APS PLUS Chronic Intervillositis of Placenta....not good

[MStiff]

I just got my test results and found out that I have Chronic Intervillositis of Placenta- dovemed.com/diseases-condit....

I have never heard of this so of course have been doing research and it is a rare and poorly understood disease with no real "treatment." Some people have had success with a combo of clexane, aspirin and corticosteroids but I just don't know.

I am devastated, been crying all evening; it seems the chances of a successful pregnancy are lowering by the day I looked at my odds and they are not good.

Does anyone know of having APS and Chronic Intervillositis? Just a recipe for disaster but they are both immunologically based.

Is there anything else that might help autoimmunity? I have tried all sorts of autoimmune Paleo type diets to no avail, in fact, it made things worse because I lose my menstrual cycle so couldn't have conceived to begin with...

I am just so confused and don't know where to go from here.

[daisyd]

I am so sorry, I really feel for you I have never heard of that condition but I am sure someone on here will, just to say I am thinking of you

[Manofmendip]

Hi there.

I have never heard of this condition but I hope that others on here may have and may be able to give you reassurance.

Who is managing your APS and this new condition, they should be supporting you and giving you advice.

Best wishes.

Dave

[MaryF Administrator]

Hi, sorry again about your difficult news, this does occur with a variety of autoimmune/inflammatory diseases and seems to crop up with Hughes Syndrome/APS. Let me know if you want any medical papers to read, not wishing to overwhelm you with information etc. MaryF

[MStiff]

Hi All,

Thanks for responses. It is a fairly common result of APS for sure. I am just upset that my rheumy didn't insist on me being on aspirin as well as clexane. Also chloroquine may have helped? I don't think I can get hydroxychloroquine here, does that really make a difference?

I would love more information Mary- please let me know where I can get it.

Thanks again!

[Burtie-bengal]

Hi

I've been lurking on here for a few months due to the loss of my daughter at 21 weeks in May.

I just saw your post and u had to join. I'm so sorry for you loss and so so sorry they found chronic intervillositis. It's also known as chronic histiocytic intervillositis or CHI. The outlook isn't good I'm sorry to say. There has been limited success with heparin, asprin, plaquenil and steriods, also IVIG.

I have been in touch with a lady called Clara who has a very similar condition( massive perivillous fibrin deposition) she has a blog called loss through the looking glass and will answer your questions and send you loads of info. She has been succesful in having a baby with a surrogate.

Also another lady who I haven't spoke to. She is called Claudia and has a blog called silent love. She has lost 4 babies to chi.

A doctor in the uk mr shehata has treated ladies with this condition. His website is the miscarriage clinic. He uses hydroxychloquine.

I did not have CHI in my placenta but I had pervillous fibrin deposition and googling that I found out about the other conditions. I have been told mine is down to aps as I had a positive lupus anti coagulant but something keeps bringing me back to chi as pervillous fibrin is found in chi and I don't trust my pathologist as she didn't know what chi is and according to a report I found about 76% of pathologists miss it.

I'm pregnant again about 6 weeks and I'm not optimistic. I'm being treated with heparin and asprin with the nhs. And I'm self treating with plaquenil and 20mg prednisone as I feel I need to give it my best shot. ( just to say I don't recommend self treating but I see a dr peatfield for my thyroid and have to get my drugs on line for that's so I trust where I get them)

Gemma

[MStiff]

HI Gemma,

I only saw this reply now but thanks so much for writing!

I did find the CHI Facebook support group and it has been very helpful- you should join! While there are lots of stories of losses, there are also lots of successes!!

Please try to stay positive! The fact that you are pregnant again is amazing! I really believe that with auto-immune disease the stress causing an increase in the flare and inflammation.

I think you are doing the right thing in your protocol- those are all the things I would be using in my next pregnancy too: heparin and aspirin, chloroquine and maybe 10mg prednisone (one doctor says yes, one says no).

How are you feeling being on the prednisone?

Feel free to PM me and/or we can exchange emails....I am thinking of you and am here if you ever need to chat!

Huge hugs!

[Burtie-bengal in reply to MStiff]

Hi

Just seen this and just wanted to update you.

Fortunately my treatment was successful and my daughter is nearly 11 months now.

Everything was good during the pregnancy I was scanned every week and I had an elective c section at 36.5 weeks.

Hope it all works out for you x

[Oliversmum]

Wonderful news! So nice to hear success stories!