Unstable INR, Rashing Accompanying Migraines, and Hematologist considering Rituxan or Cytoxan- Reasonable?

*I'm now at 15 mg warfarin 3 times a week and 15mg 4 times a week

* target INR is set at 3.5 with Fragmin injections if I fall below 2.5. ( this was set by Londons Lupus center, my Texas hematologist gets REAL uncomfortable and squirms and we negotiated at 3.25 )

*Ive never been able to maintain INR at range despite strict adherence to diet. Etc. warfarin raised/ INR falls. For about two weeks I get a nice homeostasis of 3.0-3.3. We were all very hopeful but sadly I returned to 2.3 and a 48 hour debilitating migraine and systemic rash.

*looks like I'm going to be a "Fragmin lady."

Question: the hematologist who is investigating my son is suggesting suppressing the immune system with either Rituxan or cytoxan? He thinks Rituxan. (He saw my rash yesterday when I brought my son in for testing and was shocked at my rash. I am Primary APS and negative for Lupus and others. )

Is immune system often suppressed with primary APS? Often my other doctors ask why I'm not being suppressed? ( I'm not tolerating plaquinil.)

30 Replies

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  • Hi Kelly

    I'm a Fragmin guy, since 2010, and wouldn't, willingly go back to Warfarin.

    I have never heard immunosuppression used in APS patients.

    Dave

  • Hey Kelly! I'm switching to enoxaparin too!

  • Kelly are you still on Plaquenil? If so could this be responsible for the rash? Before going on an immune-suppresant I would perhaps email LB and get a view. As far as I am aware they are only used as a last resort and Dr's who suggest them as a treatment don't really understand our condition. If you were being treated for Lupus then this might be different. Are they suggesting that it is a Lupus rash?

    Have you tried a Heparin trial? If I were me I would be more likely to want to go that route first to see if it controlled symptoms. If it does not then you may have to think again. As Dave says many of us have to consider Heparin, it just seems to work better for us. Im 6 years now!

  • 1. Thank you!

    2. Who is LB? Email how?

    3. Have not yet tried trial of LMWH. Only injections when INR is <2.5. I believe my hematologist is going to just switch now. He has not suggested a trial run. I'll show him your post.

    Do APS patients do combos of warfarin and other drug therapies ? He hinted he had some idea like this up his sleeve but was not forth coming with it. He also said there was no data on xeralto vs warfarin for APS patients... scary. ( yes. I directed him to RAPS trial)

    I don't know why my blood won't behave. It just is bound and determined to try to clot no matter what. Seems to be our mantra. Pretty sure I'm going try try vodka infusions next!

  • LB - London Bridge. I thought you had their details, if not please let me know and I can supply.

    If you did a LMWH trial you would transfer to a therapeutic treatment dose of whichever LMWH they decide to put you on - Prof Hughes uses Dalteparin and it would probably be 10,000iu or 12,500iu depending on your weight.

    There are warfarin combo treatments that people use, for instance they can use warfarin and aspirin or warfarin and clopidogrel. Bothe of these are are anti platelets which stop the blood from being too sticky.

    You would not be suitable for any of the new DOAC's as your INR is set at too high a rate for the one that has already been trialled. You would need to have a INR of 2-3 that works and relieves symptoms which clearly in your case it does not.

    Many of us, especially those with positive LA antibodies have this issue of fluctuating INR's. Don't hit the bottle quite yet, as tempting as it is!! 😜

  • Of course, LB is London Bridge! Of course I have details. I was trying to figure out WHO as in person, not entity.

    I can really tell my INR is sub therapeutic! The scarecrow from the wizard of six oz is my most relatable "totem animal " at these times. With close family and friends when I have these moments I hum the score to ,"if I only had a brain..." and it seems to save loads of explaining. So, I'll just let you hear me hum it for you now.

    Ok. I weigh 108 and I'm 5'3". ( so happy to have gained about 7 pounds since November... I was SO sick. Way too thin. Yes- they have accounted for this with warfarin.

