Part II to Previos Post On Wide spread clotting/ Immuno Suppression Being Advised And Warfarin Abandoned. (?!?!)

[KellyInTexas]

I have mentioned many times the multiple large DVT’s I have experienced in my Right Brachial. They occupy the entire length of the Brachial - which on a tiny lady is maybe 4-5 inches in length. Totally non compressible. It will clear up/ resolve but it takes 4 weeks. The Brachial is now narrowed and very badly damaged- so easier to re clot.

The result is the superficials have to suffer and do a “ work around” below. They too are suffering. Other times the veins at the underside at the wrists ( where a lady would dab perfume) really swell and engorge terribly.

If I were to put my other arm down beside it, you would see no veins at all. No blue veins- just milky smooth skin. But that’s starting to change now. Starting to clot here also- but sonogram is showing its superficials clotting.

( my husband is out of town so he wanted photos last night to “ see” how I was. Yep. Getting Doppler on leg today- doctor ordering in - I saw him yesterday- my GP. He said- leg Is clotting. INR is so high we can’t give Heparin. I have no idea how to stabilize you. We can only suppress you- I agree to move forward with suppressing with IV cytoxan.)

Not to worry . My husband is flying home today. I’m walking around right now with a clot in my leg and no plan...

[ndstephens49]

Hey Kelly.

Have they considered Rituxan?

Nancy in West Virginia

[KellyInTexas Administrator in reply to ndstephens49]

I don’t know. Seeing a new hematologist Dr Gregory Guzley. My sons Pedi hematologist said no more of my hematologist. I can’t even get call backs or a work in -

I was hoping you’d come on here. Was cytoxan one of yours? Cytoxan addresses vasculitis specifically and hard lupus issues.

[ndstephens49 in reply to ndstephens49]

Also, when I was having low pulse oxygens and vasculitis, my hematologist tried Rituxan on me. I got one treatment a week for 4 weeks. I already knew I tolerated it well because I also took it when I had lymphoma along with adriamycin.

After the Rituxan treatment for vasculitis, hematologist and I noticed not only did vasculitis clear up, but oxygen in blood started running higher—in normal range. He felt like Rituxan was having favorable effect on clotting disorders.

Recently I have seen some doctors are considering Rituxan for APS.

Nancy

[ndstephens49 in reply to ndstephens49]

Also, I have never taken cytoxan. I have taken immuran (azothioprine) and dapsone. Dapsone is an odd drug. Neither dapsone nor immuran helped much but that was before I knew about keeping INR higher(3-4). So, who knows??? Both of those may be worth trying before cytoxan unless you feel your back is against a wall, which it may well be.

Nancy

[KellyInTexas Administrator in reply to ndstephens49]

Yes, for quite a while now. Mayo as well as HSS, dr Erkan.

My treating Neurologist is quite leery of Rituximab as an MS patient was infused and his system “ tanked” with regards to WBC count/ immunity.

My neurologist said, and I quote,

“ Jesus, If he walks outside now he’ll catch fu#*ing TB!”

( not my quote, but it has become our family meme for any kind of auto immune suppression conversations! You are welcome! My gift 🎁 to anyone reading because, come on, it’s pretty funny!)

[ndstephens49]

Kelly, you can always call me.

Cytoxan is a really strong drug. Is it more toxic than Rituxan? Not sure. I’ll try to research it as fast as I can. MOST people tolerate Rituxan well. HOWEVER, there are a very few people who DO NOT tolerate it and it can then be deadly. When it is first administered, you should be in a hospital setting, not doctors office. They premedicate you with prednisone, I think, to avoid a reaction. They administer VERY slowly and do frequent vital sign checks.

I’m gonna research use of rituxan in vasculitis and APS and see what I find. I have a feeling there is a connection between vasculitis and APS. One of my doctors also told me there was also a connection between vasculitis and rosacea, which I also have.

Nancy

[KellyInTexas Administrator in reply to ndstephens49]

I’m just having a minor freak out. I NEVER have them...I usually process-for a few days before posting.

As typical- this is what I’ve done. I think about it for a while but I need DATA.

My poor husband really is very unsettled. He’s been begging me to post to forum these questions. ( he loves you guys! He askes about all of you and keeps up, by the way...)

The sad fact is we are forced (?) if I choose- to go full out experimental - with DOACS known to be less safe.

But with lessantibodies attacking- less clots- maybe safer than this! This is not safe!

Proverbial between the ole rock and a hard place. Literally, and I have the bruises to prove it!!!

Gaaah!!!!

[Tofino5 in reply to KellyInTexas]

"Known to be less safe".

Is this what your doc said?

[KellyInTexas Administrator in reply to Tofino5]

RAPS trial - actually proven. If you need a 3.o or higher INR which I do. Depends on patient clotting history. What category the patients falls into. There is a specific “ sorting” criteria .

[Tofino5 in reply to KellyInTexas]

Sorry I am not up to speed here. The RAPS trial was with Xarelto or was it with Eliquis? Thanks.

[KellyInTexas Administrator in reply to Tofino5]

Rivaroxaban versus Xeralto.

RAPS stands for Rivaroxaban APS.

It’s A pinned post here by admin) and critically important to this entire conversation. It’s why I was extremely confused about Jill Schofield ‘s choice of drug.

But I trust her if she trained under Hughes. At least her “ bones are good” as we say in architecture.

I’m wanting to understand her exact thinking and the variants that are at play in her choices when she “ strays” if her patient indeed meets the need of 3.0 or higher ( indicating a need by RAPS trial results 2016 best APS hematologists bev Hunt and Hanna Cohen ) .

[KellyInTexas Administrator in reply to KellyInTexas]

Additionally since I’m going to be her patient, it would be nice to go ahead and transition to what she does now... less changes for me. ( I know it’s impossible to predict my future needs as my appt is not until late July...I am on the cancellation call list. )

[Tofino5 in reply to KellyInTexas]

Thanks, that's as I thought.

Dr S did not prescribe this drug for me!

Rivaroxaban is the ingredient of Xarelto. The RAPS study was done with this drug, only.

There are so many names to remember. It sounded like the DOAC names were being used interchangeably.

Thanks for clarifying.

[KellyInTexas Administrator in reply to Tofino5]

Yes, Rivaroxaban = Xeralto.

[KellyInTexas Administrator]

Left a university level thesis in you pm box.

[MaryF Administrator in reply to KellyInTexas]

Lynn's idea is a good one, clearly some guidance is needed from the top. MaryF

[KellyInTexas Administrator]

So I had Doppler ultrasound. Confirmed DVT in Brachial arm again. This time started a little higher up under the arm- began in arm put itself- where Brachial actually starts and it ends where Brachial itself ends. ( near crook of arm in anecubical space.) It’s not compressible- but does have a tiny tiny bit of flow in some places- but has “ reverse back flow” in others.”

Unbelievable...

The leg is showing ok but the so ographers think it’s definitely clotted by looking at it. They think it’s too early to be detected. Early clots can be compressible- so keep an eye on it they said. There is obviously something wrong with it.