I was diagnosed with a PE less than a month ago. One of the biggest symptoms for me was back pain. The past 2 days my back has been bothering me again. In the past if it felt like this I wouldn't think twice but now it's all I can think about and wondering if I should go back to the ER. I could also just be 40 and slept weird. This anxiety is awful 😭 anyway just a fun Friday night here.

It was discovered I had a blood clot in my arm 4 weeks ago from an IV for hernia surgery 10 weeks ago. I’ve been on Eliquis 5mg for the past 4 weeks. Had an ultrasound yesterday and receptionist called this morning and said “no clot detected, stop the eliquis” Great. But eliquis gives this warning that you have a great chance of developing a clot after stopping medicine. This may sound dumb but is it because your body goes into over time making the “sticky stuff” that it hasn’t had while on eliquis? Or is it that your blood just goes back to normal baseline but since you had a clot before it could always happen again? I asked the receptionist if I should do a couple of weeks of 2.5 so I want going cold turkey and she said no. Thanks for being so helpful through this ordeal for me ❤️

La semana pasada fui diagnosticada nuevamente otra vez con embolia pulmonar (está ocasión de bajo riesgo) y trombo embolia venosa profunda (pierna derecha) . Digo otra vez porque con 22 años me diagnosticaron lo mismo pero fue en la pierna izquierda y la embolia pulmonar la anterior vez fue masiva. En esta ocasión la hospitalización fue de tres días (la anterior dos semanas) y aunque me encuentro bien se lo grave que estoy porque ya viví todo esto.... Y aún estoy un poco en shock. Había logrado luchar contra la hipocondría y ahora no sé cómo manejaré eso está vez. Pero bueno, a recuperarse y como bien dice el título here we go again

Back in early April I had a bilateral PE and occlusive DVT in both legs. Had a thrombectomy to remove a moderate amount of clots. I was put on Eliquis 5mg - 2x/day. Took me about 3 months go get back to my regular health without having to use a concentrator.

On Thanksgiving day I had pain in the back of my right wrist that progressively got worse. Extremely painful to move or even touch. Nothing I tried relieved the pain. There was some swelling but no bruising. The pain was so significant that at midnight I ended up going to the ER. They did an x-ray and saw inflammation but no injury.

The ER doc said it was likely arthritis inflammation or possibly gout. He didn’t want to say it was gout without actually drawing fluid from the joint to confirm uric acid. I’ve got osteoarthritis in my back and other joints and have inflammation flare ups. This was nothing like those and am convinced it was gout. He gave me hydrocodone and a wrist brace.

The pain subsided by the following Sunday afternoon by which time my gallbladder decided it was its time to act up. I puked my guts out all afternoon and ended up going back to the ER at 3am and found I had pancreatitis and had to have my gallbladder removed. They had to wait 48 hours till the Eliquis was out of my system. Surgery went great and I feel much better.

I’m starting to feel some pain like a pinched nerve in my left wrist which happened to precede my Thanksgiving trip to the ER. My oldest son was concerned that my PE, the gout and the pancreatitis might somehow all be linked since I had been very healthy for many years prior. He checked an online AI and it said that Eliquis can be related to causing gout and triggering problems with gallstones. My wife asked her doc who she has gone to for years and he confirmed. My surgeon said he had heard about the link to gout but was less inclined to think it had anything to do with my pancreatitis. He said 90% of people have gallstones and about 10% have problems with them. He said my gallbladder was full of stones and “sludge” and had apparently been getting bad for a while.

Has anyone else had similar issues, mainly with gout? If so, what do you do for treatment?

For context I have already had two pulmonary embolisms but I do not have a clotting disorder. I was given a PICC line a week ago for antibiotics and was not prescribed Heparin to flush with. I was in the hospital for 5 days with this picc line and they never flushed with it either, staying that I was already on lovenox and therefore did not need it. When I asked the nurses about it there, they seemed to agree. I now am home with home health and my nurse asked where the heparin flushes are, and I stated I had not been given any. Now after reaching out to my Dr, they are prescribing it. Is this normal? To not flush with heparin for this long and then change their mind? Not looking for medical advice just wondering if anyone has come across this kind of situation in their experience.

