Information & encouragement to fight RA
RAW4RA ohhhh :-O “rawarrior: New Post: Planning Pregnancy with Rheumatoid Arthritis / Disease http://t.co/yONfrvFI2R #rheum”
I am nearly 38, and first fell ill with RA when I was 33 and still childless. After 4 1/2 years of poorly managed disease, as well as conflicting advice, even from my rheumatologist, on whether pregnancy would be a good idea, I have given up on my dream of having a baby. This past weekend was so hard, because it was the first Mother’s Day when I fully accepted that, barring a miracle recovery from RA, I have essentially run out of time to become a mom.
Would love to know more with the study. I gave up hope emcee. With my other health problems
If you think you might be trying in the future, I can email you when it starts.
I was told that it was unlikely I’d ever have children. They said due to my high inflammatory markers it would make it extremely difficult since my internal body is always running at a high temperature. Throw in an under active, auto-immune thyroid, which can also impact the ability to get pregnant, and there you have it.
Good point Michelle, about the compounding of issues we often experience. Low thyroid can cause miscarriages – I had 4.
I am planning on becoming pregnant within the next year. im currently on metho and plaqenil. I am interested in the study.
I’ll email you when we have more information.
So great to be able to share with others , who know how we are feeling….
I was diagnosed with ra 10 years ago, I am now 38′ and my greatest desire is to be a mum, my hubby and i have tried on and off over the last 8 years but I always end up in too much pain that i have to go back onto my medication. Last year I started reducing my methotrexate and in Feb this year came off it completely, sad to say but two weeks later I was in tears all the time because of the pain, the last thing on my mind was making a baby, my hubby said my health needs to come first so we are strongly thinking about adoption, i am now back on methotrexate and specialist has added salazopyrin, waiting for it to kick in but feel everytime I come off meds they seem less effective than before.
I have been trying to conceive unsuccessfully for almost a year and a half. If I do become pregnant any time soon, I would be very interested in the study.
I have less than 2 months of my 4 month wait left. My rheumatologist wanted 4 months, July can’t come soon enough. I hope that due to my age (21) I will be successful.
good luck Charri!
Thank you for such a wonderful website. I’ve been a lurker for a while.
I have had waves of pain for 18 months now, and seeing a Rheumy May 30th. I read a previous post on here re: Pallindromic RA.
My hubby and I tried for several months last year, without success. And I’m super nervous if I do have some form of RA, if that would flare up during pregancy, and during nursing.
Rheum disease often flares after pregnancy, and is better during pregnancy. But no guarantees either way. I hope you get answers at your appointment. Try not to worry too much but take one day at a time so it doesn’t overwhelm you as much. I know it’s hard to do
I am currently trying to conceive and working with OTIS. I would love to work with RPF too when they are ready. Please email me when they start the study.
We have attempted 2 months so far. We have difficulties because the number of attempts are limited by my pain meds which are limited by the law even though we are supposed to be exempt from the law. I am testing positive for ovulation, but who knows if the eggs are even viable after being nearly killed by methotrexate. I remain ever hopeful that we will be able to start a family soon. I am currently taking 5mg of prednisone, ultram (daily), and percocet as needed.
Going off my meds was difficult, but I was able to stop working, which really helped. When I finally stopped birth control, my RA got much much better, and my fatigue really dropped. I still have symptoms but I went from being severe to mild. Good luck everyone!
Currently TTC. Been off MTX for a year now, strictly on Humira. Been trying since last August. Got pregnant in Dec but miscarried the same month. I was just told my fsh is high and currently doing a Clomid challenge. Deep down in my heart I feel like RA has affected my reproductive system too. I believe this because I had to successful pregnancies prio.r to RA. Please keep me up to date in study.
Kudos to you, Portia, for considering adoption! If at some point my hubby and I change our minds and decide to embark on the journey to parenthood, we shall follow in the footsteps of my sister, who successfully brought her daughter home from Guatemala in 2008. Her experience was inspirational to our family and I love to hear of others who are interested in this path.
I suffer from MCTD, with RA being my first official diagnosis at age 26. My mother, every one of her four siblings, and their mother also had RA and/or some related autoimmune disease…running the gamut from Lupus, Sjogren’s Syndrome, Ankylosing Spondylitis, to hypothyroidism. You name it, we’ve got it in spades. Of my mother’s three children, only my sister is without ailment. Based on her knowledge of our family’s genetics, she chose to adopt.
