RA and pregnancy | Arthritis Information

Hi all,

Obviously I'm new here and this is my first post.

My wife (28 yrs old) was diagnosed with RA about a year and a half ago. She was originally prescribed Sulindac and then shortly after that we (she) became pregnant with our first child, and went off her medication. During her pregnancy, all of her RA symptoms disappeared and she was loving life. Our baby girl was born September 3rd, and my wife's RA symptoms started to flare up again about six weeks later... this time they seemed to be worse.

Obviously, this was a very discouraging thing for her to experience and since we have been to the doctor last week, we have been further discouraged. The doctor has looked at her last two x-ray results and (approximately 2 years apart) and concluded that there is enough joint erosion to warrant her starting to take Methotrexate. The issue with this is that we would like to try to have at least one more child and we know that she would have to stop the MTX 6 months before trying to become pregnant and she would not be able to breast feed our 3 month old baby in the mean time.

It is also a little more complicated yet. You see, my wife and I are preparing to move to Uganda, Africa in a week from today (Dec. 10th) to live and do mission work. It is our plan to live and work in Uganda for several years before returning to the United States. My wife just started to take Hydrochloroquin last week and the medication will not begin to take effect for about a month.

Our thinking is that we would like to hold off on the use of the MTX until we try to become pregnant again. My wife can still breast feed while on Hydrochloroquin, and we can attempt to have another child. My questions are:

1) Has anyone here been in a similar circumstance as it relates to pregnancy and childbearing?

2) In your experience, is Hydrochloroquine able to reduce joint damage from RA as well or comparable to MTX?

3) Does anyone have advice for us as we move forward? Please keep in mind that it is very important to us to try to have more children and that is definitely a big part of the equation for us moving forward.

Thank you in advance for any suggestions and support you can offer. We are very nervous about the severity of her RA and how it may affect our careers as missionaries and our potential to have and raise a family.

God bless,
Andrew

Hello, Andrew and welcome! Congratulations on the birth of your daughter!! I'm sorry to hear your wife is having more problems with RA after giving birth. I'm glad you found the AI boards as there are a lot of people on here that have a wealth of information. You're definitely in the right place.

As far as my two cents.... I think I've had RA longer, but I was only diagnosed this past April. I was always fatigued and had strange pains that were attributed to tendonitis which I took Ibuprofen for.

When we got pregnant last year, all my pain magically disappeared. Come to find out, when you get pregnant RA goes into remission. I don't think anyone knows why.

Well, about 3 weeks after giving birth I started to have pains again so I started the Ibuprofen ritual thinking it was tendonitis. When it didn't touch the pain I finally broke down and went to my PCP thinking he would prescribe me something with a little more kick and I'd be on my merry little way. However, once I described my pains to him, he suspected RA. The labwork then confirmed the diagnosis.

I was giving a 5-day pack of steroids (high dose the first day, then it tapers off) which helped quite a bit. Shortly after that I was started on Methotrexate. I don't know if the drug is reducing joint damage or just slowing it down. I did take Plaquenil but had to stop after I had some bad side effects. My rheumatologist added Enbrel at that time.

As far as having another child goes, my RD told us that I would have to stop taking both the MTX and Enbrel for at least 3 months before attempting to get pregnant.

I'm not sure what type of advice to give you as far as whether to treat her RA or go for another baby. I'm not sure how far apart in age you want the children to be. If it was me.... based on the damage shown by the xrays, I would opt for treating the RA. It seems selfish in a way and I'm sorry. My thinking is that the RA needs to be controlled so permanent damage is not done. Unfortunately, this is an aggressive and debilitating disease if it's not kept in check.

BUT on the other hand - if your wife can handle two youngins, go for it! Her RA will go into remission once she gets pregnant and immediately after she delivers she can go on the aggressive RA meds. She probably won't be able to breastfeed, but at least you will have the family you've both always wanted.

Ooh! There's also AP therapy, but I'm not sure if that would impact pregnancy or not. ??? There are a lot of people on the boards that swear by it and would be able to provide a lot of information. It might just be the way to go if it won't hurt the baby you have now through breastfeeding or the unborn child.

