Sticky Blood-Hughes Syndrome Support

Would plasmapheresis be an option?

KellyInTexas there is an article “ plasmapheresis for the Antiphospholipid patient.” Google this I nformation. Maybe clear out the Antiphospholipids reeking havoc to get things under control and start over? With maybe new less effective Antiphospholipids if this is even possible since yours seem so aggressive.

Anyone, any thoughts trying to help someone here.

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I know it wouldn’t be a cure but would clean out yours, specifically because yours are so aggressive and when/if they return maybe they would return less aggressive, I’m just thinking...Cindy I could be totally off base here

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Hi, really thoughtful of you - Ive posted the paper for all to see, Im afraid the science of this goes above my head, but nice to see a fresh individual patient approach.

ncbi.nlm.nih.gov/pmc/articl...

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Thank you for posting the link Holly,have a great day, Cindy

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I hope she reads it, may be an option for what she is going through

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Just read it- sent it to my email. Thanks ladies.

I don’t know if I’m “ that sick.”

My vitals are stable... I’m just clotting wde spread to all 4 limbs with confirmed DVT in one arm. Definitely superficial clotting to both legs. Now I think some clotting in good arm- but just is happening- so have not been scanned. Hard to tell if it’s superficial or deep.

I think liver is getting tiny little micro clots likely not detectable by any scans. ( I lost my gall bladder to this APS years ago so my liver has to take over storing bile- and it’s quire obvious when it suddenly gets stressed and can’t hold bile... it dumps it like a liquid fluorescent yellow highlighter. Very caustic and it makes me very sick. So this is happening. So my liver is being stressed now- and it’s tender. So I think little clots are bothering it. I have not had this happen since I had the gall bladder surgury almost 20 years ago and the liver was being “ trained” to store bile...

Other than that organs are ok right now. So I don’t think I would meet the criteria for it but I’m going to ask Monday. Absolutely. They are very adamant here about risk/ benefit . And I think this is a good thing... but knowing that balance is difficult .

Thanks again to both of you! ❤️

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The plasma exchange is performed as an out-patient over the course of a few weeks. Unfortunately, the effects only last a few months.

In terms of this one case study:

"However, this is a case report and definite conclusions can not be drawn concerning the effectiveness of plasmapheresis and rituximab for the long term control of the APS. Moreover, we were not able to monitor B cell count following rituximab administration to assess the effectiveness of the dosing regimen on target cells (B cells)."

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Well, it would be nice if Kelly could get some relief right now, maybe have “onslaught” relax and deal with the aftermath later. I would hope it cannot get much worse for her. She hasn’t caught “any” breaks just one thing after another, Cindy

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I have taken Rituxan many times. I have tolerated it very well. I first took it for nonhodgkins lymphoma in 2001.

From 2007-2012 I took it many more times (can’t remember how many—at least 10) mainly for vasculitis. During this time period my blood oxygen was also very low and I was on supplemental oxygen 24/7.

No one could figure out why I needed oxygen. My bronchoscopy revealed some COPD but not enough to account for the low oxygen saturation in my blood.

In August of 2008 I was able to discontinue the use of oxygen during the day. Again, no one was sure why but most doctors felt the Rituxan benefitted both the vasculitis (my skin cleared up) and my lungs,possibly because clotting may have also been involved.

Nancy in West Virginia

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Wishing you better health and good wishes,

Ros

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Great glad you will ask about it on Mon. Would be good to get ahead of it if possible. It seems it may help you, Cindy

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A doctor, years ago, offered pasmophoresis to treat my APLS. I responded with an observation that the root cause of my disease was a “computer error” in one of the organs that produce the confused antibodies, and that therfore, this procedure would be temporary. And knowing when those “golden days” were passed and when to restart the warfarin BEFORE I got another DVT or mini stroke did not really appeal to me. I told him if he could produce a paper documenting the long term (which I defined as 1 year) benefits to let me know and I’d reconsider. He smiled and nodded and agreed with my concerns and never made that offer again.

