Can I do AP if I want to get pregnant? I have CREST

[PetRescue]

Hi everyone, I was recently diagnosed with CREST syndrome after having a positive ANA titer and suffering from Raynauds. Actually my Rheumy only says I am at risk for CREST, as I only have the “R” in CREST. She put me on Plaquenil to try and normalize my ANA titer.
I am 30 years old and have a wonderful six year old son. For the past 2 years I have been try to have another child. I have suffered 2 miscarriages, the most recent in July with a D&C.
I still desperately want another child. I am very scared that my high ANA level will prohibit this dream.
After my diagnosis I came across inspire.com and that led me here. I love AP! It sounds amazing and I actually contacted one doctor from the list (although he never responded 🙁 But after doing more research, I found that Minocin is a class D drug-very dangerous to pregnancy. I also understand that you usually have to be on Minocin or a antibiotic for a long, long time. I could do the treatment for awhile and then take a break, but I'd like to try and get pregnant soon before my CREST gets worse.

Has anyone been on AP and then gone on to get pregnant? Has anyone done AP and then gone off the antibiotics for a long time with success?

Thank you so much for any info and I love all your stories. I know that AP will be right for me in the future!
~jen

[Maz]

[user=2168]PetRescue[/user] wrote:

 
After my diagnosis I came across inspire.com and that led me here. I love AP! It sounds amazing and I actually contacted one doctor from the list (although he never responded 🙁 But after doing more research, I found that Minocin is a class D drug-very dangerous to pregnancy. I also understand that you usually have to be on Minocin or a antibiotic for a long, long time. I could do the treatment for awhile and then take a break, but I'd like to try and get pregnant soon before my CREST gets worse.

Has anyone been on AP and then gone on to get pregnant? Has anyone done AP and then gone off the antibiotics for a long time with success?

Hi Jen and welcome to the RBF forum…just so sorry you had to seek us out.

As a Mom of two, I completely understand your desire to want to have another child. At just 30, you are still very young and have some good child-bearing years ahead of you. My fellow-patient, layman suggestion, however, would be to get your health in shape, first, before trying to get pregnant. This is not only because of the need to recoup your strength after your very sad losses, but because pregancy is very hard on the body (even in a healthy woman) and, although pregnancy affords quite a bit of immune-suppression during gestation and may provide a lovely spell of remission, it is not uncommon for rheumatic disease to take off with avengence, post-partum, which could make it very challenging for you to deal with a new baby. The excellent part is that you are very early in your disease and so it should not take long for you to turn things around! Of course, only you can make this decision and just offering this suggestion to consider. 😉

That said, there are alternative antibiotics that may be used during pregnancy and breast-feeding. Tetracyclines should not be used, because they do affect fetus bone and teeth development.

My suggestion would be to contact Dr S in Ida Grove, Iowa. This lovely semi-retired AP doc is open to phone and email consults with patients and physicians wanting to learn about the therapy and he could offer insight as to what you could use, alternatively, for AP while trying to get pregnant and during a pregnancy. If you would like his contact info, please let us know and we'd be happy to fwd this on to you.

Also, highly recommend reading both The New Arthritis Breakthrough and Scleroderma-The Proven Therapy That Can Save Your Life, by Henry Scammell. These two books will explain everything you need to know about AP to get started. There is also a good deal of info on the main website under the Education tab, if you haven't found it already.

IL is a horrible state for AP docs, unfortunately. Don't know why that is, but many patients will travel to see Dr S in Ida Grove to get started on AP and to have IV clindamycin 5 day series to get themselves started with a very experienced AP doc.

Hope something here will help, Jen, and let us know if there is anything further you need help with. Again, a warm welcome to you! Lots of sclero folk here who can support you on your road back!

Peace, Maz

 

[mschmidt]

