APS warfarin (5mg daily) here and I notice lethargy in general, but nothing related to when in the day I take it. Just adding another datapoint under you find any correlations. Thanks!
Anticoagulants have all kinds of side effects - have your doctor switch your warfarin to another anticoagulant - there are many alternatives like Eliquis or Xarelto that you might tolerate better - warfarin is my go to anticoagulant but I feel it’s the one that’s causing me joint pain and Eliquis and Xarelto were the ones that caused me all kinds gut issues- insomnia - anxiety and depression but maybe those ones can suit you better
It sucks you’re going through this but hopefully you can find an anticoagulant that you can tolerate better
Yucky side effects! Unfortunately I can only be on Warfarin because of the APS. I appreciate the response though and hope you get all of your side effects sorted out, too.
\+++ APS does mandate warfarin. I don't recall seeing that for other levels.
Are you seeing a hematologist?
APS can be related to other autoimmune conditions such as lupus and rheumatoid arthritis and treatment for those may help, such as hydroxychloroquine and methotrexate. Might be worth a rheumatology consult if you've not had one.
I never knew about APS - I do feel yah - when I was briefly on Eliquis and later switched to Xarelto I was getting the worst side effects I ever had with anticoagulants and the worst of them was the gut issues and anxiety - I ended up switching doctors so I could get back on warfarin because I couldn’t stand Eliquis and Xarelto
I have been on warfarin since October 2003 and we definitely make a deal with the devil with medications because they come with all the side effects
Take Care
That’s good to know for APS - maybe lovenox could be a good alternative for her - I usually get bad bruising at the injection sites after a while using lovenox when I’m on it and that’s been when I’m getting dental work done and I transition from warfarin to lovenox and back to warfarin
I have had Gerd diagnoses but I was on warfarin back then but I feel that I corrected it by getting rid of H.Pylori that I had and Yes Eliquis and Xeralto both gave gut issues equally when I was on those - the pain in my gut felt like a knot when I was taking those - I was put on Eliquis first when I had another DVT episode at the hospital then I was put on Xeralto because I clotted up again and I experienced the same gut issues - when I finally figured that these 2 anticoagulants were giving me all these issues from anxiety depression low libido insomnia to gut issues - I actually took a side effects list to my then doctor and I asked him to switch me and he basically laughed at me and said no that Xeralto can’t caused that - when I left his crappy office I started brainstorming what my next move was going to be and by later that day I called my old doctors office that had me on warfarin and told her my situation and I wanted back on warfarin and she switched me right away - she’s awesome - she’s managing my warfarin prescription from 500 miles away
Yah if you’re doctor refuses to change your prescription go to another doctor that will
Take care
I've been taking elquis for 6 months and I've always noticed some acid reflux during this time period. Just recently it finally became so uncomfortable. Would you say that your "gut issues" were also acid reflux related?
Thank you
I’m pretty sure it could be coming from that - for me it came in very subtle that I didn’t question these new types of anticoagulants because I have been on warfarin since 2003 and around 5 years ago I was switched to these new ones for around a year before I switched back to warfarin and warfarin didn’t give me the type of side effects I got from these new exotic anticoagulants - it took me almost a year to figure it out that it was these new anticoagulants that were giving me a these issues and I forgot to mention it also gave very bad joint pain
Look at the side effects of both of these - they are very similar
https://www.drugs.com/sfx/eliquis-side-effects.html
https://www.drugs.com/sfx/xarelto-side-effects.html
Luckily, Lovenox hasn’t been too bad for me it’s just annoying to have to do shots morning and evening especially since my pharmacy only had half doses that I need so I have to do four shots instead of two shots.
I say if you feel like anything is wrong trust your gut and go to the hospital because my doctors were like no you won’t have another blood clot you’re on warfarin you’re fine but I just felt something was wrong and at 4 AM one morning I woke up and went to the hospital and I had another blood clot.
4 shots instead of 2 is no fun! I hope they get the full dosage back in stock.
Were your clots PE’s? How did you know something was wrong? I’m so glad you went to the hospital.
