Fellow mums with Rheumatoid Arthritis, how do you manage?

[Jemster]

Hello, I am new here but am hoping to hear from any mums in a similar position to me.

I have a three and half year old son and shortly after he was born I developed rheumatoid arthritis. At first it was unbearable, the pain and the fact that I was a new mum and I just didn't cope very well. I went to the antenatal groups hoping to make some mum friends but I could hardly hold my baby and they all seemed to be coping so well I just felt I didn't fit in and never went back.

Since I've been on medication it is less painful and mainly affects my wrists and hands. It took me three years to come to terms with the condition and I felt very low for a lot of that time. Going to back to a job that I enjoy really helped me and I am lucky to have a kind and supportive husband. I have spent the last few months trying to find ways to help myself so that I don't let this get me down but I am struggling at times, especially when it flares up and things get hard again.

One thing that I find difficult is that I feel isolated as I don't know any other mums with this. On a down day I can end up feeling resentful towards my husband as he has to do things for me. I just want to be a proper wife and mother and when I can't be it really frustrates me and makes me really upset. I don't want to spoil his life but feel at times I am dragging him down with me.

I would love to hear from any other mums who have RA and how they cope with being a wife and mum. My consultant and GP have both told me that with the good new medications available now, the condition is manageable and for that I am thankful, but they do not seem to have much practical advice for bringing up toddlers and how I can make things a bit easier around the home.

Sorry this is rather long but I felt it was time I asked for some help and advice rather than just wallow!!

Thank you

Hi Sparkie2001
Sorry for the delayed reply, busy weekend.

That is so awful what the nurse said to you, I'm not surprised it put you off doctors! You must have been very upset. I sometimes wonder if some nurses are in the right job, I had a few midwives who were completely insensitive aswell.

Shame your birth didn't go exactly to plan but at least it is a good thing that the RA itself didn't have any impact. I had a 3 day labour with my son and eventually had a ventouse delivery as was too exhausted to push at the end. The first sign I ever had of aching joints was at 20 weeks pregnant when my arms hurt so much I couldn't lift them up. My ankles were painful too. The midwives had no idea what it was, one time I even went to A&E and they did some blood tests but said nothing unusual. It went away again at 30 weeks and it was after I stopped breast feeding when it got progressively worse that I had more blood tests done and they said that's what it was.

When you stopped the methotrexate did you start the sulphasalazine straight away? Did you have bad side effects with this or did it just not help with the pain? I am currently taking hydroxychloroquine (200mg per day) as well as the steroids but I dont' think I would be able to manage on it alone as things are still not great even with the steroids.

You did well to avoid the steroids during your ttc period. I worry a bit about it taking me a while to conceive as the longer it takes the longer I will be on the prednisolone which I have been on since January. Trope also made some suggestions about alternative medications whilst ttc so I think I may contact my doctor again and ask if I can try something else. Would you say that your RA was active at all during your ttc period or did it disappear?

Runnerhasbeen - did you take just steroids during your ttc period and did this keep your symptoms completely at bay? I am concerned that as I still have some pain, although it is not unbearable, this may make it harder for me to conceive. How long did it take you to conceive on the steroids if you don't mind me asking?

Sorry for all the questions I just want to prepare myself for when I contact my rheumatologist in the next week or so as I think I need to review the situation.
I feel a lot more informed now so thanks very much.

Trope - thank you for your mail - I will reply to you shortly.

Hi I've had RA 12 nearly 13yrs (32) and have a 3yo DS , my RA got worse in pregnancy , and I got a lovely moonface from 2yrs of high dose steroids, which thank god has now gone.
I have RA almost everywhere (except jaw & spine) and god sometimes its miserable! currently going through the testing to allow me to start anti-tnf, with Mtx.
It is terribly hard work with kids full stop without having a knackering and painful disease to cope with too. So pat on the back to all of us
Have any of you been on the Arthritis Care chat boards full of lovely supportive arthritis sufferers some with kids some without. They have been a lifeline to me since I discovered them. I post under another name there but they help you not feel alone.
Coping with the everyday is hard, DS is in FT nursery whilst I work, this actually helps as I couldn't keep up with him otherwise. Have a cleaner godsend
Few household gadgets to help but actually most of my really helpful stuff is fir work.
Sorry can't think of more to write, it's been a vvv long day

