So today I had my meeting with my new Hematologist, and I have to say he was absolutely fantastic. I was well prepared thanks to all your guidance, and had expected a battle on my desire to remain on LWMH.
Long story short, as described in my original thread, my Rheumatologist pulled me off Heparin and insisted I should go onto Rivaroxaban after my pulmonary embolisms in December 18. My GP was written too requesting my Dalteparin was removed from my repeat, and Rivaroxaban replaced it, I was in effect stuffed, and had to try it.
I only took 2 Rivaroxaban and all my concerns with it came to fruition, I had a nasty reaction to it, my lips and eyelids swelled up, and it absolutely mullered my GI tract and bowel. My GP stopped it at once, and put me back on Dalteparin. I cannot tell you how upset I was, already nursing a poorly tummy due to peptic ulcers, this then turned into gastritis. I have also as of Monday been diagnosed with Gastroparesis, which has been deemed Lupus driven. This has caused me lots of pain and distress and it was all so unnecessary.
Hematologist was at a loss why the insistence on Rivaroxaban, particularly as it is not proven as efficient for APS, let alone someone who is triple positive as I am, and he made the point it had been pulled from trials, I did not need to mention this.
So he said I had choices, Warfarin, but given my stomach problems, probably not a good idea, Fondaparinux (Arixtra) injection, or as he preferred, remain on Heparin for another 3 months, then see about transitioning to Arixtra injections, he is suggesting the latter as there is even lesser a risk with bone density issues, than with the very low risk of LWMH.
He has completely overhauled my care management, has arranged for Lung Function Tests and Cardiac workup and scan, is seeking a meeting with my Rhuemy so they can ensure they are both on the same page regards my treatment, and has taken me into his clinic and will see me every 3 months until he is satisfied I am stable, and has given me advice on how to take my Heparin with the pending endoscopy I am awaiting.
So in summary I got what I wanted, I will remain on LWMH for now, and if I do well on it, provided I have a DEXA scan every 2 years, he will arrange this, he said there is no reason why I cannot stay on it for life, but we will review in 3 months.
Thank you everyone who commented on my original thread, you gave me the confidence to be prepared and if necessary to make a stand on being prescribed something that I did not want, that is not recommended, and what I just knew would cause me problems. You cannot know how much I appreciate the input.
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LupusKaren
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Thank you for the detailed and very informative write up, thank goodness you stood your ground and also that there is some joined up thinking going on with the various consultants. Quite a few on here end up on Warfarin with Fragmin shots or similar for when their INR is being unstable. Thank you for the great feedback, all us ADMINS do try and help and so do a lot of the members on here. This is a very informative piece of feedback. I hope you continue to get better as soon as possible with things more in balance for you. It does sound like there is far more detailed attention to your case than before, this will also help your GP, to have this guidance. Best wishes. MaryF
Thank you so much for such lovely positive report and fantastic you have found a specialist thats knows APS and is prepared to listen to you.
Its given me a feel good feeling for the weekend and everyone who reads your post will feel the same. (Just relised its only Thursday oh well - a long good weekend!
It will also help those just starting a battle....
Hope you stabilise real quick and get some quality health back.
Thank you Karen. I myself fare far better on very high intensity anticoagulation.
I recently went through the wars with a NOAC trial as well- about the same time as you, actually.
My poor doctors were in a quandary in my case, as I kept clotting with DVT’s ( no PE’s thank goodness) at a rate of about one new DVT every 10 weeks despite an INR of 4.5. It was “reasonably” maintained in range.
Two doctors agreed to a trial of high dose Apixiban. Up to 10mg twice a day. ( depending on APS symptoms... a bit of a unique way to prescribe but it does make absolute sense if I were to explain- it’s not for every APS patient.)
I did increase the dose to 12.5 and 15 on a emergency occasions - the entire trial only lasted about 10 days until I failed it utterly. ( my final dose of Apixiban was 20mg ... self administered at hospital a and e after it was confirmed the massive migraine was not due to a brain bleed. It was clear my blood was not. Properly thinned. This was to get me to the next 12 hours until I could get home to my clexane and begin the next trial- clexane. The A and E doctor wasn’t knowledgeable about APS. He wanted to admit me with a bridging dose only...
The original prescribing doctor stayed in close contact with me via a patient texting portal. I was scanned in another state entirely for a brain bleed- no bleeds. Only DVT’s. I switched to plan B. That was clexane. High intensity which was prescribed prior to Apixiban trial but put on hold as a back up plan. ( Apixiban has a little bit of a longer half life so the doctor who preferred Apixiban wanted to try it first, but at much higher dose than conventional prescribing physicians were currently doing.)
So onto the clexane... it was better than the Apixiban, quite a bit better! But not as good as the warfarin.
( but that is just my particular body. It’s just extremely contanankerous! It’s only goal in like is to baffle my doctors and give them grey hair and peptic ulcers prematurely!)
Gastroparesis has been a huge component of my clotting. It was an early symptom, resulted in many surgeries, and returned on the NOAC. The LMWH did eleviate that for me.
I’m very glad this forum could help you. It really is a passion for us to give of ourselves to help others get the help they need. To hear you say your kind words is wonderful affirmation that we indeed , all of together on this forum, each and every member, helps one another pay it all forward.
It’s marvelous that physicians can be open to continued learning / reminded/ “top of mind awareness” in this journey that all of us- patient and physicians alike- embark upon together.
Kelly thank you for your lovely reply. I am of course sorry that you too, have been through the mill on NOAC, you have been through an awful lot by the sounds of it, and I can empathise totally on all the emotion that must have gone with it.
I so wish that more doctors understood our condition, but for me, if I dwell too long on what has gone on, it just makes me so cross. But with all your help, I found that my specialist is one recommended, and I was fortunate to be able to see him on our NHS, I had to wait, but as I felt safe on my LWMH, and symptoms reduced, I decided better to see somone knowledgeable than not.
Whilst I have known about my APS for several years, I did not know until today, that I was triple positive, someone dropped the ball and did not tell me this, again I think this is down to inexperience of the condition, hence why I am relieved being under a consultant who knows his stuff. Lesson learned from me, make sure I always get my lab reports copied to me.
My aim is to try to recover as much as I can, must admit my tummy is troublesome atm, but am hoping an endoscopy will give me some peace of mind.
I hope you can get to a stable point very soon Kelly, I wish you all the very best.
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Anaemia or not. Seen a haematologist
today.
Any suggestions for how to prepare for first appointment with haematologist?
Maybe the hematologist thinks I'm crazy? Appointment did not go well.
