I want off the meds
Posted in General Question about 1 year ago, 15 replies
submitted by susan in Tn
I know exactly what you mean...it would be wonderful to be rid of all meds for this stupid Factor V...however, I took a two week "vacation" from warfarin...ended up with a PE and almost not making it to my birthday this week.
It is tiresome, especially when you have to go on Lovenox for some procedure, but when you consider the alternative, it's not such a problem.
I'm sorry you have to deal with this problem. I'm also diabetic and deal with insulin. Hope you take care of yourself.
It is tiresome, especially when you have to go on Lovenox for some procedure, but when you consider the alternative, it's not such a problem.
I'm sorry you have to deal with this problem. I'm also diabetic and deal with insulin. Hope you take care of yourself.
submitted by Karen in Florida
@ June 27, 2012 - 09:57 PM
I never knew I had Factor 5 Lieden and Factor 2 mutation along with Hemophilia(?) until I had several strokes in 2006. Then they found 2 quarter sized holes in the back of my heart. Had a pace maker put in last year because my heart rate was dropping down to 15BPM at night and 30 durning the day. I'm on Coumadin also.
I tried to get the doctor to sit down and explain it all to me but you get 2 minutes with the doctor......LOL
Patti
I tried to get the doctor to sit down and explain it all to me but you get 2 minutes with the doctor......LOL
Patti
submitted by Patti in Lincoln, NE
@ April 27, 2013 - 03:21 PM
this factor five stuff really stinks my middle child threw clots into the lower lobes of her lungs within days of the dr increasing her birth control so 8 yrs later she is still on coumadin ( 2 pregnancies with the lovenox and heparin ) My oldest had a preemie 2lbs 9 oz at 11 weeks early could of lost her kidney function all because her "specialist" ob didnt take factor 5 seriously, shortly after, had gall bladder removed and threw some clots into her middle lobe. Now she is on coumadin 3 years. Do not stop taking the coumadin, continue to get your blood work done. Factor 5 sounds so innocent but has WAY too Many complications
I was diagnosed with Factor V Leiden In 2008, I had back surgery in June 07 and a week later I woke up and had a hard time breathing, went to ER and they found a clot in my lung.. took care of that,, took Warfarin for about 6 months and I took myself off of it because it was making me sick, well,,, 4 months later I had a clot in my leg come up,, that is when they did the blood test and told me I had the Factor V...and now I am to take the Warfarin for the rest of my life,,,
I don't know about anybody else who is taking this rat poison but it makes me so sick,, makes my body ache, muscles and joints and also many many trips to the bathroom all the time,,,
I had always been a very active person going 100 mph all the time,, now I barely do 5 mph... no more horseback riding, gardening, motorcycling,jet skiing, some days I don't have the energy to clean my house,, and I'm a clean freak!! Its so darn depressing. I have more bad days then good days anymore..
I will be 48 this Dec 11th and I feel like I will be 88..
I have never heard of this disorder at all... but they tell me that I inherited it from my Father,
And now since Obama closed the Kennedy Space Center down after working there for 30 years I have no insurance and I cant afford the shots.. by the way I have taken them for a couple of months and OMG they are so painful and the bruises and lumps from them..
We can only hope and pray that they will come up with something better for us to take without the side effects.. Some days I wonder if my quality of life would be better if I went off the meds and just took my chances... cause right now I have no quality of life.. I so want to get outside and do the things I used to do... Its so tempting to stop the meds..
I don't know about anybody else who is taking this rat poison but it makes me so sick,, makes my body ache, muscles and joints and also many many trips to the bathroom all the time,,,
I had always been a very active person going 100 mph all the time,, now I barely do 5 mph... no more horseback riding, gardening, motorcycling,jet skiing, some days I don't have the energy to clean my house,, and I'm a clean freak!! Its so darn depressing. I have more bad days then good days anymore..
I will be 48 this Dec 11th and I feel like I will be 88..
I have never heard of this disorder at all... but they tell me that I inherited it from my Father,
And now since Obama closed the Kennedy Space Center down after working there for 30 years I have no insurance and I cant afford the shots.. by the way I have taken them for a couple of months and OMG they are so painful and the bruises and lumps from them..
We can only hope and pray that they will come up with something better for us to take without the side effects.. Some days I wonder if my quality of life would be better if I went off the meds and just took my chances... cause right now I have no quality of life.. I so want to get outside and do the things I used to do... Its so tempting to stop the meds..
