the wingless one
02-26-2009, 11:26 AM
I'm turning 27 this year and was diagnosed at 22. My husband and I are thinking about possibly trying to start a family next year (well I'm trying to convince him anyway!) but as of right now I am still on 2,000mg of cellcept, 5mg prednisone and 10mg lysinporil daily. My doctor said I need to give him at least six months or more before I start trying to get pregnant so that they can taper me off slowly and evaluate how my symptoms are doing.
My last flare up was in March/April 2008 but I have been mostly symptom free since then. I do still occassionally have joint symptoms, a swollen finger here, an achy elbow joint there, usually it doesn't last more than a day and it seems to coincide with lack of sleep or rainy weather but I know this is just not normal for someone my age. Is this how it always is for those of us with lupus or is this something I should be concerned about and take as a sign to mean I am not ready to start tapering off the medications and thinking about getting pregnant? I feel like I have lived with symptoms that have been so much worse for so long (like the entire year before I was diagnosed) that one aching joint for one day barely even registers anymore. I just don't know what's considered "well" enough to start tapering my meds.
Do any of you have long stretches (like months) of being 100% symptom free? I've probably gone weeks without any symptoms but I don't think I've gone months since even before I was diagnosed. Just wondering how it is for others....Thanks in advance!
02-26-2009, 01:14 PM
I had several years of being relatively symptom free, then I developed other overlapping diseases and my Lupus became reactivated.
Every person's experience with Lupus is uniquely theirs. There is no two persons who have the same symptoms that affect them the same way. It is possible to remain symptoms free for the rest of your life; it is just as possible that your remission will only last for a matter of days.
The best thing that you can do is to take your meds as prescribed, make the necessary lifestyle changes to avoid flare-ups, keep all of your doctor's appointments and take very good care of yourself.
It is more often the case that pregnancies are successful with Lupus patients. All Lupus pregnancies are considered high risk because they must be monitored closely and medications must be tapered or discontinued. That is why your doctor wants you to give him a six month notice. He wants to make sure that the meds that might harm the fetus are out of your system and that the meds that could help you through your pregnancy have a chance to work. Your doctor also wants you to get to a point where your symptoms are under control and have been that way for a while.
There are many members here who have had successful pregnancies and who now have beautiful children. Perhaps some of them will come along to offer you some more advice and information.
I wish you the very best!
Peace and Blessings
the wingless one
02-26-2009, 08:40 PM
Thanks so much for the encouraging words SaySusie! I think that's why I always come back here, it's just so great to have a community of people who know what having lupus is really like since I've found most of my friends don't really know what I go through and the concerns I have...it's so great to hear that most people with lupus can still have normal healthy pregnancies!
04-04-2009, 10:03 AM
oh wingless, i hope more folks post answers/experiences to your question because this is one of my biggest questions as well.. i was recently diagnosed and the not knowing what to expect is really eating at me..
these stories about remission and symptom free periods are especially encouraging.. i know that hope is a dangerous pursuit, but with this condition, it's all you have..
04-04-2009, 11:24 AM
Hello Mortified and Wingless One..and others asking questions about lasting remission (and pregnancies with Lupus)...
I've had Lupus since I was 18...27 years now. And I want to spread some hope...I had a really rough, life threatening case for the first 5 years after diagnosis...but after things got in control and my medications began working, I've managed to be in a lasting remission for about 16 years now. That means I've had no 'active' Lupus and flareups during that time...it doesn't mean I don't still have some occasional joint pains that move around at times, and I still have Raynaud's issues that plague my hands and feet...but my lab tests show no Lupus activity and I've been able to live a pretty normal, active life...if I take good care of myself and do all the right things that I've learned you must do when you have Lupus. It took me a lot of years to see the patterns of flares for myself and find our what triggered my flares and symptoms...what it came down to time and time again was: stress, trying to push myself too much and not get enough rest, and the sun. Those were my enemies. Once I learned how to adjust my life to lessen or avoid these triggers, I stopped flaring. Simple as that!
