Hello Everyone,
I was introduced to this forum by a friend of mine, Neelima. She posted a request on behalf of me seeking advice for lupus. I am gald I have such wonderful friends and I was overwhelemed with the responses. Thanks for all the suggestions.
I have been diagnosed with DLE (discoid lupus) in OCt 2007. It started with 3 spots of hair loss on my scalp and my doctor prescribed a medictaion of 2 plaquenil pills per day and ocassional (once in 2 months) blood tests for me. Initially I was very worried, but later I started taking it in my stride, I started maintaining a healthy life style, excersising etc. Around May 2008, my doctor saw that my lupus was worsening, he prescribed injecting local steriods to my scalp once in a month (for 3 months). We startted planning for a kid in July 2008 and my gyanecologist adviced me to stay off any medictaion once I conceive. The condition of my lupus improved a lot after I changed my lifestyle and eating habits and my doctor even reduced my dosage to just one pill per day starting October. I conceived in September, only to reliase it was an ectopic pregnancy. I underwent an emergency laparoscopy to terminate the pregnancy. During that one month, I was not taking any medication for lupus and may be because of the mental stress etc, my lupus worsened even more.
I visited my doctor in Jan 2009, and the number of spots increased from 3 to 6. He gave me the local steroids again and he was worried about me not taking any medications during my pregnancy once I conceive. I was just wondering if its ok to stop taking plaquenil and continue with the local steroids during pregnancy(according to my doc, the steroids are just local and they are not injected into the blood streams). I am trying to conceive, but it really worries me if I will be able handle it with the way my lupus is worsening.
Please advice. any suggestions are more than welcome.
I am worried about the baby more than myself.
Thanks for your time,
A..
Sorry to hear about your recent difficulties and diagnosis. However, don't be discouraged! There is help. A great friend of mine recently helped a man with lupus to reach a new level of wellness and reduce his meds. Just e:mail me and we can set up a time to connect the two of you. H. ____@____.com
I think that part of your question should really be answered only by a competent doctor who has access to all of your medical information, and who you trust. I would be very leary of any information related to taking medication from an open forum.
But what I was hearing you say is that you are stressed about this. I think it would be helpful for you to find a way to destress. Whether you meditate, exercise, or dig in deep to find out what is the root of your stress that might even be causing your Lupus to be better or worse. I am reading a book right now that says that the root of almost 90 percent of our illnesses are related to our thoughts. And I am sure that if I were experiencing what you are going through, my thoughts would be all over the place, and my stress would be high. If you can get to where you are in control of your stress levels, then you would have a much healthier pregnancy and maybe even you :)
PS The book if you are interested is "Who Switched off my Brain" by Dr. Caroline Leaf. It is a smallish book, but has a wealth of information on how our thought life can either make us sick or healthy, and if we are making ourselves sick how you can start changing your thought patterns to make yourself healthier. She even talks briefly about the impact of stress on a pregnancy and the baby.
My best to you, hopefully you get some really great advice, and will have a happy healthy pregnancy!
A.,
email me ____@____.com J.
Dear A.
Pregnancy is stressful enough emotionally and physically so you definitely need to have support. I never wanted to be on any meds while pregnant just because I didn't know what it would do to my babies - too many side affects. I have two friends with Lupus that have had amazing results with a patented food supplement created by a food science company. It gives your body what it needs to be healthy and heal itself. God gave us amazing bodies we just need to feed them correctly to do the work they were intended to do :) Sounds like you needed to follow a good diet too so this might be something for you to check out and see if it is something for you.
You can email me if you want additional info.
Blessings,
L. O
Hello!
I have lupus with kidney failure and had to conceive with my two kids after chemo therapy. I waiting though until I was able to get weaned off the medication though. I was on plaquenil from 1999-2001 and got weaned down from my prednisone from 60mgs to nothing. While I was pregnant I was so great I never felt better! For some reason our lupus either better or worse after pregnancy is another story!! I am sorry you asked a question! I am gonna answer it! If you want any information about my experience feel free to email me anytime!!
OK,my suggestion to you is to go to a high risk OBGYN that knows how to handle lupus patients. My OB sent me to a genetics counseling and sent me to a perinatologist to see what is going on during 3 or 4 times during the pregnancy. He took really good care of me and had me on call 24 hours a day, and he was extra cautious and he got me thru 2 healthy pregnancies. I was the only patient to get to 38 weeks gestation in the whole hospital!! I still have all my records so if you want I can see if I was on plaquenil during my pregnancy. I thought I was on something for my lupus but I don't remember for sure. I had a TON of things happen during my pregnancy that we anomalies. So, if I were you I would try to find the best OB, someone you trust. I am sure that I was taking something extra for my lupus--maybe not though cause I was in remission for 6 whole months before I started to conceive as per my doctor. My lupus doc and my OB worked together throughout both my pregnancies. I am sorry if I sound like I am going rambling!! I am trying to write this and talk to my kids!! Anyways, you can talk to me anytime if you would like! I have a support group on myspace and facebook for lupus and they are awesome!
A., Here is a link for you to watch.
http://www.youtube.com/watch?v=q_wdZIm5Ros&feature=Pl...
Please watch the video than if you would like go to www.marketamerica.com/pamrorman and research opc-3 if you would like to speak to others that have lupus and the results they have had with our products or if you just want to speak with me to answer any questions just send me a pivate message or e-mail me at ____@____.com.