I do not feel that I have the necessary energy level to properly parent; that’s just the plain truth. If I could find my miracle drug (cue U2 song here) I might rethink my position, but until then, even adoption is not an option for us. You have my admiration!
Thank you for sharing with me Shelly – wishing you all the best !
My husband and I had our daughter in 1997. I was diagnosed with RA in 1998. We tried several times to have another baby, but I was unable to get pregnant.
We were able to adopt three more children (in 2006, 2010 and 2012) and now I am very busy with a 16 year old, 8 year old, 5 year old and 2 year old! We adopted our younger children from China. If anyone has any questions about adoption and RA, I would love to answer them for you.
I am interested in the study.
I guess the best way to explain our situation is we aren’t trying but we’re not not trying. I have a hard time with the green eyed monster on this one. And the constant explaining…
last weekend my inner dialogue was “Happy national infertility reminder day!” or “Empty womb awareness week!” and then I feel ashamed and think to myself if I ever could have children I wouldn’t want them raised by such a jerk.
I plan to try to get pregnant in a couple years. Feel free to contact me if the study is still looking for people.
If you are on meds and accidentally get pregnant, see a specialist ASAP. I was very very surprised that what I had been told about ra meds and side effects were not all true.
I wish i had known earlier…as i did not have additional children based on incorrect information. See a specialist to get the facts.
I would be interested in the study. We are trying to conceive now. I am on plaquenil. I stopped prednisone and Mobic to start trying. I have had two successful pregnancies since the rheumatoid diagnosis. In fact I was symptom free both times and with both children did not have a flare until exactly one month after finishing breastfeeding. My second son I nursed for a year so I had almost two years without symptoms. I REALLY thought it was gone:(. I am very thankful for the time without it but it was hard to accept it when it came back. It is amazing to me that pregnancy/nursing had me completely in remission. There has to be a connection there that could help with a cure/treatment.
Kelly, it’s great that RPF will be doing this study. I was diagnosed with juvenile RA at 18 months, and am now almost 50. In my 20’s, I tried for years to get pregnant. Several rheumatologists knew I wanted to conceive, so I avoided going on MTX, but none of them knew how RA would affect fertility. After years of trying unsuccessfully, I finally saw a fertility specialist recommended by a friend. He looked at my meds, and the first thing he told me was that I probably wasn’t ovulating (despite having very regular periods. Apparently, the NSAID I was on (Feldene) interferes with hormone levels. This great doctor admitted he didn’t know much about RA and pregnancy, so he did a research search. He found a few articles about auto-immune diseases and pregnancy but nothing specifically on RA. He explained I would probably have a harder time conceiving, a higher chance of miscarriage, and due to my being severely underweight, small frame and RA, a difficult pregnancy if I had twins (and triplets could be life-threatening). I took my chances, and after 6 months on Clomid got pregnant. At 33, I had a healthy, baby girl (she was only 5 lbs 7 oz, my RA may have affected her growth).
Today my baby is 16 and learning to drive. She is my only child. It was hell trying to get pregnant. I chose to discontinue all RA meds except for occasional baby aspirin while I was trying to conceive, pregnant and nursing (I nursed until she was about 1 1/2). In my experience, medical practitioners lack knowledge of RA and pregnancy. I already had severe joint damage in most of my joints when I got pregnant, and my OB/GYN’s office and the hospital were not equipped to treat disabled OB patients. The doctor’s office didn’t have a bathroom that was wheelchair accessible or had grab bars, so my husband had to help me every time I needed to give a urine sample. The exam tables were too high for me to get on and off, and due to reduced range of motion in my knees, stirrups are not an option. At the hospital, the maternity ward didn’t have useable bathrooms. The toilets were way too low and didn’t have grab bars. I ended up telling them to call down to PT/OT and get a raised toilet seat. The nurses on the maternity ward were not trained to lift patients and didn’t know how to assist someone with a mobility disability, and after a c-section, I was in more need of help than usual. My husband pretty much lived at the hospital while I was there so he could assist me.
