Flaring, BF mom of 4-month old

[Barb1974]

I'm so glad to have found this site -- I had no idea so many others who are younger have this condition!
So, here I go...Help!! I have had RA since 1989 at the young age of 14 years old    I'm lucky in that the past several years I've had two bouts of 2-year "remissions" with NO symptoms and needing no meds during those times....sadly, I've had recent bad flares with my knees (it's always the knees) and have had both drained once, 3 weeks ago and my left one drained an additional 2 more times in the past 2 weeks.  They finally felt really good yesterday and now today they are BOTH bad again, filling up with fluid.  I'm currently not on any meds, as I was in 'remission' during my entire pregnancy. When I did need meds, I was taking methotrexate (for the last 10 yrs during active RA). Never tried any injectables (i.e Enbrel), as metho always worked and they were really new when I went into my last 'remission'.
To boot, my poor little girl is having terrible tummy pains and vomiting after nursing during the day and so far the ped is saying try changing my diet, or it could be her diagnosed reflux getting worse...no real answers  Think we'll be asking for a referral to a ped GI at her 4-mo checkup tomorrow since this has been going on for 3 weeks now!!
Anyway, the reason I mention that too, is I don't know if I should really consider weaning her off BF'ing so I can go on RA meds again, and also would take care of the vomit issue IF it is something I'm eating ... or if I should stick it out and see what meds I can go on while trying to figure out if my breast milk is what's causing her vomit/discomfort?
I want to provide the best for our little girl, but since I don't know yet if it's my milk that's irritating her system, and she and I really both enjoy the closeness of nursing, AND it is the best thing (antibodies, etc) for her, I just don't know what to do!!?  I NEED to do something about my flaring cuz my knees continue to fill up with fluid which of course makes it difficult to move, which makes it difficult to tend to her. I can't just keep waiting til my knees fill up, I become immobile for several days while waiting for an appt, and then taking 4 or 5 days for my knees to really recover (then they just fill back up again in another couple days).
I'm so frustrated and upset that I can't do my best for my baby and I'm simply at wits end. I only want the best for her but need to weigh my options on RA meds and BF'ing.
I just got a new RA since we moved to another state and I'm going to call him to see if he'll call in an Rx for prednisone, or a medrol dose pack so that I can get relief temporarily and hopefully without having to get my knees drained for the 4th time in 3 weeks!!  
This way I can at least buy some time on those meds while we hopefully get some answers on her digestive issue to see if it really is my milk that's causing problems...then I can perhaps have better information to make a more educated decision on possible weaning...I'm just not ready to do it!!  
Any advice or ideas for me?  I'm so torn and feel isolated in dealing with this.

[cavansmom]

Hi Barb!

Wow, what a struggle!  You know, my son (will be 4 in November) also had diagnosed reflux.  Of course, it didn't get diganosed until asthma, induced by reflux, was suspected.  As a baby though, he had a lot of weirdness with feeding.  On random days, it just seemed like his belly wouldn't empty.  He would nurse, and we would try to keep him up for a while and not put him to bed for at least 1- 1 1/2 hours, but sometimes his belly was still very bulgy even after that time, and he'd be so tired.  We'd put him to bed and within 30 minutes, he would vomit everything he ate.  Within 24 hours of these vomiting issues, he would usually start wheezing.  It took us a while to realize that pattern, unfortunately.

I was on Enbrel and prednisone with lots of over-the-counter stuff mixed in.  The docs said that everything was safe (except they couldn't be certain about the Enbrel).  At 4 1/2 months, I weaned him onto formula, mostly as my RA had gotten so bad, and I felt nursing was contributing to my flare.  I hated having to do it, but I was getting pretty desperate in terms of my RA.  I couldn't take care of myself, let alone him.  Also, 2-3 days after I started the prednisone, he stopped pooping.  It was quite strange.  After a couple of days with no bowel movement, he was screaming his head off, so I took him to the doctor.  They didn't seem to think much of it.  They put a lubricated qtip up his bottom, kind of "pried him open" and let's just say the problem was solved quickly.  The pooping issue continued off and on until he was weaned onto formula.

Currently, medical research is failing us in terms of what causes the postpartum flare.  There is some newer research suggesting that it has something to do with prolactin (makes your milk come in).  Apparently, it isn't just with RA, but is with all autoimmune diseases.  Of course, this is speculative at this point, and more research is needed.  Either way, it is only within the last few months that my flare has come under control, and in that time, my milk has finally dried up.  Yes, I continued to have milk for more than 3 years after I weaned my son.

