Not exactly the same but my first DVT was in my leg and then I got one in my arm about 7 months later, no genetic clotting factors, no other obvious risk factors other than being on birth control pills when I had the first clot. I wasn’t on the pill when I had the second clot. I do have an autoimmune disease which I learned can increase the risk for clotting.

The hematologist I spoke with after my second clot said there is a lot they are still learning about blood clotting, that there are likely clotting factors that are still unknown. Basically he said for some reason some bodies like to clot. I think there can be multiple things occurring in our body, a “perfect storm” that could facilitate a blood clot. Dehydration, sitting too long, maybe inflammation creates a hyper-coagulated state, etc.

Anyway, after my second clot, it was recommended I stay in anticoagulants long term. So I’ve been on them now full time since 2008. First I was on warfarin and then I eventually switched to xarelto.

It’s disappointing I know. If I can share anything to hopefully help, it’s that being on anticoagulants long term hasn’t really changed how I live. I haven’t had any terrible side effects and I just do my thing.

Hi, Gee, I have not been on this board for a long time and just popped in to ask a question. Glad I saw your post.
I had my first DVT 20 years ago. I was 52 years old. First DVT was massive extending from ankle to groin but originated behind my knee in my right leg.
Ten years later I got another DVT behind my knee in my left leg. I believe they labeled it "unprovoked". Oh, forgot to mention that my first DVT might have been caused by a very long car ride which was 10 hours long.
I was advised at that time to go on an anticoagulant "for life". I declined.
DVT number three was only 3 years later in my left leg. I thought I had a few mosquito bites on my calf - never dreaming it was another case of DVT.
Anyway, I am not 72 years old and on Xarelto for life. I had been on Warfarin on and off. I had been testing my own blood but when Xarelto came up with a reversal agent I went for it. One pill a day. No blood tests. No monitoring of food. Yay. The only problem I am experiencing is very very dry skin on my face. Very disturbing. I wonder if anyone else has had that problem when taking Xarelto?
So, here I am at age 72 having had to battle DVT's for 20 years. I consider myself extremely lucky to be alive. Next thing is I was told in February that I needed a hip replacement. Oh well. That's not going to happen anytime soon especially if I had it I would go to Boston which is now almost a hot spot again.
Good luck to you. Keep us posted.
Lin

Hi everyone,

I just joined and glad to be with others affected by DVT's. My first was in 2012 while training for a bicycle ride from Los Angeles to Colorado. No family history, why was I the "chosen one". I was in great health and worked out like a horse. So after 6 months or so I was weaned off warafin and kept on going!

December of 2015, diagnosed with Esophageal cancer stage one. Great health plan through being a fortunate union member, 1.6 million dollars later and I was recovering in the City of Hope in California. Lucky to be a survivor and 5 days later needed emergency surgery for a mishap that poked my colon during cancer surgery. During this recovery I was forced to walk and move ( motivated nurse) and boom... blood clot let loose and heading to my lung! The attending nurse reacted in time and stabilized me. After which I was on thinners again until weaned off.

One DVT in 2018, cancer surgery related and weaned off again.

Last DVT August 2020, My body is trying to tell me something? Given Eloquis and told this is for life. Had a Lung CT scan days later and found clot in lung.

I was on Eloquis and was tired from day one. Began sleeping 14 plus hours a day along with being too tired to stay out of bed. Slept on and off 20 hours one day. Finally stopped taking meds and ALL of my energy came back along with some pissed doctors for being reckless.

Now I am 56 years old and usually a very active person. This round of blood thinners seems to make me tired also. Does anyone also experience this? I am also on blood thinners for life so I know how depressing it is. It could be worse...like cancer! haha. I really feel like this has slowed me down and wonder if others feel like this. Also a concern with that whole Covid19 thing. I could worry and be hit by a car in crosswalk...life can be funny that way.

Hi wow you’ve been through a lot.

I have been fortunate to have not had any truly noticeable side effects from any of the blood thinners I’ve been on. I started w/ warfarin and now on xarelto the past few years. I mean bleeding and bruising sure. Oh, with warfarin I started losing hair. So more a blow to my vanity than anything else.

Fatigue is such a common symptom or result of so many things so it’s hard to sort out. In your case it does seem directly related to the medication. Have you asked your doctor if there’s an alternative medication? I know there are a few different ones available.

Also sometimes side effects from medications can eventually pass. I have ulcerative colitis and had to go on a medication that gave me a headache everyday (known side effect) for like three months and then it just didn’t. It was weirdest thing. So I don’t know if you could experience something similar where the fatigue eventually lifts. Might be a discussion to have with your pharmacist too. They often have insight into the medications that perhaps doctors aren’t entirely tuned into because they are focused on the actual condition or issue itself.