My mom is suffering from APS and has been on Enoxaparin since(Clexane initially and now LWWX) twice a day. But she is kinda averse to injections and she is irritated because of those. Does anyone know if there are any oral alternatives to Clexane so that I can discuss those with her doctor? We have tried Rivaroxiban (Xarelto) but that has not worked for her so the doctor switched back to Clexane.
Also my other question is about the duration. How long has anyone been on Clexane? My mother is on them since three months now. Is there any maximum duration for the injections after which we have to stop it?
Thanks in advance.
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Hi there, I always had Fragmin injections when pregnant, and it suited me, and I hope if it is ever needed in the future, I can try it again. Often Warfarin is the go to drug for many, but you have to maintain a steady diet in order to maintain a steady INR. Whichever drug is being prescribed, if it is for preventing Thrombosis, then she will have to stay on something, and that will need to be monitored by her main consultant and her GP, here is plenty of advice here on our charity website about the actual disease: ghic.world/
Are you from the United States? I see that you have been active on another site under the HU platform for brain trauma on behalf of your mother.
Was your mother’s APS discovered as a result of the subdural hematoma event?
Was she already diagnosed with APS prior?
Usually Lovenox is used in the USA, ( Clexane is the same brand in the UK.)
If your mothers bleed was a result of warfarin, it may have been as a result of a highly labile ( unstable) INR. This is often seen when a patient is positive for the particular “lupus Anticoagulant” antibody .
Lovenox has the advantage of a “fixed” level of anticoagulation.
Hopefully the medical team where you are can help you with a plan to make this easier.
Apixiban would be ,”somewhat” of an equivalent if and only if there is absolutely no other choice. ( RAPS trial versus TRAPS trial) It is twice daily. My APS Specialist(s) feel it is superior to rivaroxaban in APS patients.
This all sounds very traumatic and scary. It’s going to take highly a specialized medical team. A clotting disorder with a bleed requires a specialized thrombosis / hemostasis unit in tandem with a highly specialized neuro surgical unit.
Normally patients would not be discharged home as you stated in your post on the other HU post. They are sent to rehabilitation facilities where they live as patients, learning to regain functioning living skills again.
Wishing your family the warmest of thoughts and comfort during this difficult time, and may you look forward to her steady recovery.
My neurologist is wanting me to give apixaban a try... i told him i am not comfortable with this because there arent any studies to verify its effectiveness. His reply was “ there arent any specific for lovenox either, its what certain docs are comfortable with and they have had good experience with it”. He also tells me he is comfortable with apixa ban because “he has patients with APS that are successful on it”.
I told him at this time “ I” would not be comfortable.
I have a follow up in a couple of weeks. This is just another opinion and i thought i should share it. I will also say i hate the injections...but i like having my life more, and its easier for me to use the lovenox then to maintain an INR. Kelly how are you doing on your ritux? All the best, Cindy
Yes, I believe you are triple positive. You know my story of Apixiban, and I think the thoughts behind using it are valid. ( only if at high intensity as my APS specialty said.)
A statin should be added, and one advantage of Apixiban is it is a little bit safer to add an anti platelet ( clopidogrel has been shown superior in studies over aspirin according to my APS Specialist) as well. It’s possible to half or even quarter a clopidogrel tablet.
A neurologist should work closely in tandem to bless the clopidogrel in neurologically affected APS patients. I was encouraged to add clopidogrel. It does take 5 days to reach level.
All this is simply what I personally was advised by my APS Specialist. This was because I had failed all other options.
Treatment failure means : clotting through with verifiable ( scans) DVT, Strole, etc. in my case, DVT’s.
So Cindy, unless you are demonstrating a true treatment failure of Lovenox injections twice daily, which you carefully deliberated over and really proactively asked your doctor back in New Jersey to prescribe for you, I can’t imagine switching since I assume the Lovenox is working well for you.
As I told you a few months ago, and think from reading your comments above you agree with me, if everything is working fine for you, don’t make any changes despite how tempting the ease of twice daily tablets may seem to you now.
I could have very easily lost my life.
Thank you for asking how Rituximab is going.
The infusions themselves are fine. No serious reactions.
The first infusion was great- my INR remained stable. I actually felt towards the end of the second week I might have seen improvements.
Then I had second infusion... it destabilized my INR. Down to 2.1. I had to bridge twice daily for days. It was almost two weeks ago now and I’m still climbing out of the hole. I was prescribed a steroid reducing
Course.
So it’s not going very well for me right now at all. It’s very intensive.
No, i am not switching anything. I am happy where i am. Yes, i am triple positive and we are now understanding my stroke was in both sides of my brain- complicated story but i am not going to risk that again🤯 also sorry to hear about the ritux and the hole you are currently climbing out of😬
Hello everyone, thank you for your prompt replies.
Yes, my mother's APS was diagnosed because of her subdural haemotoma. She cannot be on warfarin/ coumadin because her INR becomes unstable and also results to internal bleeding.
So I guess we will have to adapt to injections then. Maybe a little inconvenience for the longevity of her life.
@kelly in Texas- She is now improving neurologically, she can now follow commands almost perfectly, has started oral diet, doctor says this is a tremendous improvement from what she was before and if she keeps on doing that she might be okay in one or two months.
Thank you for all your wishes. She needs them a lot.
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