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Sticky Blood-Hughes Syndrome Support
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Epilepsy & APS advice please

I have been on carbamazapine & warfarin for 30 years but neurologist feels carbamazapine is making my iNR impossible to stabilise & has also caused Vit D deficiency. I have been very gradually reducing my carbamazepine & taking lamotrogine instead but it is leaving me feeling vet dizzy, nauseous, dry mouth, pins & needles in arms & have started having panic attacks. I just wondered what other people on warfarin take for epilepsy. If they have side effects & is there INR stable. Thank you

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Hello,

I’m sorry you are having a difficult time.

As you know, “ epilepsy “ is a very broad term.

There are many different categories of epilepsy so what works for one patient may not work for another.

It depends on where in the brain the “ focus” starts. ( the point of origin, or original misfiring neuron.”

Is there more than one, multiple foci?

Does it ( do they) the misfiring signals cross the mid line and involve both spheres of the brain? If so, that’s when you would have grand mal seizures. ( requiring a different medication than if they stayed confined to only 1/2, or hemisphere of the brain.)

It is more common with APS to have temporal lobe epilepsy be a factor of 10 than any other kind of epilepsy. ( to reiterate, temporal lobe epilepsy stats confined to one half of the brain, the side it originates in and does not ,” jump” the mid line to other 1/2.)

Mine fall here. Deep in the hippocampus/ amygdala.

I was diagnosed with seizures in spring 2012, prior to APS diagnosis, which was late in 2016.

1. I was first trialed on Lamical but had a Stevens Johnson’s reaction as I got to higher titrations with a horrific migraine.

2. vimpat was second trial- is a very good choice, but I am not sure how it works with warfarin. I was diagnosed pre APS.

( vimpat did not control seizures because the source was not identified- clotting.)

3. I was then trialed in Dilantin. Again. No control of Seizures. Why? APS was the underlying culprit.

( enter center stage dibilitating migraines and APS escalating...)

4.lamictal at 300mg daily split into two doses ... and APS diagnosed shortly there after. Seizures now ok- EEG’s normal. INR never stable but that’s just APS! The point is I was already on lamictal before adding warfarin. It’s used for migraines and for temporal lobe epilepsy in some cases and has been successful for me.

You must ask your neurologist. It’s a very complicated question, and an even more complicated answer for each individual patient.

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Thank you so much for your reply Kelly it really is very helpful.

It is temporal lobe epilepsy I have with severe APS. I have been well on carbamazepine for many years & no episodes. My Heamotologist is doubtful that changing from carbamazepine will help maintain my INR as APS so severe. My neurologist feels it should as carbamazepine is an old drug & has caused vit D deficiency so she wants me to come off it . I have been having horrible headaches with the lamictal ( lamotrogine), dry eyes & the symptoms mentioned earlier but do not know if a lot of symptoms are this drug or the withdrawal of carbamazepine. I am seeing Heamotologist in a couple of weeks so will persevere till then & discuss with her too.

The neurologist has mentioned changing to Keppra ( levetiracetam) if no improvements but can’t face another 3 months of now weaning off lamictal on to yet another drug which I know nothing about right now. Thank you again, this site really is s godsend at times

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Lind8... I wrote the wrong thing in my last paragraph! It should say I’m on topirimate! ( Topomax) That’s what I finally landed on. 300 mg daily. 150 mg morning and 150 mg nights.

So sorry!

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Thank you, it gives me another medication to discuss with the neurologist & heamatologist. Hopefully I can get it sorted soon

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I hope you find a workable solution. Good luck!

Ps: I will add that I also have a very severe case of APS and am saving a difficult stabilizing my INR.

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I think we have chatted in the past & seen to face similar issues with APS. Hope you are keeping well. Thanks again

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HI, sorry for my late reply, I have been away travelling, still am, and you have had a great and detailed reply from KellyInTexas . I enclose these two papers for you, and the charity website: ard.bmj.com/content/75/Supp... the-rheumatologist.org/arti...

ghic.world/

Hopefully you will find it an informative read. I hope things improve for you over time. MaryF

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Thank you taking the time to reply, really helpful papers. I hope you enjoy the rest of your travels

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Hi - I too am on Topiramate but not for epilepsy although I do have grey matter heterotopia which by rights should lead to it. i take it for a primary headache condition.

