Aps and topamax?

[Wolf1020]

I was diagnosed with aps years ago after being diagnosed with lupus before that. I had a dvt and pulmonary embolism and have since been on warfarin for the past 6 years. I recently saw a weight loss dr to try to get some help getting some stubborn weight off and she prescribed me phentermine/topamax along with eating well and exercise. Things were going well until my legs and head started hurting a good bit. I had some blood work done and even though im therapeutic my antiphospholipid tests are coming back positive. Does anyone have any experience with topamax inducing aps? I have asked my Dr's and no one seems to think anything of it.

[Star13]

I have been on Topamax or Topiramate since about 2004. Was diagnosed with APS in 2011. I lost about 30 1bs doing weight watchers. Kept it off for years until it started to creep back on the past three years when I cut down my dose a bit. Then migraines reappeared so went back end of last year and migraines stopped and I’ve lost about 10kl.

As far as I’m aware there is no risk to APS with this drug and I would not be without it. Hope it helps you too.

[psychRt in reply to Star13]

I too am curious about the connection between APS and Topomax/Topiramate. Its seems as if it works for you, but I am concerned about the connection between the 2 not whether or not it is effective, for migraines or weight loss. More interested, if anyone knows of a correlation between symptoms, onset, etc. use of Topomax and APS thanks!!

[Star13 in reply to psychRt]

there is no correlation between topamax and APS it would be purely coincidental.

[Ladydale]

I still have APS and been on warfrin since 2004

[Jenne1961]

topamax gave me crazy dreams almost as bad as gabapentin. Also mafe my feet and hands tingle worse I eas given it for migraines

You could not pay me to take it again

This was before my PE and being put on Warfarin

Fyi I didn't lose any weight I was on it for 3 months

Do not go cold turkey when you come off

Got to do it gradually

Good luck

Jennifer

[GillyA]

Being on warfarin doesn’t cure APS or stop you testing positive, it reduces the chance of clotting.

The fact you have tested positive again very likely has nothing to do with new meds, it’s just that you are persistently positive, which most are. I’ve tested positive every 6 months for the last two years and have been on warfarin the whole time.

[Wolf1020]

Thank you all for all of your input! It has definitely given me more insight! I have had a terrible migraine for the past several days and disconnected for a few days. I have always been told by my rheumatologist that the aps tests would be negative if I was on warfarin plus I wasn't having any issues so I never thought to question it. The only reason I had the test run was because another facility wanted a negative test before a procedure. I have learned over the years though that I have to be my own advocate. I can't tell you the number I've had to inform a Dr or Pharmacist that I shouldn't be taking something because of something else. Its only been recently that headaches and circulation issues have become a problem again. I did do a little online searching and have found some information that topamax could be connected to onset. I know that doesn't mean thats the case but I feel its definitely worth looking more into. It will be a mighty big coincidence that I test negative for 6 years and months after starting a new medication i begin having aps symptoms again. Hopefully the hematologist will shed some more light on things next week!!

[KellyInTexas Administrator]

I was prescribed topirimate 300 mg split dose ( 125 am / 125 pm for seizures.

It has the added benefit of helping with cluster migraines.

I failed lomotrogine ( caused Stevens Johnson’s)c, Dilantin, and Vimpat. ) I had break through complex partial seizures- temporal lobe epilepsy.

It was a couple years later I started getting DVT/ and APS was diagnosed as culprit for seizures.

Warfarin was really the thing that helped the seizures the best- but I’m to remain on the topirimate despite the anticoagulant.

[MaryF Administrator]

You need if possible to have a very good chat with your consultant, if the Topamax is working alongside your anticolagulation medication your specialist should be able to reassure you about that. Antibodies for Hughes Syndrome/APS come and go for a lot of people. A lot of people can go a long while before somebody thinks to test for Hughes Syndrome/APS and they may already be on a mix of medication in the first place. MaryF

[ChicagoCubs]

Hello. You're APS antibodies are always going to ebb and flow everyday. You're surprised you tested positive for the antibodies again? It is always going to do this.

As for Topamax - I would suggest reading about how it's linked to dementia. The nickname for it is "DOPEamax" for a reason.

[Thick_Blood]

there is neither correlation or causation between Topomax and APS. If you have APS you have it. Sadly no drug will get rid of it or cause it.