Just been diagnosed but not confirmed yet

Hi I'm 53 and had a year of terrible illness ranging from. severe chest pains, chronic prostatitis. temporary monocular blindness, several TIAs and a Carotid Endarterectomy. I have just been diagnosed with APS syndrome. It's not been confirmed with the second blood test yet but the Consultant has stated I had 3 very strong positives and consequently have been started on Warfarin as well as Colypodrel. INR all over the place in early stages and I feel a bit bashed about, any advice?

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  • You will find a lot of the people on here very helpful. I also was 53 when diagnosed. It takes a bit to get used to and there is a lot of information on the internet. I will give you what I think are some of the most helpful out there.

    Medscape.com

    Ptinr.com

    INR tracker.com

    APS.com

    Dr gourmet.com

    I also had problems with a fluctating INR, what I found to be the most helpful was to eat all of my veggies in one meal, usually at dinner. This way I can eat whatever else, as long as it is low vit k, in my other meals. The key is to be consistent... be aware olive oil has vit k, mayonaise too. Tuna also: due to the oil it is packed in. Corn oil has some but I use this as my go to when needing to fry something or bake. You can also use nonfat Italian drsg for a condiment for a sandwich when needed, I use the one put out by Aldi's: fit and Active, I think it's called. Ptinr.com has a wealth of information on foods, I would read that one first. Facebook has a website.. eating on warfarin, check that out. A book Sticky Blood by ?Thacker or Thackery is recommended by many on here also.

    Most importantly don't make yourself crazy.

    I don't eat veggies really high in vit k ever, e.g. Spinach, lettuce, K per my own personal choice. Since I've been holding to what I have told you my INRS have been consistent. This shall get you started, good luck and remember to breathe. Sincerely, Cindy

  • Many thanks, that's brilliant help!

  • It took about 3 months for my INR to get " in the zone" they wanted me at even though I was watching my diet/vit K intake. Since then its stayed very stable and I eat a normal diet except for vegetables high in vitamin K, which I avoid. I was doing everything possible at first with no success which really frustrated me I didn't know what else I could do, so after 3 months INR has been acceptable so don't despair you'll get there

  • Where are you from?

  • I'm from Leicester England and my Specialist is Dr Gooding.

  • Where do you live? You need an APS-Specialist which can be very difficult to find. You have only done one bloodtest but are already on Warfarin.

    It takes several weeks to get in range with the INR but my Specialist of APS as to my blood (Hematologist) started me on a high dose at once so I "could read" after 24 hours. No doubleseeing.

    I do not know what Colypodrel is (perhaps you mean Clopidogrel which is an alternative to Aspirin). My Aspirin was taken away when I started Warfarin though.

    Kerstin

  • I forgot to say "welcome to our friendly site!" There are several members who know a lot so I hope you will stay with us.

    Try to educate yourself about APS when you get a diagnose very soon and read also "Sticky Blood Explained" by Kay Thackray. Keep your bloodpressure normal.

    Kerstin in Stockholm

  • Ha ha yes I did mean Clopidogrel, it was late here in Leicester England when I was typing, I was tired and getting my head round a lot of stuff.

    My Specialist is Dr Gooding.

  • Hi there, welcome, you have landed in the right place, where are you located and do you have a Hughes Syndrome/APS consultant looking after you? Things should very much improve for you with a diagnosis and the correct medication. A lot of people on here have waited a very long time for a diagnosis and do improve when the right help has been accessed. MaryF

  • Hi MaryF

    Many thanks to you and all above for the welcome, for a year of one horrible illness to another including TIAs and a Carotid Endarterectomy I thought I was about to depart this Earth, now I feel I with medication and stability I can move forward.

    Dr Gooding Haemotologist, here in Leicester is my Consultant.

    Sounds like my year is short in comparison to some poor peoples experience.

    I just want to return to as much normality as possible.

  • You will return to some sort of normality and one size does not fit all, with regards to medication. So to have good Haematologist and or Rheumatologist with working knowledge of this disease is vital for best outcome.

    I always say this to people, do get your vitamin D, B12, iron and Thyroid checked also to make sure that side of things is ok! Most find that being on here, just reading the queries that come up with us and the members answering is pretty educational. I hope you continue to feel much better.

