[Cass30]

I was told in april that i had a DVT in my right leg behind my knee, it took me 16 days of lovenox injection to be at a theraputic level of cumadin. I went almost a month without being tested and when i was my INR level was at 4.7. I have been feeling absolutly horrabul for a few weeks and i am thinking that thats why, i have headach's, stomic problems, loss of apitite, loss of taste or everyhing tasts bad and extreme heat senitivity...am i going completly insane or falling apart???? I swear i feel horrabul off and on through out the day and im not sure if its my neuropthy getting worse or side effects of a high INR level or that im taking 15mg or cumadin a day
(my doc believes my neuropthy is causing problems with my blood pressure, heart beat and controllong my body temp)

Anyone who could share there experiances would be very helpful, i would be nice to feel not so alone ir that im crazy

[lindsayjane]

Hi Cass,

I'm sorry you are feeling bad. I don't have any experience with that medicine. You may want to call your doctor to report your new symptoms. They may be a side effect of your medicine.

Lindsay

[mrsD]

Sounds like you are having major problems.... this has to be hard on you.

Are you seeing a hematologist? The reason I ask is that 15mg of Coumadin is really alot. Far more than most people get prescribed.

I'd seek out a specialist for this clotting issue. There are autoimmune diseases that cause increased clotting, and also
genetic inherited errors that can cause it.

So I suggest you find a good specialist to handle your case.

[Cass30]

thanks for the advice, i reported the problems to my doctor and they said the problems do sound like the side effects but didnt seem to be concerned...my INR went from 4.7 to 1.0 in the 2days they had me hold the 15mg, they think the side effects are because of my high dose but i can go below 15mg or i dont stay level. Im going in 2 weeks to address my worsening neuropthy and it seems to be getting worse whith the side effects because they affect the same things....ugh its frustrating! now im feeling yucky because i started taking it again...

Sorry i just had to vent, its hard to talk to my friends and family about it, they are all great but just dont get how exosting, stressed and helpless i feel

[Dr. Smith]

Originally Posted by Cass30

Sorry i just had to vent, its hard to talk to my friends and family about it, they are all great but just dont get how exosting, stressed and helpless i feel

Sorry to state the obvious, but I think that's why they invented peer support groups!

We seem to hear about lack of apparent concern from doctors over side effects a lot, but I think that's understandable. Some patients (not saying you) do overreact/panic, and doctors are trained to leave emotional responses out of things because it's natural/normal human response for patients to feed into them. (FWIW, I've had this discussion w/ my PCP)

Initial side effects often dissipate after a break-in period, so sometimes (not always -- each case is different), waiting it out is the way to go. From a patient's POV (only my own), it depends on the severity of the S/E, and how long they're expected to continue. If they're intolerable, then yes, I call my doc(s), and let them know a change is warranted. If tolerable (a subjective evaluation each must make for themselves) I'll give riding it out a shot. If things are still bad after the expected period, again, I'll make the call to my doc.

Doc

[Cass30]

Thanks, i think your idea sounds good, i think the only reason i have just been trying to be patient and not to stress is because i know my body and it ushally reacts strangly to meds and stuff, and nobody is the same and things effect everyone differently. But its hard to not worry when you think noone else had had the same concerns. I do feel like i can take a deep breath now that i got this all of my chest

[aussiemom]

I was in the hospital 3 summers ago with multiple DVTs in both legs, and PEs in my lungs. I had a vena cava filter put in while in the hospital. I did about 10 days of lovenox at home. Fun stuff-not. Then it was about 3 weeks of adjusting the coumadin with in home nurse visits. Now, its once a month PT/INR draws. I stay in the 2s. Its a hard med to adjust, but my dose has been 3 mg for about a year. A lot of it has to do with what you eat, you should have been given a list of foods to either avoid, or be adjusted for. Top of the list are dark leafy green things.

Are you able to be active? Keep the blood moving will help cut the risk of more. Do you see a cardio, or vascular specialist?

And for goodness sake, BE CAREFUL!!!!

[dangoch]

I went through the DVT drill several years ago and it was no fun. I did 3 weeks of lovenox injections and then coumadin tabs for about 6 months. Trying to get to a therapeutic level of coumadin was no picnic. There was a 3 week period where I was going to the lab 3 days a week to get STAT tests so I could adjust the coumadin in the afternoon, next day was just rest and back to the lab the next morning for the next test.

I will say that I recovered eventually and am now able to walk without pain, but it took over a year before I could put much weight on the left leg. I've since been to the emergency room twice for DVT tests as my mother died of a broken DVT that became a PE. Luckily, they were negative.

I hope you recover soon.