    Great info- ill print it off. Thanks so much. Now if hematologist will kindly call me back... he said at first appointment he would be happy to email London Bridge and dr Jordan ( LB) requested to be kept advised if progress. I asked Professor Hughes how long in total he was willing to let my docs play the "warfarin game" as I call it, and he said with close monitoring and adjustments , maximum no longer than 6 months.

  • No, my Rheum pulled the plaquinil. I was only on it for two days. That's was quite enough! The rash accompanies the low INR and migraines it seems. All over red sand paper rash ( not at all raised nor does it itch) plus the livedo reticularus returns all over the legs. My INR is only 2.4 tonight. Another shot of Fragmin. Still in migraine. 72 hours of off and on migraine now- it did subside after shot last night - and a much better afternoon. Sadly it returned this evening. My hematologist never returned call- he's not the one who prescribed the Fragmin ( it's Lovenox to us- ) -I've only seen him once- he's brand new to me- another doc prescribed it to me- it was in my letter from London Lupus center and he told me he read it- I assume he knows I inject with it...

    That also should have read I'm on 14 mg ( warfarin) the other 4 days of the week. Oscillopsia is driving me bonkers.

  • You may find this helpful but vestibular issues can be a known problem with Hughes.

    ncbi.nlm.nih.gov/m/pubmed/1...

    As I said above if I were me I'd be thinking of a heparin trial. Prof Hughes tends to use Dalteparin.

  • Yes. I'm seeing a neurologist who specialized in inner ear at endbof May. I'm super dizzy and perhaps clotting in inner ear. My optic nerves are also dying. ( auto immune neuropathy.) bye neuro motor part of brain is not working correctly. No 3-D ability. If it can't be understood here I will try to work an appointment with Daves doc. ( Dave- manifmendip- I did message him for help. I'll remind him to send me info to guide this doc what to check.)

  • Dr Peter Savundra Yes he's very good. Ive had a conversation with him too.

  • I called my hematologist today to report in. I'm in full migraine again this morning. This is 6 days of migraine. The only relief is with Lovenox. and had a lightning bolt of pain shoot through my right hemisphere of brain this morning. It resulted in a very blood shot right eye.? It's starting to clear up. My INR self test was 2.5 yesterday evening and 2.6 this morning. ( target of 3.5). I've quit eating greens. I reported this to nurse. I know it's advisable to stay steady on green vegetables but what to do? My hematologist is not an APS specialist. I advised her of your information on what professor Hughes would usually do in this case if a ,"trial" of heparin first before commuting to the switch permanently. I reminded her that LB was agreeable to an email from my hematologist should he feel more comfortable with a direct quick consult/ affirmation. ( he does have Lupus patients on Lovenox.)

    Instead she called back with instructions to up my warfarin to 16 tonight, 16 mg Monday, Wednesday, Friday's and 15 all other days of week and keep my May 8 appointment.

    I requested an earlier work in... week after next. There is a clear pattern of not staying at therapeutic range despite increasing Coumadin level.

  • *committing to the switch permanently

  • I am on an immunosuppressant as a trial, For my memory problems

  • Thank you, I hope it helps you.

  • Some of us have bad allergies to drugs, I could not tolerate Plaquenil, Some on here on other mixes of medication and often because they have Lupus. Presumably your vitamin D levels are being looked at as antibodies can rise in disease if that is low. I am on LDN which has made me a lot better, but most doctors have not heard of it. Also since treating my Thyroid my allergies have calmed down a bit. Maybe you will do better on Fragmin. MaryF

  • Hi Kelly,

    Are you Lupus Anticoagulant? I am also primary APS but with LA. I never change my Warfarin-drug but I eat a lot of green vegetables and try to eat the same and to alter if the INR is high or low. But I have the possibility to test as often as I find suitable to keep my INR intact.

    As you can not do that (selftest often) I should try Lovenox if that is the same as Low Molecular Weight Heparin! Instead of Warfarin.

