smokey52
Posts:493
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| 01/10/2017 09:32 PM |
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The wife survived a saddle pulmonary embolism over New Year's. After a week in hospital with IV heparin and transition to oral warfarin, she came home on Friday. Her dose of warfarin is 5 mg daily. After results of a routine check on Monday, she got called in for a verification blood test this morning (Tuesday). Doctor called and said "get thee to the ER" where she had a plasma infusion. Her INR was 9.0. The doctor is aiming for 3.5. CK & others: What do your MDs suggest? Have you transitioned from warfarin to Eliquis or Xarelto? If so, how did it go? thanks, smokey |
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Dale
Posts:1767
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| 01/11/2017 06:55 AM |
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Coumadin the last 5 years, dosage varies between 4 and 5mg.
My doc told me that taking a multivitamin with Vitamin K helps regulate the INR; that I'd get a more stable INR if I had a consistent dose of K along with the warfarin. I'm pretty consistent at 1.9 - 2.3 He likes me closer to low end of that range.
I have never tried any of the new generation meds.
Of course you know that a ton of things interfere with warfarin-- antibiotics, aspirin, Advil, Tylenol, in addition to vitamin K |
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Cosmic Kid
Posts:4209
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| 01/11/2017 07:23 AM |
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Yikes....9.0?!? that is scary, smokey. Hopefully they get her dialed in quickly.
Funny you mention the next-gen of thinners. My doc has kept me off them primarily because there was no reversal agent. On Coumadin / warfarin, they can give you a $4it if Vitamin K to counter the rat poison.
Just recently they introduced a reversal agent for one of them (Eliquis?) and my hematologist said it was time to move me over...cool!! The next-gen thinners are very good at regulating your INR. Very consistent and no need for the constant monitoring, etc.
Went to pick up my scrip.....$295!!!! "Ummm...yeah. Fook that. Give me the rat poison instead, fanks." Got him to write me a scrip for a home monitoring unit so I will now be checking my INR on my own.
If your insurance will cover it, definitely recommend the next-gen thinners. If not, warfarin is dirt cheap but takes some diligence to get your INR dialed in and stable. As always, though, work closely with your doc and defer to them before some bozo on the Internet. 
Good luck...let us know how things progress. Did they establish a cause for the PE yet?
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| Just say "NO!" to WCP!!!!
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Cosmic Kid
Posts:4209
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| 01/11/2017 07:26 AM |
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Oh, forgot to add that my diary dose is 2mg and they try to keep my INR between 2 - 2.5.
2 years ago, it got up into the mid-5's and my piss looked like ice tea. |
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Dale
Posts:1767
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| 01/11/2017 08:22 AM |
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Same here... $3.00/ month for warfarin, 100x that for the other stuff. 'Fanks, no.
I'm interested in getting a home monitoring system as well. Such a hassle to go by the office and get tested, as a result I don't test as frequently as I should. My doc did say he read a report that people who test monthly don't do any better than those who test quarterly. Just the same I'd rather test at home more frequently. Particularly when I'm on some other meds for an infection or whatever.
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longslowdistance
Posts:2881
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| 01/11/2017 09:06 AM |
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FWIW, the Euros have been using the "newer agents" for chronic anti-coagulation for years with good results. Like in many other categories of government safety reg, they have a more rational, less lawsuit/fear of lawsuit driven medical testing and approval process. The newly signed FDA process revision legislation should improve things here over time.
And the Euros (and Canada) don't let big pharma dictate the price of meds; they negotiate. Here Big Pharma owns the politicians who have passed laws limiting medicare and ACA plans from negotiating drug prices. The companies charge whatever they want. One of the major failings of the ACA. I wonder if the repubs will have the guts to gut that provision as they redo Obamacare. It would be astonishing. |
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smokey52
Posts:493
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| 01/11/2017 10:25 AM |
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Thanks.
Eliquis does have a reversal agent now. Eliquis is also a Pfizer product. As a Wyeth/Pfizer retiree, my wife & I get Pfizer prescription meds at no cost, so that is not a factor.
She has another follow-up this afternoon. |
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Cosmic Kid
Posts:4209
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| 01/11/2017 01:36 PM |
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I'd definitely push for the Eliquis then....no-brainer, IMO.
Let us know how it goes....and wrap her in bubble wrap before her next appointment!! |
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| Just say "NO!" to WCP!!!!