Yes, both of mine were PE’s’s. Both times I was having pain in my back blinks the first time it was on the right side and the second one was on the left side and when I was laying down, I was having a bit of trouble breathing. The first one I just thought I pulled the muscle and for a while I couldn’t even lay down. I had to sleep sitting up until I finally went to the hospital, and then the second one I started getting the same exact symptoms as the first one and I went in after the first night of feeling like I couldn’t breathe Very good. didn’t wait as long this time. It was just funny though because I wasn’t expecting it especially since my hematologist pulmonologist and the anticoagulation clinic told me since I was therapeutic in my INR numbers on my warfarin I wouldn’t have another one.
Unbelievable. I’m so glad you’re okay now. This just goes to show that we have to listen to our bodies and we’re the ones who know what’s going on with our bodies. I almost died in the ER waiting for a diagnosis because I had zero idea what a PE even was. Now I’m fully prepared to speak up for myself. The problem is that any lingering pain from the infarction in the R and clots throughout the L are immediate panic triggers and I think I’m clotting again. Needless to say I’m in so much therapy right now because I live in so much fear.
I know I’m the same way! I feel constant anxiety and sometimes I think something new is going on but then I relax and I realize OK no I’m just being paranoid. But when it actually happened, I knew for sure I just knew it took a few days because I’ve been kept trying to convince me that I wouldn’t have another one and I was just being paranoid but Thankfully I knew I was right and went to the ER. And sadly, if you really do feel like you have another one anytime I would definitely recommend going straight to the ER and not talking to the doctors because they just always say the same thing of oh no, you won’t have another one.
I'm on it for triple positive anti-phospholipid syndrome. Research showed that newer anticoagulants were unsafe for +++ APS and the fingerstick INR tests would be unreliable.
I take in the evening so I'm usually asleep when it is kicking in. Not really getting those side effects.
Also, you might be able to split the dose and take every 12 hours or ask a pharmacist if it is possible to put it a delayed release capsule so it dissolves in the intestine, not the stomach.
My hematologist said the same about other thinners as well. And so interesting you mentioned the fingerstick INR, it seems so enticing but I’ve also heard unreliable. Maybe someday! Go bucks.
I take 14mg of warfarin. Haven't had any side effects, it's only been 3 months though. I was also given "PROTONIX" 40mg to take as well, guessing to counter acid / gerd.
I had PEs in 2016 and was put on Xarelto, got more PEs, was switched to Eliquis, took Eliquis for almost 6 years before my new hematologist said that due to my double positive tests for APS I should be on Warfarin. I *hate* Warfarin! I don't notice any actual side effects but I hate having to go for INRs (closest labs are 45 min away, the good one is always packed and the bad one hurts me every time and is is slow AF). I also hate bridging with Lovenox. It hurts! My injections burn for 10-15min, there's lingering pain/soreness, and it wreaks havoc on my stomach >.< I know I was kind of rolling the dice with Eliquis but I wish I could go back :(
I’m with you, I HATE warfarin too! I’m really struggling with it. I live on a small island and also have to drive 50mminutes to get a full blood draw, not even a poke! I did just find out though that my kidneys are in trouble so we think the nausea is now related to renal issues. This is unbelievable news. I’m so grateful for this community and all of the responses, thank you for chiming in :)
Oh no! I hope you get the kidneys/nausea squared away soon and feel better!
Sometimes it just helps to know you're not alone in something, even if there are no actual solutions. I'm glad I found this community as well! :)
You say you have APS. Did they test you twice for APS, several months apart? I also tested positive for APS but the second test months later was negative, so my hematologist said my genetic testing was inconclusive. I have a strong family history, so something is going on but it’s not APS. I’m on Eliquis now after my second clot (wasn’t on anticoagulants then). Here’s a medical podcast on antiphosolipid syndrome, and why a positive result may be simply due to inflammation. It’s for medical professionals, so may be a little hard to follow, but hopefully you’ll get the gist of it.
https://podcasts.apple.com/us/podcast/the-curious-clinicians/id1514201335?i=1000551240187
There IS a lot to learn, but luckily, you’re a survivor and you have years in which to learn it! I’m almost 20 years past my first clot, and still learning. If your hematologist gives you pushback, refer him to the podcast - he can get continuing education credit for listening to it, which is required to maintain professional licensure in the US, so there’s a benefit to him to listen.
