HealingWell
Search Close Search
☰

Autoimmune confusion

Support Forums
>
Lupus
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/19/2008 3:46 AM (GMT 0)
Hi, I've been reading your posts and have a question for all of you....I am a 36yr old mother of one who has been having lots of symptoms of immune system problem, but after a multitude of tests all my immunologist can diagnose is "autoimmune confusion" - for some reason my immune system is attacking itself.

I have been on plaquenil 400mg for about 8 months and am now starting to take imuran 50mg. We have been trying for another baby and after 4 miscarriages have just about given up - my specialist assures me that this medication is safe to take even during pregnancy, and that it may even help to get pregnant.

I would like to know if any of you took these drugs during your pregnancy, and breastfeeding and whether there were any side effects.....I can't seem to find a lot of information on this, so hoping that I can find someone else who has been in this situation.

Thanks so much for reading this and hope to have a reply soon,

Kind regards,

karen2259 smhair

Posted 10/19/2008 2:23 PM (GMT 0)
Hi Karen and welcome.  I can' really comment on the meds and pregnancy since I had my kids before I got sick.  But there are other women here who are either pregnant or who have had babies while taking their lupus meds.  One question I have is if your doc tested for the lupus antiphospholipid (sp?).  My understanding of it is that if you test positive for it, it does increase your chances of miscarriage by a lot and being on medication for it will help.  Here's a link that explains it better than I can  http://http://en.wikipedia.org/wiki/Antiphospholipid_syndrome I'm really sorry to hear about your miscarriages.  I had one in between my two kids and it was one of the most difficult things I have gone through in my life. I'm glad you found our forum - I think you will find a lot of support and understanding here.  It's very common to be in diagnosis limbo, and it can be frustrating at times.  The good thing is that your doctor is treating your symptoms. Let us know if you have any other questions.  Take care.
Posted 10/19/2008 5:11 PM (GMT 0)
I would suggest you see a rheumatologist with experience of treating autoimmune connective tissue diseases like lupus, and a high risk ob/gyny. You need to be well informed about your disease and how it is affecting you or might affect a pregnancy. The meds you are taking suggest that an autoimmune CTD is what you have although it is puzzling why your doctor is so vague. Assuming you have lupus or something very similar, the tests for APS would be done routinely and certainly after repeated miscarriages. You also need to know if you have the anti Ro/ anti La antibodies or maybe anti RNP which can rarely cross the placenta and cause problems for the baby.

It is advised to be stable for six months before conceiving and preferably to be in remission and off all medications. If you are just starting on another med it sounds as if your lupus isn't well controlled yet.

Plaquenil is often taken these days although usually at a lower dose to further reduce risk. Imuran can also be taken during pregnancy. An expert talking on a recent LFA webchat said that the risks of fetal abnormality were not found to be greater than in the healthy population not taking Imuran, about 3% if I remember rightly.
Prednisone can also be taken if necessary.

If it seems that the miscarriages might have been caused by APS then heparin would usually be suggested.

The specialist experts who are responsible for your well being and that of the baby can advise you best. There are specialist sites for breastfeeding and drugs, but there again you will be advised by your experts. But first things first !
I have never heard that lupus means reduced fertility nor that Plaquenil or Imuran increase chances of conception.
Some immunologists have a special interest in AI CTD's but I doubt that most would consider themselves sufficiently expert to be advising about lupus pregnancies. I think you have some homework to do first before taking such a serious decision and a second opinion would be a good idea.

Good luck

BB
Posted 10/19/2008 7:55 PM (GMT 0)
take a good look at my signature. I took all of that except skelaxin, tramadol, and cellcept during my latest pregnancy. I would get my condition under control. I was in remission with medication when I became pregnant. My son will be 6 months old in a few short weeks. He is healthy and thriving. You need a rheumetologist. You also need a high risk specialist. I would suggest consulting a reproductive geneticist as well. All my doctors advised against breastfeeding. Breastmilk passes antibodies to the baby and if your immune system isn't normal it can pass abnormal immune processes on at least temporarily- none of mine knew for sure how bad it was or how long term it would stay in the child's immune system but they all agreed it wouldn't be best for the child. Then there is the fact that ALL medication passes into breastmilk in some amount. You need the medication to be healthy enough to care for your child but the child does not need to take the medication too.

I will say that I breastfed my older 2 children before I was dxed and they had more health problems early on than my son has had. The part of your immune system a child is born with is replaced by the time the child is a few months old with the child's own immune system. Continued exposure to abnormalities might have a lingering effect but it is impossible to know for sure.

That aside breastfeeding was a wonderful experience I wish I could have with my son but bottlefeeding does have some serious benifits- I always know he is getting enough to eat, hubby can feed him if I am unwell, he sleeps longer than breastfed babies do, I don't always smell like sour milk, my breasts are not painful every few hours, the list goes on and on. I personally advocate for breastfeeding whenever you can but with anyone who has autoimmune issues I think you need to seriously think twice.
Posted 10/29/2008 11:34 AM (GMT 0)

Thankyou all very much for your replies - it helps to know that others understand.

I have been continually tested for lupus, but the tests never show the markers for the condition, nor do the symptoms I have indicate lupus.

I suffer continually from hives - covered from head to toe, dry mouth and eyes, tiredness, raynauds, blotching from phospholipid defiency and have now had 5 miscarriages. The symptoms all point towards an autoimmune disfunction of some kind, but they cannot seem to pinpoint exactly what it is.

I' getting frustrated, but hopeful that I can have a diagnosis soon, and that the medication I am taking can start to make me feel well again.

Take care,

Karen xx

Posted 10/29/2008 10:36 PM (GMT 0)
Hello Karen,

I have chronic hives as well, so I definately can relate to you when it comes to that! It sucks so much!!! Do you have edema as well? My lips and eyes swell up on me often too. I find that prednisone helps quite a bit, but as soon as I start to taper down and get below 10mg, the hives and swelling comes back. I have been on 200mg Plaquenil for going on 3 months and it has helped me with the hives and swelling as well. I definately notice a difference lately, but I am now starting to take 400mg of Plaquenil a day and hopefully that can get me off the prednisone or if not to a lower dose. Do you take either of those meds?
Posted 10/30/2008 2:40 AM (GMT 0)
Ummm . . . the anti-phopholipid feature in your blood IS a lupus marker. See the links at the end of my signature "4 of 11 Criteria". If you click that link it will show the criteria for diagnosing lupus. You only need four of the eleven. Are you seeing a rheumatologist? If not . . . that would be the doc to see to get a diagnoses. I didn't have time to read the responses from the others . . . so I hope I wasn't duplicating info . . . but I wanted to mention those couple of points. Welcome to the forum! Blessings!
Posted 11/1/2008 12:13 PM (GMT 0)
Thanks for the replies....yes, Kara, I do get edema as well....swollen eyes and lips which look like I have been hit. It doesn't help that I am a school teacher, the questions from the kids can be constant, and I can never predict when they will come on. The edema on my feet, however is the worst...walking is so painful when the hives are on the soles of my feet.

I am currently taking 400mg plaquenil, which didn't seem to make a difference and am now on 200mg imuran (in addition to the plaquenil) to try and alleviate the symptoms.

I am hoping they arrive at a conclusion soon, and thankyou for the lupus checklist...it seems that some of the symptoms that I have could be pointing towards a lupus diagnosis. It would be nice to have a definite answer.

Take care,
Karen xxx
✚ New Topic ✚ Reply