Frustrated and tired of Doctors reaction to my pregnancy!

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New Member

Date Joined Oct 2008
Total Posts : 4
   Posted 10/14/2008 4:31 PM (GMT -6)   
 Hello Everyone, I'm a 29 year old female who was diagnosed with Lupus Nephritis in 2006. I haven't had a flare in 2 years of diagnosis, I have had the occasionally protien in the urine but no flares. I found out that I'm pregnant 3 weeks ago. I'm 13 wks now and my Lupus doctor was so very upset with me when I told him. I understand that due to my condition I should have planned but my finacee' and I were taking precautions, I had the nuva-ring and we also used condoms the times that I had to take antibiotics for my persistant UTI's. But by God's grace I'm pregnant. I was shocked and disappointed when I went to my scheduled appointment and my Nephrologist asked me was I going to terminate. I wanted to jump out of the chair! I told him that we were being very careful and we were planning for our wedding not a baby. I have an 11 year old son and he is very excited but I'm not getting the same excitement from my doctors. He seems to be aggrevated when I ask about the meds and if they are safe for my baby. I just wanted to know if anyone else has ran into these same obsticals? I take Cyclosporin 75mg twice a day, Prednisone 10 mg a day, Prenatal vitamins, Plaqenil and Ampicllin 500mg every 8 hrs (due to my current infection). I went again today and I got the same reaction, he was annoyed that I was more concerned about the meds and my baby's health. I'm not sure what to do, I'm starting to get frequent Migrains from the stress. My fiance' was deployed a week after we found out we were pregnant, I'm back to caring the load alone. I find that I'm tired all the time and I fear that its going to get worse. On top of all of this my I find myself fussing for no reason and I just want to cry cry
Your input is appreciated!!! confused

New Member

Date Joined Oct 2008
Total Posts : 17
   Posted 10/14/2008 4:49 PM (GMT -6)   
Hi hazel Eyes. I too have kidneys problems i have had them since i was diagnosed with lupus and i was told by one kidney dr that i shouldnt have children at all and I left her and my other kidney dr told that as long as i was not flaring that i would be ok. I tell you i had a nice pregnacy with my daughter who is 7 years old, but they told me that shouldnt have any more chilren because i know that i was almost in kidney failure in 2006 and that seems to be doing better I know that i know that my baby was a miracle from god because of the rounds of cytoxan i went though and i know that she was early but only like3 weeks early cause i was going to go into a flare up which theydidnt want me to so they induced nme but i know that the same dr that told me to have kids i went to her after i had my daughter and she gave me the dirtiest look like why did you do that . I just wanted to slapp hew in the face . well i hope that this helps Dawn

Regular Member

Date Joined Aug 2008
Total Posts : 47
   Posted 10/14/2008 5:44 PM (GMT -6)   
I am just peeping in from a different Forum, and wanted to say welcome and congratulations!
There is a reason this little one is on his/her way, I'm sure!
Relax, be thankful and excited, and maybe discuss with your doctor that you are NOT terminating, so...if he would kindly guide you to the best health for you and your new little one. Give your current doctor a chance, since he knows you and your health, but if he isn't willing to help, you have to go with what you feel is right. Explain, especially since you didn't do this "on purpose". If he's not willing to be helpful, then I have heard that a doctor that is pro-life is usually educated in helping in circumstances like this.
Along the note of your fiance' being deployed, my thoughts and prayers are with you! Been there and know the route is rough at times.
My small understanding of Lupus , I do believe it is important to be as little stressed as possible. Try to delve into the excitement of the new little one and put the other thoughts aside.
remembering you, and lifting your family up -
husband's: secretary, cook, researcher, housekeeper, wife, nurse, comforter, etc. and loving every minute of it! 
Husband Diagnosed CC 7/06: currently getting 2nd opinion
currently taking: Calcium, multi-vitamin, vitamin C, iron
remission - (tried Asacol, Entocort, pred - taper, Canasa, Colozal, Flagyl)

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 10/14/2008 6:25 PM (GMT -6)   
Hi HazelEyes and welcome. I'm so sorry for what you are going through. You have a lot of stress right now, not only from your docs, but also your fiance being deployed and the physical demands of the pregnancy on your body.

