July 19th
2009
12:50 PM
After reading these posts I am more confused than before, because my experience is so far very different. I was diagnosed with DVT about two weeks ago and now take Coumadin daily; the Lovenox injections have been discontinued. The reason I'm so confused is I now feel the best I have in 5 (five) years.
Before being placed on the anti-coagulants I had memory and concentration issues that were progressively getting worse and greatly affecting my job, and had daily headaches. I had joint pain that made it difficult to get up after sitting for awhile; they felt constantly inflamed. I felt fatigued all the time and my muscles hurt like I had really pushed them; I just didn't have any strength, and had muscle cramps. I was constantly yawning and found my jaws hurt from clinching my teeth, subconsciously trying not to yawn. I was extremely sensitive to physical touch, even hugs hurt. I also felt extremely depressed and cried almost daily. My lips and left cheek tingled, as well as other parts of my body. Plus I would get the feeling of sudden pressure in my head (different from a headache) like it was going to pop off, and I my eyes didn't seem to track what I looking at and had difficulty in remembering or comprehending what I just read.
About 6 (six) days after starting treatment it completely changed and these symptoms are essentially gone. I have talked with my doctor and pharmacist and they are baffled. I am concerned this change, while welcomed, may indicate an underlying condition that is not yet diagnosed. Has anyone ever heard of such an impact from starting Coumadin treatment?
-- By janiannd | Reply | (4) replies | Private Message me
July 8th
2009
4:43 PM
Hi, I am a 47 year old woman and started Warfarin and Lovenox June 29th as a result of blood clots in my left leg from knee surgery. I was able to go off the Lovenox July 4th (Yay!) because my INR levels were above 2. I thought the Lovenox was the cause of the nausea I experienced, but apparently that is not the case. I keep telling the clinicians at the Anticoagulant Clinic about the nausea and their response is that they haven't heard of it as a side effect. Thank you all for posting to this website, there is some comfort in learning you are not alone with these strange side effects. I also experience dizziness and have difficulty finding words. I think I will switch from Warfarin to Coumadin to see if the side effects are less, though many of you have written about weight gain ~ yikes. For those of you bruising with Lovenox I was told if the needle is dry when it goes in there is much less bruising. And to everyone my thoughts and prayers are with you. Oh yeah, I also have nerve pain in the bottom of my left foot, the compression hose do help website is ******
-- By goawayclots | Reply | Private Message me
June 19th
2009
3:18 AM
Doctors really kind of hit and miss w/ all these agenda of telling patients that coumadin related symptoms are not at all what it seems..telling patients" it is all it your head"..what it seems and I know that doctors are 'tuned in" to tell patients "what they think they believe or read in textbooks and not listening to the real stories of these patients who are on these meds..they are therapeutic in a way to prevent blood clots in some conditions but in real situations those symptoms created by these meds are purely debilitating to some and having not to live life where discomfort won't hinder one from just living the normal life...free from all these adverse reactions,which are so crippling....I have made a decision to talk to my husband's cardiologist to have him stop taking this so called "rat poison" or surreal "human poison"...he was diagnosed w/ afib and had cardiac ablation..hubby's taking coumadin for about 8 months now-preventively...
but these symptoms had changed him into a very depressed individual..after reading all these tonight..I will take charge and will take control of our lives again and hopefully just live to be healthy again...thanx for all of you that posted these info.......
May 4th
2009
4:23 AM
I'm 21 years old and I had a PE December 2008 (a week after my birthday) and spent the Christmas holiday in the hospital. They don't know what caused it. I started out doing lovenox shots (which was horrible) and then switched to Warfarin. I have not been able to stabilize my INR and I've had to go to get it checked at least every other week for 5 months. It's so draining. At first I did everything by the book as far as eating right, not drinking alcohol, not shaving my legs but honestly I'm getting fed up. I'm tired of having to restrict my diet so much and be tired and depressed ALL the time. I started shaving with a razor again a few months ago bc the electric one does nothing. I also go out to the bars with my friends a lot more but it's so hard to be a new 21 year old in a college town. I want to be like all my friends and go out and have fun without having to think about the consequences.
Supposedly, I'm finding out on June 17 whether or not I'll be on warfarin for life. Sometimes I think that if that is what the doctor says, I will tell him no! I just don't think I can do this forever. It doesn't get easier and none of my friends understand. They don't know how bad I wanna cry every time they say "At least you are alive." Give me a break...
