Hi I am new to this message board. I have more than a few medical problems but was wondering if there is anyone with factor v liedens disease? If so I would like to chat. I have had one pulmonary embolism, a few TIA's and was and supposed to be on long term Lovenox....Hope to hear from someone...
I have been on and off Lovenox for three years. The only bad thing is I developed Osteoperosis but I also have other medical issues...so it can be those causeing it too it is hard to tell. It may seem scary to inject yourself but you'll do fine and i had no side effects. I hope your feeling good...
I was diagnossed with the disease back in 2006. I was on birth control at the time. I developed a blood clot in one of my legs. Luckily I caught it in time. I had to give myself shots twice a day for about 5 days and then I was on a blood med for about 6 months. I have not had any problems since but I have also not been on bc either. I also have pcos so my doctor and I are trying to find ways for me to be able to have that time of the month since I can't talk bc. If you have any questions feel free to ask me. I have tons of relatives with factor v and my dad has it.
My fiancé had a DVT in 2008 in left thigh. He was treated with heparin and lovenox then on Coumadin. 1 week later had PE. Was in the hospital for 10 days on IV and released on Coumadin. INR stayed low developed another DVT and was sent to Hematologist and tested positive for factor V. Was put on 10mg Coumadin daily for a lifetime and INR range set at 3-3.5. July 20011 he developed a new DVT in same leg in calf this time. INR was 3.7 at the time. After going to new hematologist was told he was tested and has no protein deficiencies and was told in Coumadin failure and would be on Lovenox for life and would need a filter. August 2011 still clotting while on lovenox 100mg 2x daily. Doctors are at a loss, going to start testing for cancer.
I have it. Sadly mine wasn't detected until I had a stroke back in July. When trying to figure out what caused it, they discovered it. Been on Coumadin since August, and still have trouble getting my INR in range
The following user gives a hug of support to Joshua480: WolfyLady03 (01-16-2012)
I was just diagnosed in November with Factor v Leiden. Its not a disease though hun its a gene you inherited from one or both of your parents. Often times there are no side effects of it but there are a few that have trouble. I didnt know and went on a high dose birth control to counter another birth defect i have. Hope that tidbit helped and would love to chat any time..
Dang thats scary they cant seem to get my inr's right either.. just recently they finally found something that works and i've seen improvements though because of the lack of blood flow i have a skin infection now from just above my knee to my ankle and halfway around my calf.. its itchy and uncomfy..and to top it off the antibiotics they gave me made me really really sick so i had to stop taking them.
i went through the same thing.. 5 days in the hospital with the shots and everything they put me on coumadin though. my dr was hoping to take me off it but swelling is still there its only been 3 months though. I'm still on bc but i know i have to change/go off but have another birth defect that i have to take bc for. I was suggested to go on mirna but i've never had children so i dont know if they will do that do you know? and if not i'm thinking about going on alesse or ortho tri cyclen again i never had any problems with them other then i forgot to take them all the time. I'm kinda scared to go on it because of the clot. Any advice? does it help going off the birth control completely?
I was told that I have FVL and Antiphospholipid also. I found out thru DNA and genetic profile. The only issues that I have had so far is busted capillaries and small vessels in my fingers busting. I don't even know what my levels are yet. I'm planning on getting pregnant soon and they will test my levels then. My levels are subjective to which of the disorders are most prevalent at the time which in a way sux cuz one contradicts the other. I do hope for all of you that your FVL stables out and yalls issues cease.
Hugs to all
Last edited by w1ldch1ld2; 04-29-2012 at 07:46 AM.
Reason: Forgot to preveiw
hi i had a PE following the birth of my son in 1995. i continued to be unwell and told it was all in my head. this continued for 4 years then went into complete heart block and needed a pacemaker fitting, at the same time they also found i had factor v leiden; however i was informed this was nothing to worry about as i had had it since birth. so i didnt. i was given no treatment. i have subsequently developed a dvt in my arm which has caused many problems. i lost the use of my arm for about 6 weeks and i am now recieving physio to build up to strength. i am in my 30's i am now finally being medicated with warfain 8mg daily. i am very afraid as i have the pacemaker and am currently suffering massive panic attacks. so you are not alone and it is good to realise that i am not alone too.
Crazy how those things work they did all sort of tests on me because they couldnt figure out at my age why i had such a massive clot. My INR's have finally leveled out but on a large dose.. i may ask my dr about something different then coumadin though i work in the deli at Albertons and i am always worried i am going to get cut and they arent going to be able to stop it. Plus with the high dose my hands keep falling asleep..and i burned myself pretty bad and didnt feel it. I am sick of being scared all the time so far it has helped me not get cut though. Good luck and congrats when you get pregnant.