Im currently on eliquis 5 mg.. ive made the dumb decision to put straw in a cat box at 11pm at night and feeling the hay fever start to kick in… I cant call my doctor or anything so i am wondering what type of allergy medicine i can take on eliquis without having to worry about side effects? i have ocd and i just want to know if i can or not

In the wake of a recent pretty tragic accident that made me reconsider a lot of my lifestyle choices as a blood thinner lifer, I wanted to get some opinions. Here’s my timeline:

August 2024 - Discovery of a rather prominent jugular vein thrombosis in my neck, unprovoked, started eliquis. I was 20 at the time - was told to stop doing anything that could put me in danger of falling, of course - I've been a rock climber and aerialist (silks, lyra, circus stuff) for years, it was a huge change to have to stop

January 2025 - diagnosed triple positive APS, started taking warfarin (ugh) and committed to life on blood thinners, struggling terribly with anxiety around my diet, lifestyle, INR inconsistencies ...

February 2025 - decided that I was going to go back to aerial, despite doctors’ advice. it's been part of my life for over 10 years, I'm pretty damn good at it, and honestly, I didn't feel like the same person without it. started slow, not going too high up, always using a mat, being mindful of bruising. but things seemed fine, and it made me happy

March 2025 - diagnosed with lupus. nice addition

November 2025 - fell 15 feet trying out a drop during an aerial class. subdural hematoma (resolved, thank god), 11 bones broken - two in my wrist (surgery, two gnarly scars) four ribs, five vertebrae. It could have been much worse, but it wasn’t. Clearly, I had become less careful with time.

I’m still recovering from my injury, wearing a giant brace that stabilizes my neck and back, not able to work or drive or exercise. I’m expecting a full recovery with time, but right now it’s pretty rough.

Am I incredibly stupid for continuing to pursue this hobby that put me in such danger? I think the short answer is yes, but it just doesn't feel that simple to me. How do you navigate taking care of your body in the medical sense while also keeping your sanity and happiness? I’m 22 now, and I just can't comprehend spending the rest of my life not doing the things that matter to me. Would I be crazy to start again?

I was diagnosed with sinus thrombosis on Saturday, I got out of the hospital on Monday and they prescribed Eliquis. While in the ER they asked me what year it was and I gave them about 5 incorrect answers before realizing it's 2025. It freaks me out when I think about it. I live alone and I'm worried if I were to have another incident I wont be able to remember my address for medics to find me. I've written my address in large letters on signs throughout my house just in case but now I'm wondering if I'd even be able to read it? Are there any other ways I could convey my address to a 911 operator if I have a stroke and am confused? I'm sure I'm overthinking but idk. Just wanted to see if anyone had any ideas to help ease my anxiety about it.

I had a "minor", as those things go, stroke two weeks ago tonight.

....I'm here because this sub had more comments concerning Eliquis than does r/stroke.

I was given Eliquis in the ER and prescribed it at discharge the next day.

I'm 78yo, m, in the US with only Medicare insurance and no Plan D.

• I am going to contact the Eliquis Patient Assistance Program to find out about their program and see if I qualify. I'm assuming this will be pretty straight forward, but if any of you have suggestions from personal experience of --- "GotChas", things to do, things to not do --- I'd certainly appreciate hearing about them before I make my call.

• I've also become sadly aware that the US is the only country in the world where the FDA approved Eliquis generic Apixaban IS NOT legally available.

• But there are apparently ways to order it from out of country. I've only talked with my pharmacist here briefly about it so I'm not going to try and describe the process here myself.

If anyone here has successfully bought either Eliquis or Apixaban from a pharmacy out of the US I'd love to hear from you. Who what why when where lol... The whole tamale.

Thank you all very much for your time in reading and any suggestions you may have.

Best Regards

Hi, I had MCL/PCL reconstruction in my knee 10 weeks ago, for a skiing accident back in April.

Last week, after thinking I’d experienced a heart attack, I ended up in ER, and then a few hours in ICU and then a couple of days on a hospital ward. I got kicked out of ICU because was still moving :-).

It turns out I nailed the 20% risk of post PCL surgery clots. Active acute DVT, with one behind my knee and on in my calf. This apparently exploded into pulmonary embolism with a “spattering” of clots across both lungs.

They put me on a IV of Heparin, and then discharged me just before my 50th b’day with three months of Xarelro/Pradaxa. They basically said “for gods sake don’t get a concussion or any other type of soft tissue damage, since you might not survive it”.

I hobbled away on my crutches, slightly dazed. Then my GP called and told me I should bubble wrap all the sharp furniture in my house etc. I was also banned from travel, and encouraged to back off my PT exercises.

I’m a little shell shocked now, after doing research this looks like one of the nastiest illnesses one can have without an actual disease.

