the end of the world, I always think :)There are also a lot of helplines/NRAA who can answer questions etc. I would keep asking till you're happy and got a plan in place. Good Luck with everyting :0

hhg has a good point that I forgot to mention - there are some DMARDs you can TTC on. I had been told by previous rheumy that I had to stop them all, and going completely drug-free was mine and my husband's decision rather than a medical one. When I flared I was told by my new rheumy that I could have continued on the hydroxychloroquine (plaquenil) and sulphasalazine. Methotrexate was out (also used for treating ectopics etc - not compatible with baby-making).

Thankfully my new rheumy and his nurse practitioner are really on the ball and have checked every drug meticulously - unfortunately this means I could not breast fed on any. Not even the above, because while they do not cross the placenta, they are toxic in breast milk.

On the NSAIDS front, ibuprofen leaves the system within 24 hours so should not be used when you might conceive/be pregnant. But I took it each month from the start of my period until my fertile window. No point in letting the swelling build up unecessarily.

Yes, do speak to your rheumy - but make sure they take you seriously and don't give generic TTC with arthritis advice. You need personalised support - which I did not have at first.