April 21th
2009
4:12 PM
Im 23 years old. One of the youngest people that is on coumadin I got sick when I was 22. I developed blood clots on my liver and stomach. Due to blood deficiency. I was told by the doctor it was inherited by one of my parents. My side affects are very fatigue, tired for no reason, skin blotches, slow memory, I get tired after 10 minutes of running like Im ready to collapse. Im always dizzy. =( I feel very fragile. I do get depressed sometimes because I feel like im very young at my age for this to happen. I found out I have to be on coumadin for the rest of my life. But we all move on....
E-mail me ******
Hopefully someone can share there idea's or another source of help.
-- By markdelosreyes | Reply | (2) replies | Private Message me
December 7th
2008
11:27 PM
I am a 49 year old male. I had my aortic valve and a part of my aorta replaced 5-1/2 weeks ago. The valve had a congenital defect and it was replaced with an artificial valve. I was able to do aerobic exercise and jog right up until my surgery.
The main problem that I have been experiencing has been numbness and pain in my arms and upper back. This has been present for the last 4 weeks. My right arm has been the worst. Most of my right arm is numb. Muscle strength has dropped in my right arm. Also for the last two weeks, part of my tricep muscle in my right arm does not "fire". I cannot move my arm in some directions. I was referred to a neurologist and he indicated that there is nerve damage. I will be having an EMG this coming week.
I am not taking a lot of medications. I take 100 mg/day of Metoprolo which I have been taking for the last two years. I am taking 5 mg of Coumadin, and I take some fish oil. I also took Amiodarone for ten days after surgery and then discontinued it.
Most of my muscle pain symptoms started 1-1/2 to 2 weeks after surgery (after starting Warfarin), and they have progressively gotten worse. Some symptoms can come and go. Symptoms include:
-Sharp pains in my arms, back, and legs
-Left and right arm aches, sharp pains in forearms when reaching
-Numbness in my right upper arm, left and right forearms, inside of my left leg, fingertips of the right hand, left thumb
-Loss of strength in my right arm. Tricep muscle does not fire (3-1/2 weeks after surgery)
-Skin is sensitive and feels uncomfortable on my arms, back, chest, and stomach
I realize that unexplained aches and pains are probably the norm after a major surgery. The numbness and pain in my arms seems to be out of the ordinary and chronic. The surgical doctors have not been able to offer any explanation, they referred me to the neurologist. Since the surgery went well, I feel that they are pretty much done with me. I feel that I am on my own.
I did try switching from Warfarin to Coumadin to see if that would make any difference. That was about 3 weeks ago and it did not seem to make any difference.
The surgical doctors do not think that the Coumadin could be causing my issues. I have read about rare, but serious Coumadin side effects that include muscle and joint pain, numbness. At this point, I am very concerned that I could lose more use of my right arm. I will be contacting my family doctor this week for advice also.
September 29th
2008
10:29 AM
I'm 39 and have been on Coumadin for about a month. Was diagnosed with DVT in right calf after taking Yaz birth control for only about 4-5 months (no other pre-conditions - I'm a non-smoker, fairly active, not overweight, no recent airplane trips or long car rides.) I was on Yaz to treat severe problems with my period which has been the case since I was a teenager, but I was tired of having to call in sick to work every month, and had hoped Yaz would eliminate that problem. I had been on other BCPs when I was in my 20's, and never had any symptoms of clotting, so didn't think that it would be all that risky to try again, despite me being slightly older than the typical woman on BCP. Obviously, I am not taking Yaz anymore, and will not be able to take any other hormonal therapies for the rest of my life. But I guess that's minor compared to the risk of developing PE from an undiagnosed blood clot.
Anyway, I've been noticing I've been getting sudden, severe headaches since starting the Coumadin. I have a history of migraines but I usually only get one or two per year at most. Now I've had what feels a lot like a migraine twice in a matter of a couple weeks. My husband has also commented that I've been irritable and acting "spacy".
My INR has also been all over the place. They've been alternating me between 5 mg and 7.5 mg per day. For the first few weeks I was right where they wanted me - between 2 and 3, but then last Friday my results were 4.6!! Way too high. I go back this afternoon to see if anything's changed over the weekend, after skipping a dose and then doing 5 mg Sat. and Sun. I do hope they can find the right balance and don't have to keep tinkering with the dosage. I'm wondering if that's what's contributing to the headaches. Maybe if they can stabilize how much I'm taking from day to day, my body will adjust.