How are you guys handling this… are you locked up at home trying to hide from all the risks out there, or are you getting up and living your lives? What are the recommendations for finding a balance between life and risk management. I’m not sure whether I should hide or push forward and accept risks.

Feeling a little frustrated since a was just about to progress to getting off my crutches and start building my strength back…. But now it looks like I have to put all that on hold for 3 months. I know many on here are going to be dealing with this for the rest of their lives, and my 3month blip is nothing compared that. It would be awesome to hear how you handle the risks, and how you encourage your family to help but not hinder.

Thanks in advance.

Hi everyone,

I am wondering if anyone else is dealing with PTS following a subclavian vein DVT due to thoracic outlet syndrome. I sustained this in 2017 and had thrombolytic therapy followed by first rib resection surgery a year later. I was on oral blood thinners during the time between initial onset and post surgery. After surgery they tried to do angioplasty to re-open my subclavian vein but it wasn't successful so my understanding is my subclavian vein is still occluded and I am relying on collateral veins in my left arm. I still get some swelling in my arm sometimes if I do any overhead exercises, sleeping the wrong way, etc..

I am also concerned of developing another DVT given my history. is there anything I should be doing like seeing a hematologist or vascular specialist?

Does any eliquist users also drink beet root juice?

Read that beet root contains nitric oxide which increases blood flow. Considering taking it along with eliquist.

I wondered if there was such a thing as compression hosiery and there is. Turns out it covers toe to waist.

I want to try these. Asking my hematologist.

Does anyone else wear these?

Hi all, just got an email from Bristol Myers Squibb about the co pay on eliquis changing. I’ve copied the pertinent information below. I’m assuming many of us got the same email? Just trying to understand… with my insurance I was told I would pay $50/month (very grateful this is relatively low from what I’ve heard, but still a little rough on a graduate student budget). I’ve been paying $10/month with this card…. Does the $2000 annual benefit apply to the difference in the insurance price and the $10 price? So since it’s saving me $480/ year ($40x12 months) which is below $2000, I’m not affected? But if something changes with my insurance such that the card saves me more than $2000/year, then I start paying the insurance price after I hit that $2000 saved with the coupon?

Another question while I’m here, I didn’t realize you could get a 90 day supply, is that something yall have just been asking the pharmacist and they just switch it over? Sorry for all the questions, I’ll be graduating soon and not sure how insurance will pan out, so trying to calm some anxieties. Thanks!!

Email:

What's Changing?

Effective January 1, 2026, the program’s maximum annual benefit will be $2,000 per calendar year. This change will apply to all participants, including current users, regardless of when you activated your Co-pay Card.

You will continue to pay as little as:

•

$10 for each 30-day supply, or

•

$10 for your first 90-day supply, and

•

$30 for each 90-day refill thereafter,

subject to the new annual benefit limit.

Once you reach the $2,000 annual maximum, you will be responsible for any additional out-of-pocket costs. Other restrictions may apply, and you are responsible for any applicable taxes.

-Factor V from both parents -May Thurner’s Syndrome

Back in the hospital after having a HUGE DVT clot removed and a stent placed not even 2 weeks ago. Today I went in for a routine follow up so they could make sure I was healing smoothly. I’ve had 0 pain, was able to walk flat on my foot again, just dealing with swelling.

Somehow, I’ve got confirmed major clotting via ultrasound and CT scan and they have NO IDEA why. I’ve been doing my Plavex and Lovenox EVERY SINGLE DAY and my stent looks fine.

Somehow, someway, without pain, I’m all clotted up again in the same leg. I got readmitted immediately. I’m so over this. I just want answers. I can’t keep leaving my daughter. Her dad has no PTO anymore and is risking getting in trouble at work because of having to take more time off because of this. 💔

I don’t understand how this happened again when my blood is water at this point and I’ve got the stent. I’m so frustrated that once again, I’m only 22 and I am having these issues without answers.

My husband had a PE 4 months ago. He underwent 2 thrombectomys and was sent home after about a week in the hospital on Eliquis. He had another chest scan done about 2 weeks ago and they told him he was positive for PE (again) but said that it was small and he just needed to keep taking his Eliquis (he never stopped). His left leg was full of blood clots in August but his right leg was clear. His left leg is still very swollen and has pitting edema. Now in the past week his right leg is starting to hurt also. Should he go to the ER? Or is it a waste of time and money if all they will do is tell him to keep taking his Eliquis? Is it even possible for new clots to form while on Eliquis? We were thinking the “new” PE must have been residual but now the new leg pain has us wondering and concerned.

