APS and my Pregnancy. Advice?

[lkn89]

Hi there, I’m a newbie and am so happy to have found you guys.

We lost our baby girl a few months ago at 22 weeks

I tested positive for antiphospholipid antibodies when I was a little younger, but it was never a concern until I got married and wanted to be on birth control. Only then did we realize we might have an issue. Before we became pregnant, I consulted with a few doctors and they did not recommend being put on lovenox because I technically was not diagnosed with APS, being that I previously had not had a blood clot or miscarriage. To thicken the plot, I have had a condition known as ITP (idiopathic thrombocytopenia purpura) since I was 12, which essentially means I have low platelets. This is why the doctors were on the fence about being on lovenox since it is a blood thinner and could risk lowering my platelets even though they have been stable, but on the lower end.

I became pregnant, was put on apsirin and did not start a prophylactic dose of lovenox until the 11th week because there was so much concern about lovenox interfering with my ITP. It was left up to my husband and I. We weighed the risk and decided that it would be better to be on it. During my 18th week, I started developing stabbing pain in my other toes. I couldn’t walk, couldn’t sit normally, had trouble going to work and not crying from the pain. The pain worsened and I was referred to a rheumatologist, but it was taking too long because of insurance issues.

I also got a blood test to check on my platelets and they were 30, which is pretty low, so we decided to go to the hospital.

Everything quickly went downhill from there. My platelets kept dropping despite being given IVIG a few times. I started developing pain in the middle of my chest, at first it felt like heartburn, but would not go and worsened. It started to become a stabbing pain and was so excruciating that I thought I might be suffering from a heart attack, I couldn’t move. We had so many questions. What and why was this happening… what is going to happen to our baby… no answers. I had constant pain in my chest, back, toes and now developing in my hands and fingers.

They told us we had to deliver our baby in order for me to survive. I am suffering from preeclampsia, there are blood clots in my placenta and our baby is suffering from intrauterine growth restriction.

Post delivery my blood pressure skyrocketed and I endured constant pain in my hands that were very swollen and covered in red spots. They determined it was a form of vasculitis. With time and a lot of meds, my blood pressure finally regulated and the pain in my hands, fingers and toes lessened. I still have slight discomfort in my fingers and toes from time to time. My platelets have stabilized and I have been continuing 400mg of plaquenil daily.

We now understand I surely have APS and that it increases my chance of suffering from preeclampsia. I am very nervous for next time, losing another baby, but we want to try again despite the doctors saying that it isn’t a good idea. Our faith is what keeps us going, and your stories have been encouraging.

We are thinking that I should be put on a therapeutic dose of lovenox and much earlier as well. I have found a great hematologist, but have yet to meet with the high risk OB I would like to see until I am able switch my insurance.

Would love some advice and hope to hear from anyone who has similar stories of the inclusion of ITP, or what this vasculitis is. Thank you all. <3

[MaryF Administrator]

Hello and welcome, sorry for your loss and the difficult situation you find yourself in. Our charity website ghic.world/ contains a list of specialists across the world, if in the UK we also have a list under pinned posts over on the right hand side of the forum.

It is vital that you have a specialist who fully understands Hughes Syndrome/APS and has a working knowledge of this condition. We always advise our members to also make sure their Thyroid is working well and that regular tests are done for this plus also to check the levels of Vitamin D, B12 and Iron etc.

A specialist who does not understand the whole picture will not really understand how to help you. This forum is full of people who have had situations like yours and improved with the right medical professional.

Mary F

[lkn89 in reply to MaryF]

Thanks for the advice and the link to the specialists. I do have deficiencies in some minerals, but take supplements for them. Thank you

[lkn89]

Thank you for your reply and for the link to the website. I live in Los Angeles and found a couple doctors on the list that are present here. I really wish I was able to get in touch with an APS specialist OB, but it doesn't seem like there are any on the list. Hopefully like you said, they will lead me to one though. Thank you

[KellyInTexas Administrator]

I also had severe ITP, but in infancy. ( 18 months old) - no viral infection leading up to it.

