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View Full Version : new pill to replace coumadin?


kellie2
04-13-2006, 09:28 AM
Has anyone on here heard of a new pill that's coming out meant to take the place of coumadin? You supposedly don't have to have INR tested with it as it doesn't work like coumadin. This is the second time my doctor has mentioned it and I've already told him I'm not too anxious to try it. The first time he told me about it, he also said it's already been released once but they had to pull it back off the market because of problems. Don't know what problems those were, but I told him that once it's released, it would have to be out on the market for a few years with no reported problems before I would even consider going off coumadin. I keep seeing myself as a guinea pig and I'm not willing to take the chance of a stroke. Has anyone else heard about this 'new' pill or have any information to share? My doctor is an oncologist/hemotologist so he knows his 'stuff', and I agree that anything new for cancer should be embraced and tried without hesitation, but a blood disorder is different, and like my daughter says, 'If you've been using coumadin for this long (21 years) and have been perfectly fine with no problems, why would you want to switch to something else?' My thoughts exactly, but I haven't been able to find anyone else who has heard of this 'new' pill, and even though I'm open to discussion about something else that may be safer to take, it scares me. I've talked to other family members but quite honestly, they can't really understand where I'm coming from because they don't have the clotting disorder I do, so they can't feel what I'm feeling. It's easy to sit over there and say 'Well, just try it and see' when they're not the ones taking the risk. Everyone on here with a blood disorder knows what I'm talking about, so any thoughts at all on this would be greatly appreciated.

kellie2
04-19-2006, 01:07 PM
Well, I see no one else has heard of this replacement for coumadin...Am I correct is assuming that someone would have replied if they had? Can I at least ask everyone's opinion on this or what they would do if it was offered? Surely I can't be the only one who would be scared to try this.

lovethoscurls
04-19-2006, 04:14 PM
I take care of my grandmother who is on coumadin and has multiple health problems. My honest opinion. I wouldn't trust it. I don't at all think it would be worth the risk. I think she would agree.

MommieXThree
04-22-2006, 09:24 PM
I was recently prescribed Coumadin because I was diagnosed with DVT. They had me on Lovenox injections every 12 hours for a month, then they took me off the shots and gave me the Coumadin. After three weeks of adjusting the dosage they put me back on Lovenox because they cannot get the Coumadin "theraputic". I am curious to know what this "new pill" is because maybe it would work better for me. Another question I have is; are there any side effects to the Coumadin? I have not been in on it for very long, so the side effects I am feeling may not be due to the Coumadin. I break out into rashes with an itchy feeling that feels like it is under my skin. It's not pleasant. I also get headaches more frequently now. In your experience, do you think these side effects could be due to the Coumadin?

kris1182
04-22-2006, 10:22 PM
My PCP mentioned a pill to replace coumadin about 3 years ago. He didn't give a name, but just said it wasn't approved yet? I have an appt with my hemotologist in a few weeks. I'll have to bring this subject up to see what she has to say.

I recently am back on coumadin after a clot late last year. I did the lovenox shots for a few months first, and I am now back on the coumadin. My biggest issue right now with the coumadin is the hair loss-has anyone else experienced this while on coumadin?

kellie2
04-23-2006, 10:13 AM
Oh my, you both seem to have problems that I've never heard associated with Coumadin. I've never heard of it causing skin rashes and I've never ever heard of it causing hair to fall out. I mean, it's a blood thinner and has no connection to hair follicles, but I'm not a doctor. Did your doctors say these were side affects?

