I finally found a hematologist who is treating me for aps, he doesn't seem to be an expert on this but wants to help, he started me on 60 mg of lovenox and 5 mg of warfarin, the lovenox just until the warfarin started to work they checked my inr and it was 1.92 after a week of being on it and told me to stop taking the lovenox, I'm not feeling great and a little nervous. If I were to just do the shots what is the normal amount for this disease?, I only weigh 124 pounds. Any advice would be greatly appreciated.
Thanks Amy
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Warfarin takes a little time to build, hence "bridging" with the other drug. I've not heard of lovenax, but it's probably a brand name for heparin or something.
Most anti-coagulent doses are based on weight, but are then fine tuned for the individual. I weigh (a bit rusty on weight in lbs) about 200lbs (90kgs) and have a daily dose of 11mg to maintain my INR of 2-3.
Lots of things can affect warfarin: foods (don't eat cranberries or grapefruit, probably other stuff), having a cold, stomach upsets (affects how quickly it digests). Once out of range, it can take a few weeks to settle down again.
From experience, having a high INR does more than increase the risk of bleeding (and hence bruising) - it makes me feel dizzy, light headed and other symptoms, so stopping the bridge was the right call, before you end up in the INR 4+ range!
Thank you for the information, it is greatly appreciated, i go in this Wednesday to get my INR checked hopefully it will be more in like the 2 to 3 range, I'm just wondering if it would be easier just to take a shot and not have to always worry about inr and food and what not! I seem to have a lot of anxiety as I'm sure all of us do, and my dad just passed away 2 weeks ago so it seems it's worse.
My sister den web is on lovenox. She was on warfarin and used lovenox as a bridge. Dr. Told her same thing to stop lovenox. She did and warfarin gave her one of 1.2 too low. She saw APS specialist in city as her local hematologist didn't know enough about APS. She wound up in hospital with a bunch of little clots and had to be put on heparin drip. Her APS dr. told her to stay back on lovenox she lost her right leg do to APS didn't know til after that she had the disease. The good leg now is one with bunch of small clots. Unfortunately she has another blood disease polycythemia Vera. And it's hard to control her clotting but lovenox is working better than warfarin for her. She is on this site debweb so you can read her posts. Hope you do better and happy new year.
Thank you for all the info, I seemed to do better on lovenox, but still working on my inr, hopefully I can get it to 3 by my next check, I'm thinking of maybe having a glass of wine a day to help it seems to make me feel better and warm. I hope it goes well for your sister we have chatted on here and losing a leg is a terrible thing to happen she must be strong.
She is very strong but this disease is very hard to cope with. She seems to continue to clot. So far lovenox seems to be working for her. Hope you do well too.
Lovenox is Enoxoparin and dose is 1mg/kg with a 40mg once daily dose for DVT prophylaxis. They normally stop the bridging dose once you near you lower target INR level which by the looks of things is 2 for you.
Most of us have an target of 2.5-3.5 so check your range with the hematologist. You should NOT just use the lovenox on your own without authorisation from the clinic as it can let you bleed out if uncontrolled. The warfarin should be enough but as I said check your range.
Hi, I am glad to hear the word 'help' in your medical care plan. We can't give medicine doses on here, only encourage you to work closely with your main medical consultant and GP. Do think of emailing them the charity website,as it contains such great information which they would find useful. Let us know how you get on with the continuing and evolving care for your Hughes Syndrome/APS. Do continue to ask them questions until you feel confident and it is all fine tuned individually for you. MaryF
And trust me, you DO NOT want to inject daily. It very quickly becomes annoying! Heparin/Enoxiparin/Lovenox is also extremely short acting - it will last for a 24hr period (or there abouts) whereas warfarin is longer acting.
Your range will be set by your doctor - some are 2-3, some 3-4, some in between.
Unfortunately, it's best to roll with it - figure out when to take your tablets, make it routine. The food aspect is easy - just avoid grapefruit and cranberries. I also have to be Gluten free and steer clear of a bunch of other stuff as a result of the underlying condition that led me to clot and led to the development of APS - Christmas is SO much fun when you can't eat most of the goodies!
Sorry to hear about your Dad, hopefully with balanced warfarin to control clotting, things will start to improve.
I am also gluten free and I can't eat beef, i have crohns disease as well, I've given up dairy soy and corn at one time but for now just gluten free and no beef! If you don't mind me asking what underlying condition brought about a clot, I'm So curious anout This disese, and yes Christmas is tough it's also my birthday!!!
