Warfarin and sinus headaches. I'm on 6 mg of warfarin a day and was recently told to take 7 mg just one day a week.

[loretta1106]

My INR was fluctuating and sometimes going below desired range. I noticed that the day after I take the 7 mg I have a sinus headache. I've always had sinus headaches but thought it was strange that they're now occurring the day after the increased dose. Is this possible or maybe just a coincidence? I'm taking tylenol sinus with a sudafed which I told was safe with for sinus headaches when taking warfarin.

[loretta1106]

Good point. I've only been dx 2-1/2 months ago. What a roller coaster this is to learn so much. My INR target is 2-3 and it's gone anywhere from 1.5 to 3.4 and lately 2.3-2.4 in the last couple of weeks. I'm on Lipitor which they thought was making my INR go down so then added 1 extra mg of Warfarin 1 day a week. They feel that will stabilize it. APS can be very scary at the beginning--getting used to meds, diet and finding the best care possible with doctors that understand APS-wow.

[Lure2]

Hi Loretta,

I am on 5 mg each day and 5 and 1/4 on mondays. It is very common with warfarin that you give different drugs different Days in the week.

You APS-doctor has put you on a low therapeutic range, Mine is 2.5 - 3.5 but as I selftest I try to keep INR around 3.2 - 3.5.

I Think it is a very big difference if you take 1 mg more of warfarin once a week.

If it was me 1 mg extra every week would make my INR on a rollercoaster. After 2 Days it would probably land on perhaps 6 and then try to reduce the INR. But you take Lipitor. I do not know what that is.

We are all different. You try that regim and see how it goes. Hope your doctor knows APS.

Best wishes from Kerstin

[loretta1106 in reply to Lure2]

True--once my INR went down to 1.5 then the MD upped me from 6 mg to 7 for two days and it rose to 3.4-wow.

[loretta1106 in reply to Lure2]

Lipitor is a drug to lower cholesterol and apparently is some benefit to the heart in general (and I'm not sure they know what that benefit it!!) I do not have high cholesterol but since my stroke involved a clot from my heart--they're covering all bases with warfarin, lipitor and plaquenil!!

[Lure2 in reply to loretta1106]

I take also drug for cholesterol. That sounds wise and perhaps your Rheumatologist is the one that can help you. Cholesterol drug can change your INR at first just a Little. I Think you will manage this. Kerstin

[Lure2]

I can tell you Loretta that today when I tested my INR at home this morning I had 5.4. Then I take away 1.1 (the selftesting machine gives a higher reading) and then I land on 4.3 which is too high. I am going on a big party this Saturday so I want to eat that food without thinking too much of my INR. I have already cooked some broccoli (not too much perhaps 40-50 g) Then I take an extra cheque tomorrow and probably my INR has decreased a bit at that time. I almost never change my warfarinintake. Probably I eat my usual (or a little less) intake of broccoli for dinner tonight. Always not big intakes. Just wait for the warfarin to have its time. When you live with this regime you know your drug. It takes time to learn. Just take it easy with Changes and CONSISTENCY in food. Make notes. I have never had a bleed and if I go too low I haver Fragmin 5.000 IE. I have never used it. I can tell you that I am afraid to go too low.

I love my warfarin because it saved my Life and is my lifeline.I am so fortunate to have doctors that know me and trust me because the APS-doctor is responsible for your treatment. He is so important and that he understands that we are not ordinary people who takes warrfarin and stay on it for years at the same level of INR.

I am rare with all my antibodies in high titres and Lupus Anticoagulant also so I could not have been on warfarin without my Coagucheque machine.

As I have said we are all different. BUT some of what I have told you above ought to be relevant to you also.

My very best wishes and Good Luck with your warfarin.

Kerstin

[Manofmendip]

Hi Loretta

I agree with what others have said on here. The headaches are more likely to be caused by a too low INR.

When I started on Warfarin in 2002 I had to work with my Dr to slowly increase my INR until my symptoms reduced. I needed an INR of around 4.0 to feel reasonably well. I used to keep 5,000IU Fragmin shots which I took if my INR dropped below 3.3.

Warfarin seemed to stop being effective for me in 2009 and in 2012 Prof Hughes switched me over to 15,000IU of Fragmin and stopped Warfarin, this has worked well for me.

Best wishes.

Dave

[loretta1106 in reply to Manofmendip]

I wished I had the doctors, understanding and treatment that is being given to APS patients in England and some other places. My current doctor (who I'm changing) doesn't understand what meds affect my INR and how to adjust it properly. My rheumatologist doesn't regulate it but referred me to a Coumadin Clinic who says I don't qualify as a patient because I have private doctors (although they have agreed to keep seeing me until I have an appt with another doctor in July) I'm learning so much more from this site than I would from my doctors. I'll keep thinking positive and do know that there are doctors in a hospital a bit far from my house who apparently are specialists in APS. I will keep reading all the information on this site and posting questions and know that I'll eventually get the care I need.

[Lure2]

Hi Loretta, I feel sorry for you. You have a difficult time but it will be better. You should speak to an APS-doctor that is obvious. But how....? I have gone through a bit like you when I started in 2011. The clinic did not understand but the doctor looked it up in a book and understood that I was special and listened to me that I must not go under 2.5. He was a GP and a specialist on warfarin but not APS.

If you have understood what I have written you can have some help from it I think but remember we are different. The thing is that you and me are at about the same amount of warfarin. There are people that are on very high mg of warfarin. One thing is a tablet (mine contains 2.5 mg) and the other thing is in mg! If a person takes 30 mg of warfarin a day and they tell him to change his INR then he may change with 1 tablet or even 2 tablets to have the same effect as when we on 5 - 7 mg a day must only change 1/2 tablet to not have a "roller coaster"

I have spoken to so many the last Days. How was it; do you have Lupus Anticoagulant?.