I've been on Coumadin since 1984 and I'm very fortunate that I've never had any problems with it, or any blood problems. I know many people can have trouble getting their INR regulated - it goes up and down from one day to the next - but I never have. I'm very thankful for that. I do feel better that someone else has heard of a 'new' replacement for Coumadin but I don't like the feeling of being a guinea pig to see if something will work. I told my husband that the chance of having a stroke is scary and not worth the risk, especially at my age (53). Strokes are a risk for everyone as they get older, and for me who already has a clotting disorder, the risk is even higher, so why would I want to stop taking something that has worked all these years with no problems for something new that most people in my shoes would be leary of? They had Vioxx on the market for how many years? and then they pull it last year because they found it causes heart attacks. My husband was on one of the cholesterol pills and it caused cataracs in both eyes, something not normally seen in a man in his 40's....and no one told him it was a side affect. The downside of being on Coumadin is that insurance companies won't touch you, which we found out a couple years ago when my husband was between jobs and we were paying for our own medical insurance. NOBODY would insure me, not one. They don't even offer it to you at a ridiculous price, they just don't offer it at all, they don't approve you. They would accept my husband but not me. Can you imagine not being able to find an insurance company who will insure you? My doctor says I fall into 'table 8', meaning I'm uninsurable and an immediate denial. The only company that will insure you is Blue Cross because they have to accept you, they can't turn anyone down, but they can charge you whatever they want, too. Fortunately my husband started his new job before the Blue Cross coverage took affect so we have no idea what it would have been every month to have me covered. Did that make me angry? Oh you betcha. My husband told one insurance company, 'SO, you would rather insure someone who isn't on this pill and is in and out of hospitals with lung clots and leg clots and possible heart attacks and God knows what else, which YOU guys have to pay for every time, than to cover someone who takes a pill to prevent all this?' Unbelievable, no? but they said they have a list of medications that all companies have, and people who are on any of these medications are an automatic denial, and one of those is Coumadin. So my husband is torn between me continuing something that works, and something new that may also work but has none of the stigma attached to it, and my daughter isn't for anything 'new' at all. And I'm scared to go off it, period.
Kris1182, can you remember to ask your doctor if she's heard anything else about this new pill she mentioned to you? Tell her that my doctor said it had already been put on the market but was then pulled shortly after because of problems people were having. He didn't know what the problems were, just that they had already tried it and pulled it back off again. Now, I may not be a doctor, but when something to prevent clots is tried but found to have 'problems', doesn't common sense tell you the 'problems' would be that it didn't prevent clots?
It would be interesting to get other people's opinion on this as I think when this 'new' pill does hit the market, it's going to affect alot of us here as soon as our doctors become aware of it, and I value the input I get on here from all of you a whole lot more than the opinion of a drug company.

kris1182
04-24-2006, 10:24 PM
I will definately ask my doctor about this other pill. However, I was just reading this article-I bet this is the pill our Doctor's were talking about. Looks like it's being taken off the market. Some pretty scary stuff!

http://www.exanta.com/

AuntNanc
04-25-2006, 01:03 AM
I have Anti-Thrombin 3 Deficiency, which is a deficiency of the clotting factor AT3. I would have to know a whole lot more about any new drug before agreeing to go off my Coumadin. There are so many unknown variables, considering the broad range of disorders Coumadin is prescribed for. Lovenox was supposed to be a great alternative if you needed to go off the Coumadin for surgery. I used it before my heart cath and still developed a blood clot. The accepted treatment when hospitalized with a DVT is IV Heparin therapy. But, in people with AT3 deficiency, Heparin has been found to further deplete the levels of AT3 in the blood. These are issues that are only discovered after years of trial and error, unfortuntely. So, nope, I won't risk something new as long as the Coumadin is working for me. I've been taking it for 35 years now and it's working just fine.

I don't remember all the side effects listed on the drug info sheets. But fatigue and hair loss are there, and I have them both. But, hey, bald beats dead! ;-) If you're experiencing rashes, though, you should probably check with your pharmacist for a list of adverse side effects just to make sure you're not allergic to it.

kellie2
04-27-2006, 04:59 PM
Thank-you Kris, I just now came on here to check replies and found yours. I did some research on this Exanta and yes, you are right, this is the one our doctors were talking about....I wasn't sure it was but upon further research, I found that yes, it is, it works the way my doctor said it would. I can't thank-you enough for sharing this, you have definitely put my mind at ease.

kris1182
04-27-2006, 10:32 PM
No problem Kellie! I guess this is why our dr's haven't mentioned it lately!