My Doctor has me o Pradaxa, Its much better, but still I am weaker than I was before. inpacen@yahoo.com
submitted by Xav in Merritt Island, Florida
@ December 09, 2012 - 04:38 PM
Hi Louann,
I had my clot a year ago when I also was 48. I know what you mean about being 48 but feeling like you are going on 88. I too had never heard Factor V Leiden or knew I had it until January, 2012 when I had a small cramp in my foot for a few hours, went to the Dr and the next thing I knew I woke up in the hospital after 4 surgeries, one week later and minus one leg almost up to the knee. I now have a prosthesis for that but I know what you mean about the body ache, muscles and joints pain and trips to the bathroom all the time. Along with that for the past few months my hands are falling a sleep within a few minutes if I hold then up like when talking on a phone, and I have had some really weird feelings in my arms and legs. One time my good foot felts so weird and achy that I went in for testing because I thought I was having another clot, but the ultrasound and other tests showed there was nothing wrong?
Since then I have been staring to think it is the meds that I’m on. I do not know but I am trying to figure out if it is the warafin or one of the other 3 medicines that I am on. You see the Dr also for some unknown reason put me on Plavix, Metoprolol, and Simvastatin. I too am trying to find out which one is causing the problem, so I was wondering if you are taking any of these other three. That being for two reason, first it seems most people who have Factor V Leiden are only on Warfarin, and secondly after reading the side effects of Plavix and Simvastatin, I am wondering if they are not the main reason for feeling the way I do all the time, yet if you are only on Warfarin, it will probably answer my question.
Thanks,
Jim
I had my clot a year ago when I also was 48. I know what you mean about being 48 but feeling like you are going on 88. I too had never heard Factor V Leiden or knew I had it until January, 2012 when I had a small cramp in my foot for a few hours, went to the Dr and the next thing I knew I woke up in the hospital after 4 surgeries, one week later and minus one leg almost up to the knee. I now have a prosthesis for that but I know what you mean about the body ache, muscles and joints pain and trips to the bathroom all the time. Along with that for the past few months my hands are falling a sleep within a few minutes if I hold then up like when talking on a phone, and I have had some really weird feelings in my arms and legs. One time my good foot felts so weird and achy that I went in for testing because I thought I was having another clot, but the ultrasound and other tests showed there was nothing wrong?
Since then I have been staring to think it is the meds that I’m on. I do not know but I am trying to figure out if it is the warafin or one of the other 3 medicines that I am on. You see the Dr also for some unknown reason put me on Plavix, Metoprolol, and Simvastatin. I too am trying to find out which one is causing the problem, so I was wondering if you are taking any of these other three. That being for two reason, first it seems most people who have Factor V Leiden are only on Warfarin, and secondly after reading the side effects of Plavix and Simvastatin, I am wondering if they are not the main reason for feeling the way I do all the time, yet if you are only on Warfarin, it will probably answer my question.
Thanks,
Jim
submitted by Jim in WI
@ March 18, 2013 - 04:09 PM
Please be careful taking any kind of cold medicine,, I went and had my INR checked today and it was 4.5 Dr said if it was 5 he would have put me in the hospital,, so Im off the rat poison for 2 days then start taking it again and go back on Monday for a re-check.
I had caught a bad cold last week and took Robitussin and we think that is why it shot up so high,, I am on a high dose of the rat poison and they want me to be between 2 and 3..
So please make sure with your Dr before taking any cold medicines!!
I had caught a bad cold last week and took Robitussin and we think that is why it shot up so high,, I am on a high dose of the rat poison and they want me to be between 2 and 3..
So please make sure with your Dr before taking any cold medicines!!
@ Xav
I inquired about taking Pradaxa and my Haematologist didn't want to put me on it because it was too new.. And now I see all the Lawyer commercials about it causing uncontrollable bleeding etc..
The way my health is I'm glad he refused!!
I hope you have good luck with it. I'm sorry it is making you weaker. We just can catch a break huh??
I inquired about taking Pradaxa and my Haematologist didn't want to put me on it because it was too new.. And now I see all the Lawyer commercials about it causing uncontrollable bleeding etc..
The way my health is I'm glad he refused!!
I hope you have good luck with it. I'm sorry it is making you weaker. We just can catch a break huh??
