APS and weight gain

[deerwendy]

Hello. I was diagnosed with APS a few months ago and since then I've gained about 15 pounds. Can someone tell me if they've gained weight with this or lost weight? Most of the research I've read says that people lose weight, however this has not been my case. Any help would be appreciated. Thank you!

[travelnut]

I have gained weight. I think this is down to a short in calorie balance. I have not been able to exercise as much but have still been eating the same amount of food. Also, I think potentially I have been eating less green veggies which may mean more higher calorie foods.

[MaryF Administrator]

With myself I found it to be my undetected thryoid problems, so have now lost some, also for some reason gluten free has now made me retain less water! Mary F x

[InSpain]

I too have gained weight. I was used to eating green veggies and salads most days too. I think it is valid that lack of exercise probably contributes as well. I say this because since starting my latest round of Physiotherapy I have noticed that my clothes are a lot looser than they used to be. I do have problems with water retention too. However, my Rheumy recommended cutting out all fizzy drinks and just drinking water, at least 2 litres a day. Surprisingly this has helped tremendously. Also as I’ve got older I find that it is harder to shift my weight after taking a course of steroids. I’ve no idea if the menopause plays a part in this or not? xxx

[Jade]

I find I am gaining weight as years go by. My guess is its not APS per say. If we are exhausted and/ or in pain we don't feel like exercising or even getting out and walking.

When I was young I was like a rake, yet I consider I had APS from childhood.

I am in my 50's now and life is physically harder and the weight sticks. Yet when I came off antidepressants at the end of 2010 I went downhill very fast and lost a stone very quickly taking me under 8 stone. I am now back on them and the weight creeps and creeps back on.

[jessielou]

Hi hon

I did gain weight initially, I believe as others have said it was reduction in green veg and salad, plus not being so mobile due to fatigue and pain!

I am losing weight now as struggling to eat due to digestive problems! The mystery of Hughes syndrome strikes again I guess!

I hope things will settle as your med team work things out.

Take care gentle hugs love Sheena xxx

[deerwendy]

Thank you everyone for your replies. I also think a portion is not being able to eat green leafy veggies like before. My Dr said I can eat the way I would like and we'll adjust my medication as needed but I know that I cannot commit to eating the same amount of vegetables every week. What would happen if I forgot the number of salads I had from the previous week? Plus, my INR is up and down with the immunodeficiency I have. I think I'm noticing it dropping when I am getting ill and then going up until the next bout.

Does anyone have suggestions on a healthier eating plan that does not include large amounts of food items that should be restricted?

[Coppernob]

Um, I've had APS for years (diagnosed 2005, but probably had it since at least 1991) but don't recall anyone ever saying anything about avoiding green veg. What's the story there, please??

[InSpain]

Thanks for the link APsnotFab it was really interesting. Perhaps I should of said that I have cronic problems with my liver - for me it's important to drink at least 2 litres of water every day because by the time I have a strong sensation of thirst, dehydration may have already set in for me. For me severe dehydration is a medical emergency, and the following symptoms could indicate my body is suffering from insufficient water:

· Headaches

· Chronic joint and muscle pain

· Lower back pain

· Poor concentration

· Fatigue

· Constipation

· Dry skin

· A strong urine odor with a yellow or amber color

I have to restrict my sodium intake and not my fluid intake. However, for most people, I take your point, the channel 4 programme highlighted this topic very well. Thanks for pointing this out. I think the more that we can become informed about our own bodies the better we will feel not only physically but about ourselves too. xxx

[Bagpuss01]

Woww, reading through all the comments I have learnt so much, thankyou. I am on a high dose of warfarin as my INR levels need to be 3.5 and no one has mentioned to me about not eating greens. I too have put on 2 stone in a year, I do think this could also be down to low self esteem and lack of exercise. I have suffered every day with a headache for 11 months now, and thought warfarin would help. Good luck to you all. X

[Kentish_Man]

I have various medical problems of which APS is one of eighteen. I am on a high dose of steroid (as well as a bucket load of other meds everyday) and since becoming ill 6 years ago I put on 9 stone. Strenuous efforts have enabled me to lose a stone. my problems are essentially mobility or lack of. I have reduced my portion size and become very aware of what I eat, but it is like trying to climb a mountain to reduce my weight further. As APsnotFab quite rightly says, salad and a lot of greens can alter your INR. I am also diabetic, so eating much fruit is also out the window. I have not tried coming off my anti depressants, but maybe that could be an answer.

