Which treatment do you take to manage... - Hughes Syndrome A...
Which treatment do you take to manage the symptoms of your APS?
305 VotersPlease select all that apply:
I take Acenocoumarol as an anti-coagulant
I take Low does Naltraxone with increasingly good results: (LDN) to calm down my five autoimmune problems - also 2 x 75 mg aspirin daily.
Mary F
IVIG
I take phenindione, along with clexane injections.
I have just been started on mepacrine a similar drug to plaquenil
I take 325 mg aspirin/day. I am also on a trial of Plaquenil.
pregabalin, propranolo
I take nattokinase
I take Plavix 75mg
Fragmin injection every day!
I take Rivaroxaban, or brand name Xarelto 20mg one a day which for the last five months seems to be working for me.
That's unusual Miley as Rivaroxaban has not been deemed safe yet for APS patients. There is a trial - RAPS taking place and the results should be available next year. However, I have heard of a couple of other people taking it and the results of the trial are positive so far. Is there a particular reason your specialist recommended it?
sorry tried warfin but it was so unstable aso take loads of other meds as I have M.S. as well lucky me.
Acenocumarol (sintrom)
I was offered Riveroxiban by a GP at my surgery but I declined because of the evidence that if you have a bleed there isn't (yet) a drug to reverse it.
She was unaware of this fact!
I take Imuran, Mobic
Take 8mg to 12mg a day depending upon weekly self test and doctor's instructions.
Like Leigha I take nattokinase but with serrapeptase and other enzymes in the form of "Neprinol"
I now take 2 neprinol AFD twice a day 30 mins before meals with the all important glass of water and an extra serrapeptase capsule along with the Neprinol.
Neprinol AFD 500mg capsules
15000FU
Serrapeptase 80000 IU capsules
I have adjusted my dose several times and up the dose when the fatigue and other symptoms return.
I did my own research. I based my treatment on the the fact that various different blood thinning medications aleviate Hughes Syndrome Symptoms. Since each blood thinner works in a different way it appears that all blood thinners work to some degree. Since Nattokinase is known to thin blood then it should work. Serrapeptase is commonly used in conjunction with Nattokinase, they seem to work well together. Neprinol has both enzymes along with some other enzymes and works well for me with adition of more Serrapeptase.
Most drug research is invalid in my opinion due to the research being carried out by the drug companies with a prejudicial financial interest.
I needed to find an alternative to heparin which has side effects when taken for long periods.
I could not find any side effects for Nattokinase (it has been taken by the Japanese for hundreds of years) nor any for Serrapeptase.
The side effects for me of NOT taking Neprinol would be a very uncomfortable life and probably death by now, considering my symptoms were severe including a heart attack in 2009. I have been taking Nattokinase and serrapeptase for over 3.5 years.
I take 15mg rivaroxaban
I take warfarin my bloods need to run at 3.9 my blood is always playing around I've had two strokes and a heart attack but still standing I've had it for 19yrs and I'm 55yrs old I'm often at the docs weekly for my blood but still manage to laugh and enjoy life
I've taken Warfarin since 1998 when i developed multiple clots in my left lung, but recently the warfarin failed and i have had a blood clot in both legs and am now injecting twice a day with Heparin, hope to return to the warfarin soon as i really am not liking the Heparin.
Been on warfarin 4 19 years now & oddly enough, although always being very stable, in the last 2 years my INR is all over the shop & just does not want 2 play ball. It makes me wonder if there really r problems with long term use & effectiveness, despite what the experts claim. I too have also suffered 2 clots (both in my leg) & more spontaneous muscle/joint bleeds than I care 2 think about but nothing can b done :/ Personally, I found it much easier injecting with clexane, just a pity it can't b used as a long term solution.
It is hard with the five things I have to at times work out which bit does what! I am slightly sharper currently on it, and have some periods with more energy, I also have lost weight, no diet change.. it seems to have made my slow thyroid work a bit better. I am climbing up on it and well supervised. I have had a few days where I have been better than I have been for years. My Hughes Syndrome was bad in pregnancy, but I still have terrible migraines which became significantly better on two aspirin a day, it has taken the edge off them and I don't have so many, but still get ten day periods of them! However seeing as I was severely allergic to Plaquenil and now most antibiotics. it is good to be having some support finally that is doing something in the right direction. I also look better than I did. Mary F x ps I have been gluten free 16 months.
I take 75 mg aspirin a day
Clexane is very good for me. my symptoms are hugely improved whilst taking the injections.It does clear my head and the difference is noticeable within a couple of days. The only downside is the sore tummy, but if you alternate sides when you inject yourself each day you will be fine.
I inject 7.5 Arixtra daily ( fondaparinux)
Posted on here before, i have recently changed from Heparin to Rivaroxiban 20mg, since taking the rivaroxiban i feel pretty much the same as i did on the Heparin injections. Only now i don't have to inject myself! Whilst on the heparin and now going into the rivaroxiban i have been feeling sick in the mornings, pretty much as soon as i'm upright, i'm thinking this is because im swallowing blood in the night. sometimes just after eating food (a cooked meal) i still feel hungry, stomach feels hollow sometimes. Less headaches than on Heparin too.
I take Acenocoumarol as an anti-coagulant back to self testing and dosing, was on fondaparinux and before that twice daily tinzaparine and before that warfarin with INR of 4.5 but was becoming brittle(INR swings up to 9)
I take Acenocoumarol as an anti-coagulant
I take Acenocoumarol as an anti-coagulant
I take 75-150mg Aspirin daily but I'm hoping to start something else soon to alleviate some of the niggling symptoms I have been getting recently.
topiramate, clopidogrel, aspirin, bisoprolol, micro k, coversyl, atorvastatin
Xarelto
I take Benzofluride, Ramipril, Atorvastin, Adalat, Bisoproiol.
I was put on Xarelto as the DVT came before APS diagnosis which was just a few weeks ago. Also on Plaquenil for Lupus. Have yet to see rheumatologist for follow up appointment post diagnosis so not sure if meds will change. Have had hypertension for years so take a irbetesan for that, hashimotos since my twenties so take 200mg thyroxine for that plus something that escapes me right now, for reflux
Natural health - curcumin capsules, turmeric capsules, raw garlic cloves, foods high in salysilates, essential oils, water, etc.
Was on xarelto .Coridart, dihydroquercetin( taxifolin), PEA (PALMITOYETHONELAMIDE) , vitamin D ,C ,FOLIC ACID, B 12 injections and iron.