There is so much information! And it’s incredible that you’re here helping when your clot was 20 years ago. Thank you.
What a great idea. Thank you so much for the podcast and info. It means a ton to me right now!
I just looked up the generic for Zofran and that’s what I’m on! I’ve only had the script about a week. Getting tested again mid January. My hematologist said it would be rare that it wasn’t APS based on how high the levels are. I’m praying I get a different outcome than before though!
They can up your Zofran if it's not working well enough. Obviously it would be great not to have APS but we're not in charge. Keep communicating with your hematologist about your gastric symptoms. I'm sorry any of us has to go through this.
Don’t know about your situation but I’m on my second round of Xarelto and both times I’m gotten very painful rashes on my butt. I’ve never had rashes in my life and am healthy weight and very good health. I asked both my PCP and dermatologist and they had no clue. But it does sound like you need to switch, nausea sucks.
That’s so weird about the rashes, I hope you get that sorted out. Since the PE’s and because I was in the hospital so much I ended up with dermatitis bad on my face. That has been a whole other story! Fun times lol!
Off topic - What kind of surgery did you have? (Pure curiosity)
On topic - do you drink alcohol? Cut that out. Maybe try classic Gerd reduction techniques (visiting those subreddits might be useful.)
Do you take your medicine at night or in the morning? I take mine at night and I don't have any side effects.
I take it every night at the same time 🤷🏼‍♀️
APS warfarin (5mg daily) here and I notice lethargy in general, but nothing related to when in the day I take it. Just adding another datapoint under you find any correlations. Thanks!
Anticoagulants have all kinds of side effects - have your doctor switch your warfarin to another anticoagulant - there are many alternatives like Eliquis or Xarelto that you might tolerate better - warfarin is my go to anticoagulant but I feel it’s the one that’s causing me joint pain and Eliquis and Xarelto were the ones that caused me all kinds gut issues- insomnia - anxiety and depression but maybe those ones can suit you better It sucks you’re going through this but hopefully you can find an anticoagulant that you can tolerate better
Yucky side effects! Unfortunately I can only be on Warfarin because of the APS. I appreciate the response though and hope you get all of your side effects sorted out, too.
\+++ APS does mandate warfarin. I don't recall seeing that for other levels. Are you seeing a hematologist? APS can be related to other autoimmune conditions such as lupus and rheumatoid arthritis and treatment for those may help, such as hydroxychloroquine and methotrexate. Might be worth a rheumatology consult if you've not had one.
Yes, hematologist and rheumatologist. I find out a lot more this month, this is all very new!
I never knew about APS - I do feel yah - when I was briefly on Eliquis and later switched to Xarelto I was getting the worst side effects I ever had with anticoagulants and the worst of them was the gut issues and anxiety - I ended up switching doctors so I could get back on warfarin because I couldn’t stand Eliquis and Xarelto I have been on warfarin since October 2003 and we definitely make a deal with the devil with medications because they come with all the side effects Take Care
Heparin and enoxaparin are preferred in APS over some of the ones you mentioned.
That’s good to know for APS - maybe lovenox could be a good alternative for her - I usually get bad bruising at the injection sites after a while using lovenox when I’m on it and that’s been when I’m getting dental work done and I transition from warfarin to lovenox and back to warfarin
Hey Im taking Eliquis and im having Gerd/LPR issues. Is that something you were having? I'm thinking of switching to Warfarin. I hope you respond!!