Jemster - I'm pretty sure I just switched over straight away from the methotrexate to the sulphasalazine but I ended up with swollen glands, a major sore throat and flu like symptoms as soon as I started it so I knocked it on the head rapidly. They weren't entirely sure it was related to the meds as nothing showed up in my bloods but to be honest I wasn't happy to risk it. I think I then just took diclofenac like it was going out of fashion alongside the hydroxychloroquine which kept the pain at bay a little but not fully. Once they highlighted the fertility issues with diclofenac I went on to co-dydramol which I gave up as soon as I conceived.

They did offer me steroids if things got too much but I tried to avoid them due to fears about the side effects. Luckily I wasn't too bad and got used to being achy a lot of the time although in retrospect I think steroids would've helped. I am still super freaked out by the prospect of a moonface though and have to keep telling myself that it's only short term. Fingers crossed the anti-tnfs will help but as usual I'm a bit concerned about their impact on fertility in terms of trying for another baby in a couple of years...

Good luck with your rheumatologist next week :-)

Wonkylegs - How high a dose were you on and how long did it take for the moonface to rock up/disappear? Thanks for the tip about the Arthritis Care boards - they look fab.

Shitmagnet - I don't think I've ever really suffered with fatigue either. I'm pretty much buggered will all my joints apart from neck/hips/spine but have strangely avoided the sleepiness...

I want a cleaner!

Tbh I didn't notice the moonface at the time its only now when I look back at photos I think OMG it was really bad. It came on gradually (DH says it was worst in 3rd trimester) but went down pretty quick once I stopped the steroids (as a temporary side effect it wasn't that bad) I was v.v paranoid about side effects for DS whilst I was pregnant so found out everything I could (sometimes it's really helpful to have a Dr for a DH most of the time is a PITA tho) and it really is quite safe (as drugs go) and it was better than letting the RA rage unchecked!
I was on between 30 & 40mg whilst TTC and through pregnancy and until I stopped BF (physically found it easier than bottles even tho it limited my meds)
I couldn't have done any of it without steroids so to me it was an acceptable risk.
I'd like to have another baby but I need to get back to a point when I'm well enough and can have any hope of juggling baby, toddler and career without killing myself trying - fingers crossed for anti-tnf.
Fatigue is horrendous for me and made worse when I have disturbed sleep from sore joints/toddler - best thing so far is my amazing mattress that DH bought me whilst pregnant (sprung memory foam), it's the only chance I have some nights of getting any sleep.

I could only take steroids, can't absorb sulphasalzine and azathioprine didn't work when I had UC. I had large steroid shots, meant to be every 4 months but effects only lasted about 2 and local shots into affected joints. It didn't keep things at bay, especially fatigue, and I was only ovulating the months when it was under control. I fell pregnant when they brought the shots closer together and I really felt back to normal (although I was warned that I would be back on methotrexate and having a break from TTC within a few months as this wasn't sustainable - so I was really lucky). I was considering an anti-TNF called certolizumab which does not contain an Fc fragment (cannot cross the placenta) but that would have been my own risk and not fully tested. If I had been ovulating, I think I would prefer to endure the arthritis than take an experimental drug but that is easy to say now I'm well.

It helped that I was tracking and testing myself for ovulation (knowing I had a limited time to conceive made me a little obsessive), the doctor confirmed by blood tests to show I wasn't ovulating when I was ill and they then pulled out the stops a bit more. I only had about a year to TTC and they normally only start testing then, so it was good to have all that brought forward.

I have been completely in remission since I have been pregnant though, waking up without fatigue was first pregnancy symptom, so not taking anything now. Unfortunately, I have other health reasons it took me longer to conceive (took 10 months), primarily the surgery I have had for UC, so I am not typical and can't confirm that it was bringing the steroids closer together than worked. I was very careful with my diet and not gaining weight on the steroids and anything else I could stay on top of.

Hi everyone, I'm just marking my place as I am being tested for RA and the first set of results come in tomorrow. I'm really nervous.

Thanks SM. I forgot to ring for my results and now the surgery is closed until tomorrow. Gah. Trying to stay positive, but no positive IYSWIM?