But this may indeed be helpful for those in the midst of an uncontrollable flair — said the English major housewife from West Virginia who really does not have any medical credentials.

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I think plasmapheresis is used in acute/critical situations where short term treatments are used to provide some relief to help the body survive a critical situation.

Nancy

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That’s my thought too Nancy

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That’s my understanding- let’s find out.

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Gina, tell me, ( because right now my memory is not super spot on) are you referring to the bone marrow as the “ organ” that produces the APLS antibodies?

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As far as my limited knowledge is concerned, there are a number of steps in the autoimmunity chain. Bone marrow, thymus, lymph nodes, bone marrow— its not a centralized system. But I believe the master copies of autoimmune targets are stored in the thymus.

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Interesting! I did not know that.

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Hi Kelly,

Glad to hear from you!

I am thinking of you every day now and wonder how you are getting along.

Kerstin

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I am feeling pretty bad! Yesterday was horrible migraine. My knee ( left leg is what I posted photo of) is bruising in front now. Right leg is now bruising on outer calf. The veins will feel like a tight band has been placed on them- cutting off circulation- then veins will sting and throb- then the next day the bruises will appear. Often it will feel like an “ invisible nurse “ has suddenly started an IV in a vein in the affected area. Good arm I think is now clotting for sure. Could be superficial. My doctors don’t get excited now. They just “know I clot...”

I have two internists. ( GP with advanced training in internal organs and vascular system.) one in my small local town and one in San Antonio, an hour south east of where I live. They are both very worried. I saw them both. The local one ordered scan- he wanted me on a plane back to London Bridge this week. He thinks shutting down immune system is only option but wants London Bridge to agree. I told him in the past Prof Hughes has been reluctant as its not been proven and I’m not up to travel. I also told him neurology in London was advancing and some neuro patients were being carefully screened for modulation. Not as extreme as cytoxan- but I’m repeat clotting every 8-10 weeks , strong neuro component- ( seizures in the lobes he’s working with- multi organ involvement- etc...

The other internist- dr Seleh Jaffar, was a teaching doctor at the university hospital in San Antonio. He has a urgent work in for me Monday morning with new hematologist in San Antonio. He said he’s not as stron in hematology as the one I have you with- but something’s not working so I understand. We are setting it up as a consult only.

Dr Jaffar said has also never had an APS patient. He said he is at a complete loss and does not understand what is happening to me.

I feel very sick. Better in mornings. Worse by evenings. I am staying in bed. I have not left home since 4 days? My stomach is not working well- I’m running fevers. ( not high.) When I go to sleep at night I wake up- look at clock, think it’s morning, but only one hour has passed... and I think to myself... “ oh my God. I still have this entire night to get through...

Actually last night I managed two and 1/2 hours at a time... with 30 min between.

It’s just not letting me rest.

I have to think it’s a “ flare” of some kind and when I flare, for me, for my body, I clot. It’s just what I think.

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Tomorrow will soon be here. Best of luck with your appointment. Let us know what happens many including me are concerned about you. Good luck😊Cindy

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Starting to feel a little better! Thank goodness- holy cow! Actually got out of bed -went to the grocery store- and caught up on laundry today! That was crazy!

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Excited to see how tomorrow turns out , Good luck, Cindy

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So excited to,hear of your visit....what happened?Cindy

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Waiting for some blood tests and this new heme is calling London Bridge immediately . ( I don’t think that’s going to be helpful with regards to questions about immune suppression.) He’s also calling my APS specialty heme. He’s arming himself with more info .

He’s wasting no time getting a more comprehensive picture.

I’m waiting to post until I have more answers so I don’t start lots of loose end questions without answers . It’s all still way up in the air and very radical right now. It gets confusing for everyone, pointlessly. and tough on my eyes!

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