I hope you're able to find the answers you need. Have a superfantastic day! I hope your wife has a comfortable evening. Congrats again on the new baby!!

baas:

A lot of people enjoy a remission during pregnancy and flare afterwards. It is almost to be expected.

I would think twice about moving my wife with RA to a third world country. She has a very serious disease and needs access to top-notch medical care. While your mission is noble, I believe that it would be a great detriment to her health.

I lived in the US Virgin Islands for 10-years. Getting medical help was dicey at best and specialists were not available.

The big problem comes when the "systemic" part of the disease starts to flare up -- be it the heart, lungs or other parts that are weakened by a weakened immune system combined with the disease process.

While I understand you want to do God's work, I would choose a place that affords your wife optimum medical care.

Hi I totally agree with islandwoman, this is an insidious disease and very unpredictable, I would definitely keep close to specialist facilities, God works in mysterious ways and maybe you are not meant to move so far, I commend you both on your choices, but this disease is relentless and can be totally life changing, and I know in a lot of cases stress can bring on flares and I would think a big move like that will affect her RA anyway. Best of luck but I think you have a lot of thinking to do, good luck with the family plans also. I can vouch for the fact that a new baby was extremely hard for me to care for with RA., my husband had to stop work and is now my carer, all our plans went out the window, I could not fee, change or hold my new baby. I hope this is not too upsetting for you but I think you need to know all the possibilities before you make your decision. Hugs Janie. Plaquenil is probably the most-studied DMARD in pregnancy. Millions of pregnant women take it to prevent malaria, though not at the dosage used for RA. If she gets pregnant while on plaquenil, it is not nearly as much of a risk to the fetus like methotrexate (miscarriage, horrible deformities) or minocin (tooth and bone issues), and the newer stuff (enbrel, etc) just hasn't been studied enough to know much about their use in pregnancy yet. Some studies show a small increase in birth defects from plaquenil. Talk it over with your medical team. Researchers from Paris, France studied 101 female patients with lupus who were taking hydroxychloroquine (Plaquenil) during pregnancy and for at least 6 months prior to pregnancy. They found no increase in birth defects compared with the general population and had no visual or hearing side effects of the drug in these patients.
..."
Tetracyclines (minocin, doxycycline, etc) are a no-no. They can cause tooth and bone defects. Thanks to the rest of you too

BAAS IT IS WONDERFUL YOU ARE FINDING INFORMATION ABOUT THIS AWFUL DISEASE FOR YOUR WIFES BENEFIT BUT I AGREE WITH ISLAND WOMAN, HOPEFULLY THERE IS SOMEONE IN UGANDA THAT KNOWS SOMETHING ABOUT RA BECAUSE FROM EVERYTHING I HAVE READ IT IS VERY IMPORTANT TO TAKE A AGGRESIVE APPROACH EARLY ON TO TRY TO STOP ANYMORE JOINT DAMAGE BECAUSE WE CAN NOT GET IT BACK WHAT WE LOSE BUT WE CAN TRY TO PREVENT MORE LOSE WITH AN AGGRESIVE APPROACH ESPEACIALLY IF SHE HAS HAD A SIGNIFICANT LOSS IN THE LAST 2 YEARS.

OH I ALMOST FORGOT WELCOME TO THE BOARD AND I WISH YOU AND YOUR FAMILY A SAFE AND WONDERFUL TRIP.

THIS IS JUST MY OPINION YOU SHOULD ALWAYS CHECK WITH YOUR RHUEMY BECAUSE THIS IS A VERY SERIOUS DISEASE TO TAKE CHANCES WITH.

Again, thank you all for your help with this. It is encouraging to know that there are others out there that can relate. I would like to get my wife on these forums to be able to share and have people who can better understand her struggle and her needs. I try, but I am not feeling what she is feeling.