My understanding is that if the epilepsy is being caused by APS rather than a co-existing condition, than warfarin at the correct INR level, should help control it. What diagnosis came first? What is your INR and what level have they allowed you to go to?

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Hi, thank you for your reply. I was diagnosed with RA first with migraines & bad joints, then SLE before they all agreed it was APS with a platelet disorder. They didn’t anticoagulant me for a while as at that stage ( many years ago) as they felt one would counteract each other.. it was a few years later after having lots of miscarriages, symptoms of TIAs & absences etc before in passing I mentioned symptoms to my consultant. I was admitted for a month for tests, they realised I had leaky heart valves, hypertension, amaurosis fugex, small vascular disease & epilepsy etc. They tried me on Heparin first but I suffered more miscarriages & then a CVA so since then I have had warfarin with an INR if 3.5 to 4 ( but feel much better when it is running in the 4s) below 2.8 I have multiple TIAs .. but it is never stable which seems to be the common thing with APS.

Interestingly I never realised that if INR is in range my absences shouldn’t happen so thank you for that, I will see if it is when my INR is low that it happens.

I don’t know wether to try the keppra they have given me now (not managing on lamotrogine at all ) or go back to discuss trying topomax which seems to have good results with yourself & Kelly. I’m just concerned about feeling rubbish for yet another 4 months, weaning off one to another again, & then that not agreeing with me either. It feels like a minefield at times. Thank you & thank you to all the admins who have replied, they have been really informative & given me more options of things I can try

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You are welcome.

I will tell you that my seizures do return I’d my INR drops. I also have a very labile INR.

I was hoping that once my INR was in range, I could leave off the anticonvulsant therapy.

My regular neurologist, ( who did a fellowship in epilepsy) did not think it was a good idea, but though an APS neurologist should have the final say.

My APS consulting ( not treating) neurologist is Dr Robin Brey. She felt it was best to stay on the anticonvulsant therapy due to the fact that my INR was so labile.

FYI.

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That makes sense thank you.

I learn something new most days from this site. My last epilepsy episode was when I had a CVA but never made the connection between the two before now

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Hi,

What I now have read I think it is important for you to stay at a stable and high INR of 4.0 to feel ok.

I wonder if you test in the vein at a lab and if you also selftest?

Selftesting after done several parallell bloodtests (fingerprick - vein) to know if the numbers are the same between the two tests, is the best way to be stable.

It can be difficult but it is not hopeless with the right support from Specialist and clinic.

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Hi

I do self test & have weekly vein tests ( more often if INR low or high ) .. I take danaparoid injections 2 x daily on top of warfarin when INR is low.

I did checks running both self test & vein side by side for 6 months but although sometimes it was only .4 difference other times it was over 1. difference so their isn’t always a correlation between the two tests , I use self testing & symptoms as a guide to arrange addition vein tests . My GP won’t use self test results but they will arrange a vein test that same day,

They have never been able to stabilise my INR so I suspect that changing my epilepsy medication is not going to make a big difference.

Thanks again

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As I understand APsnotFab said that you probably need a high INR I understand that for you it is important to keep your INR stable. She knows what she is talking of.....

I have been on this site for several years so I know that many members have great difficulties to keep their INR at a stable level which is very important expecially for some of us. That is really very sad.

The differences between fingerprick and vein is a great problem.

I suggest (perhaps you already do like this) test at home every third day and always make notes that day about the INR, how much Warfarin you took, if you took a new special drug, huw much greens you eat and even how much you exercised.

If you do like that, you will notice what things that changes your INR. Writing down everything I have found is exstremely important especially for us with our bad memory.

Good Luck from me!

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Thank you what great ideas, I have just been self testing when feel out of sorts but will try doing it every 3rd day. I take 19 mg daily of warfarin at moment but I have noticed if I exercise more I need more warfarin, when I asked my Heamotologist about this they said I prob metabolising the warfarin quicker.. An in-depth diary is a good idea as you are so right about memory & quite often forgot all the things that have changed that day that may well impact my INR

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I have a question for you. Maybe you can help me out a little.