I was off coumadin for a year and a half when I got another clot. Most likely I'll be on it long-term. I'm glad to see a few others on this board who have been on coumadin for 20-30 years. Thinking that I will be on this drug for the rest of my life makes me a little nervous!

janet119
05-01-2006, 12:55 AM
my neurologist told me about a pill to replace coumadin as well. he told me this a year ago but i know the pill was pulled back. havent heard anything about it since then
janet

kellie2
05-05-2006, 11:01 AM
Well, fortunately it's been pulled and isn't going to be issued again. I'm not one for new anything until it's been on the market for quite some time and deemed safe. But who really knows. I mean, look at Vioxx, something that millions of people were on for years, including both my in-laws, and they pulled that because they found it was causing heart attacks. Of course, any other arthritis pills that work the same way have been shown to carry the same risk - why wouldn't they if they contain the same medication? - and those were attacked, too. My in-laws were not happy about stopping it because they hurt without it, but I'd rather see them hurt than dead. They take something that doesn't have the same ingredients as Vioxx but of course does't work as well either, but they're doing ok. My husband was on a cholesterol pill that caused him to develope cataracs in both eyes. They changed it but the damage is already done. He's now taken himself off of it completely, lost weight and started exercising and he's hoping when he gets it checked it will have gone down enough so he can stay off of it. I guess my point is, I don't want to raise my risk of a stroke or a heart attack because someone suddenly came out with a 'new' pill, only to find what these other people who took it have found, that it carries a risk that's not worth it. This new blood pill caused some liver damage, my coumadin has never done that and never will. The only problem with it is medical insurance, but even that's only an issue if you pay for it yourself, and my husband is covered at work. Is it discrimination? I guess, but if we fall under a high risk category, then I suppose they have the right to deny us coverage because of it. I have no idea what's going to happen when my husband retires and we'll be required to pay for a Blue Cross supplement to Medicare - I'm sure the cost will be outlandish because it's over $1000 a month for healthy retirees. But that's a few years down the road and we'll cross that bridge when we get to it. Right now I think I'm just thankful I can take something that keeps me alive.

kris1182
05-05-2006, 10:00 PM
I have to agree with you about trying a new drug unless it's been out for years!

As for the insurance part, I've switched jobs and did not have an issue with the insurance at all. Now, I have stayed with Blue Cross for both...so I'll admit I never really looked into it more. Although, there are laws out there that prohibit some discrimination. Just looking around (this subject got my attention), I see that at worst, they would make you go through a "waiting period" before they cover you. At least warfarin is a relatively cheap drug! Actually, I think everyone I know (and I'm 33) is on some medication or another!

whodidwhat
05-08-2006, 10:58 AM
There is a new pill soon to be released to replace coumadin. My hematologist has also suggested me trying it and I'm all for it. I've been on coumadin since I've been 24 and they STILL can't keep me regulated. My doses are forever changing and I still continue to clot.
If you are always in the safe range they want you to be, I'd just stay on coumadin. Why mess with something thats working. I'm curious to what clotting disorder you have. Could you let me know?

kris1182
05-08-2006, 03:52 PM
I have lupus anticoagulant. I was diagnosed when I was 25. I finally am regulated after a couple months of changing around my dosages. I have a hemotologist appt next week. I think I'll ask her about any new medications coming out. I would love to not have to do the monthly blood tests!

