Anyone IgA Deficient with APS? Sarcoidosis APS

[NaggingWife]

My nearly 50 year old husband has just been diagnosed with APS after 2 different bouts of multiple pulmonary emboli and various other unexplained health dramas going back over 30 years, including severe Sarcoidosis which claimed his spleen 4 years ago. Our son (late teens) has had IgA Deficiency since toddlerhood, and recently has suffered severe headaches and severe back/chest pains which could have been a PE although we had the hospital screen him for D-Dimer and it didn't seem to be PE. Our concern is that as both father and son have pre-existing Immuno disorders, and father has now tested positive for Lupus Anticoagulant, what is the likelihood of son having APS also? I know that it doesn't generally show up until later, and even if he test positive for markers there is no guarantee he'll develop disease, but I suspect it's possibly more likely. Anyone else out there who was IgA Deficient prior to diagnosis with APS? Anyone with experience of the interaction between severe Sarcoidosis and APS? Our GP is clueless (as seems to be the general experience). Any help gratefully received

[Manofmendip]

Hello and welcome.

I'm sure that other members will reply to you about your questions.

We have an APS patients' group, which meets in Bath, our next meeting is on Wednesday 8th April at 14:30 at the Royal National Hospital for Rheumatic Diseases. I would be pleased to send you details of this meeting, if you would like to send me a private message on here.

Best wishes.

Dave

[MaryF Administrator in reply to Manofmendip]

Great idea to attend the group in Bath, where you will get first hand information from other people in the group. MaryF

[NaggingWife in reply to MaryF]

Thanks Mary, ManofMendip has just sent us the invitation. I'm talking my husband into going (nothing levers him away from work, but maybe this will) He will probably see you there - and you will then totally sympathise with him for why my username is NaggingWife

[MaryF Administrator in reply to NaggingWife]

You will see Dave, but not me, wrong neck of the woods for me, I am about to launch a group modelled on this on, out in East Anglia. MaryF

[NaggingWife in reply to MaryF]

Hubbies relatives are from East Anglia and we are going to have them tested as well as several members of previous generations of that side of his family dropped dead of massive unexplained heart attacks or pe's at very young ages, so I may put them in touch if the cousins test positive.

[NaggingWife]

Hi there - son has not yet had bloods done for APS, but his IgA is pre-existing. He has had many scary health episodes over the years, which the docs have been unable to explain other than the low IgA must be responsible, so not wishing it on him (it might just be that his low IgA causes knock on effects), but husband definitely has tested positive for Lupus Anticoagulants following more than one episode of multiple pulmonary emboli in both lungs...

Our problem is that the GP just doesn't get APS at all, and not only doesn't understand the risks, but told my husband that he didn't NEED a referral to one of the specialists listed. "You have a haematologist and that's good enough - no you don't need a referral to a specialist in this field, any haematologist can deal with it"... Thus the need to find a new GP. We have considered going private, but as there is actually an APS specialist listed for our local hospital, if we can find a GP willing to refer, we'll try that first...

[MaryF Administrator]

I back this advice up, you do get GP's who are actually grateful to be given a link to the charity website, the odd medical paper and of course the list of specialists. However you get the odd one who is clearly not going to update their training or the way they look at information which is appalling in this day and age, if it were me I would vote with my feet and write up very carefully on NHS Choices. MaryF

[DannyBoy1]

We have the SAME problem here in the States. Our MDs often have a God-like attitude and it's rarely warranted.

[Penstar]

Hi I have C/APS and am IgA deficient and also had ITP with a splenectomy .... From what I understand I have also repeatedly tested positive for SLE lupus but This does not necessarily mean that SLE is active and that you are having flare ups. I maybe able to support from my own experience? If your keen to chat?

[NaggingWife in reply to Penstar]

Hi Penstar - thank you, that's great, I will put you in touch with my husband via PM.

[Lure2]

Does he have Control of his bloodpressure? I have Pulmonary Hypertenison and leaking heartvalves (goes with APS and I am 70 years) and sometimes together with pulmonary embolies can go very high bloodpressure. It has to do with APS. I do echocardiography with doppler every year. Important to keep the bloodpressure down.

Best wishes form Kerstin in Stockholm

[NaggingWife in reply to Lure2]

Hi Kerstin, he has only just been diagnosed with the APS. His ECG & blood pressure are ok, but back when he had a raging case of Sarcoidosis in his spleen, his blood pressure was through the roof. He had his spleen removed (before they knew it was Sarcoidosis, they thought it was cancer), and once the bulk of the Sarcoids were gone, his blood pressure returned to normal. Have you been checked for active Sarcoids? It might be worth mentioning to your doctor. Thanks for making contact & best wishes from Salisbury, UK

[Lure2]

There is no doubt that I have got APS with all the antibodies and in high titres also.

If I look at the symptoms of Sarcoidos it is almost like looking at a list of APS-symptoms. Thank you for telling me. Give my regard to your husband and I wish him good luck.

To have an APS-Specialist is vital for our Health!

Kerstin

[Lure2]

You can be glad that you live in England. There you have Professor Graham Hughes. I know a lady here who took her family and went to England (from Stockholm) to see him.

I have tried to learn as much as possible about this rare and relatively new illness. I think you should read "Sticky Blood Explained" by Kay Thackray. It is a very good book also for relatives. Ii is not the latest but the symptoms are the same. She writes about the symptoms and how it is to live with this illness. She has written a second book also; "More Sticky Blood".

As both your husband and your son may have these antibodies and I can understand that you and your husband are worried, i would go private to London Bridge to see the real experts on this illness.

APS is a tricky thing and perhaps Sarcoidos could be APS like MS can be APS when doctors who do not understand APS are involved. Who knows? We must educate ourselves so we know which questions that are most important.

As we have too thick blood, anticoagulation is of vital interest to avoid further symptoms.

Kerstin