Holy cow! I am glad they are finally doing something. I was told usually the factor V leiden doesnt effect anything but things can set it off. Mine was set off by Ortho Evra..which i cant seem to find a lawyer to help me with that.. Anyways.. i am only on 6mg or coumadin 8mg wow..I am glad they are working to restore your arm i am working on my leg myself its still really painful it swells still and i continue to have veins burst.. i also developed post thrombotic syndrome too.. my veins were to damaged from the clot and burst causing the tissue to be stained..big brown blotches pretty ugly..the pain is what i cant stand and cannot take anything but Tylenol and that barely helps.. i hate taking pain killers so i just deal with it. Its nice to know i'm not alone either but also wish none of us had this it really causes so many problems with our bodies.
hi try not to worry too much about being cut. if you apply pressure and elevate it will stop eventually. i also get numb hands but never associated it with the warfarin. its alot to take in isnt it. i have been put up to 9mg daily now. i think my body actually gets used to it and still thickens up.
I know i dont really worry about cuts that much i get burned at work more often then cut..yes it is alot things have changed so much i hate the pain and feeling weak all the time. I am on 6mg 5 times a week and 3mg 2 times a week that seems to be working pretty well. My main problem is being on my feet so much it hurts after awhile. Also my older brother isnt making it very easy on me.. his wife and he are expecting they decided to wait to tell us because they wanted to do the in womb tests to make sure shes not like me.. which thank God she doesnt have the gene..seems to have skipped his children's line. It scares me.. i dont want my sibs to go through this.. My mom has the gene too and so does my sister. mine was fine until i went on the birth control patch ortho evra and all hell broke loose.. Its hard to think of myself as any different then before but things are.
I didnt think the numbness was part of it either until i looked up the side effects and traced the numbness and tingling back it started when they upped my dose of coumadin. Its a side effect i looked it up online though my dr doesnt seem to think thats the problem.
Last edited by WolfyLady03; 07-03-2012 at 12:18 PM.
So this guy at work seemed to be flirting with me alot.. others noticed..well i had mentioned that i had a blood clot last year..he made some remarks and i had to get back to work..well this last week he mentioned my circulation problems and how it must be scary not knowing what caused them..i said well i do know and told him about being diagnosed with factor V leiden.. and i wasnt expecting his reaction..it actually has bothered me to the point my stomach is in knots and i cant seem to eat much.. Basically he kept looking at me like i was going to die tomorrow.. and then sunday when i came back off of 2 days off..he was angry..kept making snide remarks about how he could run the deli by himself that i wasnt needed that i needed the store ect.. and then i was 30 minutes over my shift because my boss requested i stay over and do some extras.. he threatened to ban my roommate from the store and get my hours cut possibly have me fired if i was over late again..i was freaking out.. my boss stuck up for me and so did my co-workers..I guess what i am trying to ask is anyone else have that when they told someone their diagnoses? Its been really hard to deal with.. find myself questioning the ethics of trying to get with anyone..and just feeling unbalanced i know its stupid but i never had to think of this stuff before now anyone else showed pity or shock but never anger at this level that i actually considered quitting my job. Luckily i have some of the best co-workers and they are mad he was such a jerk to me.. they knew how upset i was. Thanks
I have FVL. I have had enough events to require using warfarin to maintain my INR between 3.5 and 4.
As I was an adopted child and had no connection to my birth parents FVL was unexpected. After research I found that I have 3 siblings by the same parents.Two have FVL one has Marfans Syndrome. FVL runs in both sides of my family. Marfans on my father's side only. He passed away at age 38 from Marfans related issues.
If your medication can keep your INR in therapeutic range the re-occurrence of clotting events are controllable.
My most unsightly problem is bruising. If I bump my arm, leg, anywhere, hard enough I will get a large bruise that takes weeks to go away. I injured the bicep muscle in my right arm, torn tendon, and my arm turned purple from my arm pit to my elbow. The bleeding eventually stopped and my arm returned to normal except for the reduced strength and range of motion.
The tendon tear was not related to FVL or my warfarin from what my doctors have told me.
My understanding of FVL tells me that it is manageable, once you know about it, and a relatively normal lifestyle is possible with this genetic problem.
As I have been reminded, things could be worse. Consider yourself fortunate you know and understand the risks and realities.