Does anyone have trouble breathing with APS? When I first had the double vision and was hospitalized, my first symptoms were trouble breathing (asthma like) and chronic UTI's I was then diagnosed with triple positive APS antibodies. My pulmonary function keeps going down and not sure if it can be related to APS or if I might have another lung issue or auto-immune lung issue. My pulmonologist looked puzzled and took a few more blood tests. I just wanted to know if anyone else has lung issues. I do not have Lupus just primary APS.
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rottiro1
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I did. I was really struggling for breath sometimes, and I couldn't talk. My Rheumatologist sent me for a CT scan as she was concerned I had a clot on my lungs (something to consider).
There was no clot. It turned out I have an allergy to dairy products, that I didn't know about until I was in my thirties. This is an allergy to the proteins (casein and whey), rather than an intolerance to lactose.
Interestingly, dairy proteins can also trigger an autoimmune reaction in some people. They was also causing inflammation (phlebitis) in the veins in my legs (and probably elsewhere), which is obviously not a good thing for people with APS.
Such an inflammatory, allergic response was then making it difficult for me to catch my breath, but I never had my pulmonary function measured, and so do not know if this was affected too.
Yes I had the same problem and interestingly was told to go off dairy by my gastro when he investigated severe anemia in me (no cause found).
My breathing was so bad I was convinced I had lung cancer ... now I've just started running 5km each day without an issue. Blury vision and migraines have disappeared too.
I've honestly not felt better dairy free and it was interesting to read your comments about dairy protein and autoimmune reactions - because I've wondered myself if that was my trigger.
Yes I started anticoagulation 5 plus years ago - clopiogrel (and topimax for migraines at the same time). My visual, migraine, slurred speech, numorous other symptoms remained for 4 more years ... until I gave up dairy (for an unrelated anemic issue).
I'm not dismissing that it could be coincidental but I found kjkjkhhh's comments interesting.
I'm actually going to run it via my hematologist when I go see him because it's fortunate that my gastro, who ordered me off dairy, happens to be his brother - I'm interested to hear his thoughts (I'll share them when I get them).
Could you be so very kind and tell me what "diary" is about. I know we should avoid gluten to feel better. I am on our site a lot but come from Sweden and would hear what you avoid as "diary".
As I am on Warfarin I usually eat about the same healthy things with fruit and vegs to keep my INR in range.
Hi Lure2 apologies I wouldn't suggest you avoid cows milk etc unless you're advised by a medical professional. Mine was linked to anemia and intolerance I think (I'll ask more questions next time) and I was simply commenting that it resolved my breathing issues, migraines etc, visual disturbances. These were all attributed to my blood so I'll be curious what the hematologist says next time.
I have to avoid all diary products containing the milk proteins casein and whey. This means all cheeses, milk, whey and milk protein drinks, ice cream, yoghurts and so on. And for me it doesn't make a difference whether it's cow, sheep, goat, or even camel milk.
The only exception is ghee and butter, which are pure fat and do not contain milk proteins or lactose. Technically, butter contains minute, trace amounts of casein, but it's so small, it does not affect me.
Among some functional doctors with an interest in autoimmune disease there is a recommendation to avoid dairy if a person is also sensitive to gluten. This is because gluten, as you know, can loosen the tight junctions in the gut (via zonulin) causing leaky gut. When this happens there is an autoimmune response as various foods are recognised as a 'foreign invader'. One of those foods that can trigger either inflammation or an autoimmune response is dairy products.
The general advice I've had over the years from functional doctors is that people with any autoimmune disease should cut out both diary and gluten containing products.
You can get a cheap home IGF antibody test for dairy protein allergy. It costs about £25 and the results are immediate. It's measuring the same antibodies that a hospital RAST test would measure for allergy. If the results are positive, it give a strong indication that dairy is likely to trigger both inflammation and autoimmunity.
So, this isn't a rant against dairy. I know 'normal' people who are exceptionally health on a lot of dairy products. Rather, it's to suggest that dairy products can be one more piece in the puzzle for people with an autoimmune disease.
We are very fortunate to have you here I must say!!!!
This is exstremely interesting facts you give us I believe. I can tolerate gluten and diary but I have noticed that I do not feel so good on it.
I take light-youghurt (free from lactose) with acidophilus- and bifidobacteries and feel good on that.