Also, please know that we will do everything in our power to make sure she has what she needs for her RA. We have some friends that have lived in Uganda for 12 years and they say that there are some very good physicians (mostly from Europe) there who may know how to help or who may know who to point us to. I know that the risks of living in a 3rd world country are great, but we are going to be very proactive about getting her what she needs. If it turns out that the help she can get there is not adequate for her needs, we will need to make a decision of what to do (come home or stay) at that point. I also think that some of her conditions could potentially be helped by the change in diet (more fruits and veggies... far less processed foods) and climate.

Also, I mentioned previously that she just started Hydrochloroquine last week and we were told that it would take roughly one month to start to make a difference. Since she can continue breast feeding with this medication, our initial thought is to hold off on the MTX until we know more about the effectiveness of the Hydrochloroquine. Does anyone know if Hydrochloroquine is as effective or comparably effective to MTX when considering the prevention joint damage?

Because, if the Hydrochloroquine makes her feel better along with allowing her to continue breastfeeding and allowing us to continue trying for more children, it would be the best option for us.

However, after we are done having kids, we are interested in the Antibiotic approach and would love to hear some feedback from those who have tried both the traditional medication and the Antibiotic methods.

If anyone has some personal experience with Antibiotics and how they compare to the traditional meds, we would love to hear from you.

Thanks in advance,
Andrew

BAAS ON THE FIRST PAGE THERE IS A TOPIC CALLED REQUESTING NEW APER'S I BELIEVE YOU WILL FIND GIMPY AGOO GOO, JASMINE RAIN, PIP, FROM EVERYTHING I HAVE READ THEY ARE REALLY INFORMED ABOUT ANTIBIOTIC PROTOCAL IF YOU FIND THEM I AM SURE THEY WILL HELP.

BEST WISHES

Baas9,

I am a spouse of a person with RA. My DH has RA and was on mxt when we conceived our second child.

Here is how my story goes...our oldest son went to my parents for the weekend and we went on a vacation. We came home with more than just prints for remembering our trip! I found out I was pregnant on a Monday. DH had a regular visit with rheum dr the next day...rheum doc said we should terminate pregnancy due to horrible defects. DH called me very upset from the car. I became very hysterical for about 5 minutes.

Just for clarification I am pro-family, pro-child, pro-choice...but, I had never intended to make that choice in my life.

After crying to my poor confused 15 month old. I picked myself up and called my OB...cried to the nurse on the phone....she said to hold on and she would get my OB on the phone. (HE IS AWESOME!) I told hiim what the rheum dr said and he said to wait and not to make any rash decisions. He wanted me give him until Friday to do some research.

He did TONS of investigating...calling on docs all over the country. Scouring everything he could find. Calling in researchers to see what they could find.

Friday morning came, we sat down in his office...I, of course, started crying....he said...in my opinion the only thing I could find was that my DH should have little to no sperm count and the fact that this baby was growing and seemed to be healthy at this point. We had a gift that wanted to grow. He spoke the the rheum doc that week and said it like this. He was speaking from his expertise...its like if he, being an OB tried to treat my husband's RA he wouldn't know where to begin. OB reccommended that we have several high level ultrasounds just to make sure everything developing as it should.

Today, I have a wonderful, healthy 32 pound 21 month old. He is a big, beautiful, happy little boy.

Now, with that story behind me I will say this...the OB doc did say that it would have been a different story had the mother been on mtx.

Also, with this I will say I breastfed both of my children for the first year of their life. If you have a question regarding what drugs or herbals or anything taken orally your wife can be on while breastfeeding you need to contact a certified lactation consultant. Do not take information from someone who looks something up on the internet.

There is a board that might help you at www.breastfeeding.com and tell them an old member "Twofebboys" sent you. You might find someone with a similar experience to help you out.

Also, congrats on the little bundle of joy you have!

WifeofJFR39419.8720023148WifeofJFR:

Thank you so much for sharing your story. I'm happy to hear that everything turned out for you guys. It gives me hope that things will be alright.

God bless,
Andrew

Andrew,

I also wanted to say this...don't let the fact that your wife might not be able to breastfeed deter you from having kids. I am completely pro-breastfeeding. I think if a mother can do it she should do it....I worked part time, dealt with a two year old and breastfed, so if I can do it most people could do it. But, if I would have a child even if I knew I couldn't breastfeed....does that make since. I always tell my friends my children are so smart because I breastfed them. But, I'm pretty damn smart myself and I was a formula baby! (That was joke!)