We have to "fight" all of us to be listened to. It is very difficult. Is it possible that you can go over to that hospital and have a talk with someone? Could you talk to your Rheumatologist and explain how difficult it is for you?

You are welcome to talk to me. If you change the drugs that effects your INR also..

The most difficult thing at first was to have in mind that warfarin makes the INR go up but broccoli makes the INR go down.

Best wishes again from Kerstin

[loretta1106 in reply to Lure2]

I really appreciate your support Kerstin. Knowing that there are people who are and have been going through what I'm going through now is so comforting. I see my rheumatologist on June 23rd when she will give me a blood workup to confirm the Lupus factor. I have to ask her about the Lupus Anticoagulant because I don't know much about that and thank you--I will tell her I'm having a hard time. I have eliminated avocado because that seemed to be something that was affecting my INR. I'm reducing my broccoli to about one little flowette a day and can my K come from a tiny amount of greens and then just other non-green veggies?

[Lure2 in reply to loretta1106]

Yes. I take about 40 g of broccoli. They sell here in Stockholm fresh broccoli of a packet of 250 mg. I take about 1/5. The importance is CONSTANCY with what you put in your mouth. Then you have to wait because the warfarin will make the INR change of a period (different to different people but about 2 Days or a Little more perhaps) of time. If you like you can eat more broccoli but then you must probobly eat more warfarin every day. Some anticouagulant clinics say that you must avoid K-vit vegetables but I know they are wrong. It is wellknown that som K-vit is good for the warfarin and good also for your body.

It is easier when you learn how YOUR body reacts (how sensitive you are that is how fast you react on Changes).

I know that they say that if you have Lupus Anticoagulant you can not use an Coaguchequemachine. I Think they are wrong. With the support of you Heamatologist and your clinic to investigate what the difference is between your Coaguecheque test and the lab vein test it is possible to have a machine even if you have a gap between the two tests. Only if there is the SAME difference month after month (important to do several cheques) between the two you can feel safe even if you are Lupus Anticoagulant.It is important to have a Close Connection to your Heamotologist and coagulationclinic.

Best wishes from Kersitn

[loretta1106 in reply to Lure2]

How many floweretts of broccoli is 40 g's. We don't measure in g's here - thanks

[Lure2 in reply to loretta1106]

I have probably made things more difficult than it is. I do not know what floweretts is either. Eat a little amount of broccoli or other vegatable which is very rich in K-vitamin every day and keep that steady and they have to ajust your INR to it. It sounds very difficult but it is not..

Did you see I had mixed up mg with tablet. Here in Sweden we count it in tablets.It is easy to mix it up.

I Think your doctor is on the right way. Good luck

[loretta1106 in reply to Lure2]

Thank you. I think I may be doing that exactly--eating a bit of broccoli then a bit of cauliflower too. Tonight I'm having a salad but with iceberg lettuce which I'm told is not high in Vit K!!

[Lure2 in reply to loretta1106]

I can tell you Loretta that this morning I had 4.4 on the machine.Then I reduce 0.9. That makes 3.5. Perfect.

Yesterday 5.4. Yesterday MORNING (just after the cheque) I eat perhaps half the packet of 250 gr broccoli ( a Little less perhaps).

.Careful not too much then you will drop too much. I am used to eat all sorts of veg but it is good that you can keep rather CONSTANCY in the intake. Brusselsprouts and broccoli are heavy veg with much K-vit and have a great importance if you want a change up or down with your INR

Try easy. Good luck. Finished for now Kerstin

[Lure2]

Hi Loretta, I have been tired probably because when I read what I have written I have mixed up MG and TABLET which is so easy to do. I Think that what your clinic has told you to take 7 mg one day and 6 mg the others is good indeed. I take 2 tablets a day and one day 2 tablets and 1/4.

So sorry. It is dangerous to mix up tablets and mgs. I also mixed up MG and G when I told you how much broccoli I bought. I laughted at myself when I read that I bought 250 mg instead of g.

Otherwise I accept what I have written. Hope you can understand. Sorry.

Kerstin

[Lure2]

I would like to add to my "novel" lately about warfarin. When you are Lupus Anticoagulant (which I have noted some are) and you try a Coaguecheque-machine it is the LAB VEIN TEST VALUE that counts!

When I started warfarin, before my machine was suggested, I took tests in my finger and that could not always be reliable.So depending on how the lab did the test.

Before the machine I always tested once a week and sometimes twice a week.

Important to try to take the warfarin the same time each day. When you selftest I noticed that the value differed a lot during the day. Now I only test in the morning and take the tablets in the evening.

I am going to the lab at the hospital next time in June (6 -8 weeks between the cheque at the hospital) Then I will take the machine with me and take a cheque there. Other times it must not be more than 3 hours between the lab vein-test and the machine-test.

Now I will "shut up" with my writing. Hope I maybe have helped someone. Took a chance. But if you read it (we use to count in tablets in Sweden) and the US in mg Look out it I have written wrong with mg and tablet!! You understand I am sure.

For me the Coaguecheque machine has made MY Life easier even as I am Lupus Anticoagulant!

Kerstin

[MaryF Administrator in reply to Lure2]

Hi Kerstin you have good knowledge and have clearly worked hard to manage your condition and work in partnership with your medical consultant, which is of course how it should be for everybody, their ideal dosage and management set by the clinic with the patient sticking to that and reporting any situation which is not working. You are so clear about the diet having to be consistent, thanks. MaryF

[Lure2 in reply to MaryF]

Thank you Mary. It takes time to find out about this drug. Especially when you are alone.

Have a nice weekend Mary. Kerstin.