You and I take the exact same amount of warfarin each day. It is a little unusual.

Did you always need this much to feel ok? The same INR?

I was diagnosed November 2016 at age 46.

I felt decent enough when my INR was at 3. But it didn’t last long. I re clotted. Developed migraines, felt over all unwell again. I was then set ( by

Dr Hughes) to 4.0. I felt ok there , I clotted with more DVT’s... but I did not feel horribly unwell.

Then that no longer held me. I started feeling horribly unwell. The migraine and true APS symptoms would hit...again. So my team in San Antonio Texas moves the INR up to 4.5- even 5.0 but keep closer to 4.5

Then I was better.... but still clotted through.

Now they have raised me to 5.0 . But we are now working out of the known box.

We are bridging differently.

My hematologist said what do you think?

I said... I want to try bridging at 4.0 IF I’m having symptoms only and only use 1/2 of the heparin that would normally be used. This would only be by vein draw.

This is exactly what we are now doing.

We are also starting Rituximab infusions.

I also have the vkorc1 gene- only one copy. I asked to be tested. It is a polymorphism- disallowing the metabolism of warfarin. If you had two copies you would not be able to metabolize warfarin at all.

My prior hematologist ran this genetic test and told me it was normal! It wasn’t. I need to ask my new hematologist about this. I don’t know if it has anything to do with why I need so much warfarin or not. If it’s genetic, I would have needed the same amount initially. It wouldn’t have kept increasing over time.

I’m wondering if you should get tested for this polymorphism. But would it change any treatment? No. Probably not. I’m not sure. I’m still trying to figure this out.

I switched this past November to high dose Apixaban ( 12.5 mg twice daily) and failed immediately. This was a trial run by an APS dr in the states.

I switched to high intensity clexane. ( per Hannah Cohen, she is my APS specialist Hematologist in London.) I weigh 112 pounds and the dose 60 mg clexane twice daily. The clexane was recommended by Professor Cohen because I fail warfarin repeatedly. The clexane was better than Apixaban, but not nearly as good as warfarin. After a few days I was transitioned back to warfarin. At the end of that approximately three week nightmare I was clotted with confirmed DVT’s , had a TIA, horrific migraines, and seizures. I had gone into bowel ileus. I felt like death had Invaded every cell of my body.

All this was overseen and executed by my Texas Rheumatologist in San Antonio. He and my rheumatologist together said I had gone into very early stage CAPS. ( thus one reason for bringing on Rituximab.) So it may not be that warfarin metabolism is the problem. It may just be the very clotty blood.

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Hi Kelly,

I take 5 mg of Warfarin each day but eat daily greens also. That said, I should take more Warfarin. So without my daily greens I should eat even less than 5 mg daily of Warfarin.

Do you eat greens?

When you take Warfarin and have an INR of 5.0 have you ever had a bleed?

Have you ever clotted at an INR of 5.0?

You have many Specialists involved.

I do not know if you are Primary APS. You must have a hard time if you also gone into very early stage of CAPS! When was this?

Take good care of yourself Kelly!

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Kerstin,

See my reply to Lind8. ( it’s long and painfully complicated. )

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And Kerstin- I always eat the same amount of greens every day- ffrom the very beginning of diagnosis. Consistency is key. I learned from you, remember? I do it exactly as you taught me! I go up or down as needed from the baseline.

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Hi, that must of been really scary Kelly, I live in fear of CAPs happening. Your INR really is running high now but I’m guessing like me when your INR is very high you feel a lot better.

I started off with INR of 3to 4 & started on 3 to 4 mg of warfarin daily about 30 years ago. Over time my warfarin to keep me in range increased more & more . They said I was just building a tolerance to it over time. Eventually ended up on 26 mg daily & used to be admitted & bridged with heparin infusion when INR still dropped ( until I developed an allergy to heparin).