Good luck,

Amanda

Howdy Andrew!

First off, congratulations on the new addition! What's her name??I'm 22, and was diagnosed with RA just over a year ago. Anyway, as someone in a relatively similar diagnoses time frame to your wife, here's my input: I have to go to see my rheumatologist one to two times each month. I was in remission for about two months last Spring, but since then, have not been...this doesn't mean I can go and do and function...it just means that I have to take my meds on time, every time, or I pay the price (ie, can't walk, can't extend my elbows, can't make a fist or hold/lift ANYTHING (unfortunately this would include children...as I learned over Thanksgiving). I know y'all's plans have already been made, but you really should at least find out FOR CERTAIN that there will be someone in Uganda to be there for your wife medically. General physicians just won't be able to cut it, and not knowing for sure before you get there could result in a great deal of pain for your wife, and stress and frustration for the both of you.

The other thing, in the third world countries I've been to, the ability to consistently get medication, not to mention electricity, have been very questionable. Some of the more effective RA medicines HAVE to be refrigerated, and you HAVE to be able to get your meds consistently.

As for wanting more kids, man, I can understand that! My fiancee and I want two, ideally. Also, I applaud y'all's desire to go live in service...mission work was once a path I thought I would take.

However, with both of these things, these are/were MY plans...not necessarily God's plans. It's funny, how we can think we're walking the path we're supposed to, and then something shows up in our lives, or doesn't work out quite right, and sends us in a new direction. Not a bad direction, but a new direction. I'm not saying give up on y'all's plans by any means...but realize that God has a purpose for putting this disease in y'all's life together, and that living for any long period of time in a third world country might not be part of that plan. One thing that I've learned, though it's not the same as international missionary work, is that there is plenty of work to do at home.

Again, don't let this disease stop y'all from living, but realize that it will (in many ways) start to dictate how you will live. And trust me, that part is as frustrating as anything else I've ever had to deal with. However, once we learn to live with disease, instead of trying to live in spite of it, life gets a lot less stressful, a lot happier, and a lot, not easier, but more manageable.

Sorry this was so long...your post just really hit me. I'll be praying for y'all, whatever decisions y'all make and the challenges I know y'all are going to face wherever y'all live both with this disease, and with a new baby!!! Though the last part's definitely the most exciting!

~Kristen
The American Academy of Pediatricians say that tetracyclines and plaquenil are OK for breastfeeding moms... but it's not clear if they base that on dosing for infection (typically a couple of weeks at most) or long-term RA dosing.

The one good thing about Plaquenil (hydroxychloroquine) is that it should be readily available in malaria-prone regions, and it doesn't "go bad" like the tetracyclines can. It's also taken by millions of pregnant and nursing women (although again, malaria treatment/suppression dosing is far less than RA dosing).

Definitely check with your medical team, and best of luck!!!

[QUOTE=kschultea]However, with both of these things, these are/were MY plans...not necessarily God's plans. It's funny, how we can think we're walking the path we're supposed to, and then something shows up in our lives, or doesn't work out quite right, and sends us in a new direction. Not a bad direction, but a new direction.[/QUOTE]

Yes, I totally agree...have you ever hear the thought....if you want to hear God laugh tell him your plans!

kschultea:

Thank you for responding. Its good to hear from someone who is a similar station in life. I pray that you will be able to have the family you desire. God is able to do great things... greater than we can ask or imagine

Baas:

Okay, I'm trying to understand this: you are taking your wife and child to Uganda because you already said goodbye to her folks and shipped household goods. And you've "heard" that there's competent physicians there. A quick search of internet shows otherwise -- medical aide is being consistently sent to Uganda, doctors are stressed and overwhelmed by the AIDS epidemic and other emerging diseases, but it would be inconvenient to change your plans and stressful? I'm sorry. I can't understand why you would risk your wife's life and the life of your child because it's inconvenient and stressful.