As a matter of fact I have no problem from my stomach but as I am triplepositive and have an autoimmun illness (APS) I must consider not to eat everything like before, if I want to feel ok that is.
As to lungissues (the question was about that) we can have micro-clots with PEs and they are not seen on a Scan or whatever. The Doctors do not realize that as they do not know APS so well most of them. (I am not sure if they are visible on a CT-scan)
I should also say to nondiscrypt. Yes, I've also worked my way up to 5 km, then 10 km, from overweight and lying fatigued and in pain on the couch, culminating with a glorious 7.2 km run in the High Atlas Mountains. I took exercise just one step at a time. I had a set back with my kidneys last year, which knocked the stuffing out of me, but I've recently started back running on the treadmill (much better for my joints I find)
Also, my vision, as I mentioned in a previous post, was terrible. But since exercising, stopping gluten, and stopping dairy, my visual problems have completely disappeared. In fact, my regular optician is my best friend, and he noticed at my last eye test, that my eyesight had actually slightly improved, and that the ghosting was also significantly better. Previous to this I had visual problems for the first five years or so of anticoagulation.
Can't recommend exercise enough, even if very light.
I think you should ask your Hematologist to refer you to a Cardiologist and do an Ecocardiography with doppler.
When I had not started Warfarin I probably had a lot of PEs. I have had micro-clots and micro-emboli and they have not been seen on a Scan as too tiny. They do damage to our organs.
I now have Pulmonary Hypertension and also two leaking heartvalves (Mitral- and Tricyspid).
This is a symptom (rare) of HS/APS.
Also have a talk with your Specialist of APS (?) to have a higher and stable INR.
Hi, I think with our autoimmune conditions it can lead to inflammation of the lungs without the presence of a clot, ie pleurisy etc. However some people with undiagnosed or badly managed thyroid function seem to have something commonly referred to as 'air hunger'! This is reported frequently in all the thyroid forums, I certainly had it, and did not realise what it was, since taking NDT and getting my thyroid up to scratch this particular symptom is a thing of the past. Naturally making sure our D, B12 and Iron is all at the right levels is a good starting point also perhaps ordering a private panel, yourself, of far more accurate Thyroid tests is a good idea. MaryF
Thanks so much. I am getting it all checked out. I am just concerned with lowered pulmonary function tests. I just went to a new Rheumy who think I might have other issues in addition to triple positive APS antibodies. Thanks for this info it is helpful. Question are you on plaquinel?
This new Rheumatologist is he knowledable (Specialist) of our illness? That is very important.
It is very common with PEs (tiny or ordinary). If they are tiny they are not seen on Scans until we get a huge problem or symptom from APS. Lungs or heart for ex.
The new Rheumy works with APS often. He did. a full work up and I am waiting on blood work. He thinks I should go on Plaquinel. I am also seeing a pulmonologist. I went to a top APS specialist in the country a few months ago and did not have a good experience He was very dismissive and didn't think I should be on Warfarin. All other doctors think I should be. My hematologist also specializes in APS. I am also possibly going to go to London for a consult. Thanks for the concern.
I was finally diagnosed with APS about 3 years ago. I was having breathing problems, especially at high altitude, nothing was showing up on the cat scan. After a Treadmill test and heart ultrasound they found a blood clot hanging like a piece of algae off of my aortic valve. After a cardiac cath they measured partial pressures confirming Pulmonary Hypertension. A VQ scan confirmed I had micro clots in my lungs. A Coumadin regimen with INR between 3.5 to 4.5 and aspirin has helped me get rid of my aortic valve clot. It has also helped my Intracranial Hypertension. The drug Adempas (Bayer) has helped my Pulmonary Hypertension as well as regular exercise, lots of water, and a Whole Life Challenge diet ( lo carbs , no sugar, low gluten, lots of stretching) . I also have access to home oxygen. I measure my own blood oxygen levels and heart with a Pulse Oximeter. And use home oxygen or portable oxygen as I need it especially when I travel to cities at high altitude ( Santa Fe, Denver).
Wow that all sounds scary. Glad you are better now. I am getting tested to see what is causing the breathing issues. This info is helpful so thanks fo sharing it.
If you find a real good Specialist who has had patients like us with APS and pulmonary/heart-issues also, stick to him and let him refer you to the other Specialists.
It is not good to listen to several Doctors who do not know our illness very well and who also disagree with the other Doctor´s different diagnoses and suggestions.
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