My GP did not want to take responsibility for dosing me at that level of warfarin so it was decided to start me on fondaparinux injections only & stop warfarin. I kept telling them I was experiencing TIAs & migraines but they couldn’t understand why that would happen, 6 weeks later I had a stroke & hypertension. They put me back on warfarin, the dose is slowly increasing again now. They increased my range to 3.5 to 4 but

I do feel I am having TIAs at INR of 3 now ( losing sight in my eye, headaches & dizzy spells ) I am going to speak to my Heamotologist about bridging at 3 when I see her in in the next few weeks . Heamotologist has said she doesn’t want to run it much higher than low 4s because of my platelet disorder which means I bleed more anyway. I have never had a big bleed ( other than bleeds behind my eyes ) so I know the clots are much more an issue for me than any bleeding.

I have not had a test for that gene but as you said would it change my treatment. It will be worth me checking this out though with Heamotologist.

They also looked at starting me on retuxamab infusions but said they were unsure if it would make a difference & you need to meet strict criteria in the U.K. to get funding for it.. I would be really interested to know how you get on with it & if it helps in any way, if that’s okay ?

I do hope you are feeling a lot better now your INR is higher & that the CAP episode hasn’t left you with long term damage.

It is good that the hospital are listening to you & working with you to try & find a solution. Please keep in touch & take care

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Ps Please could I ask do you see a rheumatologist for joint issues too or for your APS?

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It does seem we are running a similar course.

1. I want to be clear that I did not go into full blown CAPS. My rheumatologist and current hematologist are now working hand in hand on my ,” case.” They are calling it early caps, or mini caps.

In the USA we must also meet a very strict criteria for Rituximab.

My rheumatologist said that in order to be diagnosed with it, there is a strict criteria that must be met, which I have met. He said on a few occasions. I have self pulled out . I just barely went in then pulled out. Three organs involved and limb DVT’s.

About once a year since diagnosis when I clot, I will start clotting systemically. I have just thought they were horrible flares. ( tiny clots to large clots.)

This was discussed with me in September before I trialed the Apixaban, briefly. My rheumatologist mentioned that if it failed he was considering Rituximab, but he did not go into detail.

When I became so horribly unwell on Apixaban and clexane back to back, there was a problem with timing. I was in the mountains in New Mexico, I came to Texas, called the hematologist who was supervising the ,” experiment, he said to go to emergency room and have the doctor there run tests and get with him- which I did- but the communication broke down. I Was was during our Thanksgiving holidays.

I was up to 15 mg Apixaban and finally in ER ( a and E) I took 20 mg Apixaban because a scan confirmed I did not have a brain bleed ( I was in horrendous migraine) ... and when the drew blood it would not flow... couldn’t start iv..( I had a DVT I arm blocking ) confirmed about three days later but I knew at the time I was in clots) but A and E doc wouldn’t switch me to clexane!

It was the 12 hour mark and I needed Hanna’s letter implemented like my hematologist and I had discussed! 60 mg morning and night. It was 7:00 pm and I needed 60 mg clexane. I needed to shift off Apixaban to clexane. We had just confirmed I did not have a brain bleed.

He would only be willing to give me 40. Put me in the hospital. He said your hematologist does not want you to continue the Apixaban, but does not want to put you on Clexane.

I even had a copy of Professor Cohen’s clinic letter with me. It detailed the dose of clexane she recommended. I told him that my hematologist in San Antonio ( Dr Beeram) whom he had just spoken to had a copy of this exact clinic letter!

I told him there is a misunderstanding. You have misunderstood. Please call him back.

I have severe APS. I can go into CAPS. I promise you have misunderstood. He and I agreed I would shift to Professor Cohens suggestion of 60/ 60.

He refused to call.

So I said, I have clexane at home. I’m going to take 20 mg of Apixaban because now we’ve proven that 15 was too little. Please document this. I’m taking it in front of you. Please document that we have a misunderstanding I think. That you have misunderstood the hematologist. Please document that I am leaving , to go home and implement the plan from my last office visit with my hematologist. To now begging the clexane at 60/60. I will begin this at 7:00 tomorrow morning.

The doctor was very nice, and said he understood. I was to come back if there was any complication. I was to call dr Beeram’s ( hematologist)office the next morning for an emergency work in.