kellie2
05-09-2006, 11:21 PM
As for medical insurance, if you're covered at work it's a non-issue. I was talking about out-of-pocket - in other words, paying for your own medical insurance with your own money. My husband too has coverage for both of us through his employment, but a couple years ago he was in-between jobs and we looked into the cost of paying for our own medical insurance if we needed to, just to find out how much it would be - we got an education you wouldn't believe. They will NOT touch you if you're on coumadin. Period. Not for any amount. Trust me - been there, done that, if anyone is in doubt, try it. There is a list of medications they refer to, and unfortunately coumadin is on that list as an automatic denial as it's considered a high risk drug. After awhile, it almost got to be a challenge to see how many denials we could get - every single one (and there is no 'waiting' period for medications, that applies to pre-existing conditions and that's not what we're talking about here). The only insurance company that cannot turn you down is Blue Cross - they HAVE to cover you, but they can also charge you whatever they want, too. They may be required by law to accept anyone for coverage, but they can also charge you whatever they want for that coverage. Believe me, we went through more insurance companies than we knew existed, and they all - and I mean ALL - turned me down as soon as they saw I was on coumadin. Is it discrimination? I suppose it is, but they have the right to do what they want. That's why the government says Blue Cross MUST offer coverage to anyone who asks so that we do have someplace to go, but they do not regulate what Blue cross can charge you. It's like a high-risk driver - he can shop around to all these insurance companies, and once they see he's high risk, they turn him down. If he gets lucky enough to find someone to accept him, he'll pay a very high premium for that coverage.
The solution is, of course, to have medical insurance through employment, which we do. But to find coverage on your own? Automatic denial through all but Blue Cross. Upsetting? Yes. Discouraging? Yes. Did it make me angry? Yes. Angry enough to go off coumadin for some 'new' pill? Nope.

tomh
06-03-2006, 12:59 AM
My understanding is that Exanta has been released for tests in Europe, possible for treatments as well over there. Anitcoagulants are used for a variety of conditions. Exanta may eventually be cleared for some of them. From what I've heard, Exanta may never be cleared for mechanical hearts valves. No one would ever sign up for the study.

arlmon18
06-13-2006, 11:58 AM
My Mom has been taking coumadin for years, and she really hates the side effects (for her). She's had hair loss - I don't know if it's from the coumadin (her thyroid is fine), and she bruises very easily. Her skin has become very thin. Now, she has broken out into red blotches on her chest and arms. The dermotologist gave her cream, but it's not really helping. He said he could be from the sun, but she hasn't been in the sun since Aoril. I will go with her next time, because she doesn't even know what type of skin condition she has. I wonder if Lasix could be the problem. I can't find any info regarding coumadin and the sun. She is going to the coumadin clinic this week, and I will ask her to find out if there is a replacement pill - although I really don't think, at this stage of her life, she would trust a change. I would, if it were for myself.

life_is_good
07-14-2006, 11:47 AM
I just found out today that there is/was a study on Lovenox in pill form. Lovenox was always administered by needle, so pill form would be ideal. Since my pro-time is so erratic, this would be a terrific option. There would be no need to test every few weeks, as you have to with coumadin, nor would there be any vitamin K restrictions. Has anyone heard anything about this study?

lena101
04-05-2007, 02:19 PM
I just found out today that there is/was a study on Lovenox in pill form. Lovenox was always administered by needle, so pill form would be ideal. Since my pro-time is so erratic, this would be a terrific option. There would be no need to test every few weeks, as you have to with coumadin, nor would there be any vitamin K restrictions. Has anyone heard anything about this study?


i just found this list. i have been on coumadin/warfarin since december. my protimes continue to be all over the palce. i would be very interested in the lovenox in pill form.
has anyone heard anyting else about it.
thanks

lorriem
04-09-2007, 05:06 PM
My husband was just put on coumadin after he complained for over 6 weeks of sudden on set of shortness of breath. His pulmonary doc said it was his asthma but after six weeks had him get a ct angeogram and that showed many embolisiums in both his lungs. Hubby also in 2005 was diag with lung cancer and lost his upper right lobe but so far no more cancer. This event surprised us and they have ruled out DVT. They do not know what has caused this.They are having a heck of a time getting his inr level stable.It was 1.5 when he went home frome the hospital and then up to 3.5 then 2.4,2.1,1.9,2.0 and this am it was 1.6. I do not know how long it will take to even out and also what caused it.We will see our ONC tomorrow for another three month treatment and I will ask him some questions but I want to know what caused this. He hasn't flown in 6 mos and no injurys so what can it be?I read about the hair loss also but he has been there with the chemo and I also have had meds that said hair loss and it never happened. How do we arrange our life around coumidan and blood tests?And what else could have caused the embolisiums. any help .

 
 
 




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