My primary doc ordered blood work requiring 17 vials! Among other things, he's looking for a genetic marker for my blood clot. He does think the event was caused by a combination of immobilization + dehydration and expects me to be on Xarelto for 4 months, unless of course, a genetic marker is found. Crossing my fingers none is found.
I have a couple questions that I hope someone here can help me with.
1) My doctor said Xarelto prevents new clots from forming, but there could be "old" clots lurking somewhere that could stlll cause trouble. That it takes about 2 weeks for all the old clots--wherever they may be in the body--to clear. My fear is that a pre-Xarelto clot will make its way to my lung or heart. Is this a risk anyone has heard? I'm a little freaked out.
2) When I got my pneumonia shot today & blood drawn my blood clotted quickly. Isn't that a problem? My biggest issues with Xarelto is...how do I know it's working? I've only been on 30mg/day for 4 days, so maybe it's not enough time to thin it?
3) When my son got my Xarelto prescription filled, the pharmacist said they were "out of one of the chemicals" they needed, but then found it. Is it possible my prescription was not filled correctly, which is why I'm still clotting? Is there a way to check the efficacy of this prescription?
I'm still in a paranoid phase, because this is still so new and scary. My doctor was very encouraging and pleased with my vitals, lung/heart function, current blood work, etc. However, there is more testing in the works.
Your doctor is right that there coukd be old clots around, but this is more usually the case where PE's are caused by a DVT (the DVT being the source). It falls into the "possible, but not very likely" category. Most likely, your body has cleaned them out already.
Needle punctures can heal quite fast - I have been on warfarin for 2 years and sometimes they do, sometimes they don't. It's not something to worry about.
I am guessing here, but I think maybe your pharmacist was saying he only had one of the Xarelto doses in stock? Normally, you start with a larger dose tablet(s), then after 30 days, reduce dose with a different tablet. He wouldn't be making them up from scratch - not possible.
Lastly, I wouldn't worry about yhe paranoia ir anxiety - it happens with PEs. I think you doctor is right and you are doing well....amd you are asking the right questions.
Thank you for the reassuring words. Every morning, I wake up thinking...I made it through another night. I feel so overly dramatic, but I realize you & others here know exactly what I mean. This forum is wonderful and I so appreciate the good advice and support.
Don't worry Grace - you are doing well. I spent the first 6 months leaving the front door unlocked so that someone could let my dogs out if I didn't make the morning.
Hiya grace.. sorry you to have had to go through having a PE..
But Peters is right in what he’s saying, I think because it’s such early days for you, it does play on your mind more, mines been 2+ years since having multi PE on one lung, and they still not sure where mine started so I’m on apixaban for life now, so consultant tells me, as they don’t want to take the risk.. my breathing is still bad, so just having more test to see why..
You will be ok, just take each days as it comes, and soon it will be put to the back of your mind..
Good luk, and keep talking on here, as we are always here to listen big hug 🤗x
Peter, I totally get why you felt that way! That's about where I'm at right now. But, day-by-day, I'm feeling more "normalized" and with the exception of my adult kids--everyone else in my world thinks PE is no big deal. We look & act pretty normal on the outside, but they have no clue how close we came to the brink and the physical and emotional challenges we're handling with PE.
What has helped to describe PE is to say it's a "heart attack in the lung" and then there is an aha moment. Not many friends know I have PE and I'm choosing to keep it that way for now, until I get my bearings. One friend I told is an internist, so she was the most supportive--immediately said, this is scary--and then went on to ease my mind after she kindly looked over my results. But, I had another friend say...oh yeah, my mother had it and the meds helped, not realizing there is a difference between a PE and a DVT. Treated it like I have a cold and it will be over in a few days. I wish.
Thank you, again, for the kind words and perspective.
Thank you--yeah, it stinks we have to be in the PE Club. I am also waiting to hear if I have a genetic link, which will mean I'm on meds for the rest of my life. I think your advice of taking each day as it comes is a good one. I'm just so grateful to have a new day to live and once I know what to expect going forward, this will just be my new normal. One day at a time...
