Spondylitis Association of America Forums General Discussion Young Adults - The 20-Something Club 27 y/o new to the forum

Hey everyone-
I'm a newbie to this site and am looking forward to talking to some people going through the same tough days I go through!

I am a 27 y/o RN and was diagnosed officially with AS in 2011.
I am HLA B27 + and have b/l intermittent SI joint inflammation wtih some radiation down my outer legs at times.

When I externally rotate my hip, sometimes I feel my joint (i think) pop and then it feels better for a short time.

I am currently being treated with Voltaren 75 mg and my Rheumy wants me to start Embrel, but I am scared to tears about it due to the side effects and because I would like to start a family soon.

I have been tackling a starch free diet modification along with taking 3 grams of liquid fish oil daily.

My biggest concern is pregnancy.....Im scared to get pregnant and have an infant/toddler with this disease....IS ANYONE OUT THERE WHO HAS AS IN THEIR SI JOINTS WHO HAVE BEEN PREGNANT OR HAVE AN INFANT?

I have an excellent support system, so I know I will have help.

Thanks in advance and Im happy to be part of the group with everyone!

--Eve

Hi welcome. I was also dx at 27 (I'm 29 now). I have had a lot of luck with fish oil helping my joints move more freely. hopefully it will help you too.

Welcome Eve! Do you have any SIJ fusion? If not, I would think that delivery would hurt like the dickens (doesn't it always?) but not otherwise be hampered. I'd say go for an epidural in that case. SIJ fusion however might complicate matters. I would pose the same question in the main forum with a title like, "Pregnancy and SIJ Inflammation" since the wider age group active there is more likely to have had children and be able to offer first hand experiences.

I also hope to have a child or two later this decade so I share your concerns. I know first hand that anti-TNFs can make me a functioning person though, so I believe I could be an okay momma. I most fear going off of some medications during pregnancy/breastfeeding. I would likely remain on Humira or Enbrel during pregnancy unless they find any as yet undiscovered reasons not to between now and my hypothetical pregnancy.

Hey-

I am not sure if I am fused yet or not, repeat MRI in March. If I had to guess, I would say I am not fused. I am looking at the idea of being intubated (under anesthesia) for an elective C-section to avoid any SI inflammation with pushing. Again, you had mentioned the epidural, but if you are fused anywhere in your spine, you may not be able to get an epidural or spinal and end up having an emergent C-section anyway, so I would rather have things planned.

I have a lot of family support when I have flare ups, so I know that when I do have children I will be able to have them help me or get a nanny should I be in a flare up at that point.

Thanks for the response and tip about reposting for a different group of people.

How does AS affect your ability to do your job as a RN? I'm only wondering because I'm in nursing school and they told me I have PsA...

Hey Kay-

My pain is primarily in my SI joints, so sometimes every step I took would endure pain.

As far as work, I have no idea how I did full time. I worked full time at a level 1 trauma center int he ICU for 3 years and then we did travel nursing and worked in Florida for 2 winters and Reno NV for 6 months but I switched to night shift so it wasnt as much running around, if that's possible in nursing.

When I had my first symptoms about a year out of nursing school I was out of commission. We didnt know what was wrong and I took about 1.5 months off of work because I couldnt move without spasms. I had steroid injections and went to PT for a few months- then I went into remission, still not knowing what was wrong.

This is a long description, sorry, but while we were travel nursing we decided to go back to grad school, which landed us here in Philly. My husband is in CRNA (Nurse anesthesia) school right now and I had wanted to so badly go to school with him, but because of my back knew that when I had to go in a 4AM for a C-section or something, the way my back is in the morning, I cant just pop out of bed a lot of the time, so I knew it wouldnt work.

So I knew that I couldnt do bedside nursing my whole life, so I
decided to go the nurse practitioner route and I graduate in
August...As far as work, I work PT right now at International SOS
which is a medical assistance company in Trevose- So basically I sit and talk to patients on the phone and do 911 triaging for people traveling with school or work abroad when they become sick. When I was working at the hospital FT though and my leg was flared I would be limping at work some nights for sure and it SUCKED. I hated it and knew I needed to get out if
even though I loved it so much.

So that being said, get some experince and then you may have to face the realization that you may have to do some sort of nursing that isnt bedside, for your sake- also it depends on where your PsA is... Good luck to you!