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smokey52
Posts:493
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| 01/11/2017 05:29 PM |
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| The experience is weird. With the high INR and PT values, and the consequent risk of bleeding events, the wife has had several blood tests and IVs. None of these vein pricks have resulted in significant bleeding. She is now on daily blood-test monitoring. Frustrating, but at least just annoying. |
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smokey52
Posts:493
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| 01/12/2017 05:05 PM |
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| Down to INR 2.7. quite the relief. thanks again for all the good wishes. |
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Cosmic Kid
Posts:4209
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| 01/12/2017 08:15 PM |
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| Good news!!! What is the treatment plan now...warfarin or next-gen thinner? |
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| Just say "NO!" to WCP!!!!
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smokey52
Posts:493
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| 01/12/2017 08:48 PM |
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Thanks Cosmic. The plan is to get the warfarin therapy to a steady state for about three weeks, then transition to Eliquis. The doctor is waiting for the pulmonary embolism to diminish and for the DVTs in her leg to stabilize before changing over. I guess it would be easier to re-establish heparin IV if necessary.
wrt pricing: We discussed the options on a therapy basis before I mentioned the cost savings for us for Eliquis. This doctor tends to prescribe Xarelto. He finds that patients tend to be more compliant with one-a-day doses than two-a-day, although he likes the reversibility of Eliquis. In terms of efficacy, he has not found a significant difference. |
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Dale
Posts:1767
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| 01/12/2017 09:55 PM |
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| 2.7 ... good to hear. Hope the rest goes well. |
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Cosmic Kid
Posts:4209
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| 01/13/2017 11:16 PM |
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Sounds like a reasonable plan, smokey....and I gotta say I have enough problems remembering to take my rat poison once a day. The twice a day dosage of the Eliquis did have me a bit cautious.
Did they determine the cause of her DVT / PE's? |
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SideBySide
Posts:444
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| 01/16/2017 04:20 PM |
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| Glad to hear she is doing better, best wishes. |
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smokey52
Posts:493
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| 01/16/2017 07:26 PM |
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Cosmic,
She has an appointment tomorrow with her primary MD. The hematologist did not seem interested in finding root cause, but her primary (and the local sick-care MD) are extremely involved. A big factor may be immobility. Her MS has moved into secondary progressive, and walking is a challenge. There may be a drug/drug interaction involved with some of her supplements. We are looking at a consult in NYC. wrt once a day vs. BID, she has a routine for taking meds. One of her early MS drugs wrecked her thyroid, so she is on twice a day meds for that. Adding Eliquis to the routine would not be an issue.
SideBySide,
Thanks for the good wishes. She has a hand pedaled trike too. Not nearly as aero as yours.
All-
I find this site a welcome release. This is not an easy issue for me to talk about. I explain factual details to the kids (actually young adults - 35 and 33, and the daughter has a kid of her own), family, and friends, but I always try to keep a positive spin. I can't say how scared I am to be a widower. Thanks again for the good wishes.
smokey |
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longslowdistance
Posts:2881
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| 01/16/2017 09:14 PM |
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Wow.
Best wishes and good luck. |
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Cosmic Kid
Posts:4209
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| 01/17/2017 10:22 PM |
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Oh, jeez, I'm sorry but I had forgotten about her MS....well, certainly issues with mobility could be playing a role, but I am very surprised that the hematologist has not ordered a full panel of blood tests to check for other situations such as Factor V Leiden (my issue). Please make sure you discuss this with your primary doc....and I would suggest looking for another hematologist, as well.
glad we can provide some kind of outlet for you smokey....anything we can do to help, even if it is just to listen, we're here for you (or at least as many of us that may be left at this point!!). You may also want to find someone you can talk to professionally....you are carrying a lot on your shoulders, but you need to take care of yourself, too.
Keep the faith, brother.... |
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smokey52
Posts:493
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| 01/18/2017 09:42 AM |
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| Definitely looking for a different hematologist. Her primary recommended a specialist at Columbia-Presbytarian, and she is making an appointment. The current hematologist is the one who was on call at the hospital when she was first admitted. He is competent but not deep. |
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Nick A
Posts:625
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| 01/21/2017 11:23 AM |
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| Loved one in danger is always scary. My wife got bitten by a dog my son was dog sitting for. The bite wasn't bad at all...but the infection landed her inpatient with IV antibiotics. Take this with a grain of salt...but I spent five years as an oncology social worker. At least in a teaching hospital kind of setting, I think that "benign hem" is generally relegated to fellows as it's not as "interesting" as leukemia and lymphoma... |
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smokey52
Posts:493
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| 01/21/2017 08:14 PM |
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| definitely off Coumadin. Waiting for INR to drop to start Eliquis. Another blood test tomorrow. |
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Cosmic Kid
Posts:4209
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| 01/22/2017 09:48 AM |
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I think that makes sense....given Coumadin's nature to cause INR to fluctuate combined with your wife's other medications / health issues, being able to lock in her INR using a next-gen thinner is smart, IMO. Take away the variability...