I wonder if anyone "official" is tracking the number of DVT/PE patients that can trace their onset of symptoms to Yaz. My sense is that this is a much more serious and prevalent side effect than their marketing dept. would like to admit.....
-- By sallyjane | Reply | (8) replies | Private Message me
August 13th
2008
1:16 PM
I stumbled onto this site while trying to find a reason for these headaches I get sometimes for no" apparent" reason. Imagine my surprise to find your testimonies about your lives on warfarin sodium.At 38, I had surgery to repair a congenital defect of the aortic valve and had to have a hema-shield graph to repair an aneurysm of the aorta. That was in Oct.2002. Warfarin has been a part of my life since then. I was also put on anti-depressants because my family Dr. thought I was depressed since I repeatedly complained of not feeling well.(I took myself off the anti-depressants a couple of years ago.) Extreme fatigue , serious memory issues, thinning hair,dizzy spells and numerous other ailments continue to plague me.Add to that a large weight gain ...and, well, you get the picture. If anyone knows of an alternative to taking this "poison", PLEASE, PLEASE let me know. I just WANT MY LIFE BACK!!! I actually cried after reading this blog. As I explained to my husband, I suppose it was from the sheer relief of knowing I was not going insane!!!
-- By ndg | Reply | (6) replies | Private Message me
June 23th
2008
2:04 PM
I'm 46, female.. developed blood clots on my lungs for apparently no reason, found them when going to ER and complaining of bad headache, nausea and left shoulder and back pain. I haven't had a recent surgery, nor was on birth control.
I'm dealing with anxiety, depression, unusual headache, horrible back and upper shoulder pain, itching of head, hair falling out during shampooing, , tightness in chest, trouble swallowing, really bad pain in hips, legs and feel like feet swell. I don't sleep well, even on Ambien.. doesn't keep me asleep. I awake in the mornings around 4:30 with diarrhea, nausea, headache and feel awful. Never get a good nights sleep. My hips hurt as well as dealing with parathesias down right arm and into hand.. feels like needles sticking in my hand. Most days I feel wiped out in the afternoon.. as I try and drag myself out of bed to get some excersise.
Does anyone deal with parathesia's down their arms or hands.. what feels like nerve pain?
Has anyone ever tried Aggrenox, also known as Dipyridamole instead?
Or actually tried the real Coumadin, instead of the generic Warfarin?
Has any other woman out there been told not to use a tampon when on her cycle, as this will cause more menstrual bleeding?
I'm so tired of Dr.'s not having personal experience of their own with this drug.. and telling the patient that they are crazy and need to be on anxiety meds or anti-depressants. I just found out that Warfarin is the main ingredient in RAT POISON..
Has anyone EVER gone the totally nutrition route, juiced and gone radical, telling their Dr.'s that they were getting off of all meds?
Does anyone suffer from feeling like their ears are full, or hearing loss?
I'm so tired of feeling afraid.. and tossed around by Dr.'s who really don't want to do the research, nor listen to their patients.
I'd love to hear from anyone who has some insight..on any or all of the questions..
-- By lisaspillowtree | Reply | (3) replies | Private Message me
February 3th
2008
5:16 PM
I have been on Warfarin since Sept 2004 when I had multiple blood clots in both lungs. Since then I have had two more PE's (one with a therapeutic INR) and a blood clot in my left arm (INR was also therapeutic). Genetic tests show nothing.
Since starting Warfarin I have had
- dizziness issues,
- eternal extreme fatigue
- hair loss
- short term memory and cognitive issues,
- joint pain and
- head aches all the time. I think the headaches are the worse since I can't take any NSAID's for them.
I have lost weight and push myself to exercise because it is supposed to make you feel better, right? Well not yet. I keep waiting.
I have not been able to return to work and worry about the long term implications of this.
Many times I have wondered about my sanity and if I was imagining all of this, so finding this forum at least lets me know that there is a possibility that it is not all in my mind.
I have been seeing a psychiatrist to help me work through the almost dying 3 times thing, but it is hard to accept since no one knows why I throw the clots. My INR is not stable in spite of close monitoring of Vit K and other drugs, and my INR must be taken twice a week.