Welcome aboard! I am still pretty new to this whole AS thing, as I was just diagnosed this past November, at 29 years old. However, I have been suffering from pain and other mysterious symptoms for at least 10 years. I am also an RN and have had to switch positions due to my disease. I was working as a cardiac nurse on a busy unit, but I am now doing telephone triage. It is so much better for someone with physical limitations who still wants to be a nurse. I know that I could never go back to what I was doing before.

As far as having children is concerned, many women say they actually feel better during pregnancy. Definitely plan ahead and talk to your doctors about pregnancy, labor, and delivery. Your OB may want you to be followed by a high risk OB. It sounds like you have a lot of family support, which will be helpful. I have 3 kids and been very fortunate to have great support. I was actually just in the hospital for 3 days last week, and our families really pulled together to help us out, which makes a HUGE difference.

Yes, there are many days it is difficult taking care of 3 children (ages 10, 3, and 2), especially when I am in the midst of a flare. However, kids are adaptable. When I am having a bad flare, I spend a little more time on the couch and may actually nap when they nap, but I still can sit on the floor and play with them for a little while. Or they will climb on the couch and sit next to me and cuddle and watch movies or read books together. Can I run around with them and toss them in the air like their dad/my husband can do? No, but in the end they know momma loves them still spends quality time with them, as that is what matters the most.

Hi Kim-
Thanks for the response. That is funny that you say you switched to telephone triage, because that is what I am doing while in school! I work for an International medical assistance company and triage people traveling outside of their home country.

Yeah, I live in Philly now, but when school is completed we are looking to move to a small town, so I am worried about not having the resources needed once I am pregnant, so we are thinking about getting pregnant soon and then having a baby while still in Philly so I am with my current GYN and Rheumy.

I am picturing what you said about sitting on the floor with kids and I think I could do that for a short time. I worry about carrying them around when I am limping. I will just have to modify things and utilize a stroller a lot! haha

Thank you for all of your tips, everything is appreciated. I am really confident in my starch free (most of the time) diet modification because I am really trying to avoid TNF's for treatment.

Thanks again and maybe we will talk again soon!

Hi,
I feel that I can relate to you as well. I am 25yo and an RN. My husband and I are talking about starting a family as well and I am VERY nervous about carrying the baby and what do I do when the child is in the world.... But I think that everything will work out and Its great that you have a great support team(as do I) b/c with out that it would be really hard. I was also diagnosed in 2011 I have had s/s since my early teens. Iritis helped me get diagnsosed. Congrats on getting your NP!! Bed isde nursing is very hard with AS, somedays i'm not sure how i will beable to do it but I somehow make it through.

Welcome

Eve - you are not too far from me! I am about an hour north of Philly.

As for carrying the kids around, you really do figure out ways to adapt. Fortunately it gets a bit easier once they are able to start walking. Some days, when the pain is minimal, I can carry my 2-year old around for a short period of time. My 3-year old is 45 lbs, so that is out of the question. But she is good about walking and holding my hand. My 2-year old is a lightweight at 24 lbs, but on the days when the pain is bad, even that is too much. Thankfully most of the time I can just hold their hands if we're walking outside. Or I will bring the umbrella stroller, which is nice and light, and have my 3-year old help me push it. The hard part was using the infant carrier, especially as the babies got a little heavier. But fortunately, at that time, my disease was not quite as active.

In any case, you definitely find ways to make it work, and it is so worth it. Are there days I am absolutely exhausted and just want to be able to close my eyes and take a nap? YES! But usually I can look forward to relaxing once my hubby gets home. He has taken over cooking dinner and various other household chores, so that I can focus on taking care of the kids during the day and going to work on the weekends.

Thanks for all of the advice-
We have officially started being "less careful" and whatever happens happens in the baby department :-)
Where do you live Kim, I work in Trevose right next to bensalem, about 25 minutes north of Philly.

I would love to get together and meet you, have you ever took part in the Philly support group?

I really should check this group more often...I just saw your post. I live in Bethlehem, which is in the Lehigh Valley area. It's about an hour north of Philly. I have not yet taken part in the Philly support group, but I have looked into it and have been in contact with the group leader. The problem is that I work weekends, Saturday and Sunday 11a-11p, and finding coverage for my shift is not an easy task. So, I have been unable to make it to the meetings as of yet.

I'm a newbie too! Diagnosed in May this year. And I sometimes feel my joint pop and feel better for a short time.

My biggest concern is pregnancy too! I've been lurking around the forums and noticed a lot of mothers around, which gives me hope. When I was diagnosed the first time my mother asked was if I could still have kids.

I have all the SI damage but I'll gladly take it for my boy anyday. Hell I landed on crutches the last bit with him but he is worth it.