Lupus & DVT
Last updated: April 2023
Hi, I was diagnosed with RA last September, then LUPUS last October & am on daily medication (prednisolone, betolvex & Plaquenil) and weekly medication (Methotrexate followed by folic 2xa week).
Trying to find the right treatment
Last late October I was diagnosed with DVT on left leg & was in ICU for 3 days. I had surgery & now have a stent. After the clotting lessened & was put on a blood thinner & Eliquis. Up until now (March 2023), my rheumy found out that I was still producing the blood clot. Therefore I was put both on a high dosage of both Eliquis & Warfarin for 3 days as my INR was so low. Recently I just started taking Warfarin & no more Eliquis.
I am a Filipina, I was raised & live in Iceland. My grandmother died of a blood clot in the brain & a heart attack.
After these new findings, I feel so exhausted, and nauseated as I feel like this is a yearly incident and I am back again to square 1 after getting to know my RA - LUPUS & DVT.
My rheumy (next meeting is in May) just referred me to another hospital (the thrombosis department, which only has 1000 of known patients with DVT) due to my RA which is why clotting in my blood occurs. I still cannot get a grasp on all these diseases yet.
Juggling multiple conditions at once
I am reading more about Lupus & DVT & it seems like I might have APS but I do not like diagnosing myself. I just need to understand more about this disease. I do not know what to do.
We do not have a Lupus or DVT help center, but just a Rheumatism help center & they do not have or are not aware of any LUPUS+DVT patients. It is very helpful but still not enough for my liking.
I have already made an appointment with a dietician and also confirmed that she does know of a patient that has both.
I do not know what to do more....
Which resource do you think is most urgently needed in the lupus community?
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