Hiya grace.. how are you feeling today?? Yes I understand what you are saying, some people don’t understand how bad a PE can be to your life, my consult said I was lookey as the clot goes through your heart first then to the lungs 😧, so the pain I experienced a few times in the nite could of been the clot going through my heart ( so I was told ) I live on my own so very frightening to know that, so people don’t understand what PE is very bad ( or can be) like you said they seem to like say oh you be fine get over it 🤨 WHAT
I must say I’m more at ease that I’m on apixaban for life, as think I’d be scared in case it happens again if I came of it... keep talking on here chic, as we have all been through the same so we understand how you feel, please keep intouch and let us know how you are going 🤗x
Wow. Didn't know the clot goes through the heart first to reach the lung We are very lucky, indeed.
Last night, I had severe pain on the right side after having none for a few days. Called my doctor because I didn't know if this was an "old" clot the Xarelto wouldn't "fix." He said to take my pain med, oxycodone, which I did, but had a terrible reaction to it. Thought I was having a heart attack--numbness of left side & both hands, intense chest pain, dizziness. My husband took me to ER to check it out & when I got there my BP was 197/100. Fortunately, tests showed it wasn't my heart, but a likely reaction to this medication. I won't be taking it again! It is too strong for me!!
I can see why being on the meds for life would give a sense of security. So, if that's my route, I'd be fine with it. It's lifesaving. Sounds like you are doing well, so it gives me hope.
Thanks for your words of support. This is a great forum with such nice people.
Hi Grace.. did they do a ultra sound on you, when yo went to ER?? As end of last year I woke at 3 in the morin with chest pain, and every thing you describe, and I ended up calling a ambulance as I’d still got it at 7 in the morin, and I tried every thing to try and make it go away, so my doc had said I should always go to the hospital if ever get the pain, but I always feel stupid, like I’m wasting there time 😔..
I had bloods done and ECG which came back ok, but I had to stay in over the weekend, and they found out that I had gall bladder stones which is on your right side just below your bust, and the symptoms can be like heart attack... so had a opp to get rid of gall bladder... a ultra sound will pick that up if you have one done.. so just thourt I’d say just incase it happens again to u, and you can always mention this to who ever looks after you ...
Good luk I do hope it don’t happen again and was just meds 🤗x
Hi again Grace - forgot to mention the random chest pains. They seem to be pretty common, but should not be too severe. Also worth knowing - it's not the Xarelto (or any of the anticoagulants) that dissovles the clots. It's you body that will do that. It is possible that some clots may not dissolve (they would become scars), but that is not always the case and many have no trace of the clots on recovery.
Sounds like a bit of a nightmare with oxycodone. Unfortunately, asprin and nsaid's are not suitable when on anticoagulants, so you are left with just opioids (like oxycodone) and paracetamol. Bit of a pain that (no pun intended).
Peter, that is helpful...I've noticed my chest feels weird at times...it's the pain on my right flank that's so bothersome. Oxycodone is a nuclear bomb of a pill for me...how do people even get hooked on it? It's awful. Guess Motrin wouldn't help either?
Dawn, they didn't do an ultrasound, mostly because I wanted a quick read on what was going on & I suspected it was the pain pill. They did an EKG twice & matched it to my earlier ones and ran a blood test. But, if I have a recurrence, I will definitely request one. I've had a full heart workup where they shoot dye in your veins, etc. but I agree with you--better to go and be safe than sorry.
I also have chills--have no idea what that's about. Had the flu in Dec. with severe chills, but they have lingered once in awhile, along with a cough. I read a Canadian study just released reports the flu can cause blood clots & heart attacks! Oh, and a slight taste of blood in my mouth, which has me gargling a lot! Guessing that's a Xarelto side effect, but I hope it doesn't worsen.
Well, Motrin is an NSAID, so theoretically should not be used with anticoagulants. Probably best to check with your specialist and follow his guidance.
