Is breathlessness a symptom of APS? - Hughes Syndrome A...

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Is breathlessness a symptom of APS?

kateg84 profile image
16 Replies

I am pregnant and have had one previous pregnancy which ended when i lost my baby at 22 weeks and from the very beginning of each pregnancy (the first 2 weeks) I had extreme shortness of breath on minimal exertion, for example walking a very short distance or getting dressed can have me huffing and puffing and exercise e.g gentle swimming which I have no problem with when not pregnant has me out of breath for about an hour, so I don't exercise when pregnant. I never had any problem breathing when not pregnant. My GP thought I have a kind of pregnancy asthma and put me on inhalers which help a little, but since I'm newly diagnosed with aps I'm wondering now could it be related. My consultant who tested me for aps didn't seem to think the two were related though. I'm on aspirin and heparin injections for about a week now, I still feel breathless but I feel as though it's improved a little bit. Just wondering if anyone else had this?

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MaryF profile image
MaryFAdministrator

Hi, I can't offer medical advice, however please do get this regularly checked, if it becomes uncomfortable see medical advice, as it is best to be over monitored rather than under in these situations, is your team looking after you well? I was a bit huff and puff at the end of each pregnancy, but all was ok! MaryF

kateg84 profile image
kateg84

I'm only 10 weeks pregnant so I don't really have any excuse for the huffing and puffing, but maybe it is just a kind of asthma. I have my first appointment in 2 weeks time but I've been assured by the nurse there that I will be watched really carefully

Salty profile image
Salty

Kateg: For patients with APS, the first thing that should come to a doctor's mind if you have shortness of breath is PE, pulmonary embolus which is blood clotting in the lung arteries because it can be fatal if the diagnosis is missed. PE may cause chest pain and shortness of breath, but it can also cause just shortness of breath, just chest pain and sometimes it can present in less typical ways. It may cause an increased heart rate, decreased blood pressure, increased breathing rate and/or decreased oxygen level, but sometimes all of these things are normal. It can also cause specific EKG changes. Pregnancy is a hypercoagulable state for all women and APS is a hypercoagulable condition, putting you at higher risk of blood clots than the average woman. Heparin is the treatment for blood clots, but you are likely on a lower dose than is currently used to treat blood clots if you have never had a blood clot.

I would recommend you see an internist, not an OB, and let him/Or her know you are having SOB and want to be properly evaluated to be sure it is not blood clotting in your lungs. They should examine you, listen to a detailed description of your symptoms, and check your vital signs. Based on all of that, If they are concerned it could be PE, unfortunately the only way to definitively rule this out is with CT scan or V/Q scan, both of which expose the fetus to radiation. The d-dimmer blood test cannot be used reliably in pregnancy, becuase pregnancy causes elevations in the test.

Lure2 profile image
Lure2

Well said- I agree with Salty. I have pulmonary embolism and pulmonary hypertension and it goes with APS.

This was the first thing I thought of when you mentioned breathlessness. Ask them perhaps also to give you an Echocardiograhpy if necessary.

Best wishes from Kerstin in Stockholm

kateg84 profile image
kateg84

thanks for the replies. is an echocardiography safe for my baby?

Lure2 profile image
Lure2

Hi,

I should not have mentioned the Echo as I am not a doctor and I do not want to worry you. I have made several Echos with doppler to diagnose my pulmonary hypertension. It is quite harmless for you and hopefully for your baby. It is important to get it medicaly checked though.

Best of luck from Kerstin in Stockholm.

kateg84 profile image
kateg84

No I understand. I don't have any chest pain so hopefully it's nothing too serious but I found it quite strange and worrying in both pregnancies because I've never had any asthma symptoms when not pregnant and the from the moment I'm pregnant I am really short of breath. I will bring it up with my doctor.

Jo60 profile image
Jo60

Hi kateg84, just a thought - have you been checked for anaemia? I found myself breathless towards the end of the first trimester of my pregnancy, and a routine blood test showed I had mild anaemia (didn't feel very mild!). I had been diagnosed with primary APS after several miscarriages, and consequently prescribed heparin and aspirin. After an eventful and worrying pregnancy I finally gave birth to a lovely baby boy 15 years ago. Good luck and all the best!

SophiaP profile image
SophiaP

Hi, I was the same with my pregnancy. Have you checked your ferritin & hematocrit ?

kateg84 profile image
kateg84

Hey, thanks for the replies. Yeah I thought of that, I do get anaemic easily but I'm having regular blood tests and taking iron tablets so I'm not at the moment.

kateg84 profile image
kateg84

although, I don't think they checked my ferritin levels

MajorKrimes profile image
MajorKrimes

Shortness of breathe was a factor when first diagnosed with DVTs and did actually seem to worsen slightly with the APS/Hughes diagnosis over a year later. I am still searching for a Physician(s) who knows more about this illness than an Uber driver!!! 😷😷 Good Luck,

Lure2 profile image
Lure2 in reply to MajorKrimes

Hi, You have answered a 7 year old question now. I wonder if you have now a diagnose of APS (Hughes Syndrome)? If so, it is important to get a Specialist who understands this illness and who works with patiens with autoimmun illnesses all the time.

With DVTs and breathlessness you should ask for an Echocardiography with doppler. I have had several as I have 2 leaking heartvalves and also Pulmonary Hypertension.

First of all find your exellent Specialist and stay well anticoagulated. I live in Sweden and have exellent Specialists (an Hematologist and a Reumatologist).

Good Luck and take good care!

Kerstin in Stockholm

MajorKrimes profile image
MajorKrimes in reply to Lure2

Thank you. Had echocardiograph this morning. Results next week. I am fortunate to have really excellent Cardiologist. Sweden is beautiful. Have spent much time in Gothenburg on business. My good friend and former colleague, Bengt Muten and his family spend time annually there with family.

You are fortunate to have excellent physicians who know APS and its intricacies. Not many in my area in the US. Thanks. Take care,

Lure2 profile image
Lure2 in reply to MajorKrimes

Good! You are lucky! Also see to it that especially your bloodpressure is not too high. I do not know you age but I am now 77 years old.

You must also see Stockholm in summer. This capital city on the water with all its beautiful archipelago is worth seeing.

Kerstin

MajorKrimes profile image
MajorKrimes in reply to Lure2

I’m close; right behind you in age! But there’s lots I need to finish so I’m trying for another couple of decades. Keeping my wits about are an equally daunting concern. Thanks. “Older people RULE!”

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