APS diagnosis

[Gaqn]

Met with my consulant who has diagnosed APS. Started warfarin therapy last Tuesday.... 10mg for first 3days.. My inr started at 1.2 and has gone to 2.2 already.. My warfarin is now 3mg daily... !! I've been to hospital each morning to have bloods taken for one week and returning each evening for results and medications... My target is between 2 and 3... Has anyone felt really tired after starting warfarin as I would normally be getting around 7 hours sleep I'm now sleeping around 12.... And still feel tired when I get up!!!

[Penelope-Mary]

You would be tired from all the running around having bloods and waiting for dosing, if nothing else!

I don't know if warfarin makes one tired, certainly having APS does!

All the best 🍀

[Lure2]

Hi again,

We have "talked" before.

The most important issue is now to get your Warfarin up which will take some time and during that time ask for Heparin-shots to take until your INR is in range (usually to take when under an INR of 3).

The second and very important question is if you have a Doctor who knows autoimmun illnesses. That is a must for us. Your target 2.0 - 3.0 is a bit low and most of us when having had 3 strokes is having an INR around 3.5. My target is an INR of 3.5 - 4.0.

Do they take your INR in the vein or with a fingerprick-test?

We do not feel tired of Warfarin, on the contrary, but you have not reached that high INR yet and when you do and keep that INR steady, by perhaps selftesting, you will feel a lot better.

See to it that you get your high bloodpressure down! Important!

Best wishes from Kerstin in Stockholm

[Gaqn in reply to Lure2]

I'm having inr test in vein. They have a warfarin clinic every Thursday which I will attend tomorrow and apparently they finger prick test, is there a difference between both? Which is more accurate?

[Lure2 in reply to Gaqn]

The vein-test is more accurate and the fingerprick-test and veintest should be compared several times.

Also depends on if you have Lupus Anticoagulant as one of the antibodies. If so it could be difficult to selftest as the difference can be great. It is important that the difference is always the same between the two. If I have 5.0 when I selftest in my finger, I probably at the same time have 4.0 in the vein at the hospitallab.

Kerstin

[Gaqn in reply to Lure2]

Thank you, I have the lupus anticoagulant antibody!! I will ask tomorrow if my inr should be higher than 2-3. Having both test done in the morning.

[Lure2 in reply to Gaqn]

Not everyone has a difference but it is very common though specially with LA. You have to find out.

Kerstin

[Lure2 in reply to Lure2]

As the others say you should not take a veintest every day! It takes some time for the Warfarin to build up to the therapeutic range and also it takes 2 - 3 days or more to see the changes from the different amounts of Warfarin you take.

Kerstin

[WendyWoo50 in reply to Gaqn]

U will probably have to fight for a higher inr. But Prof Hughes says "this is a clotting disorder, not a bleeding disorder" yet many are afraid to set r inr high enough.

If u feel well at 2-3 fine but Prof Hughes suggests under 3 we inject Clexane because the bloods too sticky.

I think there is a blog or video or monthly question with him saying that.

December 2016 patient of the month - treatment failures.

I'm sure the others on here will direct u 💋

[Peecue in reply to Gaqn]

Do hope you can get it sorted as in the area I live they will not allow the INR to go above 3. I has to ask my GP to refer me to London where their recommendation of 3-4 is protocol. I wonder how many in my home town may not be receiving the correct dosage because of this.

London have said they are really happy to come and train Dr's in home town. But who am I a mere patient to even support this.

I really wish they (in my home town) would start to be more open to change

[Peecue in reply to Gaqn]

The vein test is done by hospital and finger prickly by a machine. What I have learned is if the doe you it gas to be constant in if the difference a vein then dosing should akways be done on that as there is some discrepancy between machines and hospital tests. I have my own machine -rather expensive but I'm dosed according to that. I have to have a machine check everything 6 months to ensure it is reading nearly the same as the clinic machine.

I have been told by Roche if there is more than 0.4 difference to do a vein sample and correlate with the 2 machines. If the vein and their machine iso equal but mine is not then it requires msintenance

[MaryF Administrator]

Hi it is early days, I hope this settles down, make sure you get regular blood tests also for your vitamin D, B12, Iron and Thyroid, as it can all add to fatigue being awful. MaryF

[Tim_Thorpe]

My target inr is 4

If you are hitting your inr you should be feeling better as the wafrin is doing its job

👍

[Fra22-57]

When you first go on warfarin your INR will be low until they get you upto target.I didn't have to have blood taken every day thou but dose was started low and built up slightly over few days then retest after week I think.sounds extreme for to be taken every day.Only time had done every day was after coming out of hospital this year. When you do have blood taken have it from different arm each time or scar tissue will build up and get vein blockage.

Once youthe INR is in range you should feel alot better.The administrators on here give invaluable advice who have helped me alot so don't be afraid to ask any questions and we will all try and help you as we're all in the same boat.

