I also am on xarelto and have had a recent scare. My hematologist told me its unlikely that I formed new clots in my lungs while on xarelto but it is still possible. He told me that he would do another CTA and if there were more clots I would be admitted into the hospital and be getting heparin and we would need to switch my blood thinner. I did end up getting another CTA because he was VERY concerned (even while he was away on vacation) and it showed no new clots. He said the pain I am feeling could be from the damage the clots have done and he wants me to see a pulmonologist. I would go with your gut and if you think somethings going on go get checked out! You are still very early on in the recovery process so it probably is just "residual" pain like what I was having but again it is better to be safe than sorry!

Chest, back and shoulder blade pain is pretty common. I had ion and off for a few months after diagnosis. You just may have over done it.

But it doesn’t hurt to call your doc if it would ease your mind. It’s possible to clot while on anticoagulants but it’s pretty unusual. People with genetic clotting factors have more risk for clotting while taking anticoagulants.

Thanks for the replies and advice.

I called my primary doc & he told me to go to ER. They did blood tests & xrays, but no CT scan. Blood work showed I was low in potassium--dropped from 4.3 to 3.0 in the 3 months I've been taking Xarelto. Could be the reason for all the fatigue... I need to get that resolved.

I still have the shoulder blade pain, but the ER doc thought it may be muscle-related. He said in his 16 years as an ER doc he's never seen a patient clot while taking an anticoagulant. He said it could happen, but was very rare. That was reassuring and rmb, what you say about clotting disorders makes sense. Also makes me feel better and I'm not as panicked about this shoulder blade pain.

rmb, are you still on blood thinners? Have you had weird blood test results, like low potassium?

I've been drinking a LOT of water (80 ounces a day) and I wonder if that's causing the low potassium. I'm a bit alarmed at how quickly it has dropped.

Hi, I’ve been on anticoagulants since 2007. I’ve not had low potassium but I had to be treated for dehydration a couple of times in the ER during the first couple of months after my PE diagnosis. For some reason I struggled with maintaining hydration but I think I was just such a nervous wreck during the time that I just wasn’t paying attention to how much I wasn’t drinking.

Hi drgps (& group)

I just joined this group today and I am so glad to have found it!

drgps--I am kind of in the same boat you are in. I was diagnosed with my PE on 3/13, so only a little over a month ago, and for the most part I have been lucky to have not had much pain--until today. I recently started walking more and doing some yoga for exercise and I am wondering if that has exacerbated it? I scheduled a doctor's appointment for next week to be checked out and make sure--because after all of this I have become EXTREMELY paranoid about every little twinge--but I am thinking it is more than likely residual pain since it hasn't been long. I appreciate any feedback anyone can provide--I am new to this and don't exactly know many 26 year olds who have had a PE.

I also meant to add...I am on Xarelto 2omg at dinner time and so far, it seems to be working okay.

Autieloo19, that feeling of paranoia has yet to disappear for me either at 3 months. Makes sense as we recover. Every new twinge or pain gets our attention and I'm still learning to ID the "normal" residual pains from the "new" and "worth checking out" type. I've had 4 trips to ER since my PE and 2 CT scans, so I'm growing a bit weary of it. I'm optimistic in a few months, this will all be routine.

As for physical activity...I was feeling GREAT and then I started exercise class, walking/hiking, using a rebounder, and I think I did too much. Sounds like you may have done the same, but seeing your doctor to get reassurance is the safest way to go & will give you peace of mind. Never hesitate to go, although I really didn't want to deal with it, and when I called my doc, he sent me to ER! That's usually their default if you've had a PE and you call complaining of back or chest pain.

One thing that's common for most of us, which is why these forums are so helpful. We don't get a lot of support from the medical community. They diagnose, prescribe meds & send us on our way. Recovery takes a longer time than I thought. I naively believed the meds fix it all and you pick up where you left off...not true. Takes time and the duration varies for each of us. Two steps forward, one step back at times. So, listen to your body and your gut and take good care of yourself. With this condition, I've learned we have to be our own advocates. Hope all checks out OK for you!

drgps: Thank you for your reply and insight! Everything checked out fine so I am happy for that but I still remain scared to do too much activity. That in itself is frustrating because I am generally very health conscious and being sedentary drives me nuts! I hope you are doing well and that the paranoia is beginning to subside. It's all very much still a struggle for me!

Autieloo19, good to hear all checked out for you! I think anything that concerns us should be checked out. Better safe than sorry. Ratcheting down physical activity & pacing ourselves might be the best thing of all, but noone tells us that. I've stopped all exercise for now, until my pain goes away.

I saw my doctor about my extreme fatigue & pain and he prescribed potassium pills, which has totally resolved the fatigue issue. But, I STILL have pain. My doctor thinks it's muscular, but it moves to other places on my right side. Started in my shoulder blade and is now flank pain. Two days ago I could barely move and I've not been exercising at all. I don't get it. I could swear this is another clot, but it doesn't hurt when I breathe in.

Paranoia will be with me for awhile, but I do try to relax. We are still PE newbies ;)

I just wanted to post an update. I switched to 5mg Eliquis 2x/day from 10mg Xarelto and so far, so good. I had so many side effects from Xarelto: chest/back/flank/shoulder blade pain, severe muscle spasms, bleeding gums and night sweats. Some days, I couldn't function at all, especially when I was on the 20mg Xarelto. Those side effects sent me to ER several times and my renal function started to decline, forcing me to have a complete kidney work up, including an ultrasound. I've been on Eliquis just over a week now and all those side effects are now gone. I'm having slight abdominal issues, but other than that, I feel like my normal self again.

I was thinking for 4 months that the symptoms I had were just a normal part of recovery, but they were side effects of Xarelto. My doctor kept telling me that people "tolerate Xarelto well" and it made me feel like I was an outlier and I should just deal with it. The lack of support is upsetting. I actually wound up calling the maker of Xarelto, Janssen Pharmaceuticals, for help (they were wonderful btw) and they said everything I was experiencing showed up as side effects in their trials of Xarelto, For some people, it's great and works without any side effects at all, but it doesn't work for everyone (like me!). These pharmaceutical companies are still gathering real life experiences with these drugs, so they spent a lot of time on the phone asking me questions. Glad I was able to at least add to their data on side effects. Nicest thing they did--they reimbursed me for my unused bottles of Xarelto.

Bottom line: if you are not improving and new symptoms are popping up, it could be your anticoagulant and not "recovery." Doctors typically are supportive of whatever med you're taking, so you may have to advocate for yourself. And, if your doctors are not supporting you, I think "doctor shopping" is what we need to do. I'm doing that now. Hope this is helpful.

I have had low potassium as well since my PE. I am now taking potassium pills everyday. When my potassium is low I feel very fatigued, nauseous when I wake up, and just general discomfort. The pills do help.

Xarelto sucks made me feel like shit like I was having another pe , I took eliquis was cool don’t ever ever ever take Pradaxa that’s the worst , I take warfarin don’t mind the blood work ups , plus there’s a reversal agent should have an accident, I’m at 8 months still have back shoulder blade pain I had to come off to have deviated nose surgery just taking fish oil and kiwis