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Just wondering if anyone has this condition and can tell me about their experience, how it affects their day-to-day life, TTC, PG or labour/birth? Also do you have any other autoimmune conditions?
I was diagnosed with Graves Disease and Undifferentiated Connective Tissue Disease in 2004 and my GP now thinks that it's likely the UCTD will develop into RA further down the track. He says I already have 'low-grade' arthritis (it affects my ankles, knees, wrists and hips atm).
I am sorry to hear this. And though my condition is not the same... here is what I do.
I suffer from a bad case of RSI in my knuckles due to the constant beating the get from work.
I find in winter my hands tend to play up quite a fair bit. They get cold very quickly and tend to become stiff aswell.
I just chuck on my snow gloves for about half an hour, otherwise the next day my joints are that stiff.
I was told just to take anti-infammortory to help the circulation on really bad days and I find it does help.
But days like today, when I have been on the ovens my hands become very stiff. Just typing can be painful.
I am sorry again about your diagnosis, and I hope someone can give you the answers you need. (((hugs)))
Hi Angel,
Yep, I have RA. Details are sketchy, partially because of "new bub brain" and also because i can't exactly rember time frames.
When DS#1 was about 4-5 months old i started to get the achy joints etc and after mamy many months of testing was diagnosed with it. As it got more severe i was able to do less and less. Most of my days were spent on the lounge with bubs in my lap. I found it hard to walk, i couldn't open jars, lids, turn on taps and even got to the point DS was too heavy at 6 or 7 months and he was only a small baby. It was also combined with carpel tunnel for a while.
After trying anti imflamitories for a few months we moved onto to a combination of asprin and Salazopyrin i remember by the time DS was about 8 months i was at my wits end. Very emotional and frustrated. Because of my inabilities DS was not sitting or crawling because i could not get on the floor to put him down.
I think all was under conrol for a while from then on. But if i didn't have my meds i knew about it. I think when DS was about 20 months old it got worse and i spent a few days in hospital having steroid treatment (3 doses via drip over the three days). It helped for a few months and then i had to start taking the steroids daily with other meds. I did this for another 6 months or so until DH and i decided to TTC. It took a few months to come off the meds that would be harmful and then we spent 12 months TTC.
My rhuemotologist said the RA can come on from a shock from hormones from a pg. Because it was in my family he said I would have prob ended up with it anyway it just came sooner as a result of the pg. We did have issues TTC and ended up going IVF as they thought the residual effects of the meds may not be helping. Liam is now 4 months old and my joints only annoy me when it is going to rain or is really cold. I see my specialist next month so i am sure he will be pleased. He monitored me closely during pg and at first was worried as to the effects anotherpg would have on the RA. The best time to TTC is when it is dormant and not in a flare up stage. Thankfully i didn't flare up at all during pg. Pg, labout and delivery were all fine. If anything i can actually do some things like squat down now which i haven't been able to do in years!!!
Over time my fingers have fused (calsified ?sp)a bit and i can't make a fist with my hand and haven't since really early on. I don't notice the pain anymore (if there is any) and I am able to do almost everything i could before.
Sorry I hope this makes sence. If you have any Q's let me know. I goota go though cause it tucker time for bubs.
Tamara & Kas, thank you so much for your replies! I hope your joints don't play up too much this winter.
Kas, that's great that the RA hasn't been giving you much trouble lately. Hopefully it stays that way!
Eeeks... I'm not looking forward to the arthritis getting worse, especially with winters being so cold here in Tassie LOL. Hopefully it'll take a while before it gets bad. I really noticed the achey joints last winter but thought it was just a PG and post-natal/hormone thing... I guess maybe it wasn't. In the past few weeks I've been noticing it more in my hips and wrists. On the cold days it's been getting harder to walk for a while after I've been sitting and my wrists hurt when I try to pick up Kynan.
I only just noticed this thread!
I have a serum-negative rheumatoid arthritis - which basically means they know there is an inflammatory process in my body and I have a lot of joint pain, but they can't pin down an exact cause, or give an exact diagnosis.
I can't comment on how it affects caring for children, or whether it is having any effect on my ability to conceive - right now the PCOS is causing more trouble!
As for coping in Winter - damp days are often the worst! It is essential to keep warm, rested and find whatever aids you can to make getting through daily life easier.
