I have been on Warfarin since Sept 2004 when I had multiple blood...

I had similiar side effects from coumadin and my doctor switched me to lovenox injections. Its not great to have to inject yourself everyday, but its worth it. I feel so much more "normal". If you have had PEs while on warfrin, you should be on something else. You should talk to your doctor about lovenox , having an inferior vena cava filter inserted - or a combination of both. Although warfrin works for many people, some are naturally resistant to it - regardless of their INR.

Thanks for the info.

I do actually have an IVC filter that was put in after the 3rd PE, but it does nothing for the clots that do not come from the legs. I also wonder about the long term impact of having a birdsnest filter in, with the implications on the artery and scar tissue. No one really talks about this much either.

I have been on Fragmin for periods of time, but am even worse on Fragmin than the warfarin. I have taken lovenox for a short period of time prior to surgery, but did not feel much better.

Injections aren't really an issue for me since I used to be an insulin dependant diabetic prior to losing the weight.

Still looking for my magic drug, but so far the warfarin is the best one for me. My mother recently had a PE following breast cancer surgery, but at 83 they are leaving her on Fragmin, which she seems to be doing ok with so far.

I had multiple emboli in my lungs in 1994 2 weeks after a hysterectomy, was put in hospital for nine days. March of 2005 I had a stroke in my right eye and lost half the vision in that eye permanently. My doctor at that time, sent my blood to the Mayo Clinic and it showed I had mutated gene for Factor V Leiden AND Protein C deficiency, we joked about how God wanted to " balance " things out for me. I'd have blood rechecked if I was you.

I had the same symptoms as fiona except for hair loss. I had bilateral pulmonary emboli in 1995 and again now diagnosed in February after a laparoscopic cholycystectomy. No one in my family has clots, and i've returned to work now with joint pain, migraines which the Dr. prescribed meds for, dizziness and lightheadedness, extreme fatigue. Since i am working today, i will leave early and will have to take a 4 hour nap when i get home and will still sleep tonight all night. I also have a low grade fever, and am not stabilized on coumadin yet. I took the lovenox injections for the first 2 weeks after diagnosis along with the coumadin. I hope this gets better. I don't remember being fatigued and dizzy with my first episode and i was on coumadin then for one year.

Just wanted to add another little bit of fun side effects for everyone.

Last month, I woke up with a pain in my right groin. Since no gymnastics were involved, I treated with ice and ignored it. After a few days, pain was worse, so went to the ER (My home away from home) where a bone density scan was ordered. 4 weeks later I find out that I have a stress fracture of the lesser trochanter (part of the femour just below the femoral head - english translation hip fracture).

Turns out that long term therapy on warfarin (ie. over 1 year) also increases your risk of fractures.

And what does one do for this? Nothing. Orthopedic guy said just go as usual and no physio required. Easy for him to say since he does not have groin pain, and associated thigh/Knee/calf pain associated with accommodating my gait. Needless to say, seeing a new orthopedic guy.

I have started iron infusions monthly as my iron and ferritin levels are low (but hemaglobin is fine).

Still wondering which came first - the insanity or the warfarin!

Fiona

hi im new to this and have been trying to find people with same symptoms, im only 26male and in april i had multiple blood clots in both lungs,no one family has anything like this so im the first, i was'nt far fom meeting our creator,i haven't felt the same since,and being on warfarin, i've had the opposite, putting on some weight and keep gettting body aches and pains,mostly in my lower abdominal and kidney area and what seems around the heart, its hard to tell people that have'nt had this because they dont seem to understand, including my doctor, which is annoying! sanity came first lol

Asif