I don't have any words of wisdom because I had my two kids before I got sick. My only question is have you seen a high risk OB doc? I know that other women on the forum here who have been pregnant have seen a high risk OB to make sure everything is as safe as possible for you and for the baby.

I'm glad you found our forum and I hope you'll keep us updated on how things are going for you.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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New Member

Date Joined Aug 2008
Total Posts : 7
   Posted 10/14/2008 6:46 PM (GMT -6)   
Hi.. when i see any posts about pregnancy i go to them right away, because i am also pregnant. I am now 17 weeks .. and well in the beginning it was very scary. and my kidney dr was VERY surprised that i got pregnant because of the CYTOXIN that i was on for 6 months.they told me that it was basically make me infertile. but at that time i didnt care because i was just worried about me and my health.
anyways.. right now i see a high risk OB and she is GREAT! she deals with lupus patients that are pregnant. i see her every 4 weeks. i think that if you have a dr that is so disapointed in you for getting pregnant then you need a find another dr that can really understand what you are going through and be there for you .. no matter of this pregnancy was on purpose or an accident. whats done is done. and you need a dr that can guide you to a healthy pregnancy and treat you with medications that are safe for you and the baby. I hope that you can your current dr can work things out. becuase i know how stressful it can be to switch drs.
right now i am taking 5mg pf prednisone. azothiropene and prenatal pills. my OB has told me all of those are safe while pregnant.
good luck with the pregnancy!

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 10/14/2008 8:57 PM (GMT -6)   
Hi Hazel,

Welcome to the forum!! ((((((((( Hazel )))))))) big cyber hug for you sis. WOW! How much more careful could you have been!! We had our fourth baby in spite of triple birth control. I was shocked . . . and cried for three days . . . but then I realized that this baby was very special and guess what .. HE IS . . . he is my baby and he is now 26 years old!!

I can't answer any of your medical questions . .. my lupus did not seem to affect my pregnancies except that I had a 4 month miscarriage and a couple really early ones.

Some of the others will likely be able to comment on your questions. I hope things go really well for you and your very special baby!! You are welcome to join us and ask any questions you might have. I hope you'll keep us updated.


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 10/15/2008 12:36 PM (GMT -6)   
I would consult a geneticist (reproductive) on the medications. They tend to know what is okay and what isn't. I have a healthy 6 months old but my kidneys are not involved in my disease. I was on imuran the second half of my pregnancy. I did a regular ob and a high risk ob but my disease was in remission and this last pregnancy was my best ever- my other pregnancies were nightmares for me and the doctors. My son is doing great just an FYI. My pregnancy was very planned though and we adjusted my meds before I got pregnant. My signature needs updating but I took all the meds listed, except cellcept, tramadol, and skelaxin, plus a few others not listed. I am unsure what some of your meds are exactly. I can say plaquenil has been safely used in pregnancy for decades in Europe and my doctors all agreed it was safe at the dosages used today (they used to use thousands of milligrams instead of hundreds and that did have a possibility of causing problems). My doctors also said women who have had kidney transplants have been taking imuran and having healthy babies on it for decades as well. Cellcept though my rheumy said absolutely do not get pregnant and if I do I would have to terminate- but I am in a really bad CNS lupus flare right now so that is half the reason she said that. My life would be at risk if I got pregnant today. Since she was helpful and encouraging when we decided to try for a baby and supported my decision 100% I know she did not say what she did lightly.

If you are in Michigan I can give you the name of my OB who handled my pregnancy, he was really good and would refer you to a high risk specialist. I actually even know a good high risk specialist on the other side of the state from me too from my pre-diagnosis pregnancies.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements

New Member

Date Joined Oct 2008
Total Posts : 4
   Posted 10/15/2008 4:28 PM (GMT -6)   
Thanks Everyone for your encouragement and comments! I have seen a highrisk OB doc and he says that the baby is doing well and so far all my test and levels are normal. He also told me that my meds are safe and at the current levels I shouldn't have any problems. I had a UA last week and had little protein in my urine. I'm excited and I made an appointment earlier today and talked with my Nuephrologist and voiced my opinion about his "bad" bedside manner. He understood and going forward will do everything possible to see me through a healthy pregnancy. I was also told that i would be infertile due to the 5 rounds of Cytoxin treatment I took last year. My cycle went off on on for an entire year, my hair shedded and I lost quit a bit of weight but by God's grace I made it through and I keep an eye on my kidney function and my protein levels.

