When i was PG with DD i started (around 30wks) to wake up with really stiff knuckles which i put down to water retention (the fingers were always fat when i first woke up and went down after an hour or 2).
After DD was born i lost a lot of weight very fast, which i didn't think much of, but my sore knuckles stayed. Then, when DD was about 3-4 months old i got a goiter (swelling in the neck, caused by an enlarged thyroid gland). It was small at first but by the time DD was 8 months old it was like a large orange so i went to the GP. THey did a thyroid check and the bloods came back showing i had hypothyroidism (Hashimoto's, opposite of Graves). At the time my GP discussed meds but i didn't want to take them as i'd only just stopped BFing and wanted to give my body a chance to recover.
3 months on, my knuckles still hurt when i wake, sometimes so badly that i couldn't open the blinds (couldn't grip the cord). It always wore off after about 20mins though. ANyway, GP called me back for repeat testing, my thyroid was still struggling, but my pituitary gland had stopped prodding it as much and thus my body had a new, very sluggish, metabolic rate. I was feeling the cold a lot, very exhausted all the time, couldn't think straight, and my wrists, hips and knees had started to ache too, though only when i rested.
I started taking levothyroxine on the 4th of April. So far i am feeling much more alert (less fuggy brain) and have more energy, my joint pains have all but gone and my knuckles are less sore and for not as long, though i do still wake to find them red and swollen on occasion.
I run a lot, currently training for a half-marathon, running about 26k a week, and the GP reckoned the regime of supplements i take for this (Cod liver oil 1000mg, EPO 1000mg, Vit E oil 10mg, glucosamine sulphate 1000mg, Well-Woman multivitamin with extra Iron, oh and a Kelp tablet to help my struggling thyroid) has staved off the worst of my symptoms while the running keeps everything supple. I know it's not an option for those already suffering to start exercising, i was just lucky that i was already doing it when my illness came on.
He (GP) couldn't tell me if it was RA or my Hashimotos (which can cause RA symptoms as the slower metabolism fails to replace cartilage at a normal speed) causing the joint pain and he said we'd wait until my thyroxine levels were normal before he did further testing (already looking at 6 more months of blood tests/medication reviews etc.) as that might resolve the issue for me. He said he thought my thyroxine would stabilise when i was on 50-100mcgms per day of levothyrocine, currently i'm on the starting dose, 25mcgms.
I can't believe how common this is though. I've been trying not to think about it. THought of my body disintegrating and even just having to take meds forever makes me feel awful. Sorry for hi-jacking.
Have just registered on BellyBelly so I could see if anyone else had been diagnosed with RA after having a baby. I have been officially diagnosed with RA after having my second baby and feel very alone. My GP thought it was Ross River, rheumatoid levels came back around 80. Have seen a rheumatologist who has put me on anti-inflammatories that are safe during BF.
I am BF Sam (5 months) and want to keep going for as long as possible. The thought of stopping BF to take medication really upsets me. The pain in my hands and feet really upsets me too! I don't know what to do!
I have heard that RA can go away when you stop BF. Has anyone else heard this? Does anyone know if the appearance of RA after pregnancy is common?
I'm afraid that I really don't know the answer to your questions. So far all I've been told is that RA can often go into remission during pregnancy, so my rheumy is keen to have me knocked up ASAP. Unfortunately, it's turning out to not be so easy for us. I haven't really looked into post-pregnancy and breast feeding, as those situations seem so far removed from where we are now with doing IVF and trying to get a pregnancy to stick beyond 8 weeks.
Can I ask what medication you are on?
Good luck with finding the answers to your questions. I certainly can understand your pain - my IVF doctor insisted I stop taking naprosyn, and I toughed it out as long as I could before my rheumy was forced to put be back onto prednisone as I was simply not able to move normally.
I'm taking Mobic, an anti-inflammatory that seems to work. I also take paracetemol when I'm having real trouble with my heels.