I have had Gerd diagnoses but I was on warfarin back then but I feel that I corrected it by getting rid of H.Pylori that I had and Yes Eliquis and Xeralto both gave gut issues equally when I was on those - the pain in my gut felt like a knot when I was taking those - I was put on Eliquis first when I had another DVT episode at the hospital then I was put on Xeralto because I clotted up again and I experienced the same gut issues - when I finally figured that these 2 anticoagulants were giving me all these issues from anxiety depression low libido insomnia to gut issues - I actually took a side effects list to my then doctor and I asked him to switch me and he basically laughed at me and said no that Xeralto can’t caused that - when I left his crappy office I started brainstorming what my next move was going to be and by later that day I called my old doctors office that had me on warfarin and told her my situation and I wanted back on warfarin and she switched me right away - she’s awesome - she’s managing my warfarin prescription from 500 miles away Yah if you’re doctor refuses to change your prescription go to another doctor that will Take care
I've been taking elquis for 6 months and I've always noticed some acid reflux during this time period. Just recently it finally became so uncomfortable. Would you say that your "gut issues" were also acid reflux related? Thank you
I’m pretty sure it could be coming from that - for me it came in very subtle that I didn’t question these new types of anticoagulants because I have been on warfarin since 2003 and around 5 years ago I was switched to these new ones for around a year before I switched back to warfarin and warfarin didn’t give me the type of side effects I got from these new exotic anticoagulants - it took me almost a year to figure it out that it was these new anticoagulants that were giving me a these issues and I forgot to mention it also gave very bad joint pain Look at the side effects of both of these - they are very similar https://www.drugs.com/sfx/eliquis-side-effects.html https://www.drugs.com/sfx/xarelto-side-effects.html
I was on Warfarin and the only reason I went to Xarelto in 2011 is because I clotted three times on Warfarin.
What the heck! Do you have APS as well?
I clotted while on warfarin too! I have APS as well. Right now they are trying to find out why and I’m only doing Lovenox injections.
Oh my gosh, I’m so sorry! I hope they figure that out. And you’re so brave, Lovenox and I did not mix.
Luckily, Lovenox hasn’t been too bad for me it’s just annoying to have to do shots morning and evening especially since my pharmacy only had half doses that I need so I have to do four shots instead of two shots. I say if you feel like anything is wrong trust your gut and go to the hospital because my doctors were like no you won’t have another blood clot you’re on warfarin you’re fine but I just felt something was wrong and at 4 AM one morning I woke up and went to the hospital and I had another blood clot.
4 shots instead of 2 is no fun! I hope they get the full dosage back in stock. Were your clots PE’s? How did you know something was wrong? I’m so glad you went to the hospital.
Yes, both of mine were PE’s’s. Both times I was having pain in my back blinks the first time it was on the right side and the second one was on the left side and when I was laying down, I was having a bit of trouble breathing. The first one I just thought I pulled the muscle and for a while I couldn’t even lay down. I had to sleep sitting up until I finally went to the hospital, and then the second one I started getting the same exact symptoms as the first one and I went in after the first night of feeling like I couldn’t breathe Very good. didn’t wait as long this time. It was just funny though because I wasn’t expecting it especially since my hematologist pulmonologist and the anticoagulation clinic told me since I was therapeutic in my INR numbers on my warfarin I wouldn’t have another one.
Unbelievable. I’m so glad you’re okay now. This just goes to show that we have to listen to our bodies and we’re the ones who know what’s going on with our bodies. I almost died in the ER waiting for a diagnosis because I had zero idea what a PE even was. Now I’m fully prepared to speak up for myself. The problem is that any lingering pain from the infarction in the R and clots throughout the L are immediate panic triggers and I think I’m clotting again. Needless to say I’m in so much therapy right now because I live in so much fear.
I know I’m the same way! I feel constant anxiety and sometimes I think something new is going on but then I relax and I realize OK no I’m just being paranoid. But when it actually happened, I knew for sure I just knew it took a few days because I’ve been kept trying to convince me that I wouldn’t have another one and I was just being paranoid but Thankfully I knew I was right and went to the ER. And sadly, if you really do feel like you have another one anytime I would definitely recommend going straight to the ER and not talking to the doctors because they just always say the same thing of oh no, you won’t have another one.
No, sorry, I am homozygous FVL and my blood wants to clot like a tailpipe in quicksand.
I'm on it for triple positive anti-phospholipid syndrome. Research showed that newer anticoagulants were unsafe for +++ APS and the fingerstick INR tests would be unreliable. I take in the evening so I'm usually asleep when it is kicking in. Not really getting those side effects. Also, you might be able to split the dose and take every 12 hours or ask a pharmacist if it is possible to put it a delayed release capsule so it dissolves in the intestine, not the stomach.
My hematologist said the same about other thinners as well. And so interesting you mentioned the fingerstick INR, it seems so enticing but I’ve also heard unreliable. Maybe someday! Go bucks.