Awe Happy Birthday! I'm on my way to vascular surgeon! I lost my leg to this lousy disease and my Hemotologist knows nothing about it and at first he wanted me to be between 2.5 & 3.5 which was fine with m! Then said between 2-3! Not ok! I've with 10 mg of warrafin and 75 mg Plavix continue to be 1.4-1.7 now I may haves Phlebitus/DVT! All because the Hemotologist won't listen to me! I have an appointment this Wednesday in NYC with a Dr. Caroline Cromwell an APS SPECIALIST I WAS recommended by this glorious site! Don't know Wat id do without! I've been told that people with APS shud be at 2.5-3.5 levels! Since I've had the very rare CATOSTROFIC APS I think I need to be at higher levels than 1.7 which is in the normal rang for normal people! You must ask ur doc to look at this site and get the HUGHS Syndrome foundation booklet written by Dr. Hughes and carry it with u everywhere! If u join the Foundation it's free! I don't care what it costs I need 3 handbooks at least! To try to educate the doctors in the USA!!! I'm hoping this will help u my dear! I'm waiting for my vascular doc to come in now and c m! I pray I don't have a blood clot in my leg or if I do its superficial! Good luck my dear and keep at it till u start to feel good! I havnt felt good since July was DX'd on Oct 4th and still trying to get stableized on my blood thinners! My sister is ready to take me to England!
I hope You Don't have a blood clot, I'm so sorry that you lost your leg to this disease and yes it is crazy how little they know here in the USA, I've thought about going to England myself, I'm scared most of the time, my symptoms are arterial mostly. I hope things go well for you it seems you have a plan at least.
Well, we thought it was Ulcerative Colitis, but I am being tested again (after a total collectomy in 2009) for recurring symptoms. So, I have an IBD, but not sure if it's Crohn's or Ulcerative Colitis. I have just started Humira to reduce symptoms, so that the docs can investigate further...
Oh and EVERY medication interacts with warfarin, so requires careful management with other meds, but I'd rather take warfarin than EVER clot again - 3 DVTs, 1 PE and 1 bi-lateral PE are enough!
Jeez I think that is quite enough clots, I'm so sorry it sounds horrifying. They just tried to get me on humira but I decided not to my symptoms were more of a blood flow issue, so I'm not taking anything for the crohns hopefully it behaves!! I've run across a few people on here that have IBD and aps must be a connection.
My sister has APS just diagnosed. She wants me to be tested for it. I don't think I have it. Don't know if it's heritary or not. I have thyroid issues and irritable bowel syndrome but no clotting issues. Wonder if I shouldn't be be tested?
Perhaps as your sister wants you to test, you should do it. If you also are in the age when you may get children perhaps you should test also.
Read about the symptoms on this website. People may have the antibodies but no symptoms or have the symptoms but no antibodies.
It is a rather new illness (30 years since Prof Hughes discovered APS) but as Mary says it may go in families. I think I have it in my family. I have two grown up Girls ( now 38 and 41) and they both went to my Rheumatologist and asked to be tested 10 years ago and they tested negative. Their own choice.
I was around around 45 when I had my first suspicious symptoms.
Thank you Kerstin. I appreciate your input. I am 65 years old so no worries there. But I do have thyroid problems and terrible stomach problems which nothing seems to help. I see many people with APS seem to be gluten sensitive maybe I should try that myself. Have a merry Christmas and happy new year. Thank you so much.
Before you start it you should have a blood-test for that. I tested and i was not gluten intolerant but I do not feel well on fat and weatbread. If you start to cut down on Gluten it is too late to take a bloodsample and know if you are sensitive or not. Hope I am right now with this info but I guess so.
I was tested for gluten and it was negative. Everything dr. Tries doesn't help my stomach problems. If anything they are worse. Thanks for your input. Didn't know you could be sensitive to wheat if you tested negative for celiac disease
I do not know if I am sensitive but I do not feel good after fat and wheat-buns anymore. If I have to, my Rheumatologist (APS-Specialist) has prescribed "Esomeprazole" for my stomach, that I can take one of, if needed. I eat hard bread with oat (recommended by another Rheumatologist some years ago).
Oh yes you can be sensitive to wheat, i got tested through a thorough blood testing called cyrex, give up gluten for a week and see how you are, I felt way better but also gave up dairy soy and corn. Good luck, I also have crohns disease as well.
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