Headaches

[sperling]

Is normal always have headache when you have Hughes Disease? My INR is always around 2.6 to 3.1. I had a stroke in 2007, my blood spec and GP does not I still headaches, also Nero also have no answer. Please advise, Thanks alots

Mike.

[MaryF Administrator]

I notice you have just joined the forum, welcome, firstly where are you located, and do you have a Hughes Syndrome/APS specialist? Some do better with a higher INR but it is also better to address all other possible health problems. MaryF

[sperling in reply to MaryF]

Thanks I live Alberta Canada, Our blood spec.

[MaryF Administrator in reply to sperling]

Hi, I enclose this you may wish to ring the contact on here for help, and of course we do have some members on here from Canada: apsaction.com/research

MaryF

[Sara_A]

I have lupus and aps and suffer with really bad headaches. I have to take betablockers for them and as soon as I try to come off them I get headaches straight away again. I've recently been changed from aspirin to clopidogrel and they said if that doesn't help there is apparently new research that daily heparin will be better, which id rather not have! Had it before thru my pregnancies and hated it!

[sperling in reply to Sara_A]

Thanks, I am on Warfarin, my INR sometimes various.

[10yearsandcounting]

I was first diagnosed with APS over 8 years ago. The headaches have been my primary complaint the whole time, as I never had them at all before being diagnosed with APS. I've tried everything imaginably possible to relieve the headaches including watching my INR closer (my target is 3.0 to 4.0) and going to 3 different Neurologists trying over a dozen different headache meds that didn't work. I even tried Xarelto (which resulted in me having a stroke 7 months later) and Lovenox shots (same thing as Fragmin) with no luck.

However, I just finished my first series of four I.V. Infusions of a drug called Rituxan (Rituxamab) that was recommended by several specialists, including those at the Mayo Clinic in Minnesota. I am excited to say for the first time in 8+ years, I'm seeing a change in the severity of my headaches. Doctor says it will take 2-3 months to see in my blood tests how well the Rituxan is eliminating the APS cells in my body, but it has a proven track record to work. Most likely we will need to do another series of infusions in February, but I'm ready for it based on the results I'm already seeing and feeling.

Rituxan is a Biotherapy, and not Chemotherapy, so it is much safer. I had no side effects at all from receiving the Rituxan.

It might be worth asking your doctor about this Rituxan. So far, I'm a believer in it that it works.

Good luck!

Tony...

[sperling in reply to 10yearsandcounting]

thanks alot

[Sara_A]

Thanks, I won't dismiss the heparin, I think if the clopidogrel doesn't help them I will go for that. My memory at the moment is awful, thinking so hard constantly makes my brain hurt!

[Lure2]

APS is treated with bloodthinner. We have too thick blood and most of us need an INR over 3.5 to get rid of the symptoms. I am a living proof of prof Hughes theory. He talks about it himself the other day as an answer to a member here.

If you can not get your Warfarin (selftesting is easier) at a rather high dose and also stable there, you can have a Fragminshot as an alternative. The Neurologists do not "get" that we have too thick blood.

Best wishes from Kerstin in Stockholm