Hughes Syndrome: Can long-term warfarin treatment be successful?

[StuartD]

I have Hughes Syndrome and am shortly going to start taking Warfarin indefinitely. There are so many negative stories and worrying side effects; has anyone taken warfarin successfully with little or no issues over several years?

[jessielou]

Hi Stuart,

Welcome and hope you are feeling well.

I`ve been taking warfarin for about 18 months which I know is probably not as long term as your looking for. There are new drugs in the pipeline but from what I understand it could be up to 5 yrs before thoroughly tested and approved, so for now it`s warfarin I can`t say i had side effects, although I bruise easily, and obviously regular INR checks are vital. Having had various clotting incidents over the years would sooner be on warfarin than not.

Sure someone will be along with details of London Support Groups, I`m sure there are some.

Take care hugs Jessielou xxx

[Hidden]

Hi Stuart

I took Warfarin for many years with very few difficulties but you have to be prepared to take a real interest in your INR and any tell tale signs that you body may give you... I first started taking it when I was 19 and at university, I gave up drinking but continued playing sports such as football, horse riding and snowboarding... in the end I changed to Clexane but only after 10 years of taking Warfarin. There will be many others who have a more positive experience than me but it certainly is not all doom and gloom! I used a Coaguchek machine to monitor my INR and found that extremely useful.

Good luck - you'll be fine.

Tx

[Gadgets]

Hi Stewart

I have been taking warfarin for 3 1/2 years now and I self monitor my INR at home with a Coagucheck that I bought (I get the test strips on prescription and have a monthly INR at my GP clinic just to be sure we are singing from the same hyme sheet.

Since being on warfarin I have got my life back and so much so that I started my own business 3 years ago. I work full time.

I can not imagine not having warfarin now! Oh to go back to those dark days dosnt even bear thinking about!. I couldnt speak properly, spell, read, walk straight, fatigue was dreadful, memory etc etc

Good luck.

Garry

[hazel595]

Hi Stewart,

I have been taling warfarin since January 2002 and started self testing my INR with a Roche Coagucheck monitor in 2003. I had a few problems in the first year but it was mainly due to my anticoagulation clinic erring on the side of caution and keeping my INR at the lowest point in my range.

I did suffer a stroke whilst on warfarin and in hospital due to my INR being allowed to drop well below my therapeutic range as it was deemed that an INR of 4.0 was too high and it was allowed to drop to below 2.0. I eventually took over full management of my INR in 2006 which means I test an dose myself and I haven't had any problems since then.

However, as Tasha mentions in her post......you do have to take a real interest in your how your body works and how your INR can be effected by different things. I found it useful a use a graph and keep a diary of foods I ate making a note and commenting about how much water I'd drank (being even slightly dehydrated can cause your INR to drop too low), if I'd had a change in medication, or a flare up.......testing my own INR and using the graphs and diary helped me to understand how my body reacted to warfarin on day to day basis.

I only test my INR every four weeks unless I feel a change of symptoms and my INR generally stays between 3.5 - 4.5 with only the odd occassion of it either dropping too low or rising too high. Changes only normally happen if I am relapsing, have an infection, change dose of medication, have new medication or have had a few glasses of wine. At those times I do a weekly INR check just till INR is steady again. I also keep a box of Clexane ready filled injections in my cupboard and on the odd occassion that my INR drops below 2.5 I will inject till my INR is back within range.

Hope this answer helps Stewart.

Hazel x

[kathyD64]

Hi Stuart, i started warfarin in 1990 age 25 now i am 47 and dont have side effects. Its only recently my levels have become more erratic causing issues but as soon as my inr has risen my migraine etc improves. (currently tho my ACL antibodies are high so therefore blood stickier).

Re venous via capillary sampling i have only ever had venous sampling. I saw a consultant 1st august who mentioned the two monitoring methods only to express and also write to my GP as he felt strongly that venous sampling is more accurate to capillary sampling with APS. I wished i asked if this was his opinion or based on recent research. I think as you are just starting out stick with venous sampling for now. I appreciate many sucessfully use their own machines at home but some people become very compromised and have to keep inrs even above 4 and it takes a while to get to know what effects your levels and how you may feel. Hope that helps good luck kathy xx

[StuartD in reply to kathyD64]

HI Kathy, I'm slightly confused as so many people say that self-monitoring as revolutionised their lives. But if capillary monitoring is so innacurate, how is it helpful? Is it the case that it always shows a higher or lower reading that you need to work out what the correct reading should be?