This is exactly what I did. The secretary said that because I was was not actually put in the hospital, and I had “chosen” to leave the hospital against the doctors advice , it could wait! She said this without checking with a nurse, or anything. She just made that decision on her own.

I explained it was an emergency. That the doctor said and wrote down on the discharge papers I must be seen the next morning. She said we will call you within 24 hours with an appointment. That never happened. I called again and left message. No return call.

Then the full Thanksgiving holidays hit. Offices were closed that week. I saw that in about two and a half weeks I had a pre scheduled appointment with my hematologist.

So I decided to wait and just figure it all out then.

I was fully on my clexane and managing myself.

I could tell I was better on warfarin than clexane. After about 5 days of clexane , I made the decision to put myself back on Warfarin. I know how to bridge until I’m in therapeutic range. I was having vein draws daily. I have a standing order for INR from GP at my local hospital. ( my hometown is 1.5 hours away from San Antonio.)

I then had my ,” regular appointment “ with my hematologist. I told him the entire saga. I kept meticulous notes. He was horrified! He said he never told the emergency room doctor not to commence Clexane. Yes- there was a misunderstanding and the doctor should have called him back.

He said as far as his personal office ( there are 12 or 15 hematologists there) there were some personelle changes during that time. ( new employees.)

He said I did exactly the right thing. He gave me a prescription of new Clexane injections. Way too many... ( I was running low.)

So that’s why I was not in the hospital when all that happened. I left. I refused to be admitted because no one knew how to care for me.

( my doctor at London Bridge lupus center , Prof Natasha Jordan, said it was a little easier to get ivig in the USA than the UK because there were fewer people in the U.K. to get the normal antibodies from. Maybe there’s no shortage of mice in either country! I have no idea- just a joke there.)

Professor Jordan was keen to try IVIG in my situation when I saw her in May 2018. ( for my San Antonio Dr to do it.)

My clinic notes from my rheumatologist in San Antonio made mention of the possibility of perhaps bringing on IVIG therapy if the DVT events continued. She asked to be kept abreast of its outcome. ( which reminds me ... I should let her know about change of plans to Rituximab instead. And the failure of clexane, as Professor Cohen had copied / sent her the recommendation for that plan as well...)

Rituximab is slated to begin on 21 April.

It will be 1000 mg per liter.

First infusion, And then second infusion 14 days later. ( steroids and antihistamines with it given over 8 hours.)

Then it’s every 6 months to ,” prove concept” . We may lessen the dose later.

I also wanted to tell you that it’s not as likely to have a reaction to LMWH ( as it’s synthetic) as it is IV drip heparin. ( fractionated. Doesn’t mean it can’t happen ..

IV heparin is actually porcine- from an actual pig. This is why you can develop antibodies more readily. This is the real HIT risk.

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And... I see rheumatologist for APS . I really do not have painful joints. Some stiffness and swelling of fingers , especially in the mornings but it’s nothing to seriously complain of. Mobility of fingers can be a bit impaired. But I don’t have a lot of pain or serious problems.

(My FR is very highly elevated. My number is 512 where 21 is the highest range of normal. )

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Nope. Correction. “RF” - Rheumatoid Factor

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With bridging, is that like taking a Fragminshot when too low INR? I thought it was bridging before an operation. Sometimes an other language is difficult to cope with.

I wonder how many Specialists (from different countries) you have got involved in your treatment Kelly? Too many?

You talk of "brainbleed" when taking Apixaban (I think it was) and that you have not had a bleed, but did you have a bleed when INR was over 5.0. We can get bleeds from different organs not only the brain or....? Did they take a MR to find if there was a bleed?

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I have never had a bleed from my brain or anywhere else.

The emergency room doctor was so worried with Apixaban so high and horrific migraine and symptoms of Mental confusion he only thought if might be a brain bleed. It is wise to rule it out.

It was in fact NOT a brain bleed. I was clotting. It was a TIA. And seizures.

Initially I needed APS specialists in London, Kerstin. I needed their help.

If I would not have had Professor Hannah Cohen’s letter with her instructions ...what would I have done? Not only was it my proof , but it guided me on how to save myself.