And after being told at age 18 that I probably shouldn't ever try to have children, I ended up having 2 successful pregnancies. I went back and found a post I did about a year ago that tells my pregnancy story, so I thought I'd repost it here...mostly to give some hope to those women that are considering their options with pregnancy with Lupus.
I have been through two successful pregnancies with Lupus and have two "miracle" children. A Son, who is 16 now, and a Daughter, 12. They are my Joy in this life!!
My story goes something like this.......
I was diagnosed with Lupus at age 18 and had a very severe case from the start. I had to go on Prednisone and Imuran right away. My childhood family Doctor that diagnosed me, told me I shouldn't try to have children because it was too dangerous with this disease. (That was 27 years ago) I was absolutely devastated! I was 18, just starting my life and looking forward to a husband, marriage, a family someday. I remember I cried for days and spent time in a deep depression.
My first 5 years with Lupus, I was very sick. I had to be on high doses of Prednisone and lost count how many times I was in the hospital. Actually, I chose not to count any more after the first fifty. After the roughest part, things settled down and I went into a remission of sorts. Things were pretty quiet for awhile. I was able to work full time and handle the stress. My husband and I had talked about the risks of a pregnancy and had pretty much decided that it would be best if I didn't risk it with Lupus. Besides I was pretty sure I couldn't even get pregnant because I wasn't healthy.
That's when our birth control failed!! I discovered that while we were busy making our plans, God has His own. I was pregnant!! My feelings, and my husbands, ran the gamut. Everything from sheer elation and excitement to sheer terror and everything in between.
My Immunologist (Lupus doc) was even more surprised than us. He immediately referred me to a High Risk Maternal/Fetal Specialist (Perinatologist) and stopped my Imuran. At that time, 16 years ago, there weren't enough studies on the effects of Imuran on the fetus. It had been used mainly as a anti-rejection med for transplant patients up till then. My Immunologist and High Risk OB kept in close touch and worked together thru both of my pregnancies. This was a blessing.
My first pregnancy was pretty uneventful. My Lupus stayed quiet. I kept working full time. With about a month to go, my blood pressure began to spike, so my OB induced me. My son was born 4 weeks early and weighed 5lbs. 8oz. He was perfect! (in my opinion) I was overjoyed! I was a Mommy! I couldn't believe it!
My Lupus stayed very quiet postpartum, but I did develop difficult postpartum depression. Fortunately, my Doc found a med that worked really well with me.
Now fastforward about 4 years later. I now needed to have both of my hips replaced and had been putting it off because I was afraid to have such a major surgery. I was living in excruciating pain and taking 2 narcotics round the clock. I finally got up the nerve to schedule the first surgery and was banking my own blood for the surgery, when I became very nauseated and weak. My docs thought I was might be anemic, so they started running tests and discovered I was pregnant!! Again!
Hip surgery was cancelled. I immediately got myself right in with my same High Risk OB, and she sent me off to the Pain Management Clinic. They helped me get off the oral narcotics so my baby wouldn't be born with withdrawals, but I had to have what's called a 'Continuous Epidural' implanted in my lower spine that fed intravenous Morphine right to my spine and hips, so baby wouldn't get any.
This made for many challenges thru the pregnancy. There was a high risk of infection at the IV site, so I had to have a visiting Home Health OB Nurse come to my home once a week to check out the IV and change my dressing. I remember my Docs didn't want me to take a shower or bath thru the pregnancy because my IV site would get wet. They wanted me to sponge bathe for 9 months! I freaked out and asked them how they would like to go without a shower for 9 months. They finally gave in and said I could have a shower once a week, if I was really careful and wrapped from my chest down to my hips in Saran Wrap and adhesive tape and dried my IV site very good afterwards. My husband and I still have a good laugh when we remember standing in the bathroom wrapping me in Saran Wrap. I would stand still, with my arms out, and he would walk around and around me using a whole roll. Then he'd tape me shut, put me in the shower with my IV pack right outside the shower door, and he would sit in the bathroom in case I had any problems. He is the best husband on the planet!! Near the end of the pregnancy, we had to use 2 rolls of Saran Wrap cuz baby and I were so big. :lol:
I also had severe morning sickness throughout the entire pregnancy and couldn't eat. At one point, my OB and my husband were begging me to try to think of something I could keep down. Thru trial and error, we discovered that I could eat Alaskan King Crab (cold), baked potatoes with cheese, and (of all things) Hostess Ho Ho's. Eewwwwww! I had never eaten them before I was pregnant, and I don't know why Ho Ho's, but now I can't walk by them in the grocery store without cringing. Alaskan King Crab is another story. I still LOVE it!!