    If I could not keep my INR steady like I can I would definitely do like Dave and APsnotFab and go over to LMW Heparin (Fragmin or Lovenox).

    Hope you will find a solution. You have helped so many here on our site.

    Kerstin

  • I have the same machine at home as you and self test at home also, thankfully. I am not LA, just the other two, and one of the new experimental ones flagged on the AVISE panel. That one bounces pos/ neg. we do have Fragmin here , but doctors seem to use Lovenox more frequently. They are both LMWH. My hematologist said they are very similar, "much the way Coca Cola and Pepsi are", if that makes any cultural sense to a Swedish lady! ( can't remember if Pepsi exists in Scandinavia... )

    My internal med doc and heme ask about my green vegetables. I tell them about this wonderful site and with regards to vegetables, of Kersten from Sweden. Eat reasonably and healthy- and steadily the same amounts every day and the Coumadin will be adjusted to THAT level. They say EXACTLY! So this is exactly what I do. I am aware of the " charts " of k values the dietitians hand us and I'm mindful. The real question I have no one addresses:

    ( be aware we own hotels and restaurants. My father In law, Hansueli, cooked John F Kennedy 's last meal in Houston Texas-master chef - executive chef of the famous Warwick Hotel. very famous chef from Switzerland. Each year my birthday gift - my request- is a private cooking lesson- so a lot of chemistry in cooking.) we actually have the thank you note Jackie sent up . They flew from Houston that morning to Dallas- no breakfast. )

    Osmosis/ osmotic membrane in vegetables. No leeching out of vitamins via osmotic membrane. That's key. How to RETAIN vitamins is key in food . How you cook it. French method retains the most vitamins. I'll share ( admin can post for all) if you'd like.

    My question:

    If a vegetable is frozen- does it loose its K value? I'm looking on packages, it lists vitaminc content/ but lists no k.? Usually we prepare fresh- but now as emergency I keep frozen spinach and Brussels sprouts to use if I need if I'm in trouble. ( INR too high but this has never happened yet. )

  • Hi Kelly again,

    As to brusselsprouts I usually eat them from frozen. Difficult to find fresh in Sweden in winter. I always have them in the freezer at home to take if it is necessary.

    The broccoli I always eat fresh. Spinachblades are also fresh.

    About the K-vit value in frozen brusselsprouts I do not know. They have helped me if I have taken 10-15 of them.

    You have to try and make notes to learn how it is for you but I think this is only working if you have got enough of strips and can test rather often. I test every second day. As I also have Lupus Anticoagulant it can probably be more difficult for me to keep in range with my INR.

    Must be positive when you own hotels and restaurants to get the food you need.

    Kerstin

  • No, the hotels are in west Texas! We are in central Texas. My husband flies to work during week and I work in the office here. ( We did own a hotel/ restaurant here in Kerrville Texas but we sold it 10 years ago.) We are about to build a new one in Fredericksburg Texas very near here. ( my husband is architect) called The Lucerne. He was born in Switzerland.

    So I've alway gone to grocery store like every else. It's much better this way!

  • Rutuximab works on APS by wiping out the immune systems ability to produce the APS antibodies. When the antibodies are reduced, rick of blood clots and symptoms are reduced. This method is 100 percent effective in treating catastrophic APS, and also in treating APS in those who have recurrent blood clots despite being therapeutic on Warfarin. It is a good therapy for those of you who continue to have symptoms despite being on blood thinners. My INR hit 2.5 again and I am having a really bad flare-up right now. I have pain everywhere and my DVT leg is in bad shape. I had to double up on my pain meds. My arms, hands, and legs are swelling up and falling asleep just from laying down in the bed. I checked everything, including my blood sugar and decided to do an INR test and my INR is low. I don't have fragmin to inject when my INR is low, so I just doubled up on my Warfarin dose and I will re-test in a few days. Last week, my INR was low and I had trouble getting my blood into the test strips before it would dry out. I went through 5 test strips with error codes. I decided to get a lab draw and my INR was low. It was between 3.0 and 4.0 for many weeks. Now it seems to go to 3.0 one week and then back to 2.5 or 2.6 the following week. This happens despite no changed to my diet or Warfarin dose. It's weird. The only thing I can think of is that my body is over-producing APS antibodies again. I wish I could get them checked, but they won't check them now that I'm already diagnosed.