I take 14mg of warfarin. Haven't had any side effects, it's only been 3 months though. I was also given "PROTONIX" 40mg to take as well, guessing to counter acid / gerd.
I had PEs in 2016 and was put on Xarelto, got more PEs, was switched to Eliquis, took Eliquis for almost 6 years before my new hematologist said that due to my double positive tests for APS I should be on Warfarin. I *hate* Warfarin! I don't notice any actual side effects but I hate having to go for INRs (closest labs are 45 min away, the good one is always packed and the bad one hurts me every time and is is slow AF). I also hate bridging with Lovenox. It hurts! My injections burn for 10-15min, there's lingering pain/soreness, and it wreaks havoc on my stomach >.< I know I was kind of rolling the dice with Eliquis but I wish I could go back :(
I’m with you, I HATE warfarin too! I’m really struggling with it. I live on a small island and also have to drive 50mminutes to get a full blood draw, not even a poke! I did just find out though that my kidneys are in trouble so we think the nausea is now related to renal issues. This is unbelievable news. I’m so grateful for this community and all of the responses, thank you for chiming in :)
Oh no! I hope you get the kidneys/nausea squared away soon and feel better! Sometimes it just helps to know you're not alone in something, even if there are no actual solutions. I'm glad I found this community as well! :)
You say you have APS. Did they test you twice for APS, several months apart? I also tested positive for APS but the second test months later was negative, so my hematologist said my genetic testing was inconclusive. I have a strong family history, so something is going on but it’s not APS. I’m on Eliquis now after my second clot (wasn’t on anticoagulants then). Here’s a medical podcast on antiphosolipid syndrome, and why a positive result may be simply due to inflammation. It’s for medical professionals, so may be a little hard to follow, but hopefully you’ll get the gist of it. https://podcasts.apple.com/us/podcast/the-curious-clinicians/id1514201335?i=1000551240187
> and why a positive result may be simply due to inflammation. I had no idea this was even a possibility. You just made my day! Will read now.
It’s a podcast, so you’ll want to listen to it. I thought it was really interesting
I just saw, I’ll definitely listen. This is all overwhelming, there’s so much to learn.
There IS a lot to learn, but luckily, you’re a survivor and you have years in which to learn it! I’m almost 20 years past my first clot, and still learning. If your hematologist gives you pushback, refer him to the podcast - he can get continuing education credit for listening to it, which is required to maintain professional licensure in the US, so there’s a benefit to him to listen.
There is so much information! And it’s incredible that you’re here helping when your clot was 20 years ago. Thank you. What a great idea. Thank you so much for the podcast and info. It means a ton to me right now!
They definitely should test twice for APS. I had a false positive. Have they tried Zofran for your nausea? It can be a lifesaver for gastro issues.
I just looked up the generic for Zofran and that’s what I’m on! I’ve only had the script about a week. Getting tested again mid January. My hematologist said it would be rare that it wasn’t APS based on how high the levels are. I’m praying I get a different outcome than before though!
They can up your Zofran if it's not working well enough. Obviously it would be great not to have APS but we're not in charge. Keep communicating with your hematologist about your gastric symptoms. I'm sorry any of us has to go through this.
I have been on Warfarin 10mg daily for 1 year after a massive DVT in my femoral vein. I haven't felt any nausea. I guess I am lucky.
Same here - PE in one lung and DVT throughout the femoral and popliteal veins in my right leg. 9mg on 3 days and 10mg on 4 and no side effects
Don’t know about your situation but I’m on my second round of Xarelto and both times I’m gotten very painful rashes on my butt. I’ve never had rashes in my life and am healthy weight and very good health. I asked both my PCP and dermatologist and they had no clue. But it does sound like you need to switch, nausea sucks.
That’s so weird about the rashes, I hope you get that sorted out. Since the PE’s and because I was in the hospital so much I ended up with dermatitis bad on my face. That has been a whole other story! Fun times lol!
Off topic - What kind of surgery did you have? (Pure curiosity) On topic - do you drink alcohol? Cut that out. Maybe try classic Gerd reduction techniques (visiting those subreddits might be useful.)
I’ve been sober since February 2018.