The one thing that remained stable throughout the pregnancy was my Lupus. I was even able to get off the Imuran and stay off of it to this day. I believe that having my Lupus in remission and quiet when I conceived both times, was of great benefit to me.
Anyway, near the end of my pregnancy, my blood pressure spiked again and we induced. My Daughter was born 6 weeks early and weighed 3lbs. 8oz. I was ecstatic!!!! I had a GIRL!! She spent 21 days in the NICU, mostly to gain some weight. She was starving when she came out and ate voraciously from day 1. Unfortunately, right after delivery, I went from Pre-eclampsia to Eclampsia to HELP syndrome, and ended up in the ICU for 3 days. My husband went back and forth from ICU to the NICU. He was the first one to feed and hold our daughter.
I know that I am here by the grace of God for a reason, and because of the excellent care my Doctors and Nurses gave me at O.H.S.U. (Oregon Health Sciences University). They are wonderful!
My Lupus has stayed in remission since then. My daughter turned 12 a few weeks ago, and she is my absolute JOY!! I would go thru every bit of it again in a heartbeat for her. She is SO worth it! Both of my children are! They bring me so much joy and happiness. I can't imagine my life without them.
I did have to change my life a bit after the kids. I just couldn't get a handle on having Lupus, working full time, and trying to be a Mom to 2 kids, so the job had to go. :lol: (Wish it was the Lupus!!) I gave up my work and am now a stay-at-home Mom. I made the decision that my kids needed me to take care of ME first, so I could be there for them. And I truly want to be there for them for a very, very long time. I treasure the time I have with them.
I hope that my story has been helpful in some way for others, and that this much info hasn't been overwhelming. I struggled with the right words to say that would give HOPE and comfort to others. I hope I have succeeded.
I hope success (with a pregnancy) and happiness will be yours....
There is much evidence to suggest that autoimmune conditions do go into remission in pregnancy - in fact with rheumatoid arthritis it is well documented - however once the baby is born there is a possibility of flare but if the docs and yourself are prepared then this can be managed.
I read once that auto immune issues occur when the immune system mistakes the cells of your body as foreign threats so when pregnant the body must have to make an adjustment and not attack the baby as a foreign presence, maybe the immune system gets tuned into this....there are no answers but eostregen is a trigger and pregnancy would seem to present an ideal trigger yet in most cases it turns out to be the opposite. :yes:
04-04-2009, 01:10 PM
Chas....for me, I was already in a good remission going into each pregnancy and managed to stay in one afterwards...something I am very grateful for and I credit my excellent team of doctors with....
I've had the same Immunologist for 27 years, since I was diagnosed with Lupus, and he's always been able to refer me to some of the best specialists, including my high-risk OB, and he works well with coordinating my care with any docs I see. I've definitely been blessed there.
I've read a number of stories of women that had their first symptoms of Lupus when they got pregnant or during the pregnancy or were diagnosed and had their first flare following the pregnancy. In any case, I've heard of many more succesful pregnancies when a woman's Lupus is in remission or well controlled with meds going into the pregnancy.
It is interesting...the hormone connection with Lupus and pregnancy and the whole immune system thing going on. I remember being amazed during my pregnancy that my body didn't go overboard, have an immune response and try to reject the baby....our bodies and how they function truly are pretty amazing creations. Just wish they didn't have to go haywire on some of us.
tiggerlishus - Heidi
06-05-2009, 03:56 AM
thanks for sharing that with us lori so glad you were able to become a mum not once but twice you sound liek a great mum if i can become half the mum you are one day i will be chuffed xxxx
06-05-2009, 05:52 AM
Hi Lori and what an inspiration you are to us all.You have just given so many much Hope....thank you.xxxxxxxx