I don't mean to come down hard on you. I just don't think you realize how serious your wife's condition truly is -- taking her to a place where strange fevers and water-borne illnesses are rampant, along with dengue fever, malaria, etc. when she has a compromised immune system does not seem to be either sensitive to her needs or a well thought-out plan. I know I'm not going to change your mind.You will do what you want to do. Just know, in advance, you are taking a heckuva big chance on two peoples lives -- your wife's and your childs.

Howdy again!
What a beautiful name! And I agree, God can do amazing things. And I understand about following previous confirmations...y'all must follow your hearts. Just please, realize that this disease is not a minor bump in the road, something that can be worked past and moved on from...this thing is for life, or just one inhibitor among man confirmations. The ramifications and the effects, both of the disease itself and of its medications, start to add up alarmingly quickly. The rest-of-your-life thing is something that I still have a hard time accepting, but God's put it in my life (my whole life) for a reason. It's learning to live with it, and not trying to live in spite of it (which I think I said last time...lol...sorry for the repeat).

A propane fridge would definitely do the trick...the issue would be getting the meds to y'all. From experience, the refrigerated meds do not have a generic option, and the companies that have their licenses are US-based. And the meds have to be consistently refrigerated from the time they're shipped to the time they're in your fridge...I almost lost a whole month's worth of Enbrel that way...FedEx was a only day late, and it was a very close call.

I'm glad that you see your first mission as to your family. That reassures me, because Islandwoman does have a point. Yes, all of the apostles, and many modern-day missionaries have crosses to bear. If RA was a disease that was like osteoarthritis, and only actually affected your mobility and pain levels (which I know is a severe enough reality) then I would agree with your analogy completely and there would be less to worry about with going to Uganda. The thing is, RA wrecks your immune system, and the drugs that help control the disease's progression further hamper its functioning. Without specialized and readily available care, things can get really bad, really fast. I'm sure y'all have taken all precautions in regards to malarial meds, and immunizations and the like...the thing to realize is that with a compromised immune system, these precautions do not function in the same way they do in a healthy individual.

Another thing, and I'm sure you've already thought of this too, is please, please be oh so careful with the health of your baby girl. A friend of mine's parents were missionaries in Africa while she was a toddler, and she managed to develop her own special strain of malaria, and was extremely ill for a long time. They ended up having to come back to the states in order to get help. While I have no doubt you would rush home in a heartbeat if your wife or child ever got sick like that, its nicer to try to avoid the sickness part altogether, especially as your daughter's immune system is not fully formed, and your wife's system is no longer functioning normally.

I truly don't mean to discourage y'all, or to frighten y'all with what I'm saying, or to say what you already know. It's just, being at the same stage and not having had the blessing of being pregnant (yet!!!) and the remission that can bring, I've had active RA for a bit longer, and let me tell you, it is a progressive disease that gets worse. Lol, cheery thing aren't I? For me, there was a point when plaquenell, prednisone (got off it b/c very bad for you long term), and relafen were all I needed to continue to function. Then I progressed to needing Enbrel, and then methotrexate. Now, its almost under control, but not entirely. Today, for example, it got cold, and my ankle and wrists are killing me lol.

Anyway, I'll stop rambling now...sorry again for the length. I pray for y'all's safety on this endeavor.

~Kristen
IslandWoman:

I'm sorry that our decision is something that you don't agree with. But, you need to know that it is OUR decision... not mine. I am not taking my wife to Uganda... we are going together and this is something that she is wanting to do just as I am. To suggest that she is a "tag along" of some kind is misinformed and insulting.

As to your concerns for her health and the availability of medical care, that has been, and continues to be my #1 concern and priority. I know that you must feel very strongly about the disease because you know it intimately, but to suggest that I am not considering what is best for my family is upsetting to me. I have said before that we will take things as they come and will do our best to treat her disease. If that means coming home, then that is what will happen.