It is interesting as I also 'suffer' from some of the things that 'InSpain' listed, such as:

· Headaches

· Chronic joint and muscle pain

· Lower back pain

· Poor concentration

· Fatigue

· Constipation or Diarrhoea (no happy medium)

· Dry skin

· A strong urine odour with a deep yellow or pink colour

· Jumbled words be it typing or speaking

· Acute memory problems - I could go on, but I cannot remember everything!!

When discussing this with my Rheumy, it seems to get brushed off, but is of great concern to me. It seems that no one is either willing or able to tell me why I have these symptoms (for want of a better word) and what I can do about it.

[InSpain in reply to Kentish_Man]

I think you will see that some of the things I listed are also symptoms of APS. I think a lot of autoimmune disease symptoms overlap so perhaps that's why your Rheumy is reluctant to do anything. Liver failure, I'm told, is very hard to detect. I am also jaundiced, have dangerously low blood pressure at the moment, extreem abdominal pain and an enlarged liver. You could always discuss your concerns and ask for a liver function test as this would maybe help to put your mind at ease. Nothing's lost by asking. Good luck! xxx

[Kentish_Man in reply to InSpain]

Hi,

Thanks for that. I have already made a list of things to ask as I never remember when I am there and have put these on the list !!

I will ask for a liver function test. I have been told that my kidneys are down to 75% efficiency and falling, I have one and a half working lungs and guess that I should ask about my heart too while I am at it. As you say, no harm in asking.

Take care and good luck!

[InSpain in reply to Kentish_Man]

Definitely ask for tests on your heart as you are experiencing all these other problems. Ask for an Echocardiogram as this will show up any problems you may have in general. More specific tests can be done afterwards if necessary. I say this because I was diagnosed with aortic insufficiency (a problem with the aortic heart valve) after insisting that I was tested.

Good luck to you too! xxx

[traceylou in reply to Kentish_Man]

Hi my liver range is high particulary MCV but it is not alchol, I wonder whether docs think this that is why they will not discuss it, is this common?

[Manofmendip]

Hi everyone

I have put on about two stone over the last two to three years. I was diagnosed in 2002. I attribute my weight gain to Amitriptyline that I take for my migraines. I try to eat sensibly and I still go for bike rides most weekends, sometimes rides of between 50 & 100 miles, which can use up between 2500 & 5000 calories and I never lose an ounce.

Best wishes.

Dave

[Lesley_D]

Hi, I stopped smoking about 11 months before diagnosis in Nov 2011, and about 2 months before my detected PE, that, and being less mobile due to the lung deterioration and being post menopausal I believe left me not standing a chance about weight gain. I have gone from a size 10 to a size 16/18 gaining around 2 stone. I have noted everyone saying the reduction in leafy green veg. Although On warfarin, I still eat greens at least once a week and consider them one of my treats, as this hasn't changed my anti-coag nurse said it would be ok, as obviously it hadn't changed and therefore my warfarin does includ it.

Smiles

Lesley

[Renae]

I have had a diagnosis of Aps for 19 years and been on coumadin the whole time. I have never limited my green veggies, in fact only a few green veggies contain enough vitamin k to matter. Those are spinach, broccoli and kale.

[Ibfrostybrew]

I gained 40 pounds. Extremely high cholesterol, extremely high triglycerides above 1000. Of course I can't eat anything green, I ate several impossible Whoppers and my INR jumped to 5.0.