I've been told that RA disappears during pregnancy. Apparently the body supresses it's natural tendancy to attack any foreign bodies so that it doesn't attack the embryo. So any auto-immune problems go away for the duration.
I just found out today that my inflammation levels have gone down so I don't have to take SAARDs yet and I can breast feed for a bit longer. Very relieved!
Thanks for your response. Good luck with your IVF. I hope it is successful for you very soon. I'll try and send some good vibes to you.
I tried mobic - gave me really bad migraine headaches.
Unfortunately for me, my immune system needs to be suppressed long enough to get a pregnancy established before the pregnancy can start working on my arthritis. I'll be on high doses of prednisone for quite a while, now.
I'm glad things have settled and you're able to BF longer - great news there!
Hi Rachel, sounds like we are all riding roller coasters - up and down - such is the nature of the beast.
I can truly sympathise about not being able to pick up your baby. I went through the same thing with my daughter and it was particularly worse at night. I also endured five months of no sleep with a baby that woke every hour until I came across The No-Cry Sleep Solution by Elizabeth Pantley - this book saved my life!
There is an excellent RA site (***LINK REMOVED***) that is a good place to go for a chat about RA and also have any questions answered. Most people there are in the US but you'll find the odd Aussie popping up once in a while. There's other information there too about medication, etc.
I am curious to know what meds you are taking that are safe while breastfeeding... I was told I could only take prednisone and fenac. Are you on steroids?
Last edited by Trillian; November 13th, 2007 at 05:52 AM.
: removing links - please read FAQ's
I am taking mobic which isn't a steroid. I would prefer not to be taking it but it's very hard to function without it and my rheumatologist assures me it's safe as he prescribes it for pregnant women too. Would love to know if anyone else has heard differently! I also take paracetamol on bad days. The flare I'm having at the moment is still happening. But I have faith that this will go away and I will be perfectly mobile again. Just wish I didn't have to take drugs to do it.....
We just about have Sam on track with his sleeping. Am getting solids established and then I will get serious if necessary. Hopefully he will get better. Am wondering if I would be in less pain if I was getting more sleep.
Did I read correctly that you took methotrexate (or however it's spelt)? That's the one my specialist wants me to take when I have finished breastfeeding. I hate being under pressure to finish breastfeeding. I had planned to keep going for as long as Sam wanted. But I don't think I can endure another 6 months of this!
Hi Babyjoy, I am sorry i have not replied sooner but i have not been on BB alot lately (mainly just to catch up with baby buddies).
I am not sure if you read my post on page 1, but a brief rundown is - When DS#1 was about 4 months the RA kicked in. Rhuemy said was pg hormone related. I booby fed till he was 9 months. It seems like so long ago now to recall the finer details. I think i was on voltaran to start and then salazopyrin from about 8 months. This was not my reason to stop feeding and i was told it would be fine to continue to BF if we chose to. We had both come to the end of the BF road which was good timing i guess in terms of medication needs. This was ok for a while then about 20 months i needed intense steriod treatment to wack it back into line. After hospital for 3 days i was then on oral steroids. This continued till we wanted to TTC where i knew i would have to come of them. I found it wasn't too bad and my bloods all reflected that the RA was laying low so now was the time. I think the 2nd pg was really good for me and the RA. I had daily clexane injections as a precaution and in case the RA flared up (also had to do with IVF) and thankfully the whole time i would only get twinges in my hands and feet when it would rain or i was extreamly hot. This is the case today also. My Rhuemy gave me the all clear last time i saw him and said my bloods are still abnormal but great for me.I did find though that the few days prior to delivery whilst in hospital on bed rest and without clexane i started to feel the toll on my joints.This stopped pretty much after delivery. I was lucky enough to only take panadol/asprin for minor pain after DS#2 for a month or two and have been non medicated since. Liam and i only finshed feeding a week ago at 21 months to the day and although my finger joints cartlidge has fused in most joints i feel great except when it rains, i just need to make sure i don't overdo it and listen to my body.