Concerning the timing of everything... I don't think you fully understand the depth of our commitment and the sacrifices we've made to move to Uganda to serve people. All (not some) of our possessions are in Uganda. Sure, we could pay another ,000 to ship them home, cancel our plane tickets less than a week in advance and lose another several thousand dollars, and we could start looking for a new job (being that we are going to be receiving a salary to do the work and if we don't go, we don't receive it). However, those things are not decisions to be made rashly. This move to Uganda has not been a "willy nilly" dream that we just decided to do. It is something that we have prayed about and planned for over several years.

All those reasons for us to continue to make the move do not, however, mean that we will allow my wife's disease to go untreated.

I'm sorry that you are not in support of our decision, but we will keep this forum informed on our progress and whether or not we will need to come home.

Blessings,
Andrew

PS - all the reasons to be afraid of moving to Africa are reasons we are going in the first place. Just because we were privileged to be born in a place that allows us to have all the options for life at our disposal, does not mean that we should horde it all for ourselves. There are millions of people who do not have the option to deal with their ailments the way we do. We want to help those people. If we need to come home, I'm sure that God will make it clear to us. But until then, we are going to live and serve where we feel we have been called.

Thank you for your concern.
Howdy again!
Please do keep us informed! I look forward to y'all's updates :-). You are going to be in a place and culture that few of us know much about, and I'm sure God will bless y'all through that as much as He will use y'all as a blessing to others.

And I really hope I didn't offend you with anything I said...I completely respect that this is y'all's decision, and never once thought it was you taking your wife along...missionary couples are an amazing partnership. I know y'all care more about your family's well-being than any here on the board ever could...lol you'll have to forgive some of us for being overly enthusiastic in our concern. God will lead y'all down His path, be that to a long stay in Uganda, or a return trip to the States. Again, prayer are with y'all.
~Kristen

Andrew -

Sorry, I didn't see your post.

I'm an APer - use Minocin to beat this disease.

You cannot use Mino during pregnancy. The baby's get grey blotchy teeth and some get bone problems. There are other drugs that can be used - Zith, I think - and it works just as well. But you would need a AP doc to help you figure out your options. Where are you located right now? My AP doc is religious and I think if you called him he'd help you over the phone on options.

Don't give up your and your wife's dreams! God works in mysterious ways.

Pip

It was not my intention to upset you or your wife, but to stress the severity of the disease you are dealing with -- and in a foreign land, that's not easy given all the extra blessings of the area.

Your wife sounds like she's poorly controlled now. I've tried both minocycline and the drug she's currently taking to no avail.

Good luck to you and to your family.

Thanks again to all of you for your comments and help. I'm sorry if I came across as overly upset by any of your comments. What I am really upset about is that this is happening in the first place, and that there is not a whole lot that I can personally do to take her pain away. It is a very helpless feeling and it is difficult for me to deal with. So, I apologize if I came across a little "snappy" :)

We will do our best to keep in touch with you guys on this message board and we will let you know how she is progressing. We greatly appreciate your prayers.

Pip!:

We are very interested in trying the AP method of treatment. If that is something that my wife's body will tolerate, we would definitely prefer it over some of the more potent drugs.

If you would be willing to provide your Doctor's phone number, we would love to get in touch with him/her to talk about some of our options and how we might be able to start to deal with this disease through the use of antibiotics. If you could put us in contact with your doctor, we would be extremely grateful.

As to our current location, we are in Vancouver, WA USA until December 10th when we will be leaving for Uganda. When we arrive in Uganda, we are going to spend the first few days getting in contact with all of the "good" doctors in the country to try to get some "in person" help. But, we are not sure if there is a Rheumatologist in the country or anyone who might be able to help us to start the AP. I did buy the Henry Scammell book recently online, but have not had a chance to read through it yet. I am wondering if it will help a person work through establishing an effective protocol, or is it just informational?

We would love to continue discussing this option with you if you would be willing and if you feel you might be able to help. Also, please let me know if you would be willing to help us get in touch with your doctor.

Blessings & thanks again,
Andrew

Hey Andrew -

I recently 'met' a woman on line starting AP and going to some remote part of the world. It can be done but you have to be a boy scout - ie. BE PREPARED.

Will you have connectivity in Uganda?

Hugs,

Pip