Last winter I had to go on prednisone and ended up gaining about 5kg and having terrible times with mood swings from it. This winter, with everything managed so much better I'm off all forms of anti inflammatory drugs, steroidal or otherwise, except for a few days here and there when things get super bad. What I learnt from that - listen to your specialist! Don't try to scrape through on the lowest dose of meds necessary and don't delay seeking help if things get bad.
I'm really very lucky - despite having this for several years now, there is absolutely no joint degeneration or deformity... the only down side is that they just don't know what it is and whether I can expect to have it for the rest of my life or whether it will eventually go away.
BW
Thanks for sharing that, BW. That's fantastic that you haven't had any joint degeneration or anything like that. I hope you are able to get some answers though about the other aspects of your RA. It's hard not knowing where you stand with things like this. BTW, good luck with the TTC!
hi there, I suffer from rheumatoid disorders and I take relafen , ocufen and voltaren for the pain from (edited out link :ReadFAQ: ) , which is a very good online pharmacy. What drugs do you take? You should have some precise information about the drugs you take. I was very reckless at first,wouldnt bother to find out about the details of the medications and would rush to buy them. Rheumatoid is so difficult to cope..at first, I found it easy to take medications and live with it, in the long run, it's a real pain.. I hope you get fine. :rolleyes:
I have just noticed this thread......
As you know Angel, I too have Graves Disease and also suffer from arthritis (haven't been back to Drs to see if it has become RA). My joints swell at times and become really painful. Also at times I find it hard to pick up Declan or move in general.
I have found taking celery seed tablets and fish oil tablets each day, help with lessening the swelling.
Hi Girls,
I'm not sure whether I have RA but I think I definitely have A in some form. It has been steadily worsening since Noddy was born. I was reading a bit about it last night on the internet and it worries me. I'm booking in to the doctor today to have some tests once I get back from Queensland.
I suppose it is better to get a diagnosis first rather than jump into self-treatment. =) Will let you know what I find out.
Thanks for the information everyone.
Mel
Good luck Mel with the testing and hopefully it isn't too serious IYKWIM. Just remenber to take it easy. Enjoy QLD by the way
Funny seeing you here, Kas!
Melbo, good luck with the testing! I feel like I've had practically every single blood test they can think of, and while my arthritis is still unidentified it hasn't had any impact on treating and managing the condition. It was a bit hit and miss at first when we were trying to find the right medications, but even with a full diagnosis I'm told it would have been that way, anyway.
I'm sure Kas would probably tell a fairly similar story - I found the lack of diagnosis quite frustrating initially, and I still have moments when I wonder what the hell is wrong with me, but mostly now that things are under control it doesn't bother me so much. The right treatment is more important than the right diagnosis.
BW
Hi Girls,
Kas and BW, thanks for your replies.
I do have arthritis but it appears to be just the common old osteoarthritis so I'm sort of relieved. The doctor is trialling me on anti-inflammatories which I'm a bit anxious about as I'm not thrilled to be taking them. She has explained however that it is only for the short term to see how I respond. I was in the health food shop today, checking out glucosamine and fish oil. Would be very interested to hear what people think of those.
I've been keeping up the yoga as much as I can with travelling over the holidays. It helps quite a bit in terms of keeping everything moving.
My main concern is being able to lift William and do everything that I want to do so it looks like it is onto a regime of management, management, management!
Thanks again for your replies.
Mel
Mel, it would be well worth trying the glucosamine. It doesn't do anything for rheumatoid arthritis (bugger!), but does work well for osteoarthritis. The fish oil also can't hurt at all, and may just help also. Other than that, I really don't know a lot about osteoarthritis at all.
BW
Be careful with the Glucosamine if you are TTC. Studies done recently are showing that glucosamine can make the embryo think it that the mother is a diabetic and reacts accordingly (Diabetes being an auto-immune disease like arthritis)......Women have been reporting miscarriages. I only found this out while having some blood taken for IVF on Wednesday and the nurse drawng the blood had three miscarriages before they worked out what was wrong...she stopped taking it and is now 16 weeks pregnant.....so just keep that in mind
eek! That's good to know, Mel! I guess we tend to take the herbal type things for granted, but they can be quite powerful.
I'm having a terrible time with my arthritis at the moment. :( Normally wet weather can make me miserable, but the wet weather we were having for the last week or so has cleared and now I'm in pain. I'm hoping it settles very quickly or my rheumy isn't going to be happy!