-- By fiona | Reply | (6) replies | Private Message me
January 15th
2008
8:22 PM
The hair loss is the worse thing. I have also noticed a change in my skin in additional to extremely soft toe nails. At this time I am off Warfarin - (developed mysterious blood clots) so was recommended to take it for six months. The hair loss occurred after 3 months of treatment. However, I have a friend who has taken it for years with no side effects. As long as I stayed the course with my dosage (10mg) my INR was on mark. Not sure what to expect now that I am off of it but I will say I am extremely paranoid about every feeling I have in my legs.
-- By jjl13 | Reply | Private Message me
November 23th
2007
11:45 AM
Had a PE in both lungs 10.07 on warfarin 5mg a day, very sore ,aching joints, tried, HOT FLASHES day and night , just tried hard to find excitement. I'm 46yrs was very active, had lots of engery. Can't drink alchol. Feeling very old. Carpal tunnel worse in elbows feels likes the needal goes right threw the bone.
-- By whathappen07 | Reply | (1) replies | Private Message me
November 22th
2007
1:09 PM
Headache, a slowly seeping oily rectal discharge, cooling sensations in my head and chest, anyone else experience this? It is frustrating and I don't know what to do about it. I am 35 years old and had some blood clots after delivering my baby 3 months ago.
-- By jcml | Reply | (1) replies | Private Message me
October 26th
2007
10:07 AM
i have been on warfarin for 3 weeks now. i have blood clots in my left arm, it swelled up 3 weeks ago, i find i am gettin so tired,and the left hand side of my body is constantly itching, spots on my chest and back,i didnt have this before,is this happening to anybody else on warfarin?
-- By chell99 | Reply | Private Message me
October 8th
2007
4:08 PM
After sinus surgery March of 07, I developed a large superficial blood clot in my left thigh. The doctor started my on 1 Lovenox shot and 5 mg of Warfarin a day. After 4 days, I felt a pressure and heaviness in my chest, and was diagnosed with bilateral pulmonary embolisms. Was in the hospital for 3 days and Lovenox was increased to 2 times a day. After being discharged, it took me nearly 2 months to feel normal again, but I still had to remain on 5 mg of Warfaring for 4 more months. Everything was fine until mid August when I missed taking the Warfarin for 6 days. Once I started taking it again, I started feeling terrible......pressure and squeezing feeling in my chest, anxiety attacks, dizziness, feeling hungry, diarrhea and nausea at times. One evening I went to the ER because I thought I was having a heart attack. All the tests showed I was not having a heart attack, and the D-dimer test showed I was not having blood clots. Even had a cardiac CT scan that was completely normal. It is time for me to get off the Warfarin now, but my doctor doesn't want to take me off it until these other symptoms go away. The doctor now has me taking Lexapro (for anxiety) and Prevacid (for acid reflux), and I am going to see a Gastroenterologist to see if I have acid reflux. I don't know if Warfarin is the cause of my problems, but until all this happened, I was a healthy 59 year old female. I just want to feel normal again!
-- By mary47 | Reply | Private Message me
October 6th
2007
5:55 AM
developed a dvt after a flight in june. very fit person running several miles a day. now in oct my dvt has not gone away and im developing more clots despite being on 7.5mg of warfarin a day. i have been told that i have to take it indefinately. no side effects to start with but did have blurring of vision recently that was investigated but nothing found. now my leg is itchy and im developing blood blisters on my hand for no reason. more worried about these blisters than anything. has anyone had anything like this?
-- By nessie | Reply | (2) replies | Private Message me
August 16th
2007
11:45 AM
I've been on Warfarin since Feb/04. I had 2 blood clots form in my leg and traveled in my lung and was dignosed with APS. At first I was on 12mg a day for about a year, now I am regulated at 10mg a day. For the last 2 months my INR count has been high (blood too thin) and was on 5 mg for 2 days in July/07 and then back to 10mg. This month Aug/07 my dr took me off my meds for 2 days, then back on reg 10mg. I will go back and check my INR in a few weeks.
I haven't experienced hair loss, but I have experienced migraines, weight gain (a lot!), blurred vision, black out with vision, and slight memory loss. And I am only 40 yrs old. Just wondering if you or anyone else has experienced any of these side effects.
