Headache and asthma

[DannyBoy1]

I have APS and severe asthma. I've started getting these horrible headaches. Regularly. I can take few OTC pain meds due to the asthma. I'm limited to acetaminophen and it is less effective than I'd like. What have others done to minimize headache?

[DannyBoy1]

PS: I am on 6 mg of Warfarin daily and my INR is usually around 3.0

[Lure2 in reply to DannyBoy1]

Hi DannyBoy1,

3.0 in INR is rather low. Have you tried to be around 3.5.? I selftest so I can tell what my INR is. It is very seldom I have such a low number though. Of course your headache must not depend on a too low INR but many things are actually due to that we are not enough anticoagulated. That is my suggestion. I guess it is vague one.

Best of wishes to you from Kerstin in Stockholm

[DannyBoy1 in reply to Lure2]

Thanks. Point taken. As mentioned, my doc is unfamiliar with APS and as such is unwilling to adjust my meds above the "norm" for blood clots alone. I am trying to get into the only APS trained doc here but until then, my INR is what it is. The pharmacist that draws my blood monthly understands APS enough to sympathize but isn't allowed to change dosage without Doctors consent. Something about him being the one True and Only god. In the mean time; "I need a new drug."

[Lure2 in reply to DannyBoy1]

I understand. Good that you will have an APS-trained doctor soon. I have heard that some here need Aspirin also. I am not sure it will help you as you have asthma also.

Hope someone will answer you and suggest a better alternative. Good luck from Kerstin!

[Manofmendip]

Where are you from Dannyboy?

I agree with Kerstin that you might well find that you feel better if you can gradually move your INR up to 3.5 or even 4.0, which is where mine had to be for me to feel reasonable.

Dave

[DannyBoy1 in reply to Manofmendip]

I live at the end of the rainbow here in Portland, Oregon. Our one APS trained specialist works up at Oregon Health Science University. (Ironically my wife is finishing her medical studies there next year.) I found this Doc on the American APS web site. Another lady here in the group sees him and thinks he does a good job. I tried adding small does aspirin myself (without the docs knowledge.) Had a major asthma event so I don't recommend it.

[Manofmendip in reply to DannyBoy1]

You guys in the States seem worse off for good consultants than we do over the pond, here in the UK.

Keep in touch and good luck.

Dave

[DannyBoy1]

You are very right. R&D money is spoken for here with Cancer, AIDS and heart disease. While all three of those are, in many, many cases, fully preventable, APS is out of our control. I'm not sure how to raise awareness. My pharmacy tech is more aware and is now telling me about similar symptoms in his other patients. All with complete respect for patient confidentiality of course. It has his attention and he has done a little reading. If my GP just had the time to read "Sticky Blood."

[Manofmendip in reply to DannyBoy1]

Danny

Go on hughes-syndrome.org and download any useful information and print it and give it to your GP to read.

Best regards.

Dave

[Salty]

Dannyboy, once you get to the APS specialist, you might find the addition of plavix to be helpful--a different anti-platelet agent from aspirin that should not affect your asthma and if a higher INR is not helpful then LMW heparin may be effective. I need LMW heparin and plavix to control my headaches, memory loss etc. it took awhile to work out, but with the right combination, I NEVER have headaches anymore