Anyway, I worried horribly about weaning my son, and that we would lose that closeness.  It was a little different and probably harder for me to get used to than him, but I don't think it changed our relationship at all.

Of course, I'm not a medical doctor and can't give medical advice, but you see where I'm going.  Talk to your doctors (both yours and baby's) to see waht they think.  It's awful and it sucks what we go through, but it might be worth it to get back on some meds.  Maybe you'll go back into remission.  Keep in mind that your baby needs a healthy mommy too.

By the way, my son has nearly outgrown his reflux.  He only takes meds now when he is sick with a hard cough.

Please write back.  I would really like to hear how you are doing.  Be well!

Lori (CavansMom)
MomsWithRA.org

[Barb1974]

Hi Lori

Thanks for responding - I was beginning to wonder if I was the only one looking on this site these days.
Well, good news is that Emma has had significant improvement of her tummy issues the past two days with very little vomiting!   
This perhaps does mean then that she has a lactose intolerance since the only main difference I've made this past week is taking in very, very little dairy -we're talking 1 half glass of lactose-free milk and two different days of having cheese slices on my subway tuna sub.  I guess I'm left to then assume my previous large milk intake is what was affecting her.  Too bad for me since I love my milk and cheese, but I'll do whatever it takes to keep her well!

As far as my knees - went to the rheumy since he would not just call in an Rx for me as I know I needed...at the visit discussed the medrol dose pack and prednisone and although I drove all the way there, with having to bring Emma with me, he said he didn't feel the need to aspirate my knee. Now let me tell you, it was SO filled up, it was Hard cuz the skin was so stretched with it being so full. We went in circles on this and he said the dose pack would take care of it - I should have insisted so that I'd get the instant relief, but I did not. And, day three of the dose pack my knee is only 1/2 way down, so still rather unstable and can't bend all the way. I called his nurse today to tell her after 3 days of the steroid dose pack my knee is still this big, I am going to NEED the prednisone cuz this will just come back after I finish the dose pack in another 2 days.  Well thank goodness for small favors...she actually called me back to say they called in an Rx for 2mg prednisone.  At least I don't have to make another long car ride, taking time off work, lugging Emma around and yet another wasted co-pay this time!!  I sure hope the small dose will do the trick for awhile.

You mentioned you're taking prednisone in addition to enbrel - are you on a relatively low dose of prednisone?
I'm not a big fan of the stuff long-term cuz it makes me gain weight if I'm on it for an extended period of time - but hoping it will keep the flare-ups at bay for the next couple months before I start considering to wean her of breast feeding.
Thanks for commenting that my baby does also need a healthy momma...you're so right and I just have to try to keep convincing myself that if in the end, prednisone won't do the trick that I have to suck it up and begin the weaning process earlier than I planned.  After all, SO many things I "plan" now with having a baby really don't quite pan out.    But that's the way of parenthood now isn't it? 

I'm glad to hear Cavan doesn't have the reflux issues anymore - it sure does hurt the poor little ones and it's heart-wrenching!

Thanks again for the support - it's so very helpful!!!
-Barb

[cavansmom]

Hi Barb,

I'm sorry I didn't catch your post earlier.  I try to be on top of checking the site, but the posts seem to come in spurts, and it's been slow lately.  I've been lazy about it.  My apologies.  If I'm not responding quickly, you can also try e-mailing me (contact info on the "contact us" page of our main site, momswithra.org)

I'm so glad to hear Emma is doing better.  That is good news!!  Just remember that as a mom with ra and also a breasfeeding mom, you need a lot of vitamin D and calcium, so you should talk about that with your doc if you're cutting those milk sources out.  You may need a supplement.  I am also a big milk/cheese person, and was shocked to find out I am vitamin d deficient.

About 5-6 weeks after my son was born, I had my left knee drained (I wish she had done them both) as well as cortisoned.  At that point I had RA for 10 years or so, and that was my first experience with that procedure.  My RA flare was in every joint of my body though, and I was a complete mess (couldn't even dress myself).  At that time, I also started on 15 mg of prednisone.  I can't remember how long  I stayed on that dose.  The doc didn't want me on that much, and I didn't want to be on that much, but I was a mess.  I want to say I was on it for 3 months or so, then I cut to 10.  I think I stayed on 10 for about a year, then down to 5.  I just got off it completely at the end of April (3 years, 4 months, 1 day!)  I hate the stuff myself, and do everything I can do avoid it, but sometimes there's little choice.  I needed to be functional, and I wasn't.  I also was taking 6 advil a day and 4 tylenol (or 1-2 darvocet instead of tylenol), as well as Enbrel.  Currently, I am taking Enbrel and 1 advil a day.