I guess in answer to your question i fed DS#2 as i was on no meds at all and in your case it would depend on the severity of the RA and which meds you would be on as to if you could breast feed. The steroids like plaquenel and prednisone would be a big no from what i was told but a friend with a different condition and i both took salazopyrin and was told it was safe. Hopefully a pg will scare of the RA and you will have a turnaround as i did with the 2nd pg. Thre is alot to be said for hormones hey!!! Good luck.
Last edited by kas; November 25th, 2007 at 11:54 AM.
Hi Rachel and Kas,
Thanks for your replies.
I was told prednisone was safe during pregnancy and breastfeeding, so that was my main medication along with voltaran (diclofenac). The steroids gave me rather horrible side effects which was my main reason for quitting breastfeeding and changing medication. My rheumy said there wasn't ANY other meds that he would recommend while breastfeeding a baby. But it sounds like there is from hearing your stories. It took me about six months to wean off the prednisone, so I hope I never have to take it again. Methotrexate, however, worked wonders on my joint pain and I felt completely normal again for the past year and had no side effects at all. My rheumy said the MTX has completely stopped the RA in its tracks as my blood tests went as low as someone without RA.
Now that I'm off that and we'll be TTC my joint pain comes and goes but I think I'm coping with it quite well and the voltaren and regular paracetamol is keeping the pain at a manageable level.
I hope you are right Kas about a change in RA with my second pregnancy! I actually think that because it was such a shock to my system when I was diagnosed and I was dealing with being a mum for the first time, that I didn't manage my RA very well. I didn't know what sort of things would set it off (change in weather, stress, etc) and so I would have huge flare-ups all the time. I definitely think things will go better this time because I'm prepared for it, and I'm definitely going to ask about different medication other than steroids so I can breastfeed longer.
I really appreciate you telling me your stories... it's a comfort to know I'm not the only one.
Thanks!
Babyjoy, while TTC I do know that salazopyrin is safe. My rheumy thinks it's not as good as methotrexate, but we're persevering with it and prednisone while we're TTC. Two years and counting now, which is unfortunate. I'm not sure about the safety of salazopyrin while breast feeding - haven't got there yet! My rheumy just wants me to get pregnant ASAP so we can stop messing about with the not terribly effective drugs and really hit the arthritis. However, I'm an odd case and my RA is serum-negative. I keep telling my rheumy that me and the IVF doc are working on it... I did find that when I got to around 8 weeks, everything was great, just we lost that bub shortly afterwards.
I'm sorry to read you lost two babies. It must be so terribly heart-breaking. But don't give up... I'm sure there's a little miracle for you just waiting to happen. Your journal is truly inspiring and I really admire your courage.
Yes, MTX is excellent at stopping the RA, but highly dangerous for baby when TTC, while pregnant, or if breastfeeding. It has actually been used as a drug to bring on a miscarriage (abortion) and can severely deform unborn babies. Scary stuff!
Excuse my ignorance, but what do you mean by serum-negative?
It basically means that the doctors are completely stumped at putting a name to what I have. My blood tests show no rheumatoid factors, just indicators that there is an inflammatory process taking place in my body. So I have joint pains and swelling with no easily discernible cause, but no joint deformities and no permanent joint damage occuring.
I think the name they put to it is serum-negative rheumatoid polyarthritis, or something like that. It's med-speak for I hurt, and nobody knows exactly why or what I've got.
For now, we continue to take it all one step at a time...
Yep, all lupus markers (ANA antibodies, from memory?) are clear. They haven't bothered re-checking things for the last two years - my rheumy has decided I'm enough of a pin-cushion with all the IVF tests and we seem to have everything under control for now.
Happy to accept all ideas though... one day there may just be something me and the rhuemy haven't thought of!
I just had to get my thoughts down. I’ve recently had a flare with my RA and have made the decision to start taking medication. Which means I must stop breastfeeding my beautiful 7 month old boy. I have now been weaning him for a week and every day rips my heart out. I am down to one feed in the middle of the night but will have to stop that on Wednesday when I take my first dose of methotrexate. I have been telling anyone who will listen how much I don’t want to wean. But it’s not making it any easier. I’m sitting here writing this with tears streaming down my face. I never thought it would be this hard.