Good luck with the study, Kelly! And good luck to all of you who want to get pregnant! I know that my decisions probably led to some worsening of my existing joint damage, but for me, it was the right choice–as was deciding to stop at one child. Definitely find a good fertility specialist if you are having trouble getting pregnant. If you can, find out about how the doctor and hospital will accommodate any special needs you have due to your RA. If I’d known the maternity ward didn’t have accessible toilets, I’d have made arrangements for a riser seat before I went to be induced. And don’t be too quick to write off parenting because of your RA. People with RA, even with severe symptoms and disability, CAN parent–we just do it differently!
Kelly, I would be interested in the study. If I do plan to try, it would be in the next few years. Thanks for doing this!!!
Hi Kelly, I’m about to turn 22, and I’ve wanted children all my life. I was diagnosed with RA a few months after my fiancé proposed to me, and on top of the inflammation and drug stuff, I also have a genetic condition called Patau Syndrome; basically it makes any pregnancy I might have in the future even more likely to end in the baby’s death. I live in Alaska, so actual specialists are out of state. Is there anywhere online that has more information about RA and pregnancy? My family buried by baby brother after he was stillborn due to Patau Syndrome, and I don’t know if I want to go through something like that again, but I still really want kids. I suppose I’m really conflicted about it, and the RA diagnosis and subsequent treatments haven’t helped.
Grace, I’m sorry – that is such a large burden you have at such a young age. Have you talked with a doctor who specializes in determining the genetic risk of that happening to you? If it would be dangerous for you or the baby, that is a very difficult decision.
I didn’t want to minimize anyone’s desire to have a baby, but adoption is a very real and important option if pregnancy is too risky.
One more thought – try to take all of this one day at a time, one prescription, one symptom, and one decision at a time. Things can be clearer that way anyway. I hope you don’t mind it as motherly advice – my eldest daughter is about your age.
I just recently found out I was pregnant and although I have 3 children this is my first pregnancy while having R.A I’m not sure if I would be classified as a high risk patient or how I would actually feel down the line. As of now I feel extremely fatigued even more then before, im in extreme pain and my feet & hands are always swollen. Can someone give me insight on how it was being pregnant and having R.A. Thank you in advance and god bless you all!
A possible little note of hope on the RA and pregnancy front…
I am 40 and have had Rheumatoid Arthritis since I was 25. My disease was so severe and had such a quick onset that my doctor was concerned that I would never be able to get off of my meds to have kids. (My first doctor’s thought that my RA was just “wedding jitters” – nice!)
Even though I had just been married, my mom and dad accompanied me to the appointment where I was told that it might not be possible for me to have kids. It was devastating.
On my 26th birthday, I could not walk properly, dress myself or chew. My husband of 7 weeks (now 15 years as of next week) had to help me do my range of motion exercises because I could not lift my arms. We started to look into adaptive chairs and padded toilet seats for our apartment so that I could function. I could not dress myself except for loose skirts, pullovers and sandals. (I did still work full time – at a formal-dress finance job, and my boss would pick me up and click my seatbelt for me. Part-kindness, part not wanting to have to deal with my absence.)
Methotrexate brought me back to semi-normal within 5 months. Not to sound like Mary Poppins, but my doctor swears that my positive attitude brought me along quickly too. I could walk and wear shoes again by December.
After a few years, I was well but not well enough on the meds to try and drop them (by that time, MTX, low dose Prednisone and Enbrel). We wanted to try for kids, so I went to an alternative doctor for help. I did this with the complete (but incredulous) approval of my Rheumatologist. I had allergy testing and removed dairy, eggs, gluten and a variety of other things from my diet. My inflammation improved so much that I got the official okay to detox from my meds for 6 months and then started trying for a baby. I now have an almost 11-year old daughter and nine-year old son. The only med I stayed on was low-dose prednisone, which I no longer take because I started to develop Osteopenia a few years ago. I was able to eat more normally while pregnant and ended up having my daughter, nursing for 6-7 months, having my son 17 months later and nursing him until I had to go to TB meds after 7 months in order to prep to go back on the Enbrel.
What I did was not easy for me at first (and the idea of pulling a bunch of foods sounded ridiculous), but it worked and was so worth it. These days, nobody would know that I had RA unless I told them. That being said, I don’t eat as cleanly anymore and my Arthritis hurts me more. The kids were more of a motivation than I am. Every day, I balance what I should be doing to keep going without causing more damage with DMARDS.
