Confused

Good everyone and I hope you are all keeping well! I joined this group as I am supporting my partner as he was diagnosed with APS in January which has caused damage to his heart. So I'm slightly confused about diet and APS - I have read in a few places that initially you shouldn't make dramatic changes to your diet but he went to a nutritionist today who told him to stay away from bread, red meat, dairy products, green vegetables (spinach, sprouts etc - which he only eats very very small amounts of anyway). End result was he got really upset trying to take everything in especially as he is still getting used to dealing with the condition, all the drugs etc. All good advice about would be greatly appreciated so I can support him in the right way - and what better advice than that which comes from someone who has been there.

Many many thanks.

A-M

18 Replies

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  • Hi and welcome, you will gain a lot of support and good solid advice on here. I will let people who are actually on or have been on Warfarin answer you more carefully, for instance Lure2 gives excellent easy to follow advice on here. That is presuming he is on that?

    Out of interest what sort of nutritionist did you see, there are those who are qualified more than others. You do have to watch how much vitamin K you are getting from your diet when on Warfarin, however being told to give up on thing or another without a clear plan could be more complicated than it needs to be. I am not on Warfarin so do not have the restrictions, although colleagues of mine, try hard to eat the same amount of green vegetables per day to keep things even, in terms or the INR.

    Some of us give up gluten if we are intolerant which I am, however beyond that I follow a healthy Mediterranean diet. There is good book around by Cath Atkin about Warfarin, she has Hughes Syndrome/APS and worked it all out pretty effectively.

    Is there any reason why your husband has been told to give up all those food groups, If he is on Warfarin then some basic rules apply, however I not sure why all the other suggested foods would be left out.

    We will endeavour to help you where we can, please feel free to ask questions, we are friendly bunch. MaryF

  • Hi,

    I do not know in what country you live and if he has been in contact with a Doctor specialized in autoimmun illnesses and if it was that Doctor who also diagnosed him.

    I am sorry that Hughes Syndrome has caused damage to his heart. It has done that to me also as I now have Pulmonary Hypertension and two leaking heartwalves.

    When we have this illness the most important thing, after having found a Specialist, is to thin our blood which is quite too thick. As a treatment we usually get Warfarin and I wonder if he also has got that or perhaps something else. I feel good when I am properly anticoagulated.

    Please stay with us on our friendly site and I am sure our members will give you some good advices. Please tell me if he is on Warfarin !

    Best wishes to you and him from Kerstin in Stockholm

  • Hi and thanks so much for the replies. My partner is on warfarin with an INR target of 2-3. He is also taking ramipril and bisoprolol fumarate for his heart, steriods for the immune system and mycophenolate mofetil which he has started to take as an eventual replacement for the steriods. We live in London, UK and he is under a rheumatology specialist. I want him to get used to dealing with his APS and the regular drug intake with baby steps with the change in diet as he is a fussy eater at the best of times. So do you think it would be better to take the advice of the nutritionist or stay with my plan of baby steps? I just want to help him improve his health and make him feel better. 😆

  • Welcome! I'm here supporting my wife.

    There are autoimmune diet books that recommend avoiding grains and dairy and all processed foods. (My wife likes Amy Myers, for example.) Red meat shouldn't cause inflammation, unless perhaps it's loaded with dye, flavorings, antibiotics, etc. The argument is that animal flesh is the least inflammatory because we are made up of animal flesh ourselves. The best beef is considered to be grass fed and grass finished, but it's quite expensive. Lamb and turkey are good here, as well.

    But it's rare to find a nutritionist (in USA, anyway) who would advocate any diet that omits entire food groups. Did your partner get a good explanation of how eliminating those foods would be beneficial?

  • Thanks SquarePegGuy 😆 He showed the nutritionist his discharge letter from the hospital which laid out everything that was wrong and all the meds he was taking and she based her opinion on that info. One of her explanations was that he needs to eliminate the mucus in his body which is is not helping his heart condition. I thought it may be better for him initially to start slowly with the change in diet but I may be wrong.

  • Eliminate mucus ... that explains the reason for eliminating dairy at least! :) Can he at least do that? Or if not eliminate, cut back on obvious sources of dairy, like don't drink milk and leave the cheese off the burger? That would be a great start and maybe manageable. Good luck!

  • Hi and welcome.

    I note that you are in London but, of course, I do not know your financial circumstances. However, when I was diagnosed in 2002, I paid to have a private consultation with Prof Hughes at the London Lupus Centre at London Bridge Hospital. It was well worth the money and seeing him probably saved my life, as it has quite a few of our members on here.