The only consolation is that maybe in a few weeks I will have reduced pain and be able to actually get down on the floor to play with my boy and my 3 year old girl. But the urge to feed him will still be there.
I can’t believe this is happening to me. It never occurred to me when I was pregnant that I would feed my baby any other way. Has anyone else gone through this?
Hi Everyone, I stumbled across this forum when goggling RA. I aqm 35 have 3 children 8 5 3. I have started seeing a spec regarding my sore wrists. It all started about 3 years ago when one knuckle on my left hand was a bit sore. It never bothered me just played up now and again.
Now for the last year or 2 I have had sore wrists. Went to doc in Jan and wss told I had a positive Rheumatoid Factor. Off to see the specialist I went. One the first visit he was not too worried basically said we would repeat test in 3 months and to come back then.
I saw him for second time this week. My sysmptoms are basically the same, sore wrists, one owrse then other. Mainly feel it when I pick up heavy things. Never had any evident swelling. My hands feel stiffish sometimes at night or if I have been using them alot. In the morning I think they are best.
I notice they (my hands) go red when holding things like mopping or sweeping or even sometimes when driving. In summer they itched a little.
On the second visit he suggested I go for a MRI with a dye to be injected. This will give him more clues. He doesn't know if this is the start of RA or not. He said one blood tests suggests it the others don't. If it is the start he would like me to start medication, which scares the hell out of me.
I have PCO too so I am already at risk of getting diabeties and also heart problems. What do I do? Do I get a second opinion. He said if I start med now it would only be for a year or 2 and we would stop it now. Or of we wait it would mean med for a life time.
This is all depending on what the MRI shows.
If anyone has any thoughts that would be great as I am really worried and scared.
I have both PCOS and the weird RA thingy... I'm fairly sure that the RA medications aren't going to impact on the PCOS in any way, unless you can't avoid prednisone. Prednisone is a steroid that does impact on blood sugar levels - it has created some problems with my PCOS, but we are able to work around that with a strict low-carb, low-GI, high protein diet.
If you are not actively TTC you have many more options in terms of arthritis treatment than I do. I hope you find relief soon.
Oh Rachel, I feel your pain and distress - it's truly is heart-breaking no matter what anyone else tells you. Reading your post brought tears to my eyes, because I went through exactly the same situation with my daughter but when she was four months old. I felt so much guilt and so much anger at having bloody RA and not being able to do the things I wanted to as a mother. Everyone will say to you "Well, at least you had seven months of breastfeeding" and "thats more than some mothers get" etc, etc, but I still felt sad about it for a long time because I felt like a failure. My daughter is almost two, and is thriving, but I'm really envious when I see other mothers breastfeeding. I will definitely be doing things differently next time we have a baby - trying my damn hardest to keep RA in its place by not stressing out so much! Stress was a big factor in me stopping BF as well as the side effects from the steroids I was taking.
I know it's really hard for you now, and hard to accept, but your little boy will be fine. In fact, he won't even remember it! Be prepared for changes that may happen (change in sleep routines, etc) as it was very stressful for my daughter switching to a bottle - she refused it so we had to wean her within 24 hours (tough love). But it sounds like you have weaned your son slowly, so the transition will go fine and he won't even know. I do recommend having your last feed in a quiet, happy place, where you can just enjoy being with him. My last feed with my daughter was at 2am in a very sleepy state in bed, and I barely remember it... I wished I had fed her one more time and really appreciated that special four months we had together.
Once you are on MTX you will be amazed at the difference - you just feel like a new woman! It's been a life saver for me and that also means you'll be able to do lots of fun stuff with your children without pain... which is what this is all about - if your pain is gone, you can be the best mum ever!!
Lots of hugs to you and bub, and if you want to talk more about it, just PM me as I'm happy to help.
Sorry for hi-jacking.
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RA after pregnancy
Good luck.
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