I wonder if anyone else has been diagnosed wth Triple Positve APS along with Cold Agglutinin Disease (COAG). My haematologist says they are unrelated but I wonder. I have recently had rituxamab intravenous treatment for COAG since it may be that it is beng triggered by low B Cell lymphoma, identified after a bone marrow biopsy. BUT the problem is that any blood samples taken to check INR levels (I am on Warfarin for APS) always haemolyse unless they are taken in a hospital and immediately put in a thermos flask and analysed in the lab while still at body temperature. I am male, 78 years. DVTs in both legs and pulmonary embolism were found by chance on a cardiology work-up three years ago and I was completely unaware of them.
I am currently London based and am being treated at West Middlesex Hospital (Chelsea and Westminter Trust).
I understand that while APS is rare, COAG is very rare but I am curious to know of there are any people on the site in my situation.
Many thanks everybody,
Colin.
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Colinfb
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Hi, glad you are being treated well and at the right hospital. Have you been checked for Coeliac DIsease/gluten intolerance? There is a connection perhaps you could explore with our medical team: journals.lww.com/ajg/fullte... Gluten for some causes malabsorption, It is important that B12, D, Thyroid, Ferritin and Folate are all at a good level, worth ruling it in or out. MaryF
Colinfb, I am triple positive but I don’t have COAG. In reading about this rare disease I see that it can be primary or secondary, just like APS. If secondary, it can be due to an underlying condition or another autoimmune immune disease. This is according to GARD (Genetic and Rare Diseases Information Center). Certainly many of us with APS have associated autoimmune disorders and that would raise the question of whether or not they are related.
Many thanks for your reply and your interest. I followed the link which has given me some helpful information. I too have a hunch that APS and my haemolytic anaemia are related since the symptoms of both occurred around the same time, although the heaematologist thinks that was a coincidence. The main inconvenience is the problem with blood testing which I have to explain everytime I am with a phlebotomist.
I’m sorry to hear you are dealing with this dual diagnosis.
personally I do not suffer from both but I have been checked for for it.
Interestingly I ( and my husband) just had breakfast with a woman and her husband ( I’d say in their 60’s) in Ann Arbor , Michigan.
By happenstance we were staying at the same bed and breakfast, and both patients at the adult Rheum, and Hematology Center at the university of Michigan.
She had just been diagnosed with Hem. Anemia and cold Agg disease. she was there receiving Rituximab infusions. She was being tested for APS, and lymphoma- awaiting results. University of Michigan has the specialties that cross link.
She brought me up to speed on what you have. I was able to tell her a bit about APS and its management in broad strokes, and share with her about my own experience with my own ongoing journey with Rituximab. ( dosed every 4 months 1000 mg / liter given in a set every 2 weeks 1000 mg per dose - to target antibodies)
She, like you, may very well have APS. ( rather sounds like it.)
Thank you for your interesting message. I recently had a course of Rituximab - four weekly sessions of 800mg. This was advised since a bone marrow biopsy indicated low B Cell lymphoma (4% - 6%) and it may be that this may have triggered the haemolytic anaemia. It could take a while to see if it has any effect and I suppose the positive sign will be if my blood samples no longer haemolyse. It is interesting that you are being given Rituximab for your APS whereas in my case I was given it only for the autoimmune hamolytic anaemia. I was told there was nothing recommended for APS apart from Warfarin which I am now on, to prevent any further blood clots.
Good luck with your own management of APS. I am going to ask the haematologt next time if they ever use Rituximab here to treat APS.
I need to clarify my situation further for you and your doctor.
We are using it in a non traditional way.
I also have very high RF ( rheumatoid factor) 512 where 7 is the highest limit of high normal range and many sites of polyarthropothy.
Tick the box for rheumatoid arthritis.
I have a history of immune thrombocytopenia purpura- critical low levels - tick the box for rituximab
I have refractory thrombotic APS and have failed ( clotted through) every single anticoagulant out there. Sometimes APS can get approval on this alone.
So no- it’s not at all approve for APS here in the states. My rheumatologist is using the RA code.
This is why I’m being dosed differently than you are.
Also- not sure we are having stellar success. It may have some helpful “add on “ effect- but it’s not proven out to be the wonder drug APS researchers had hoped it would be when it was first being researched and used for APS some (10?) years ago. It certainly does have its place. CAPS, for example.
APS is very individual- it may work better for some patients than others. It may be working better with me than we think, actually. It’s one of those things that you don’t really know unless you take it away…
I recommend googling university of Michigan
Adult rheumatology- Taubman center.
There is the Knight Lab. Dr.Jason Scott Knight PhD/ Md) and his team of rheumatologists run an APS lab. They are internationally minded.
Dr Yu( Ray) Zuo is my Dr. He’s very friendly and personable, and very thorough. I saw him as a first time patient on Dec 16th.
He encouraged me to sign up for the news letter he puts out. Topics he puts out- and Q and A area.
He spoke about the importance of CoQ10 and vascular health. ( and it helps with migraines he told me.) Run this by your doctor because I don’t know how that ties together or is contraindicated (?) with your other complications- meds.
Many thanks for that further information which is very helpful. I have signed up for emails from Dr Zuo and others' research and advice on APS. So far (!) I have had no problems with joints or rheumatic issues. I hope the Rituximab treatment does work for you and that you are not suffering side effects. My own side-effects have been mainly psycological - low motivation, low mood but perhaps this is natural for someone my age who used to be very healthy and is now the "prisoner" of two blood diseases, one quite rare (APS) and one very rare.
my side effects can be migraines, for a few days. Steroids and antihistamines three days prior and into I’ve day off and three day days post infusion seem to help.
Also I take an electric soft warming pad into infusion room- warm the tubing line over arm / hand as it goes into body so it’s not cold fluid running in. Aim for just at body temperature- no warmer or it will destroy proteins in rituximab .
cold going into body can set off mast cells to degranulate- causing nasty side effects.
Hot tea- rest. All can help you feel better and cozy. Low mood- low energy.
Who likes to feel like they have been taken hostage and betrayed by their own body- the same body that for years you have had the illusion of autonomy over ?
I felt like that at any rate.
It is a lot to come to terms with at the best of times, much less during the heat if the actual illness.
I suggest just taking it in small chunks between catching up on favorite movies, or new ones you’ve though about seeing white you rest. Netflix binges, Hulu, was made for times like these! Ask your close friends what they’ve enjoyed recently.
We watched ( as a family) The Banchees of Innesharen on HBO in New Year’s Eve. ( apologies to the Irish here- I know I have likely misspelled that one!)
Not a jolly film by any means- but it was really good. Set during Irish civil war 1923 - civil war was only in the background- symbolic of - well - you decide! So many things really. Universal.
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Haematologists knowledgeable about APS in Ireland (Dublin/Louth/Meath region)?
Catastrophic APS or just a bad 3 weeks.
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