I remember when I was flaring so badly, that everything was such a chore, and taking Cavan anywhere took me the better part of the day to get ready and "did me in" for 2 days afterwards.  The very thought of getting him in the car made me cringe.  I'm glad your doctor was able to do some of this over the phone.  It gets a little crazy with all the "hands-on" intervention.

I am a big proponent of having healthy mamas and babies.  I see a lot of our moms really try to tough out the breastfeeding thing and stay off meds all together, but at what cost.  I think babies should be breastfed too, but you have to balance the risk to mom in that equation.  My son certainly has health issues.  I did breasfeed for 4 1/2 months, although his health issues started even before weaning.  I had almost the exact same issues at his age.  I wish I could say I felt breastfeeding did him some good, but I'm not sure things would be any different if I BF longger or not at all.  My big concern was that I was taking meds (that doctors deemed safe), but it was a lot, and worried about how much he was getting, especially when he stopped pooping.  That was freaky.  I've talked to 1 or 2 other moms who had the same poop experience with prednisone, but hopefully only 2 mg will be ok.

Is Emma taking anything for the reflux?  How often/much does she vomit?

Please continue to let me know how both you and Emma are doing.  All of these posts are a help to all moms with ra!  I'm glad you found us!

Lori

[Barb1974]

Hi there!

Well, Emma was doing better for several days with no vomiting and no tummy pains until the last couple days it all returned.   Soooo we've started her on new meds tonight. She was previously on Prevacid the last two months or so, now we're trying Prilosec and hope that this change will do the trick.
For me, the dose pack eventually did the trick and then I started on 10mg of prednisone three days ago...even got in a great hike this long holiday weekend with the whole family.  HOWEVER, tonight I'm starting to feel that all-to-familiar feeling of tightness within my knees and know another flare is coming AGAIN.  I can even feel and visually see my left knee in particular getting big. I was really hoping I'd somehow catch a lucky break for at least a few weeks on predinose...but only got a couple days.  I'm so upset at this because I really don't want to stop nursing Emma this soon.
But I also know I cannot continue at half functioning either!  It's terribly unfair not only to me but for Emma and although I'm a 'big girl' and fully understand life brings such things, it's kinda like I just want to pout and stew about it, ya know? I keep saying that I'm going to be the healthiest 80-something old lady since I've had to deal with this ridiculousness for so many of my younger years.  I sure hope that's the case!
*SIGH*  I know I have to make this terrible decision very soon but it's depressing.
What dose of prednisone were you on while breast feeding? Do you recall?  My ped feels very little steroidal medicines can get thru to breast milk since it's such a large molecule...my rheumy didn't want me to BF at all while taking the dose pack - but what does he know about that anyway.
So just curious to see if maybe I should try a bigger does of prednisone first as a last resort before weaning.
I guess I better also start researching formulas that aren't milk-based yet with still as much 'good stuff' in it as possible.  She's not going to like it much, but we'll have to try!

[DeniseD1]

Hi Barb,

I hope Emma does well on her new meds. As far as prednisone, I was on 15 mg, then 10 mg and eventually 5 before weaning off it altogether. I was breastfeeding my daughter who was 6 months old when I started the prednisone. She is healthy; the pred. didn't seem to affect her at all. She was, however, eating solid foods by this time so that may have made a difference - not relying solely on breast milk for nutrition. My OB/GYN and rheumy both agreed that the prednisone was safe during breastfeeding (forgot to ask the pediatrician). Hope this helps!

Denise

[cavansmom]

I was like Denise... 15, 10, then 5.  I can't quite remember, but I think I was on 15 for most, if not all, of the time I was breasfeeding.  I also got a cortisone shot during that time.  My big concern was the Cavan stopped pooping.  The docs didn't seem to think much of it, but I really wonder about all that steroid.  He continued to have the issue off and on until I quit nursing, then never had it again.  The pediatrician seemed to think that "sometimes babies forget how to poop.  They tense instead of relax."  Ooooookay.  Sounds fishy to me.

It's ok to feel crappy about the whole thing with the stopping of nursing.  I felt bad about it too, but also quite desperate.  There are a number of good forumlas on the marker.  My pediatrician recommended Similac, just because it had the most research on it.  Obviously, you'll have to talk to your daughter's pediatrician about that.  There are soy versions, readily available.

Let me know how things are going.  I hope things get better soon!

Lori

PS.... Hi Denise!!!