July 3th
2007
8:03 PM
I am a 47 year old female. I had superficial blood clots in my left leg in Dec 05 and Nov 06. Developed a DVT in left leg and a superficial clot in right leg in June 07. Now taking 9 mg of warfarin (coumadin) a day. Suffering from extreme fatigue, heavy periods and I just discovered the hard way that warfarin makes you sensitive to the sun (got a severe sunburn on my face, forearms, hands and the top of my head, all places that I do not normally burn). Called the pharmacist and she said sun sensitivity is not a side effect. Went to several websites before I finally it upon one that did say that sun sensitivity is a side effect. My doctor did not tell me this and it is not a warning on the prescription label. Please be careful in the sun. Also, if you are a cranberry lover, I found several websites that said no cranberries in any form, juice, dried, herbal supplements, etc.
-- By mimosa | Reply | Private Message me
June 5th
2007
9:24 AM
I've been on Warfarin since June, 2004 after having a Pulmonary Embolism. At first no side effects. It took 2 years to regulate INR. I take 6mg per day. In the last year though, severe hair loss, bleeding in my lower legs (skin) when my legs swell. I am not able to store iron according to dermatologist that I saw for hair loss. I've just been diagnosed with APS, anti-phospholipid syndrome.
-- By teachermom1984 | Reply | (1) replies | Private Message me
May 11th
2007
12:48 PM
My second run in with a blood clot resulted in passing out on my way to pick up my 8 yr old daughter and being rushed to the ER because of a PE (near death), I'm thankful to be alive however (no reason for PE and being on coumadin for the rest of my life) I feel so tired now, I don't want to go to work, I can't concentrate, I suffer from dizzy spells, I'm always hungry (weight gain), nausea sometimes. before passing out I was working out, doing Taebo, the balance ball thing, walking. Now I feel like I'm and old woman. I'm 32 yrs old and taking #5 coumadin and I feel so bad the majority of the time and yes the doctors say "it's shouldn't be the coumadin" but I think it is my whole world has changed and I'm just trying to get back to being the fun, outgoing, active me. I miss myself so much, its like I'm depressed. I MISS MYSELF.
-- By lisha | Reply | (3) replies | Private Message me
May 1th
2007
4:29 PM
I have been on warfarin for about two weeks as blood clots were found in my lung. I would like to hear from others who have developed rash ( non itching) on arms and now legs. My doctor does not seem to think it is linked to the medication, but really there is no other explaination.
-- By msf284 | Reply | (2) replies | Private Message me
January 9th
2007
1:02 PM
I just started taking Warfarin on December 11, 2006 due to blood clots from surgery. My protime numbers won't go over 2.0, so I'm taking 12 mg and will probably start Lovenox injections. All my life I have rejected taking pharmaceuticals of any kind, and now this. I've told my doctor to get me off these meds asap, but now I have to see a hemotologist. If he says warfarin for life, I'll tell him no thank you. I will not live the rest of my life poisoned. As for side effects, the only thing I've noticed is a fitful night's sleep. I really haven't been that tired. I do get achy, but figure that's from physical therapy from surgery.
-- By mlastovica | Reply | (1) replies | Private Message me
October 22th
2006
10:32 AM
Thank God I'm not the only one! I was actually relieved when I found this site. I was an active 60 yr. old female until hit with blood clots in lt. leg that went to lungs. I've been on Warifin for almost four months these are my side effects: extreme fatigue, back and leg pain, over-all weakness,decrease in flexability of limbs, dizziness, vision changes even from day to day, memory loss( I've always been known for my great memory). I did mention these to my hemotologist last month and he sent me to ER. Cat scans of head, chest and abdomen all were normal. Every doctor I have seen says Warifin is not to blame but all this has developed since I began taking it.
-- By beansisme | Reply | Private Message me
October 20th
2009
7:03 AM
I'm a 70 year old male, never had health issues but 9/30/09 had blood clots in my lungs that nearly finished me had not I had on hand DMSO which my wife applied liberally to my chest while I writhed on the floor gasping for air. By the time the ambulance got me to the hospital all symptoms gone, never returned. Quit warfarin after a week. Feeling fine. Check out the research of Stanley Jacobs, MD on DMSO and keep it handy. It does dissolve clots without side affects.
-- By webronson | Reply | Private Message me