Long term side effects to Warfarin they never tell you about are real. The suppression of vitamin K in your body will sap bone density, and create calcifications throughout your body that can lead to senility and heart disease in later life, regardless of your cholesterol count or good lifestyle. I've taken Warfarin since 1986 and I wish I'd never heard of it. I'm trying to get my doc to prescribe Pradaxa, if it's not too late....
Hello all
Thought I resprained an ankle that had been hurt over 10 yrs ago. Went to ER, they checked it out, examined it, xrayed, etc. Gave me a brace, told me to RICE, etc and instructed if it got worse, come back in. Well, Ok, 2 weeks later, I did.
They performed an ultrasound after some
questions, and found my 1st DVT. Next thing I knew, I was being fitted for IV drip of Heparin and admitted.
Three days of being pumped full of blood thinners and pain meds, my leg still hurts.
I was discharged this last weekend with Warafin and more painkillers..I had my 1st establishing followup appointment today for INR testing at nearby clinic.... My lifestyle is now at much greater risk for complete disability---what I would like to know is can I now officially qualify??
Thought I resprained an ankle that had been hurt over 10 yrs ago. Went to ER, they checked it out, examined it, xrayed, etc. Gave me a brace, told me to RICE, etc and instructed if it got worse, come back in. Well, Ok, 2 weeks later, I did.
They performed an ultrasound after some
questions, and found my 1st DVT. Next thing I knew, I was being fitted for IV drip of Heparin and admitted.
Three days of being pumped full of blood thinners and pain meds, my leg still hurts.
I was discharged this last weekend with Warafin and more painkillers..I had my 1st establishing followup appointment today for INR testing at nearby clinic.... My lifestyle is now at much greater risk for complete disability---what I would like to know is can I now officially qualify??
I'm also a caregiver for elderly person, a housekeeper/cook/ primary grocery shopper/household supplies shopper for myself and several other roommates.
My boyfriend helps a little but has disability of his own --COPD. At least 3 in our household have it, and have their own health worries and can't really deal with mine.
I am also a student full time. I don't wish for my newest health diagnosis to interfere with my studies. SSI/SSDI would help with medical and housing costs while I am in school.
My boyfriend helps a little but has disability of his own --COPD. At least 3 in our household have it, and have their own health worries and can't really deal with mine.
I am also a student full time. I don't wish for my newest health diagnosis to interfere with my studies. SSI/SSDI would help with medical and housing costs while I am in school.
submitted by JDP in Ocala, FL
@ February 12, 2013 - 09:07 PM
iknow how u all feel i have known for 15 yrs it sucks i have done the shots and im on the coumdin the warfin is not as good as the real coumdin talk to ur doctors about it. i have had 2 pe and clots from the legs to the lungs it is very painful and hard to deal with but i know if i want to live i have to take the meds im not happy with it either my health has gotten worse over the last 15 yrs im only 46 i often say why did i get this it is gentic my mom has one gene my brother has one gene and my sister has one i got both not fair
I have a question for anyone, has anyone had problems with their thyroid along with the V? I'm having issues with my thyroid and my INR is running high?
Wow I can relate to these stories! I was just 32 when I had my leg hurt so bad I couldn't walk. I went to the Dr. For the 2nd time cuz my husband kept getting told that it sounds like a blood clot. I was sent to the hospital and yes it was. I had 3 blood clots in my left leg. Not long after I ended up in the ICU for going to the Dr. Again from it feeling like a ton of bricks were on my chest and couldn't raise up. They had broke loose and went to my lungs, blocking all blood vessels or something. It was from birth control but was tested after the 2nd time in there. I was told by the specialist that I was special cuz I have 2 blood clot disorders. I have Factor V and Protein C Deficiency. I hate it! I just bought the machine to test at home cuz I will be on it the rest of my life. I am also allergic to aspirin and other pain meds. I am on 14mg daily. The insurance doesn't pay for both due to too high of a dose. I can't help it. I didn't know that me always feeling like crap is from warfarin. That explains a lot. I was always called a neat freak too. I now feel like it is a chore instead of fun to do cuz I hurt all the time. Good luck everyone that is on it.
Until you find something different though please do not consider going off of the Warfarin since Factor V Leiden is nothing to mess with. I had never heard of it or knew I had it until this past January, 2012 when I had a small cramp in my foot for a few hours, went to the Dr and the next thing I knew I woke up in the hospital, 4 surgeries and a week later, minus one leg almost up to the knee.