BW
Hey thanks Mel. I'm very wary of taking any herbal things when trying to conceive (except those I've cleared with the FS first).
I've only just started on the Herron Joint Formula which is combined glucosamine and fish oil and something else. I'm planning on taking it in the short term only to manage this flare up. This is day two now so it might be a few days before it kicks in.
ME too i'm afraid!! since Ryan was 2 weeks old i've had RA brought on by pg hormones first off they thought it was carpal tunnel, I'm probably stupid but i have refused meds cause i really really wanted to BF ryan. Because i couldn't feed my other 2 kids and my dr has said that i would have to stop feeding as the meds are passed through the B/milk.
RA has destroyed me phyiscally and emotionally, i must addmit before falling pg i would spend hours in the shed with my power tools making things. These days i'm too afraid to look at a drop saw, i'm likely to take my hand right off. I'm scared some nights of picking ryan up to feed him.
Dh now goes and gets him and brings him in to our bed cause i find it really hard to walk as soon as i wake up and i would never forgive myself if i dropped him. Panadol is my new best friend even though it doesn't do very much, i want it to just stop so i can enjoy my baby so i can get on the floor with him that i could play chasey and all the other good things but i'm 31 and feeling very trapped in a old crippled body. Thankfully Ryan is weaning himself and i will be able to start taking the meds soon any other suggestions would be helpful though ( sorry for the hijack)
Shaz, I thought I had carpal tunnel too. I think I do have some symptoms like that still so perhaps there is something else going on apart from the arthritis. I know what you mean about being afraid you're going to drop the baby. It's very hard when you struggle even with opening a jar some days.
You mentioned feeling old and I know what you mean by that too ... I thought I was just run down. A lot of this pain and stiffness didn't help when I had PND a couple of months back but at the time, I thought I felt that way because I was depressed. At least now there is some reason for it and I know I'm not imagining it.
You're in a pickle with the meds ... I'm sorry I can't be much help to you there. I'd be upset about the thought of stopping BF too but your own health is also important. It is hard to have to make that kind of choice. You want the best for your baby but you also don't want to end up so incapacitated that you can't enjoy him.
Your DH sounds like a great help. That's a bonus. Hope you can get some relief soon.
Hey ladies,
Me too! Well, it's a possibility.
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.
Hana
Hi,
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?
Rachel
Hi Rachel.
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.
BW
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.
rachel
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!
BW
Hello ladies! I have RA too.
My story is a little different... I first showed signs of RA when I was five weeks pregnant at the age of 30. I had join pain in my shoulder and I thought it was from playing tennis. Then the pain spread over the next couple of months to every joint in my body. The doctors thought it was related to the pregnancy, or that I had Ross River or similar virus so by the time I was properly diagnosed I was in constant pain, bedridden and totally depressed because I didn't know what was wrong with me.
Thankfully I was referred to an excellent rheumy who put me on prednisone and voltaren and that helped while I was pregnant, and I managed to have a natural birth. I breastfed for almost five months but it was really tough. The pain got worse, the mood swings were truly terrifying and I was stressed out so much it was affecting my baby girl and my husband. So I had to put my daughter onto formula and not long afterwards I started taking methotrexate. All the warnings about this drug sound so scary, but I didn't care... I trusted my specialist and I just wanted to be back to normal. That was a year ago and I have been great! Rarely have a flare... except, I stopped taking the MTX about three weeks ago in preparation for TTC baby number two. So my body is now starting to creak and ache and niggle in every joint - even my jaw.
I have to be off the meds for at least two months before we start trying and my aim is NOT to have to go back on steroids. So I'm taking 100mg of diclofenac a day and panadol if I need it.
I would love to have a pregnancy with no RA as my last pregnancy was horrific. My rheumy told me I was one in a million when I was diagnosed while pregnant. I believe it was the hormonal changes associated with falling pregnant that triggered my RA.
I'm very curious to know Kas, what you have been taking to be able to breastfeed safely for so long. It would be a dream to me to be able to breastfeed for at least one year with my next child but I'm so scared the RA or the steroids will make it impossible.
