Just enquiring on behalf of my brother in Australia who has been diagnosed with APS and is now on Warfarin which he commenced in July/August this year after he was diagnosed.
His haematologist has advised his INR level needs to be between 3.5 to 4. Currently it is around 3.6, however most days, he feels as though he has no energy and he has to literally push himself to do anything.
His INR did start to stabilise around 4, however as he had to have a colonoscopy, he stopped the Warfarin and it has been a bit of a journey trying to get the INR stabilised again. Some two weeks later, it is now 3.6.
He is frequently off-balance, he gets the shakes, he is having trouble with his eyesight and his headaches are again becoming more frequent.
He hasn't worked since January this year and he is becoming very despondent because he is very restricted in what he is able to do.
His haematologist and neurologist have both told him that because he has suffered multiple mini strokes, it will take time for his health to return to normal and there is nothing he can do in the meantime.
My brother feels the current treating specialists may be missing something so has requested to be referred to an immunologist, however his haematologist feels that is not necessary as he (haematologist) feels he is able to manage his care.
Does anyone have any input?
Many thanks,
Jan
Written by
johnchoe
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Hi, sorry to hear about your brother, it is not unusual for these sort of things to run in families, in terms of autoimmune diseases, often relatives past and present may have other autoimmune disease including a Thyroid problem, or heart attacks or strokes at an earlier age and if female multiple miscarriages. Our charity website has a lot of good information, including under Hughes Syndrome, the main tests, (there are three), do you know if all three were done? It is good that your brother's INR is set a bit higher for him, and there is a book by Cath Atkin - Eat on Warfarin which helps some people to keep their INR as steady as possible, it may not work for everybody, but some find it useful.
Make sure his levels of D, B12, folate and ferritin are looked at as well as a Thyroid panel, when doing a thyroid panel it is important to test beyond the TSH test, a lot of us order our own to include a T3 test etc. Perhaps ask his consultant for a realistic view of recovery and a clear plan of what he can and can't do. In the mean time. Do encourage him to join us, lots on here have support not just from administrators but from each other. Our charity website also carries the list of global specialists. We also put Professor Hughes' monthly blogs on here which many like to read.
Perhaps he may benefit from some counselling to help him through a difficult phase?
You have got really good advice now. I am positive to Lupus Anticoagulant and my INR is difficult to keep in the right INR. I have the same therapeutic INR-range as your brother (3.5 - 4.0).
I selftest rather often (every second day now) at home and also do doubletests in the vein at a lab. The tests should be done within 4 hours time to be reliable. It is the veintest that counts! I have quite different values in finger and vein but as I doubletest I can find out if it is always the same difference between the two and know how to dose my INR. Consistency in greens is important. Greens are full of vitamin K, which will lover the INR if you eat more of them one day.
I see a really good Immunologist on the Sunshine Coast. if your brother is anywhere near. My immunologist is Karen Marwood she is brilliant and also has a great team. I am not on warfarin but have many symptoms. Has your brother had a brain MRI. does he have lesions? Also does your brother have Systemic Lupus. I was needing to fly to the UK. not being on warfarin she suggested I inject my stomach. Wow. the flight went ahead. totally uneventful thank goodness. Karen is just waiting for me to have stroke before putting me onto warfarin because of its side effects. Up to now this has suited me fine. Many in the APS group think I should take Warfarin and I may have to one day but up to now I am firing on all cylinders and leading a very hectic life style.
My Neurologist said he wouldn't put me on it and to take my pick of doctors. Hematologist , Rheumatologist , Immunologist I chose the later and it has been good for me.
I wish your brother well please tell him to find some peace and to enjoy everyday.
Regarding strokes he could have left us by now. Keep positive and look forward to every day. Find out as much information as he can. he then needs to follow his gut feeling.... This is a great site and lots of members have a wealth of information.
Sounds bad but it really isn't. I am doing so well if I took warfarin there are more negatives than positives. I function very well and warfarin they believe will not be advantageous. I am happy with this for the time being. I am always open to ideas. and the least medication for me the better. Always aspirin, my blood pressure tablets plus vitamin B's. help me tick away nicely........
I do have a Mitral Valve issue. so hopefully will get some more info with a new Heart Specialist in the new year..... It was suggested as far back as 1991 I went on warfarin when indications were APS due to facial numbness, I am so glad I didn't. I have had all those years free of the issues of warfarin. No doubt one day I will have to take it. but until then I am more than happy to tick away.
Warfarin is a life saver for so many. I suppose I am just managing to dodge it......... If advised to be on it now I would definitely take it.
I hope your brother finds a good level to cope . We are all so different the way we deal with our illnesses. I am so pleased you are helping him find some answers..... It really is a minefield......
Have a good festive season and look forward to the new year
I read that you have SLE, APS and MS and you have an Immunologist who has said that you should not take Warfarin because of its side effects..... (!?)
I can tell you that the Doctors 12 years ago wanted me to take Warfarin but I did not like the idea of "rat poison". Silly of me!!! I wish I had followed the Doctors advice (Neurologist, Hematologist etc). There are very few sideeffects of Warfarin only you must take several bloodtests and probably get a selftestmachine to have at home of course. But worth the trouble no doubt. Do you have Lupus Anticoagulant positive? Then it can be somewhat difficult to get a stable INR.
Warfarin has indeed been my lifesaver. It is the best anticoagulation-drug we can have with this illness. Even my high bloodpressure and pulmonary hypertension have been stable and also my leaking heartvalves after i started Warfarin and keep an INR around 4.0 which the Cardilogist wants. You should get an Echo with doppler.
