Any thoughts on having a bleeding peptic ulcer and APS and Lupus Anticoagulant

[Nutwood1]

I have just had a bleeding peptic ulcer cauterised and clipped. The doctor says it’s stonking! He has taken me off warfarin because of the danger of bleeding out. I have not been offered any other anticoagulant options so scary time as he does not want me on warfarin for a week. Any thoughts on his thoughts or any previous experience of this situation.

[MaryF Administrator]

If this is your Hughes Syndrome/APS specialist please stay in contact with them, for advice, is your GP also involved, you must get help if you feel unwell. MaryF

[Nutwood1 in reply to MaryF]

I am in hospital and don’t have an allocated specialist although there is one in the hospital.

[MaryF Administrator in reply to Nutwood1]

Maybe ask if you could see them, it is really important. Best wishes to you. MaryF

[KellyInTexas Administrator]

Oh how concerning. You really do need to do something.

I would suggest that you speak to a NICE representative , or a heads nurse .

Tell them that APS is tricky- and there are hematologist guidelines at major hospitals like Guys and st Thomas and UCLH.

If they ring though and ask for the surgical guidelines, there is a flowchart for risk stratification. ( on how to hold and restart anticoagulants pre and post surgery.)

APS is given an alternative phone number.... it’s handled completely differently most often.

Is your doctor aware of this? I would at least find out.

[KateEsq]

I hope everything goes well for you! Make sure you stay in touch with your care providers and bring up any concerns with them and ask them all the questions. Here's my experience with internal bleeding while on anticoagulants.

I live in the US in an area that apparently has no APS experts. I have APS. I'm positive with only one of the APS antibodies, but when I had my initial DVT and PE, it was massive and unprovoked. I'm on warfarin only. About two years ago, I had a spontaneous spleen bleed, meaning no trauma and no obvious reason why I had two moderate lacerations on my spleen. I went to the hospital after a day of abdominal pain and apparently had blood all over my abdomen and a hematoma by my spleen. The doctors had no idea what to do with me. They said there were no guidelines for my situation, so they went with a wait and see approach. They took me off anticoagulants and monitored me for four days in the hospital.

While in the hospital they had pressure pump sleeves on my lower legs to help prevent clotting while I was in bed (I was not moving much because I was in so much pain and exhausted from blood loss). My bloodwork normalized and they released me from the hospital, but not before having to do a CT scan because they were concerned I might have a lung clot due to elevated blood pressure.

The doctors planned to start me back on warfarin four days after I was released from the hospital. They decided against bridging therapy due to the concern of internal bleeding and a desire to avoid surgery and possible spleen removal.

About the time I was starting back on warfarin, I developed pain in my calf, which turned out to be a surface clot. I don't know if it was the lack of activity or starting back on warfarin with no bridging therapy or both that caused the surface clot. I do wish I'd been able to have the pressure pump sleeves at home while recovering because the clot happened in the leg that and the DVT and moderate post thrombotic syndrome.

A surface clot is not considered dangerous like a DVT, but in my situation, it has greatly diminished my quality of life. The surface clot worsened my post thrombotic syndrome, causing more damage to the vasculature. I am now dealing with a very persistent venous stasis ulcer on my leg, which may eventually require vein ablation to treat. It's been very costly and frustrating to deal with, even though the wound is actually very small. But the area for a potential wound is much larger and I definitely don't want anything worse than what I'm dealing with.

It's a balancing of risks. Make sure you stay on top of your symptoms and stay in communication with your doctors. In my situation, I think the possibility of having my spleen removed would have been worse, not only because of the risks with surgery but also likely having to go on life-long antibiotics after spleen removal, which probably wouldn't mix with warfarin and would have been very high risk in the pandemic. In hindsight, maybe bridging therapy should have been considered. But, I think the best thing would have been to have the pressure pump sleeves for my lower legs while I was at home because I think it was the damage caused by my initial DVT and the lack of activity when I was first home and still recovering that led to the surface clot.

I hope this provided some help!

Best wishes to you! -Kate

[KellyInTexas Administrator in reply to KateEsq]

Hi Kate. Sorry that happened... a superficial clot can be very painful.

It can also be a a sign of inflammation in the veins - almost a vasculitis that is from the APS antibodies doing damage to the vessel membranes, not ANCA PANCA antibodies.

The vessels swell, making a narrowing in the vessel, and if the blood is a little sticky- then a clot easily forms behind the narrowing or closed off vessel.

I have this trouble also.

It is difficult to find a decent hematologist who knows about APS in Boise... I’ve tried. Hopefully you are somewhere else and have found someone.

[KateEsq in reply to KellyInTexas]

Hi Kelly! Thank you for the information! I'll have to research that about the inflammation in the veins. Now that makes me even more concerned and paranoid about the compression wrap I've had on my leg to treat the venous stasis ulcer I had, especially from the weeks my INR was hanging out at 2.0.

There was already a lot of damage to the vasculature of that leg with the DVT, so it wasn't a surprise that I got the surface clot. The surface clot was indeed painful and caused my whole leg to swell up again. They did multiple doppler scans to ensure it was not another DVT, and those scans were some of the most painful. That surface clot and all the complications it created turned a week or two of recovery into months.

I'm still in Boise. I see Dr. Stephanie Hodson for hematology. She knows APS and is a hematologist, but her specialty is really oncology. She at least knew to have me on a higher INR (2.5 to 3 initially, and later 2.5 to 3.5 after my APS was confirmed). I had just seen a new hematologist the year I had the spleen bleed as Dr. Hodson took a position at a clinic my insurance didn't cover. My antibody levels had gone much lower and the new doc said if that continued I could go off warfarin. My primary care doctor and I were dubious of that assessment. After my spleen bleed, hematology at my hospital put me on an INR of 2-3. My primary care doctor wanted me to go back to Dr. Hodson as he was more confident in her understanding of APS. Dr. Hodson was okay with the new levels, but I could tell she didn't like it.

I believe that's where my care sometimes suffers. Because APS is not something my doctors handle regularly, they don't always feel comfortable pushing what they're used to doing for others on blood thinners. I know they're worried I could have internal bleeding again but I feel I should have remained at 2.5 to 3.5.

My primary care doctor is where I've really lucked out. He was not familiar with APS, but since I became his patient, he listens when I ask questions and he does additional research. I know he's attended extra seminars at med conferences to stay up on APS and anticoagulants. When I'd brought up the fact that some individuals with APS have inaccurate finger stick readings, he had it checked and switched me over to vein draws when we found them inaccurate. He's even had the clinic buy special equipment to make vein draws easier as my wrist veins were becoming too scarred. (Well, I wasn't the only reason, but I'm pretty sure me and the shiny new toy factor were the biggest reasons.) He also trains residents, so he's at least educating new doctors and med students on the basics of APS.

So, my doctors may not be the most knowledgeable, but they do listen, especially when I come with research, which I've usually picked up from this forum.

Thanks again and sorry for the long reply! I guess I was just excited to talk about my APS situation. 😅