I'm bumping this up the list in the hope that some other mum out there who has RA might want to chat to me!! :pray:
I'll chat! Sorry to read that your symptoms are returning. I hope they are mild and go away when you get pregnant. It's nice to know there are other people out there who know how I feel. I had a flare over the weekend and for a whole day I could barely pick up my 6 month old baby. I couldn't even brush my hair! It's so frustrating.
I have been doing lots of research on the net to see how common this disease is after having kids. I actually found an article saying that high levels of prolactin (the hormone that enables breasfeeding) have been present among patients with RA. I'm going to try and find out more about that. Makes me wonder if the RA might ease when I stop breastfeeding. I have been noticing some articles about antibiotic treatment for RA. Has anyone else heard about this?
I started talking to a guy in a carpark the other day (not something I normally do but my 3 year old was having a mega tantrum and we were comparing tantrum stories while she screamed) and I mentioned the RA, to which he asked if it was post-natal as it was the case with his wife. Her story sounded very similar to mine. I wish there was more information on RA appearing after having a baby!
Sorry if this is rambling. Am getting no sleep with my 6 month old waking 2 hourly every night. Could do with more than 2 hours sleep in a row....
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?
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!!!:doh: Good luck.
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.
BW
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...
BW
BW, it's very common for sufferers of lupus to have negative blood test results. Has your doctor looked into that?
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!
BW
Hi anyone who is reading,
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?:cry:
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.
Thank you so much for your lovely words. I really makes a difference to know that other people have gone through this. I really never thought it would be this hard and I just wish it wasn't happening. You are exactly right about the comments I get from people about Sam getting 7 months of breast milk. But it really isn't a consolation at the moment. I was describing the feeling to my husband as similar to a break up with a boyfriend. The feeling of not being needed is quite torcherous. But I know the feeling will fade and pass with time. Just not nice while it's happening! I fight the urge everyday to feed Sam just thinking that one more time won't hurt, but I know I won't be helping myself or my kids.
Today was a real eye opener for me. It's the first time in 6 months where I felt almost normal. I have been on Prednisone since Wednesday and it has really helped. The pain is still there, but not to the level it has been. I could actually get down on the ground today! Very exciting.
I'm planning on feeding Sam for the last time on Wednesday night before he goes to bed. There will be a lot of tears (Im starting to cry just thinking about it) but I know we will be ok.
Thank you for your support. It helps to talk to people who really understand.
Ah... prednisone! I have a love-hate relationship with it... I do ok when I'm on 10mg per day, but after IVF transfers I need to increase to 20mg per day. I know that 10mg doesn't control my pain fully, but I also know that 20mg makes me really angry and aggressive and just generally not nice to be around, so I limp along in pain just so I can stand to be around myself. We're using the prednisone to provide some relief with the arthritis, but also to control the autoimmune problem that we think is the cause of the arthritis and the reason my body attacks my babies. I don't often admit to my doctors how bad things can be, because then I know there'll be pressure to stop IVF and go to methotrexate, and I'm just not willing to do that yet...
I really can't say that I understand how you are feeling with having to give up breastfeeding, I can only imagine that it's absolutely devestating for you. :hug:
I think it's odd that this evil condition can effect people in so many different ways. It really is quite horrible to experience it, and even worse that it's so hard to predict what will happen for someone with it.
BW
Hi Rachel, that's great that you are feeling better with the prednisone, though I do agree with BW that it's a love/hate relationship! Steroids are really great at getting you moving but crap with the side effects! I had the most revolting mood swings, and a horrible skin crawling feeling on my body, but when you're pregnant and breastfeeding, it's about the only thing you can take that is safe for baby, so you just put up with it.
The scary part is trying to get off steroids - it took me six months!! Your body really gets used to it, so even when I was down to 1mg per day (plus MTX and fenac), that was enough to keep my body going great, and then when I would stop taking that 1mg, the pain would come back... you definitely can't drop it when you are having a flare and you do have to be in the right mindset. I am trying my best to not go back on prednisone for my next pregnancy, although it may become inevitable if I want to breastfeed. We are currently TTC so I'm off the MTX (have been for two months now) and I'm only taking diclofenac (voltaren) for the pain. I'm having good days and bad, but generally there's at least one joint that plays up each day - it's a bit of a lottery every morning as to which one it will be!! Today it's my left wrist, so I really should stop typing!
Best of luck to you ladies - it's so nice to be able to talk about these things with someone who understands. Lots of hugs to you Rachel for Wednesday.