Thanks, Stuart.

[kathyD64 in reply to StuartD]

Hi Stuart, must admit until the consultant said that i was considering buying one, as my inrs are fluctuating at present having been stable for years but only if my GP would support me re getting the testing strips on prescription & in agreement with using it which for me will be a no now! (my gp is a small country practice only 2 partners who always says lets see what the expert thinks!).

I didnt ask the doctor he volunteered that info as tho it was based on research because he went on to say capillary readings were higher compared to venous specifically with APS & the antibodies (i got anticardiolipin g&m) and he went on to write it in the letter my GP received. I think he was concerned because my ACL antibodies are much higher than they were when i clotted. But I agree many use the machines successfully. It seems where the GP supports this, there is also regular venous samples done to check correlation between both readings. I still think it might be alot for you to take on as you are only just starting warfarin but alot depends on your GP & the practice.

With lab test i still would suggest chasing them for results rather than wait on post if you are concerned at all. I guess i have been lucky tho because for many years my inr were stable on 5mg. Thats allowing the odd glass of wine - vodka but again i just do all in moderation. The heat definately affects mine and i tend to make allowances and reduce warfarin in hot climates being tested just before i go on hol and on my return. Where people, no matter what they do cant regulate their inr's i fully understand the need to have such close monitoring whereby im sure they would have researched the market getting the best product for the job. kathy x

[StuartD]

Thank you all for your responses, it's a great help.

[paddyandlin]

Hi Stuart sorry for the late response been havin g PC issues but I have been on Waferin now for three years and I thinks it can be a choice I have been going to my blood clinic every week since i started taking waferin as for some reason my INR never really settles so my PCT have decided that they pfrefer me having weekly blood tests which i do not mind i have never had any side effects from taking the waferin and i have looked into personally buying a Coag machine but i prefer the weekly blood tests at the moment thats not to say they are not good i just thinks it is a personal choice as to where you are at in your life. The choice is yours.

[smallvoice]

Hi Stewart

Back to your original question..... what would you class as successful? Taking warfarin will hopefully prevent more clots and make you feel heaps better with the right inr. (I run an INR of 4-4.5) I feel that that is success compared to how I was. I know that the condition is with me forever, but am determined not to let it win, although I do have to pace myself.

I have a machine, test when the clinic ask me to, phone in my results and then get a revised dosage if necessary. I also test if I feel rough to see if it is my inr or something else. Even if I go to the clinic I am tested with a finger prick, so this suits me. I know there is a slight discrepancy in methods of testing, but not usually huge.

Were you aware, as my consultant told me, that even if we are not being tested very frequently, our INRs always flutuate a bit, so too much testing and altering the dose doesn't let our bodies find a settled state. Also, a change of dose can take 72 hours to kick in!

Good luck with it all. Like Gadgets, I wouldn't be without my warfarin! Junkie!!

Take care Ann

[nyctapdancer]

I've been on high dose coumadin since 1996 or so, with no problems related to it, after the initial period it took to get the levels high enough.

While the first hemo i saw thought that 2.0 was fine, i was lucky enough to find the forums early on, and have endeavored to keep my INR between 3 and 4.

I have to say that i have gotten kind of cavalier about the testing, and go once a month because, truly, i got tired of being stuck by inept vampires. have now found a lab where they have competent vampires.

The only time i had an issue was with a chewable Calcium that did not list Vitamin K on the label. my INR kept going down, and finally, the nurse who was following me called the company and learned that, indeed, there was Vitamin K in it.

Also nearly killed myself when I was given Folic Acid that happened to look exactly like a 7.5 mg coumadin. Now I get a different brand of folic acid, and all is well.

i also take the occasional Advil, and eat tons of green veggies every day.

[nyctapdancer]

or maybe Vitamin K made the INR go up. can't recall. it was 10 years ago. :>)