Jen,

Welcome to RBF.  I'm sorry to hear about your diagnosis but, glad that you found us.  I'm faced with a similar question, after receiving treatements now for 1 year for Scleroderma.  My great AP doctor told me to make sure I was in remission before I attempted to get pregnant.  I'm at a crossroads because of my age (will be 40 in 2 months, and scleroderma hit me at the age of 37, when I was planning to have a child).  I've read  A LOT of information about pregnancy and rheumatic diseases in general, and there are very differing opinions about it.  I've attached some links for you to look at, as it is a judgement call between you and your doctor.  There are definitely some risks involved, and unfortunately, there hasn't been a large number of women studied, at least in the U.S.  I know of a woman with CREST that gave birth to 2 healthy babies, without any flaring or progression of her disease, and she was on biologics prior to her pregnancy, as well as prednisone and procardia for her Raynaud's.  She stopped all meds during the pregnancy, and her babies were both underweight, but healthy.  I also know of some other cases where women got really sick after the birth of their baby, or miscarried their pregnancies.  Here are the links:

http://findarticles.com/p/articles/mi_m0CYD/is_3_38/ai_97850494/

http://www.obgyn.net/english/pubs/features/…/iqbal/Scleroderma.ppt

http://www.ncbi.nlm.nih.gov/pubmed/17499711

[Lynne G.SD]

Hi Jen.
     Welcome to our ever increasing gang.After almost 11 years on AP and a good remission I am starting to back slide.Doctor now suspects I have Lyme just as so many others with SD.I strongly urge you to get tested as Lyme can be passed on to the baby and that is something you would not want to do.
                         Lynne

[carries]

Hi! I worry about the samething….I am 34 years old and i want children. I have none right now….and I havent tried for any yet…..but when the time comes i want to know if its safe and what options i have. So I will keep checking this topic for great insights that you receive. I know my dr did the test to see if I would miscarry and that test came back normal. This week I will go take another blood test to see if i am ovulating at all…..my periods are very normal and every 28 days….but i guess that doesnt mean you are always ovulating……So right now I am lining up all the tests that i need to do to prepare for this day when i will start trying. I am first trying to achieve remission first like the rest of you!!! I do know that plaquinil is safe to use during pregnancy as well as prednisone…..but obviously i would try not to be on any meds.

[PetRescue]

Maz-That was a lot of great info-thanks! I did get Dr. S's info-I just emailed him today. I just saw my OB/GYN yesterday and told him of my CREST and he thought my diagnosis was wrong as I only have Raynauds, so it is not something we should treat. His wife actually suffers from Raynauds as well and had an elevated ANA and she is fine. Of course that doesn't mean I will be fine as well, but it is hard to treat something when you don't even have a definite diagnosis.
I absolutely agree that I should get my health in line first, before becoming pregnant. I am lucky to not have any health issues, except my ANA and Raynauds and this possible CREST. I don't have any fatigue, soreness, pain, so I'm not sure if I even need treatment (although I would feel better to be proactive).

MSchmidt-I wish you luck in your decision to start a family. It is so hard to read about sclero and pregnancy because as you said, there isn't a lot of info and I believe the info there is can be misleading. I've read there is no increased risk with sclero and miscarriage, whereas there is a TON of research linking autoimmune diseases to miscarriage. I'm going to see a reproductive specialist in Evanston in April to discuss the possible link and the use of IVig-which is also another treatment for sclero. It is encouraging to hear of the woman with CREST who had two children-I've heard that prednisone can help prevent miscarriages, but I'm hesitant to go on that, but at the same time, I also want to stop having miscarriages!

Lynne-I've read about the link to Lyme, can your regular doctor do a test for that? How can I convince them to test me for that?

Carrie-There are a lot of options in reproductive medicine. That is one area that if you have the money, you can almost guarantee you have a child. What test did your doctor do to see if you would miscarry? I've had almost every test done, and everything except my ANA's came back completely normal and I've had two. Strangely enough, they don't even recommend testing ANA's for miscarriage and I had the test done by my PCP because of Raynauds. I've heard Plaquenil is safe, but it is a class C drug-so I'd like to avoid it. Prednisone I believe is harsher on the mothers system, but it is used so often in reproductive medicine, I trust it more.

I guess the hardest thing is that most of my doctors are saying I don't have CREST-so how do I get treated for something I don't have! Do I believe them or know in my heart that something (most likely an auto-immune disease) caused my miscarriages?

What do I do!?!?!

[Trudi]

[user=2168]PetRescue[/user] wrote:

I've had almost every test done, and everything except my ANA's came back completely normal and I've had two.

Have you had the test for the MTHFR DNA mutation?

http://www.stephenwellsmd.com/html/mthfr.htm

Take care,

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[PetRescue]

Trudi yes, I have been tested and am heterozygous for the C677T and negative for the A1298c mutation. I saw a MFM specialist and he said because my homocysteine level was normal I am OK. I do however take lots of extra folic acid anyways-just to be safe!
Thanks for the info!
~jen

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