Good luck with the tests. |
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79pmooney
Posts:3180
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| 01/22/2017 10:30 PM |
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Guys, I met a woman who qualifies as one of us at my ride espresso stop, She is not riding now as she is on thinner (Eliquis) as a result of a crash last June. A warrior. By that, I mean that even serious crashes don't stop her. TBI, cracked hip. The loop she rode around here is ~40 miles and 3000'. She is itching to get riding again.
I invited her onboard the forum, but I wonder if a newcomer actually can get on here with the state of the website. We might need Keith's friend's help. I don't have Keith's E-mail. Her name is TeriAnn. If she comes on (and we can get her on), welcome her.
Ben |
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Dale
Posts:1767
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| 01/23/2017 09:02 AM |
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Ben, I forgot my password when I updated my hard drive and tried to sign up under a new persona but couldn't post anything so I doubt we can get new members posting  |
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smokey52
Posts:493
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| 01/24/2017 08:25 PM |
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| still unsettled. horrible allergic reaction to Eliquis; switch to Xarelto, another allergic reaction. thank goodness for Benadryl to keep the hives at bay. Now back to warfarin. It looks like she will face the vampires again. Oh well, so much better than a funeral. |
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Dale
Posts:1767
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| 01/25/2017 08:09 AM |
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Oh man... so sorry to hear this has been such a roller coaster for you guys. Hope she gets that stabilized.
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Cosmic Kid
Posts:4209
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| 01/25/2017 09:17 AM |
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Oh man....sorry to hear that, smokey.
Talk to your docs about getting a Coagucheck machine that you guys can use at home. Given the variability in her INR, they may not sign off on the unit just yet (or they may think it is a great idea since you can easily check and report daily, if they want).
I just got my machine and all my readings are sent automatically through my phone. My life just got a whole lot simpler..... |
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| Just say "NO!" to WCP!!!!
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Nick A
Posts:625
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| 01/25/2017 10:20 AM |
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Yeah, Smokey, sorry to hear about all of that. I've always been relatively healthy, but my wife seems to have the occasional scare. I mentioned the infected dog bite. She also had a detached retina once, a basal cell removed... It's stressful when your loved one is in crisis.
Nick |
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mondonico
Posts:158
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| 01/28/2017 06:41 PM |
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| Late again. Was also taking coumadin for Afib. Blood went to an 8.9 inr also. Got a call from an oncall Dr., had gone to urgent care ealier that day for blood tests etc., at 2AM telling me to get to IR ASAP. I was bleeding like a stuck pig and could not stop. If I and I also assume your wife. had an even minor injury we would not be here. Was put on a Vit.K drip for a day and sent home. Got off coumadin that week and went to xeralto. Glad your wife is trying something else. My cost went from 3 bucks a month to 50 but more than worth it. However I am now off all blood thinners so can't comment on how long i would love paying another 50 a month or more. |
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smokey52
Posts:493
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| 01/29/2017 08:29 PM |
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Thanks again all. The love of my life is stable and in therapeutic range for warfarin. Until she established the therapeutic range, she did twice daily Lovenox injections. Better than being in hospital with IV heparin, but not really a lot of fun. The allergic reaction may have been coincidental. Stress is a huge factor in MS, and sometimes hives have an autoimmune trigger. We're hoping she can keep a steady-state, and maybe the visit to NYC with the expert will provide clues to a better path forward.
.
Other news: I registered for a sprint triathlon in July in Albany. She's thrilled I have something to work towards (besides the Cape Cod Getaway MS bike ride at the end of June). I did this tri in 2012. I figure if I do it every 5 years for the next 35, I'll live to 110. |
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Gonzo Cyclist
Posts:568
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| 01/30/2017 11:03 AM |
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reading about this kind of made my heart kind of flutter, bad stuff
out of all the heart drugs I was on, this was by far the worst, glad your wife was OK. 9.0 is crazy, as I recall my sweet spot was 2.5 or so, that stuff is tricky
Pmooney, you gotta live, I used to get lectured all the time about my riding on this stuff, but I was willing to take the risk to keep my sanity, the only real threat was when I took a shot to the head on an MTB ride, had to make sure I was not bleeding internally, I checked out OK. You just need to be a bit cautios
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