I just came across this blog tonight and really love it. I hate being defined my RA, but it is so nice to see people who understand where we all are. When I was diagnosed, there was nobody to turn to and I would have been so grateful for this amazing site…
Of all the decisions I’ve had to make as a result of having RA, choosing to not be a mother has been the hardest and most emotionally devestating for me. I’ve always wanted to have children, but whenever the issue has raised its head, I’ve had to really think about whether it was fair to fulfil my own desire to be a mum when there were a lot of risks for a healthy child, one who I could support financially as a single woman, and that I didn’t have a strong enough network of family to provide the support that I would need if I have flares.
I’ve never been married and though I’ve tried to have relationships, the truth is that most of the men I’ve met can’t get past the “carer” thinking. It’s hard to start a relationship at the best of times but when one comes with a health challenge, it’s even harder.
So I have spent a lot of time in denial about how important being a mum is, I’ve tried to embrace my nieces and nephews with all the gusto I can to use my natural maternal instincts, I sponsor two children in developing countries and wherever I get the chance to make a child’s life better, I’ll take it. I have tried as much as possible to make positive out of a heartbreaking negative.
That said, put me in a situation where I’m surrounded by mothers – especially new mothers – and I feel my heart breaking all over again. I often get hit by the “career woman” tag (i.e. your career is more important than having a child) too, and when that happens I have to summon up all my courage to not verbally slap someone for being so insensitive as to think that there may be another reason for my childlessness. Yes, I have a successful business, but I have to put my nuturing tendencies to good use somewhere.
I think the thing is that choosing to be a mother with RA is a very hard decision and one that has to be taken with the support of the people in your life.
I am very interested in the study I had two miscarriages, I am 26, was diagnosed diagnosed at age 10. I still plan on having at least one child.
I’m getting married at the end at the year of the year and we plan on starting a family ASAP. Disease activity of RA is high for me so I am interested in participating in this study. Please contact me with any further information.
I live in Canada and see a rheumatologist at the Mount Sinai Clinic in Toronto. I was diagnosed at age 20. Pregnancy has been a concern lurking in the back of my mind for the past 4 years. I’m hoping to start a family in the next couple years and have recently made the decision to stop taking methotrexate. I take Orencia infusions once a month and it keeps me mobile however it does not work as well as when it’s combined with methotrexate. My rheumatologist told me there are specialists at my clinic that have successfully seen a handful of women through their pregnancies while on biologics and that it is an option for me. However, I could never forgive myself if the biologics harm the child in some way we don’t know about as of yet. Such a complicated issue, thank-you for posting about this topic.
I was recently diagnosed and refused to start any treatments outside of Prednisone since my husband and I decided having a baby is our priority. If the study is still available I would love go be a part of it. Thanks.
I would be interested in the study when it starts or the results when it has completed. I was diagnosed with Juvenile RA when I was in my early teens and have suffered from infertility for the last 3 and a half years. Having done 4 rounds of IUI and 1 round of IVF and all I have to show for it is 2 miscarriages (including a twin pregnancy). I have been told that I have a low ovarian egg reserve, what they would expect a woman 10 years older than me to have. I am now convinced having done some reading that my JRA has impacted not only on my infertility but also my miscarriages.
I am TTC. Had RA since age 12. I would be interested in this study
I thought I would add a comment from my personal experience in the hopes it is helpful for others. I am 29 and was diagnosed with RA at 17. I take Enbrel weekly and a daily NSAID with the occasional courses of Prednisone as needed. I’ve been on this treatment regimen for over 7 years.
I talked with my OB/GYN and Rheumatologist prior to trying to conceive. We made the plan to stay on my medications until I became pregnant and then go off of everything and only take low dose (less than 20mg) Prednisone as needed for flairs.
My husband and I became pregnant our first month trying, so no difficulty there. I felt fine being off of my medications and was able to continue work (which is very physically demanding) and all of my hobbies without difficulty. I participated in a study out of California who is tracking information on pregnancy and RA.
Unfortunately, I had a miscarriage at 8 weeks. Like most miscarriages, they don’t know why. I don’t blame the RA because I’ve had many healthy friends have miscarriages as well; I think it’s a common thing. That was two years ago and we haven’t tried again. When we do, I feel good about following the same plan as before.
I am interested in being contacted for a study on RA and fertility.
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