[irish]

Hey
 girls

My daughter had silent reflux quite badly for the first 6 months.  we tried gaviscon, ranitidine and finally losec and she was also on enfamil ar formula(names may be different as i live in Ireland).losec was the only thing that completely helped and my paeds doc said to give my baby solids from 15 weeks which also helped - i think it was because the food was heavier than milk it settled in the stomach better.  Does anybody know if there is a correlation to RA/Pa and our babies getting reflux?  there seems to be quite a lot of us with this problem!  i only had steroid general and joint injections while i was pregant  - no oral doses.  i am now 10 weeks pregnant with my third child and stayed on Enbrel until i got a positive test while having stopped methotrexate 6 months before.  No meds so far but i can feel some joint stiffness starting and my pelvic arthropathy starting again.  the joys!  i have never breastfed as i always needed something too soon after birth as my PA did not go into remission during pregnancy and i did flare both times about 4 weeks after.

Good luck!
Denise

[cavansmom]

Hey Denise!

Baby #3!  You're amazing!

I don't know about the reflux thing with RA/PA.  I do know Cavan had it, and it definitely correlated to his asthma (vomit, then 24 hours later, wheezing).  He's been off his reflux meds for almost a year now and had been doing great.  Now, for about the last 3-4 weeks, he's been complaining about tummy upset immediately after eating and vomiting frequently after he eats (happening 0-3 times/day).  It doesn't appear to be a stomach virus, and I've been trying to avoid the doctor's office with all the H1N1 running amuck, but I'm afraid I'm going to have to take him in soon.

It's something to research for sure!

Lori

[momof4]

Hey Barb! I found your post very interesting. We have 3 things in common- we are the same age and both got RA as kids- I was 10. Also, my knees are ALWAYS my problem. I have had such bad luck with getting them aspirated because what always happens is I feel so great afterwards that I can't help but be too active (without any pain telling me it's too much) and then have flare-ups again as soon as the steriod wears off with my knees becoming huge and stiff and painful. After the last time I swore off doing it ever again. Besides the fact that the process grosses me out. Anyway, the last thing in common is that my oldest is also named Emma, but she is 9 now.

I hope your Emma is doing great and you are now on meds that are working. I actually have 4 kids. I've had to quit BFing earlier with each one because I haven't wanted to take anything while BFing them. It has been completely emotional for me everytime where I keep putting it off and cry whenever I think about it. I'm with you, it's nice to whine and complain sometimes even though you know eventually you need to get over it and carry-on.

Thanks for posting, I feel comfort in knowing there are others out there going through the same things.
Katie

[bmer23]

I know that no one has posted anything on this topic since last year, but I'm hoping to get a little more clarity in what I should do. I have Psoriatic Arthritis and used Enbrel about 4 years ago for 5 months on a flare up much worse than what I'm having now.  I have an almost 4 month old now and have to go back to work in a few weeks.

 My psoriasis and arthritis started flaring up about 4 weeks post partum. Since I was staying home, I wanted to hold off on going back on Enbrel so I could breastfeed as long as possible. Now that I am returning to work, there is no way I can function at that capacity with the way my joints and skin feel now. I saw my rheumy today and of course she recommended to stop bf once I start Enbrel. Reading all your stories and comments have definitely helped!! I'm just wondering if anyone currently is on Enbrel and bf?

I just don't want to do any long term damage to my daughter's immune system because I chose to bf while on Enbrel. I'm thinking I won't have to be on it very long and so that's why I'm strongly considering to continue bf while I'm on Enbrel. And I want to start taking the drug ASAP cause I want to start feeling some relief before I go back to work. I would really appreciate any feedback out there!!!! 

[Barb1974]

Hi bmer23

Sorry to hear of your situation -- I know all too well how you feel.
As far as I know, Enbrel is still a drug that they say will effect your milk.

I don't know the details of how your type of arthritis works, but have you ever tried or had luck with Prednisone?  Per my Rheumy AND my pediatrician, Prednisone has such big molecules that it would be very difficult for it to break down enough to have any effect on breastmilk.
Maybe look into that as an option. That is what I did and tapered off 1 pill every 2 weeks until down to none and by that time my flare up worked its way through and I was good to go.  I kept breastfeeding the whole time and didn't notice any adverse effects to my baby.

I had read that you decrease the chances of passing down RA to your baby by 50% if you breastfeed through at least 8 months old.  Thankfully Prednisone worked for my flare up and got me through it - I nursed my baby until she was 14 months old and she decided she wasn't interested anymore (she's a great healthy solid food eater).
And if there is any truth at all to what I read of decreasing the chances of my little girl having to deal with RA at a young age like me, I'll do it!  I'm sure you all feel the same way 

Good luck to you - I really hope this helps!