This was in 1970 in Ft Worth, Texas. At that time I was not expected to live. It was classified at that time as a ,” blood Disgrasia “.

I was given very high doses of steroids- and hospitalized for several weeks.

I was diagnosed almost 2 years ago- so past my child bearing years.

I am now 49, and have two children despite having been through several early miscarriages .

I was checked for platelets each pregnancy since ITP was in my history , and did ok in that regard. There is hope, but you are really going to need some highly specialized care. Is sure wait until I found that care.

It’s possible to clot and bleed simultaneously- I believe that is what it sounds like happened to you.

Which state? Where are you?

[lkn89 in reply to KellyInTexas]

You were a strong baby What happened to your ITP later on? Thankfully you didn’t have any major complications with the pregnancies of your two children.

My ITP never went, but has been stable for the past 10 years after being on steroids for quite a while. We thought that the ITP might be a slight issue with pregnancy, but little did we know we would get hit by this major complication...

I’m curious with the link between ITP and APS. ITP can come as a result of APS, but it seems we firstly have had true ITP. When I ask such questions, doctors simply point out that when you have an autoimmune disease you are susceptible to getting others and that they are within the same family.

Yea it was so confusing to me that we can clot and bleed! I understand now that there are different mechanisms involved. I’m in Los Angeles and hoping to find someone who is super knowledgeable about APS and pregnancy. We are hoping to try again next year and until we have more answers.

[KellyInTexas Administrator in reply to lkn89]

I’m on the crazy back to school schedule this week ( have a 16 year old) so Friday I will calm down- but two things for you quickly:

1. Dr Daniel Wallace in LA is who you need- I’m sure you already figured that out. He’s a Rheumatoligist- will get you to all the other specialists.

2 I wasn’t expected to live with my ITP. Hematologist wanted to remove spleen but said I would not survive surgery. My doctors now think because I was administered so much steroids, it reversed early caps I was in. ( because in about 6 weeks I turned a corner.) Who knows.

It did weaken my system. I was in and out of the hospital quite a lot with respiratory infections as a really little toddler. By age 3.5-4.0 I remember being a pretty normal kid.

( until I hit university... then just GI dysfunction... poor sleep/ stress/ no more beautiful home cooked meals from the vegetable gardens outside... tranquility gone!)

[lkn89 in reply to KellyInTexas]

Thanks for the suggestion of Dr. Wallace, I actually didn’t know about him until these replies and that website, so I'm pretty excited. Sorry for the difficulties. Wishing you a healthier future.

[Lauren2121]

Hello, and I’m so sorry for your loss. I think so many of us here know that pain. I second what was mentioned above about giving yourself time to heal before trying again. Also, at the suggestion of a specialized practitioner, I just stated reading “is your body baby friendly” by Alan Beer, and have found myself a reproductive immunologist. It all makes so much sense as I read this book. I’m still on my journey and certainly don’t have all the answers. But what I’ve found for myself is that lovenox/blood thinning alone might not be enough. Prayers to you for your full recovery, health and rainbow baby. 💗

[lkn89 in reply to Lauren2121]

Hello Lauren, thank you for the book suggestion! My heart is with you as you journey on this tough road. It is so frustrating not having the answers. Sending prayers your way ❤

[lkn89]

That's amazing. Thank you!

[gemmaaps]

I am so sorry for your loss. I lost my baby girl in April at 20 weeks due to the placenta only working 60% caused by clots. I was diagnosed with APS at 12 weeks and put on clexane injections but only the half dose. My platelets then dropped down after giving birth and they were struggling to stabilise them. When the dropped to 7 I was offered a treatment called rituximab. This worked for me and now my platelets are at 200. But this means they advise not to try for a baby until 6 months as they don't know how my body is going to react. This also gives me time to mentaly recover and try get my body as healthy as possiblr. I am on warfarin but as soon as I get my positive I will be back on clexane and aspirin. Good luck on your journey. I really hope you get your rainbow baby 💕