    They are probably suggesting this form of treatment in your son since he has not clotted yet, and it would be a safer way to prevent blood clots, as he will not have the additional risk of bleeding that he would have if he was placed on a blood thinner.

    Here is a quote from the link. Rituximab

    Doctors are also finding that the anti-organ transplant rejection drug rituximab (Rituxan®) is helping people with the most severe variant of APS, called catastrophic APS (CAPS). This life-threatening disorder causes multiple clots in different areas of the body at one time; about half the people with CAPS will die from it. Yet since starting rituximab, Askanase’s CAPS patients have had no further blood clots. They don’t take rituximab alone, but anecdotal evidence is accumulating that rituximab makes a difference.

    “I don’t use it for someone who comes in with something less severe, like deep vein thrombosis, but if it’s bad, I use Rituxan,” says Askanase. “Because the mortality with CAPS is so high, we want to use what we believe are the biggest guns.”

    Here is the link: resources.lupus.org/entry/a...

  • Ok- firstly- thank you for taking the time for writing such a detailed and thoughtful respite to me when you are feeling so unwell yourself!

    My note was confusing. A lot of the people responding ( mainly admin) know my situation- but you- I need you in my court. Hang with me. I need you for ME! You are the first person to speak my language maybe about your limb going numb when laying down- the one that previously clotted. I completely understand as you are describing my right arm which had a DVT in November 2016. I have the same theory as you do as to why it still feels like it's re clotting from time to time. But, I do have anti phospholipid antibody draws during these episodes ( I don't think they are as severe as yours - no severe swelling) and they are negative, with the exception of some of the newer ones on the "AVISE" panel.

    I tend to have more internal organ distress as well. I've been through many major organ surguries before my APS diagnosis this past November 2016. I theorize that when my antibodies are prevelant throughout my body , my organs don't like it at all. I rash systemically ( organs are complaining?) also and it can cause low INR which also causes migraines.

    I took my 15 year old son to his pediatric hematologist ( he had simply to get screened for APS after I came down with it! I already had one established because he was very unwell when he was little with complication with ulcerative colitis, and again last year with Lymes disease, ( Texas Hill Country - many Rivers and lakes and deer) so he is under this hematologists care anyway.

    The hematologist was referring to me, and possible treatments to get my APS better under control, not my son. I had itp purpura at 18 mos. ( I'm now 48.) looking back on it, it was likely caps and the massive steroids they gave me suppressed the APS. That's what the hematologist said yesterday. That's what my own hematologist has also wondered. I was not expected to live- my parents were told to ptrpare for a funeral. They said I was to ill to survive removing the spleen. ( back then in was a huge surgery. They did not realize I might have been actually micro clotting at all.) After seeing the link you included re CAPS and Rituxan- makes sense why he suggested this. I am apparently at a higher risk for CAPS in both hematologists eyes. eyes. And I just can't stabelize on warfarin. But I've not reclotted!

    This is why I think my sons hematologist thinks we should start supressing my immune system. My arm is throbbing again. Much worse when I lay down at night. The veins at wrist are bulging. But even just under my arm pit feels like it's restricted. Like it did with the DVT! The DVT was in brachial / bascillic . Feels like a tournaquit is on. No docs understand it. Sometimes other veins on good arm can do this- and now sometimes my legs. It is not chronic vascular insufficiency. I'm quite thin- 5'3" I weigh 108 now. I've never smoked. . They theorize that my dysautonomia may cause the vascular system to malfunction. All I know is it ( the vascular issues/ discomfort) never happened AT ALL until the DVT hit.

