Just started taking Coumadin – experiencing problems?

[jen06]

My dad who has RAEB, recently suffered with blood clots in the lungs and was put onto the drug Coumadin to prevent this happening again. He has been taking Vidaza for 8 months and has not been too bad although very tired most of the time. Ever since he has been on the Coumadin he has been feeling really bad, cannot sleep, fidgety etc. and just all over the place. However this week things have taken a turn for the worse and he has had a few episodes where he has come over all dizzy, shaky and disorientated, with sweat pouring off him. He has had to sit down for a while to collect himself before carrying on.
I am sure this is down to the Coumadin and wonder if he should be taking this in his condition. I know that his platelets are pretty low at the moment (around 60) and although transfusion free at present, has been told he will probably be needing them in the near future. Has anyone else had any experience of this at all?

[ButchL]

Jen,

This link will show you the possible side effects. I hope it helps and good luck.

http://www.drugs.com/MTM/warfarin.html

[patti]

Jen,

If that were my dad I would be calling the doc ASAP. Either request a lower dose or get him off of it completely. I realize he had blood clots in his lungs so they are a continued concern. What I do know about coumadin is that you have to very carefully watch the dosing – especially in the beginning. It sounds like his dosing is too high. We had some of the same issues with my dad when he started taking it.

His platelets are pretty low to be on coumadin. I insert my prejudice here that I don’t think anyone should be on that stuff. That said, there are other alternatives to coumadin. If your dad needs his blood thinned he can eat/take garlic and onions, etc. BUT not at the same time as coumadin! If he’s eating these things in any quantity while he’s on the coumadin that is also going to cause problems.

HTH

patti

[bety]

Dear Jen,

I am concerned about the dizzy spells, sweats, disorientation. These may not even be related to the coumadin or he may be bleeding from too high a dose. His bleeding time should be checked as well as his blood pressure and pulse rate. A drop in b/p could be causing some of his symptoms. He may be losing electrolytes due to the perspiration. It is important that he be checked by his doctor or an internist to diagnose the problems. All the best. bety

[Bkwits]

Jen,
If you haven’t already done so, I urge you to call your dad’s doctor or take him to an emergency clinic or hospital. I don’t know if his symptoms are from taking Coumadin, but I do know one has to be very carefully monitored while on the drug. Like Patti, I am surprised that he is on coumadin with his blood and platelet issues. My mom is on coumadin because of blood clots and has to have an rbc transfusion occasionally (she does not have MDS). She is closely monitored. My husband had similar symptoms, the fidgeting, disorentation, shaky, weak. The next day after those symptoms were noticeable, he was admitted to the hospital with kidney failure. I don’t mean to upset you, but you are worried and asking for advice. My best to you. Many prayers for your dad.
Barb

[Jack_dup1]

I am surprised he is getting Coumadin under these circumstances, It is a good drug for some things, it certainly helped my mother after her heart attack. None of the drugs we take are “one size fits all”, you can’t discount them if they are precribed improperly. For my Mother, her dosage was adjusted every couple week after testing her blood.
Jack

[patti]

Jen,

PLEASE promise you will call your dad’s doc! If he brushes you off – push him. Take your dad to ER or something. But please don’t let this go. You will make all of us feel better. So if for no other reason (like you need any reason other then your papa!) you can appease all of us worry warts!

Patti

[eve]

jen

my dad’s doctor wouldn’t let him take even an aspirin because of his low platelets

coumadin is such a very strong blood thinner i can’t imagine that it would be safe for a person with low platelets to take

like the others said EMERGENCY ROOM IMMEDIATELY

eve

[jen06]

Many thanks for all your replies, it is really appreciated and to be honest I did not realise it could be so serious. My dad never tells the docs how ill he is feeling and puts on a brave act in front of them most of them time. I think his main worry is that they will take him off the Vidaza and then he will not have any other real options. They have already said he is not a suitable candidate for a BMT because of his age (66) and his previous health history. We live in the UK and I dont think there are so many treatments available. He is actually on a clinical trial at Kings College in London for the Vidaza, so it is all relatively new here. When he had the blood clots he was treated at our local hospital (not Kings) and it was them who put him on the Coumadin, therefore I wonder if there is a lack of communication between the two hospitals. My dad is under Dr. Mufti at Kings, who is very high up, but I do not think my dad sees him on a regular basis. My dad is at Kings at the mo. (goes in daily as an outpatient) and is due home on Tuesday. I think I will phone the hospital today and hopefully they can get him all checked out whilst he is up there.
It is very hard though, as my dad would not be happy if he knew I was doing this, and I am a little worried about doing more harm than good! I will keep you all posted and thanks again for your help.

[eve]

jen

don’t be afraid of doing more harm than good –

if your dad doesn’t tell the doctors the whole story he is going to get into a lot of trouble healthwise – the right hand has to know what the left hand is doing – your dad must tell the doctors who are treating him for the mds all the medications he is taking AND the truth about how he is feeling – decision to stay on the vidaza is based on many things and the doctors need the whole picture in order to take the proper course of action

good luck
eve

[Jack_dup1]

Jen,
You can’t depend on these Doc. knowing everything, evne though most think they do. Example, I was referred to a pain clinic, I filled out a complete medical history, even supplied a spreadsheet of my counts. The Doc. said that he could treat my problem by inserting a surgical device. I asked if my platelet count would be a problem, he said “oh, you have low platelets, why? I explained I have CMML, he said “you have CML” no I have CMML ” what is the other M for”? At that point, I knew it was time to leave.
Be a pest, ask questions, be assertive.
Coumidin my be a good med, for blood clots, if that is all they are aware of.
My family Doctor once said of specialists, if you are a hammer, the whole world is a nail.

Jack’s 2 cents worth, and not worth much more than that.

[maueenh]

Jen,

My dad is also on coumadin and Vidaza. I have questioned this numerous times and the response by three different doctors has been that it is ok but needs to be monitored. In the past, when his platelet counts have fallen below 50 they have temporarily taken him off coumadin. I should also mention that my father is on a low dose of coumadin.

Dad has never had any of the symptons that you mentioned and I agree with the others that your father should be checked. You must be proactive with this disease.

Maureen

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