Regular Member

Date Joined Aug 2007
Total Posts : 206
   Posted 10/16/2008 8:54 PM (GMT -6)   
Congrats!  Right now I am currently waiting for my doctor to say it's okay to try and have a baby, so I would consider you very lucky.  My rhuemy and I and my gyno have talked  about what to do when my body is ready.  I am hooked up with a high risk OB doctor who deals with Lupus patients.  Like others have said, find yourself one of those doctors.  There are so many things I have read about Lupus that says that we can usually live normally and have a family of our own.  So, I think it heartbreaking that a doctor wants you to terminate.  I think they better have a really good reason with evidence to back that decision up.  Good luck to you!
"Challenges make you discover things about yourself you never really knew."
SLE and Class II Lupus Nephritis

Regular Member

Date Joined Aug 2008
Total Posts : 47
   Posted 10/17/2008 4:26 PM (GMT -6)   
I am so glad to hear that everything is going well! That your doctors are there for you is important!
I am encouraged by the good news!
Blessings on your family and your new little one.
Will be thinking of you and lifting you up!
husband's: secretary, cook, researcher, housekeeper, wife, nurse, comforter, etc. and loving every minute of it! 
Husband Diagnosed CC 7/06: currently getting 2nd opinion
currently taking: Calcium, multi-vitamin, vitamin C, iron
remission - (tried Asacol, Entocort, pred - taper, Canasa, Colozal, Flagyl)

Tá mé breá
Regular Member

Date Joined Aug 2008
Total Posts : 140
   Posted 10/19/2008 1:14 AM (GMT -6)   
Big Congratulations! don't let anyone get you down. We have 6 children and I was using some type of bc with all of them. I wanted children, just would have planned differently. But they were meant to be. we have a pill baby, a diaphragm baby, a foam & condom baby, a rhythm baby, and then I had my tubes cut and burned. a year later I was pregnant with #5. after he was born they told me I still had no tubes and not to worry, it couldn't happen again. 9mo later I was pregnant with #6. I don't know what I would do without them. (except during teenage years!)

Take really good care of yourself and rest as much as possible.

Marie-43 yr old mother of 6 grandmother of 1 going on 2!
dx 2008 - myelofibrosis - possibly autoimmune, osteoarthritis in spine, testing for possible MS or CNS lupus / vasculitis. family history - mother RA/Lupus maternal gma - lupus.
rx-cymbalta, propranolol, clonazapam, prednisone, progesterone cream, b6, b12, flaxseed oil, C.

"All we have to decide, is what to do with the time we are given" ~ Gandalf

Veteran Member

Date Joined Jul 2007
Total Posts : 1048
   Posted 10/20/2008 3:35 PM (GMT -6)   
What a miracle! Congratulations! Keep your chin up girl, God must think very highly of you! Take care, Judy

New Member

Date Joined Feb 2007
Total Posts : 16
   Posted 11/13/2008 4:11 PM (GMT -6)   
Congrats to you! I am currently 14 weeks pregnant and in the same boat you are. When I told my nephrologist that I was pregnant he told me "this is not good" "this is very bad" "Im not sure what to do". Then when I told my rheumy he said "so what are you going to do". My husband and i were completely shocked and couldnt believe that they reacted this way. Then we had to take a step back and just realize that they are doctors and that is the way that they think. They are willing to work with me after I explained that I was having this baby and that was final! They can tell you all the bad things that can go wrong and make you feel like it will never happen but in all honesty they dont know. I put my trust in God and not them! I am currently on plaquenil, prednisone 10mg, and imuran 100mg. My kidneys are leaking a lot of protein but my kidney function is great. Just like you I am exhausted ALL the time. I think it is just something we are going to have to adjust to for these next couple of months :). Hang in there and dont get discouraged. This is such a happy time for you.....marriage and a baby!!!!! :) Your baby needs you right now more than ever so try to stay positive and dont let your doctors discourage you.
Prednisone 20mg, Plaquenil 200mg, Imuran 100mg,
Phl 4:13 "I can do all things through Christ which strengtheneth me".

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