Mom looking for help

Welcome to the site... of course I wish you had no reason to come here though....

Different people deal with lupus in very different ways - and there is not necessarily something wrong with her not wanting to reach out to other people with lupus in the form of a local support group or on the web. Everyone has their own way of coping - and their own individual level of need for reaching out to others to share their experiences and hear from others. Some people will find it more depressing to hear about more severe cases than their own for example.

So, I guess I would offer her the information you may find to let her know it's out there (this site address for instance or any local support group meetings). But don't be taken aback if she declines to participate.

As for questions on pregnancy - yes many here have had successful pregnancies with lupus while on medications. If she is only on Plaquenil and is relatively stable in her disease then pregnancy is usually not a problem - be sure she discusses things with her doctor and possibly a high risk OB-gyn though. Although if she is taking shots I have to wonder if she's on Plaquenil which is typically a pill or if she's on methotrexate which does come in shot form - methotrexate and pregnancy do not mix well!

You can read the pregnancy forum for additional information/questions/stories and successes about women with lupus and pregnancy.

Welcome again and write back if you have any additional questions.

Some women will be switched to Imuran when they want to have a baby. Has she tried this medication yet? It is safer to take while pregnant. Also, if she has not improved at all on methotrexate then it may be a good idea to try something else of go off it.

Sometimes a second opinion from another rheumy is a good idea even if you are happy with the current doctor overall - another set of eyes on a problem is almost always a good idea.

Methotrexate and pregnancy is a big no-no (in fact methotrexate is used to induce abortion in very early tubal pregnancies). I was not quite in remission when I decided to have a baby, but I was able to work and do after work activities & felt like the pain and fatigue/etc. were all "good enough" that I could handle caring for a baby/child even if it didn't get any better.

Best wishes to you and her for a better 2009.

I was recently switched to imuran from methotrexate and it has really worked so much better for me. My lung hasn't felt this good in 3 years! I am not trying to have a baby though....I am trying to survive raising two teenaged girls!

So, this may be something she could talk to her doctor about. It does take a while to get up to the dose she may need of imuran.

I had my kids before I was diagnosed wit Lupus. However, I know people that have had children go into remission and felt the best they ever had with their illnesses. It's not a guarantee, but it does happen that way for some.

Good Luck. Being informed yourself about the disease and what people go through will be a benefit to you and your daughter.

You are a good Mom.

Annette

Patrina,
I am sorry that your daughter is having a hard time with this but she is not alone. Many of us before this site felt alone. It is very hard to leave a doctor that you have trusted with well your life. I am glad she is still thinking of all the normal things like marriage, family, and education. I too am a mother so I can understand where you are coming from, so I will speak to you as a mother with sle lupus.

The best way to help her is to be supportive of her in everything. It sounds like you are there already so now, have you talked to her about the great site that you found? Let her know that it is for her, family, family to be, and friends. You might even get here sometime when she is at your home and show her. There is a chat room you can go into and talk live with other people with lupus and some that are like you and trying to help others they love. I would love to talk with her and give her someone to talk with about whatever she is comfortable with.

There is a part of the site that let's you post to find a doctor in your area and find out which one are better at treating lupus people. You will get replies from people that are in your area that are being treated or have someone in your area that are being seen. It is helpful and you can help her that way if you want.
You can even email me yourself if you would like would love to talk with you also. I hope that you and your daughter stay as close as you are now.
Tammy