Professor Hughes saying that I actually had APS saved my life, and explaining that I needed an INR of 4.0 ( higher than 3.0) in a letter to bring back home to Texas for my GP also started to get me better. It allowed my GP to help find the right hematologist who would would work with me.

I think it was vital I went to London for help.

I think now it is no longer as necessary as it was.

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Of course it was fantastic that you got the possibility to see prof Hughes himself!

I have only had two Specialists but I have had them for over 10 years both of them. They know me well and I am so happy to have them. Almost like friends. I also have a fantastic GP when I have some infection etc. We live in different countries with different rules as to its healthcare-system.

Thank you Kelly and take care.

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No problem, Kerstin!

You are so fortunate your specialist you have understand APS. You are fortunate you were sent to them straight away- you did not have to search for them too much. I’m sure you had some struggles.

I finally now have a the right team in place in Texas... I think. Nothing is ever perfect and there is much to be learned by everyone... around the world!

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I was not sent to them right away. First I saw some Neurolgists, who to start with, did not understand as they could not find any clots on me even with my lots of TIAs.

A well-known Balanceexpert understood and said I had microembolies. This had to do with my left middle-ear. The embolies were all on the left side of my body but it was my right side I had my symptoms. Right side of the tongue, right eye, right arm etc etc.

Finally a very clever Neurologist suggested Warfarin (I did not want to have that to begin with) as I had Amaurosis fugax. This was almost 20 years ago and at that time indeed very few Experts knew what APS was. I had at that time not heard of Prof Graham Hughes either so my knowledge was zero.

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Kelly

That is awful, especially as you had managed to get to hospital to try & get it sorted & even worse that secretary then made the decision to not give you a emergency appointment. I feel a few drs seem to take offence if you try & explain what you need to happen ( even though it’s your body & you know best, especially knowing what works & what doesn’t ).

Can they put anything extra in place to ensure nothing similar ever happens again? . Even though they should of just token into account your specialist letter in the first place.

I have not tried any of the new anti coagulation tablets as Heamotologist said I had had too many clots & there was no reversing agent for then with too high a risk of bleeding with platelet problem.

You are correct about the heparin too, they did tests & decided it probably was the pig product I was reacting too. I tried the LMWH after that to bridge with but went in to develop an allergy to that too, then had fondaparimux to bridge with that but wasnt strong enough & ended up with a DVT in my leg. I now have danaparoid injection 2 x daily when INR low & take fexafenadine every day to try & stop any reactions.

Only immune suppressant I take is azathoprine but not sure if that makes a difference as a very low dose.

I am so glad you have got funding for the Rituximab & hope that it stops a lot of your clots forming & stabilises things for you. You really have been through it.

I asked about joint pain as they said I do not have lupus but a lot of the symptoms especially in my wrists & fingers

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Ps i meant to add I tried sandigloblulin infusion 25 years ago but had horrific headache & vomiting for 3 days afterwards so was discontinued .. My sister has has Rituximab a few times now as has SLE and they have helped her a lot with reducing inflammation

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My insurance covers the Rituximab.

Where is your sister?

You are in the UK, yes? We do not have fondaparinux in the USA . ( or so my pharmacist / chemist told me...)

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I think you are in Australia... I just looked up sanduglobulin... it’s an Australia thing !

Ivig can cause micro clotting. It’s not great for APS patients unless it’s gone in a very specialized way.

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Hi both me & my sister live in the U.K so thankfully done on the NHS she was very ill at the time.with her SLE , but as I say had great results.

The sandaglobulin I had was done jointly via my rheumatologist & Heamotologist at the time, again in the UK. I wonder if I did get micro clots & that is why I was so ill with it, I ended up on morphine the headaches were that bad.

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That or possibly meningitis. That’s another possibility. More likely tiny clots and super thick blood. With APS patients it can really be a big problem.

Usually my specialist gives antihistamine the day before and during the infusion. ( with ivig) And extra fluids as it’s very dehydrating.

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So your IVIG will be like my Rituximab. Jointly decided upon and monitored by rheumatologist and hematologist. The Rheumatologist is a little more leading it I think. ( as we are following the Rheumatoid arthritis protocol )

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