    I was on Warfarin for seven years but, due to a recurrence of symptoms and some new, ear related symptoms, Prof Hughes switched me to Fragmin (Low Molecular Weight Heparin) injections. When I was on Warfarin I needed an INR of around 4.0 to feel reasonably symptom free; Kerstin (Lure2) has the same need that I had. Many INR clinics try to have all their patients, including APS ones, at an INR of 2-3. This is often too low for APS patients and a letter from Prof Hughes or one of his team may be helpful in persuading the INR clinic to raise your partner's INR to between 3.5 & 4.0.

    Best wishes.

    Dave

  • Thanks Dave and yes was thinking about a visit to Prof Hughes. Did you make many/any changes to your diet at all? 😆

  • No I didn't. With Warfarin consistency is the important thing, especially in green veggies and other Vit K rich foods and also alcohol too. Vit K is a Warfarin antagonist (antidote to Warfarin) and will lower your INR, whereas alcohol, other than modest consumption, enhances the effect of Warfarin and may raise your INR. However I never cut any foods out, as you need a nutritious and balanced diet with APS but the watchword is consistency.

    Dave

  • Agree completely with Dave. I was trained as registered dietitian with masters in the 'old days.'Consistency most important. Worked at VA hospital for 20 years prior to disability retirement in 1992. Nancy

  • Nancy. Thanks for your validation of what I said. Dave

  • I was told "do not change your diet, eat as usual and let the dr adjust the warfarin to you." I didn't listen ...big mistake. Looking back I wish I would have just avoided the" big guns" such as cabbage broccoli and spinach. And then if I did want to include them to have them, but have the same amount every week. Good wishes, hope this helps💕

  • Hi there and welcome. I started off on warfarin but for various reasons had to stop and like Dave was switched to LMWH. Whilst on warfarin I just ate my normal diet but made sure it was not to Vit K heavy. Consistency is the key so you eat the same amount of green veggies daily. Unfortunately with warfarin other things can upset it, stress, exercise, booze. Although the amount of warfarin you take does not correspond with your INR because some people will take 5mg for an INR of 3 and others will be on 15mg it depends on how you metabolise it.

    I don't know what nutritionist you went to but it sounds very extreme to me. For a start you need to be eating some red meat because iron is important. Thyroid problems and Sjogrens syndrome often come along as a trio with this disease so making sure his ferritin, Vit D, and B12 are in good ranges are important. I would concentrate on getting his INR in the correct range first before worrying about food intake. That can sometimes be an issue so you are right, baby steps!

  • I also was told not to change my diet. Not to eat greens in excess but equally.I just eat fruit and veg as normal.I am no expert just a victim of APS like all of us. I listen to those on here with more knowledge and gets lots of great info.

  • Hi i hope this helps i,m in the same situation as ur husband and on 2 of the same heart drugs , at the moment i,m working my way up 2 getting my INR levels to between 3.5 and 4 , i,m on 11mg of warfarin but raising it every 2 nights , i was told not to change my diet , but not to overload on RED MEAT OR GREEN VEG , but not to make any changes to my normal eating , as this cld cause problems , and my consultant is in contact with prof hughes , i hope this helps ... x

  • Hi,

    You have got exstremely good advices in a short time above I think!

    He needs an Expert on Hughes Syndrome who can cooperate with the Cardiologist and about his treatment and different drugs.

    A lot of new drugs and also new food will be difficult to manage especially if he is on Warfarin. Warfarin wants constancy. Do you know if he has all the three antibodies positive incl Lupus Anticoagulant ?

    He can be very glad to have you who wants to help him. That is great.

    I suggest you read "Sticky Blood Explained" by Kay Thackray. It is not a new book but she has got APS herself and writes about the different symptoms which are of course the same today. Many members here like the book and it is also good for relatives to understand how it is to live with this tricky illness. She has also heart-issues like me and your husband.

    Take it step by step and stay with us here as we will support you and your husband.

    Kerstin

  • You know, I discovered in May of 2015 I have severe cardiomyopathy due probably to microvascular damage from the APS and other clotting problems. I started out with trigeminal neuralgia which was due to microvascular damage to jawbone eventually determined to be due to hypercoaguability. The clotting was due not just to APS but other things like homocysteine, Lp(a), and others I can't remember. I originally went on Coumadin due to THESE clotting problems and not the APS. I knew the Cincinnati doctor was on the right track because the horrible jaw pain decreased about 90% after 3 months of inr greater than 2.5 or so. If inr went lower, jaw acted up. So early on I knew when inr too low. I am told I have "avascular osteonecrosis of the jawbone" due to clotting disorders so you can end up with bone problems from this, too .

    My ejection fraction is now in mid 30's after getting new pacemaker/defibrillator. These clotting problems can cause a lot of damage besides DVT's. Nancy

  • Thank you all so much for all the replies - very helpful and much appreciated! Wishing everyone well 😆

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