Let us know how you get on Gaqn

[Peecue]

That sounds so very like me 16 years ago a Nd as I didn't drive they agreed to me attending in the morning and ovine calls in eve. It does take 5 days to get doses to be sorted so it puzzles me why they are doing it daily. It would be so helpful if they are ginger prickly machine. In the end I bought my own because I was having to go to warfarin clinic 3 times a week by taxi. Now I do my own yesterday and ring them. We agree a dose and the next time to take a reading. Twice a year we have to get together to make sure the readings are are the same or within 0.3 of their machine and mine. Any difference then they are required to take a venous sample and make a comParis on. Sometimes they agree to do thiso, depending on which nurse is doing the assessment l

I do hope they can get you stabilised fairly quickly. Prof Hunt at one conference stated make sure that you are eating the same amount of Greens every day so that you are not fluctuating and people can't get their INR to stay similar but appears to be too high or too low. I have stuck with that but I still go up and down like a yoyo. Some foods alternative for some and not for others so it's trial and error. For me ginger and cranberries increase my INQ. . Antibiotics have an effect and so do NSAIDS such as ibupofen. So when you come off them the INR may decrease.

I do hope you get sorted soon and able to attend a clinic where they are able to do fingerprick tests. Best wishes and improved heath Pam

[preacher777]

Gaqn

[preacher777]

Be very careful of Warfarin. I am on it and 5 yrs later have developed calcifications on heart valve and vessels. Very bad drug. Im thinking of going to Vitamin K3 from Life Extension since it can remove some of calcifications and normalize blood. Also dark green salad every day is great. Oh by the way Warfarin is actually rat poison. Go another route and dont be on Warfarin for long. God bless

[Lure2 in reply to preacher777]

Hi Preacher 777,

I do not know if you have got Hughes Syndrome/APS as you do not say that.

I do not agree with you at all. I have also been on Warfarin 5 years and it has been my lifesaver.

When I met my Cardiologist last month (I did an Ecocardiography) as I have Pulmonell Hypertension and leaking hartvalves and Tricuspidalisinsufficiency. He asked what my INR was. I answered that I kept it on an INR of 4.0. "Very good" he said. I know other people with this illness that need Warfarin for heart with a rather high INR also.

It is difficult to keep the INR in range and stable but it is the best drug we have at present for our illness if we can handle it.

Best wishes from Kerstin in Stockholm

[Gaqn in reply to Lure2]

According to my consulant she told me that warfarin is the only drug licensed to my APS!! Although there is other anticoagulants available for other diagnosis!! But I am new to this so I will try this for now or until my consulant suggests otherwise!

[Lure2 in reply to Gaqn]

Hi Gagn,

If you do have Hughes Syndrome you should see a Specialist of Autoimmun illnesses. Where do you live?

There are also LMW Heparin in shots that can be used for our illness. If you are going to use Warfarin try to selftest and I in that case I wonder if you have Lupus Anticoagulant (one of the antibodies for diagnose Hughes Syndrome)? Some people (if they have not arterial clots) may use oral drugs also instead of Warfarin and LMW Heparin.

Kerstin

[Peecue in reply to Gaqn]

What they are saying is ifor you have had a venous clot then you may be able to use the newer medications. However if you have had an arterial clot then you can only have warfarin.

[Gaqn]

I've gone back for meds in the evening just for first few days as my dosage was high, apparently the give me a booster dose for 3 days but had a reprieve for about 3 days until today! I'm back in the morning for Another blood test as my inr dropped to 1.9 from 2.2 !! I suppose it will take a while to get it stable!!

[Peecue in reply to Gaqn]

Please bear in it can take 5 days to get alterations to a complete result. Checking it every other day and changing warfarin because of that result is not always the best way to move forward.

Don't know where you are living but ask them for their protocol for treatment so that you can work with them and not feel as if you are being left in the dark.

I remember 17 years ago going to clinic 3 days a week and my INR was up and down like a yoyo. By having an extended period it should allow you to stabilise better.

If it's too high I start to bruise. So then I take a test sooner. If I start speaking rubbish or I don't recognise people I know it is too low.

Gradually you will start to understand how you feel. Each one of us is different.

[jetjetjet]

Stress- and all your running - i know how you feel accept they call me with my INR - I normally have a blood draw every 3 days BUT when i have any procedure done and i have to Bridge with Enox i am tested every day till i am back in range and my range is 2.5 to 3.5.I can't finger test as i am L.A. positive and when we did try it it was so far off it was crazy .

[WendyWoo50]

I hope that Warfarin works for u. Many APS sufferers need an inr of 3.5 - 4.5 and feel poorly under 4. It is worth doing a chart listing how u feel every day and ur inr. I can't say enough medical professionals need written proof of how a medication is working b4 making changes to treatment. Good luck 💋