    Our a daughter Sarah (25) is PhD student. She got basic panel run at the Princeton university clinic- 6 weeks ago. All clear. Grants pedi hematologist wants to take over for her and run a more extensive panel because she has raynaulds and had migraines in middle school.

    My mom died of this. Pre eclampsia, several DVT's , two with PE,s and finally aortic arch anyeurism complication death at age 66. Didn't have diagnosis but retrospectivly it's clear picture.

    This is why I'm screening my children. ASAP.

    We will be surprised if Grant is APS positive. He is not showing any symptoms so far at all, and the odds are in his favor being male. Yes, I'm sorry. You didn't beat that one.

  • Your arm probably has some residual blood clot inside the deep veins which is causing all of your pain and discomfort. I still have chronic blood clots in my right leg. I didn't know APS causes problems with the aorta. That is really scary as having an aneurism while on blood thinners would mean sudden death. I post all of this info so that you all will know what to tell your doctors if you are ever diagnosed with CAPS. You can even put this information into the medical section of your smart phone with instructions to consult a specialist, or to look up the literature and begin this life-saving therapy on you. I have it in my phone as well. Any how, I hope you are feeling better today. Hang in there.

  • Well, since my post I re clotted. Same arm, a little lower down. I had shown that my other clot from November had resolved- but maybe it depends on tech- where they clinch the photo for radiologist to interpret. But this one was in new area. April 1 I had another DVT, but smaller. I think I was so sick, INR tanking- veins hurting- and I clotted. I am now off of warfarin completely. I'm on Lovenox exclusively. 1.5 mg/ per kilo body weight. I weigh 108 pounds. So 70mg LMWH once a day. This is the strength I'd be on in hospital- but not only is it dose to dissolve current small DVT, but it's now my daily maintenance dose also.

    Also- doc. Said Doppler sonogram also showed phlebitis, which can be a precursor to clots. This is what I also sense. Sounds like your situation.

    My hematologist said Lovenox has a mild anti inflammatory property for the veins and arteries. Here's hoping. So far- not at all but today is only day 6.

    Yes- great reminder about cell phone. I had it in old one- just got a new one- need to make sure.

  • Hi Blizzard,

    Very interesting link "Evaluating current treatment options"

    Hope your headaches are better now!

    Kerstin

  • Hi Blizzard,

    I meant bloodpressure not headache.

    Kerstin

  • Kelly,

    I'm in DC and was diagnosed w/ APS in 2005 after getting nicked in the carotid artery during my first attempt at open heart surgery. Long story short, when the docs were preparing me for my rescheduled heart surgery, they had me do 4 rounds of Rituximab (Rituxan) to try to target my antibodies. It was an "off market" use. I went for infusions. After four treatments, there was no indication that it'd done anything to reduce my antibodies.

  • Holly,

    Well, that's very unfortunate on both accounts. I assume they wanted fewer antibodies to reduce your chance of developing caps from the trauma of surgery? Additionally, just to have a better recovery all the way around?

    At any rate, very good data to have for patient data bank. Sad for you personally.

    Thank you for sharing.

  • Kelly you can find info on many foods/ including vegetables @InrTracker.com. I believe they now have an App too which you can have downloaded to your phone. Hope this helps, Cindy in NJ

  • Hey KellyInTexas! This is Nancy in West Virginia. I have APS. When I developed Vasculitis and low serum oxygen levels (low pulse ox), I received quite a few rituxan treatments. I eventually got off the rituxan when the vasculitis was eliminated and my pulse ox returned to normal. I feel it helped me. It got me off supplemental oxygen which I had been on 24/7.

    I also took rituxan in 2001 when I had nonhodgkins lymphoma. Rituxan and adriamycin eliminated the lymphoma.

  • We are having such a struggle with veins- this is very helpful info. So glad to hear you are better, Nancy. From one Southern gal to another, " sounds like you have been through the wringer, ' sho ' nuf!"

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