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Mom looking for help

334 Views 9 Replies 7 Participants Last post by  LolaLola
Hi, My name is Petrina and my daughter Jenn is 26 and was diagonised when she was 20 at college in Boston. Life has not been easy for her leaving her drs. in boston and trying to find ones in Jersey. She will be married for two years in the spring and wants to start a family. She is on shots of plaquinal tries to stay off steriods and other usual meds. She just got shingles for the second time in two years and the holidays for here were very sad. :sad:

How can I help her? I know she needs to talk to others who also have lupus but that is a hard step for her. She talks about her illness to us or people who have questions but will not reach out to a center or group. I think this would be a great step for her to meet people who can truly understand.

Anyone any advise? Any drs.???? New york, new jersey, Penn? Anyone else who had a baby on meds? Help me please. Petrina
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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.
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Hi Petrina and welcome. Maia gave great advice to you. Where in NJ does Jenn live?
Hi Petrina,
Welcome to the board. Have you looked into local support groups with the Lupus Foundation of America? Their web is They show all the chapters which you can then follow to find a local support group. If she won't go, you can go on your own.

I agree that plaquenil is usually a oral medication while methotrexate is given in tablet, injection, and intravenous forms. I've taken all 3 along the way.

I agree with the previous post which advised to have her work with a ob/gyn who deals in high risk pregnancies. Her rheumatologist must also be in on this decision about considering any pregnancies. It could be that she may be taking a medication which could be prohibitive for pregnancy.

Good luck to all of you.
Hi to everyone. I did have it wrong. She is on shots of methotrrexate and oral plaquenil. I can't really say she has been out of a flare up for the years she has been diagonised. That's what seems to get to her all of the time. While she knows that no day will ever be pain free.......the days don't seem to get much better. In Boston she seemed to have better results. I have suggested for the new year we work on a new plan. We are in North Jersey Vernon. Thanks again. I'll stop by. Petrina
We both live in Vernon. I grew up near Newark. I moved up here early 80's to teach.

Where in New Jersey are you KarolH?

Have a good day. Petrina
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.
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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.

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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.
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Dear Petrina,
I am sure your Daughter will be glad you are getting accurate up to date advice on her illness. I bet you can't wait to be a Granny! Are you pretty healthy yourself? If so you will be invaluable to her. She is obviously well motivated which is a good thing. One thing when your Lupus is unstable,it means you have to take every little bit of help you can. Medications are not the whole answer, learning to avoid stress, someone to talk to, perhaps some good physiotherapy or massage,all sorts of things can help a little. Having a new plan for the New Year sounds like an excellent idea.
I am sure as a Mum you worry a lot, but the strange thing is Lupus seems to attack people who are hard working and resilient, so she probably copes well!
X Lola
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