I was diagnosed with the big 3 by Prof Hughes 2 years ago and had a problem with taking Plaquanil and can not take high dose Steriods - so I have been very unwell, but now I have been in the most severe relapse for 5 months to a point of being bed bound so I have an appointment at the London Lupus Centre in 3 weeks.
I feel I would like to treat the Hughes first and my preference would be Low Molecular weight Heparin or Standard Heparin (I was on that years ago with amazing results not knowing I had Hughes) so my questions are:-
Is Low Molecular weight Heparin used rather than standard Herparin?
What LMW Heparin is Fragmin, Enoxaparin or similar?
What dose of LMW or standard Heparin is the norm for Hughes?
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riannabri
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I hope this information will help you: ncbi.nlm.nih.gov/pmc/articl... However as you are soon to go back to The London Lupus Centre, they will give you a very good explanation and some suggested guidelines personally suited to your case. Please do let us know how it goes, your appointment. MaryF
I’m so sorry for the terrible flare you have had. LMWH is the synthetic formulation of porcine heparin.
LMWH has the advantage that it is far less likely to cause HIT, as you will not have the immune reaction to it, as I understand it. This is a big plus for aps patients ( like myself) with a history of ITP.
I am also seen from time to time at London Bridge. They are excellent at corresponding quickly with your other consultants.
I would not say there is a ,” norm” for Hughes. It is patient to patient dependent. Many here are on Clexane. ( enoxaparin.)
I have observed with my own body, and just observing other’s journeys, that there is not a one size fits all.
I’ve also observed that quite often each patient must find ( through a little bit of painful trail and error and a bumpy ride for physician and patient alike) the formula that best fits that patient. This has certainly been the case for me.
If you have been on clexane before, and it suited you better, then that is a trial you have already done. You already have the data. That’s fairly compelling data and will be useful for a hematologist.
Dr Hughes will have trialed you briefly on a LMWH just to see if you had a positive response to anticoagulation- then turned you over to a hematologist if you did.
A Rheumatoligist at London Bridge will not take anticoagulation over long term, as it is a highly specialized field requiring blood level draws, specialized education, etc. LB refers out all sub specialists fields of medicine.
I would anticipate at your appointment they will help you liaise with a hematologist. I know that the two top hematologists are Professors Beverly Hunt and Hannah Cohen.
Thank you so much, So I have been put on Enoxaparin for a 2 week trial and have an appointment on 19th at London Bridge - I am hoping it will not further engage my Immune system due to having the big 3 + Hashi's ..... if it does is it best to go over to porcine heparin? does that give less of an immune response
LMWH is synthetic as I understand it- So would not contain antibodies- not as likely to cause a reaction- not as risky for HIT .
Ask your doctor for the specifics on this- my doctor very briefly went over this with me. I have a history in infancy and early childhood Of Severe immune thrombocytopenia , so it was an concern for me while in hospital on IV porcine derived true “ heparin “.
I did just fine- no problems.
I’ve also done just fine when bridged with LMWH ( synthetic heparin.)
Hi thick blood, not sure if you still check this site but do u mind me asking why you're on enoxaparin injections and not an oral tablet? It's hard to find anyone that's been on it longer than 6 months.Ty!!!
I have a sever case of catastrophic antiphospholipid antibody syndrome and while on warfarin i got additional clots in my kidneys calves and eyes. My INR varied wildly from day to day on a stable consistent diet. As you know new blood thinners are not recommended
I see my doctor at least every 90 days and more recently to to check my blood work before and after the Pfizer vaccine. I always ask but her consistent answer is that there is limited data with the small population of CAPS survivors that suggests anything other than Warfarin or Heparin is acceptable. In my case that means Heparin. I am used to it......
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New here and is heparin OK long term?
History of obstetric APS: Heparin not required anymore for long-distance air travel?
Have met a couple of consultants recently who have a gobsmackingly different opinion of Hughes syndrome!
Heparin for APs?