As far as I can see, despite there being hunderds of painkillers on the market, there are only three types (all the variants being brands and/or combinations):
Opioid family of drugs
NSAIDS (including aspirin)
Paracetamol family of drugs
Anticoagulants takes out one of these, just leaving Paracetamol and opiods
Unless anyone knows better? (I would love to find another I could use).
I wanted to report back with an update...I went to a hematologist after my primary doc diagnosed me with a clotting disorder, antiphospholipid syndrome, after running just one test, which is oftentimes a false positive when on a blood thinner. The hematologist ran more blood tests (I gave 42 vials of blood in a month) a full body CT Scan & scan of my legs. No clots in my legs, no clots in my lungs or scar tissue and everything else scanned was good/normal. My blood tests were negative for antiphospholipid syndrome and for Factor V Leiden. So, even though I had the flu/immobilization just before the PE, the hematologist is categorizing it as "unprovoked" so I will be on 20mg Xarelto indefinitely. I was hoping for 6 months...but, then again, I think I'd always be worried if I came off the blood thinner entirely. Better safe than sorry...and I'm relieved I don't have APS, which comes with a long list of complications. My primary diagnosing me prematurely with APS, telling me I'd develop lupus, etc. increased my anxiety tenfold. Glad I found a specialist to drill down and get a resolution for me quickly.
Does this treatment sound right given this is my first PE?
Hiya grace ... I’m so glad you seem to have got yourself sorted out, or at least peace of mind...
as much as we all don’t like taking meds, for ME I’m glad Iv got to stay in apixaban for life, as I’d be scared to death if I came off blood thinners incase a clot mite come back again, and next time I’m not so lucky to be here.. it just gives you a bit of peace in your mind..
You sound like they did every thing for you, to make sure all was ok, so I’m glad for you there, hope you feel some what better now big hug 🤗x
Thanks, Dawn...what you say is so true & I need to keep reminding myself of my new reality...better safe than sorry to take the med than not. My brain wants to go back to "normal" and my emotions are still catching up with the fact that I had a PE. I am so grateful to have gotten a resolution and to have everything checked out, so I have peace of mind and can move on. I'm tolerating Xarelto well thus far, and the hematologist said if I have trouble with bleeding, he'll just switch me to Eliquis.
Now, I'm trying to "push the envelope" on what I can and cannot do. My DH is taking me out to dinner tonight, and while I'd love to have a glass of wine with my pasta, I'm afraid to do it. I haven't asked my doc about an occasional glass of wine, but I've been reading mixed reviews. Maybe in a few months...He did say I could ski if I manage when I take my pill. Said to skip one before I ski & take it after my last run of the day, but I'm not willing to take the risk so soon. I dod get my medic alert bracelet tho!
So, I still have the fear...but I'm grateful to be here with life left to live. Thank you, again, for all the great support. Meant a lot to me to come here and vent and be understood fully. Hugs right back to you xo
Treatment sounds good, so glad they are being so thorough and at least you know what it isn't now. I am afraid that many PEs are finally characterised as "unprovoked", which is kind of a nonsense statement when you think about it - because something caused it, or it wouldn't have happened.
The good news is that they will probably monitor and, if nothing shows up, take you off the blood thinners in 6 months or so (yay!).
Hope you've got some blood left after all those tests
Hiya grace ... no I’d be worried to stop them for a day ski... knowing my luck that be a day wen I got another PE lol...
I was on hospital last year, and it was a right pain getting in there, they had to send my hospital reports to a consultant to read up on, and check if ok to stop apixaban for a few days while I have the opp.... must admit I was nervous as scared in case I got another PE 🤔...
think if your consultant said to stay on for life he will keep you on them... my consultant as said there was no way that I can stop taking them now, and must say glad..
As for the drink, apixaban is not the only med I’m on, I have to take 32 diffrent tablets aday, and I still have a drink wen I want to... life to short to not enjoy a drink now and again... it’s been ok with me and all my meds...
well good luk and try to enjoy yourself now, not easy, but it will come to you 🤗x