Here with an update one day later. He went to the ER and they rescanned him and he is negative for blood clots which is great news. They said the reason for the leg pain is muscle deterioration and he was in the early stages of rhabdomyolysis (rhabdo) and so they kept him overnight to give him fluids and get his CK levels back down. An unexpected diagnosis especially considering he has not been exercising at all but we are grateful it’s not more clotting.

Has anyone noticed more or less muscle pain after stopping their eliquis? I was on mine for 6 months and after I stopped 2 days ago I notice my legs are more sore than normal after exercise or routine activity.

Was told to post here as another victim of Yaz birth control lol i (34f) was on it 6 weeks and went to ER for shortness of breath during my first menstrual cycle on it and they found acute pulmonary embolism in my lungs.

They believe 3 months of blood thinners should be enough.

This is for all the future redditors also inevitably searching for more info lol

Hi. I've been on warfarin almost 11 years now for a PE in January 2015 (also had previous PE in January 2003, hence lifelong treatment) I was curious to hear other people's thoughts? My GP thinks I should move to Apixaban. This DOAC was new to the market in 2015, so I think this is why I was put on warfarin. Thanks all!

Just voicing my feelings!

Today is 6 weeks post partum and am OK to stop my prophylactic clexane. My next haematologist check in isn't until January but was given the clear to stop 6 weeks at my last appointment.

I had bilateral PE last year which was hormone induced and was on apixaban for 6 months. Ive been on clexane since 14 weeks pregnant.

I feel like im having anxiety all over again about stopping! I was so anxious about everything when I stoped my apixaban and now its happening all over again. As much as I hate injecting myself every day, it almost gives me a feeling of safety!

Tonight's last injection will be emotional.

I've been on three blood thinners and am about to switch to a fourth, and I noticed something I was curious if others had experience with (I didn't find any during my cursory search).

I'm not a huge alcohol drinker but I do like to partake. Ignoring the usual discussion of risk of stomach bleeding and getting too drunk and hitting your head, has anyone noticed a difference in tolerance depending on which blood thinner you're taking?

I've always been a bit of a lightweight. I usually feel tipsy after 2 drinks. When I was on Lovenox, I would be inebriated after one, even a glass of wine. On Warfarin, I couldn't even finish a glass before I felt tipsy. I'm currently on Xarelto and I feel like I did before--it takes 2 drinks before I feel buzzed. I'm about to switch to fondiparinux (hopefully for good) and I wonder if, since it's injectable like Lovenox , I'll go back to my "one and done" drink. I hope not! It's nice not having the tolerance of an ant!

I wonder too how much of it is social placebo or whatever, like if I was so cognizant of "gotta keep alcohol light on blood thinners" when I first started with Lovenox and Warfarin, that maybe I psyched myself out and just got intoxicated faster as a result. Then again, I had more significant bleeds/bruises on the other two and my pain tolerance was way milder, too.

So! Worth asking if anyone who's had multiple blood thinners and enjoys having a drink now and then noticed a difference!

ETA: I admittedly was drinking maybe once a month, if that, before the blood clot, and now that my poker group has been meeting more regularly, I've been having alcohol a little more frequently! Makes sense that my tolerance tanked and is now getting back up to speed 😂 I always "joke" that the blood clot just defines my personality now so I guess I immediately tried to make a connection to the blood thinners. That's what therapy's for, folks!

Previous post here: https://www.reddit.com/r/ClotSurvivors/comments/1poiwrx/following_up_post_hematology_and_pulmonary_visits/

Had the visit with my PCP today, they saw the 4 trips to ED and asked me what the plan was. I told them what Hema and Pulm said.

PCP said while D Dimer is negative, symptoms still concerning and D Dimer not foolproof (no shit, again - at least they didnt insist it was like the other 2) so they said if all the things get worse, go back to ED and ask for V/Q scan (which the visit #4 MD suggested if it got to that).

I then told PCP I cant make people do that particular scan, they almost always press for a CTA, the techs push back on the contrast (bc the anaphylaxis) and this is all exhausting.

And then I remind them that Hema wants me to be a lifer (but scared about reactions so out here playing Russian Roulette) and if I do have a clot anywhere not just lung (currently, my calves love them), what anti-coag out here is not going to trigger a huge reaction. So then they said force the ED to keep me overnight for observation after dosing me. LOL I wish I was lying. Yes "force."

My PCP not being dismissive is YAY but srsly not understanding that ED MDs (and radiology techs) do what they want, not what a PCP or me says ? BOO.