    MaryF

  • Thank you , I am positive in my outlook and I look forward to getting on with life and dealing with this blip :)

  • Good for you. MaryF

  • Welcome to the club I to take both warfarin and clopidogrel, which is generic version of plavix. You may find yourself having to explain to any new pharmacy's that yes you no they are not generally taken together but for some of us warfarin alone can't do it. Basically warfarin kind of thins the blood and the plavix makes is slippery. So using the two together can be dangerous but not as dangerous as continuing to have strokes and TIA's. The plan was for me to take it for two years after surgery to close the wholes, PFO & ASD, in my heart. However, evert time I start to slowly stop the plavix/clopidogel I start having TIA's again. So I have been taking both since 2000. More than likley you will adjust and finally hit your INR range and become inr stable. I have been taking warfarin since 2009 and follow all the dietary restrictions however, there is a sub set of patience, including myself that are just unlucky and their inr remains unstable which means regardless of my action or food intake my inr continues to fluctuate. Thankfully I am symptomatic when my INR is two low and have learned how to listen to my body, get inr test done and make adjustments. I do hope you are able to stabilize your INR it takes patients and u must do ur due diligence to keep yourself in a Safe range. Also, please not the at home finger poke INR machines tend to be inaccurate in APS patients. A blood draw is the safest and most accurate way to test. Im sure you will learn a lot on this web site as the people are very well versed on this contrition. Good luck, I do hope you stabalize soon. Take care and listen to what your body is telling you.

  • I would add to the great advise already given that you may want to ask that once things get stable that you are given some LMW heparin injections to do if your INR drops below your target range. This is really important because with sticky blood your warfarin drag is a few days so you do not want to be too low for too long. Prof Hughes usually says if it drops below 3.

  • Hi

    Are ranges set differently for different people then? My range has been set 2 to 3 and ideal 2.5.

    I started 0.9 went to 3.5 then 2.2 (in range) they increased dose slightly but strangely I dropped to 1.4 yesterday.

    Had flu jab and felt rough for quite a few days with aching low back and legs unsure if linked or cause of drop?

    Didn't miss any meds or take bad diet or Vit K heavy diet so confused why?

  • Unfortunately the flu jab will do that and you should have been warned so that you could have taken precautions. People do have different ranges depending on the severity of their condition and the type of clots they have had and also what controls their symptoms. Some people can get away with a lower INR controlling everything whilst others may need a range as high as 3.5-4 to get the same affect. Your range to me seems too low. Prof Hughes always talks about an INR of at least 3 and says most people with APS will require 3-4 to control symptoms and stop future clots.

  • I can tell you that I have primary APS (no other autoimmun illnesses as fas as we know now) and I have had neurological symptoms and also very high bloodpressure and now Pulmonary Hypertension and leaking heartvalves.

    Started 2.5 - 3.5. (2011), then had 3.0 - 3.5. Now I have an INR of 3.2 - 3.8 and selftest and monitor my own dose. The veintest is the real value we have to rely on though. If I get under an INR of 3.0 I have to take a Fragmin-shot. I get the symptoms back if I am low in INR.

    It depends if you have got arterial clots or venous clots or both how high INR is required.

    Most of us need an INR over 3.5. It is different for different people. Yes. How much Warfarin you take is individual and can vary very much. Some take 5 mg or others 15 mg and have the same INR.

    It sounds to me that you need a rather high INR.-level as to your symptoms. Try to selftest otherwise it can be difficult with Warfarin.

    Are you Lupus Anticoagulant positive? Not Lupus but one of the antibodies they test for APS.

    See to it that your bloodpressure is not too high (as to your chestpains)

    Kerstin

  • Things that will change the INR: new drugs, virus, infections, alkohol, exercise, K-vit vegetables etc.

    Be CONSTANT with most things as a rule .

    It can take 2 - 3 days to change the INR.

    Make daily notes about your Warfarin ; if you reduce or increase the number of tablets (can take 2 - 3 days) , when you test the INR, what number of INR, how you feel et etc. Take the Warfarin the same time every day and try to remember it (make notes).

    Some of us can easily have a steady INR when others (like me) must be very carefull with what we put in our mouth. You will learn. Hope to hear how it goes for you.

    Good Luck from Kerstin in Stockholm

  • Thank you Kerstin,

    I'm still adapting and learning.

    I appreciate yours and all on here's guidance, advice and experience.

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