I think you should get a Specialist of autoimmun illnesses (usually a Rheumatologist or Hematologist) as both MS and APS is not common to be diagnosed with. We know that there are Neurologists and other Specialists who do not know APS so well and we actually have to fight to get to a Specialist who can give us the correct diagnose and MS can also hide as APS or Sjögrens syndrome sometimes. These autoimmun illnesses (also often Thyroid-issues) go hand in hand and can be very difficult to diagnose correct.
Thank you for your encouragement. I am seeing a new Heart Specialist in January. I will discuss all of this with him ad do some re evaluations. Yes I have been positive for Lupus for many years. However I will check out the last major tests done 2016 - 2017 when they told me I had MS / APS. I will also tell Karen Marwood ( Immunologist ) your findings. I am sure she will be interested.
Finally I want to ask you if you have the illness Lupus (SLE) or if you are positive to one of the three antibodies they test for this illness and that is called "Lupus Anticoagulant"?
I know we have "hijacked" (or what you say in English) Johnchoes question but this could be of interest also as everything we talk about here is about APS.
Good luck with everything. Good that you will see a new Cardiologist just hope he knows about APS and heartissues. They do an Echocardiography with doppler every year on me.
I have some notes from 1998. I quote from Dr Lilic Neurologist in Uk at the time. “Linda has extremely hig IgM and IgG. Anticardiolipin Anti Bodies high DNA titre and low C3 complement. Her blood tests indicate quite active lupus and particularly with the idea of thrombophlebitis there is a possibility of her suffering from antiphospholipid syndrome”. This was back in 1998. Jump to 2016. All the MS symptoms presented. With multiple leasions
One more suggestion -- many of us have seen our symptoms calm down after going on a gluten free diet. He might give that a try.
A caveat: if gluten is causing problems he should feel better in a few weeks gluten free. BUT! For this trial to be accurate ALL gluten must be eliminated, and, gluten is found in all kinds of unlikely places in canned goods and processed fooods. One must become a diligent label reader.
And eating out can be an issue as well. I discovered by accident that I have a strong gluten reaction Who knew had been eating a food which is poisonous to me all my life and never had a clue! I found that waiters and waitresses were often very cross with me when I would ask if there was gluten --- ie., what rye or barley -- in this or that item. I experiemented with various things, "I have Celiac, so I'd like to know . . . " Always, a glare from the wait staff and often a lie that no, this or that menu item does not have gluten. But when my tummy problems would start in a few hours I would know better.
Then I found the following phrase, "I'm sorry, but I have that very inconvenient gluten allergy. Might you ask the chef if (insert name of menu item) is OK for me to eat? And please correct me if I have made a wrong choice."
Framing the request in such a manner does not evoke glares. Instead, the opoposite, such as recently as the waitress plopped down the basket od bread on our table , "I'm so sorry you can't have any." To which I reply, "My husband is not gluten sensistive, and I'm sure he will eat my share of your delicous loooking bread."
Hi, I am very similar to your brother. I was diagnosed around the same time after an arterial blood clot and my INR target is 3.5 though the range can be 3-4. I also had to have a colonoscopy and stop the warfarin but as others have said, I was bridged using fragmin. Before the colonoscopy the warfarin was working well and at the right level but since then my INR has taken a while to stabilise. When it goes below 3, I feel extremely tired with joint pains and terrible memory problems. However, the last couple of weeks my INR was up to 3.6 and I was feeling a lot better but I still had the odd day with these problems. Perhaps I ate too many green veg one day or not enough alcohol?
I may try the gluten free diet others have been suggesting as my stomach pains and bowel movements have not improved at all.
StickyBloodMentor - re Lupus Anticoagulant test - unfortunately, my brother does not have copies of his previous blood test results, it has only been within this last month that he has requested copies of his ongoing test results.
I will ask him to enquire at his GP practice regarding the Lupus Anticoagulant test result, whether he had the full thyroid panel and what his Vit D, B12 and Ferritin levels are.
Re stopping the Warfarin - He did follow the correct protocol as you outlined in your post. As instructed by his haematologist, he went onto Clexane injections pre and post the colonoscopy, ceasing the Clexane immediately before the procedure, then back onto Clexane post procedure until his INR reached a stipulated level, then he recommenced Warfarin. But it has taken a substantial amount of time for his INR to rise back up to what it was.
MaryF - Not sure if he has had the three main APS tests, however, I will suggest he ask his GP to review his blood test results to ascertain this.
I know he has had Vit B tests but don't know whether he has had Vit D, Folate and Ferritin tests as well. Will ask him to request these tests when his next lot of bloods are taken.
I know he has had his thyroid tested but, again, do not know if T3 was included.
LindaMorrell - yes, he has had approx six to eight MRI's as well as an angiogram with contrast and, yes, he has multiple lesions but thankfully no new ones seem to be appearing.
Thank you for your well wishes which I will pass on.
Lure2 and GinaD - Not sure if gluten is causing problems ... maybe he could be tested for an intolerance to it .... He has had a myriad of tests now, one more test couldn't possibly matter ..
Altar - Initially, on two occasions, my brother, like you, had a DVT in his leg resulting in the veins being sealed off. He thought that was the end of the matter, however, over a period of time, he began to experience other symptoms such as loss strength in his arms, vision problems, migraine headaches, balance problems etc. This was obviously APS but, my goodness, it took a long time for the condition to be diagnosed!
We are very happy and thankful to have located the ghic.world website and subsequently this group both of which will be so beneficial to the building of our knowledge and our understanding of this condition.
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