What to do about increasing side effects. - MPN Voice

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What to do about increasing side effects.

5 Replies

I have been to l that lm on lifelong warfrin and now feel intimidated by my GP to complain about severe side effects,extrem body chills and burning on arms,tightness in chest.It appears INR needs to be between 2 and 3 target level.

5 Replies
katiewalsh profile image
katiewalsh

Hi. Please complain to your gp. I never had those problems on Warfarin & it may be something else. I’m now on Eliquis for life because I couldn’t stay within range on Warfarin & I produced blood clots in just a few days. Been on Eliquis for 5 years with no problems except ugly bruises. Katie

in reply to katiewalsh

Thanks Katie l will.

hunter5582 profile image
hunter5582

Assertive patients receive higher quality care. Passive patients do not. I am not sure why you are feeling intimidated by your GP, but that is not OK. It is always important to let your docs know what adverse effects you are experiencing. This can be a sign of intolerance to the medication or something else going on in your body.

I recall that you are on an increased dose of hydroxyurea, which has the potential for side effects like dyspnea, rigors, and peripheral erythema. Warfarin has potential side effects that include cold intolerance, paresthesia, pruritus, urticaria, and tracheobronchial calcification. Not sure what other meds you are on, but all meds have potential adverse effects. It is very important to work with your care team to monitor and adjust your treatment to provide an optimal outcome.

Many formularies require doctors to start off with cheaper drugs. Hydroxyurea is much cheaper than Pegasys, Besremi, or Jakafi. Warfarin is cheaper than Eliquis. If you are having trouble tolerating any of the meds that are initially prescribed, it justifies trying something else. However, you have to let your doctors know what is going on and advocate for access to more expensive medication what you may respond better to. As Katiewalsh indicated, many people find Eliquis easier to tolerate. It is considered by many to be a superior medication. If you want to access this med or any other, it is up to you to advocate to make it so,

Hope you get things worked out to your satisfaction.

in reply to hunter5582

Wow Hunter lve started to look at some of the causes created by warfrin and hydroxy as I become more aware of the meds l will feel better placed to take on my health providers. lm learning about my condition and still feel gobsmacked by the literature. However I have managed to step up and get my hydroxy back down to a tolerable amount for my body. Warfrin will be tricky although we have great access here in UK cost is the bottom line. I'm checking out whether the newer anticoagulants meds are already licenced in Germany lm told the UK seems to follow on from them. Anyway thank you Hunter.

hunter5582 profile image
hunter5582 in reply to

Eliquis has been around for a while now. It does cost quite a bit more, but is considered superior in terms of side effects, particularly bleeding risk. I tend to be aware of that issue as I experienced significantly increased hemorrhage (bleeding & bruising) while on aspirin. The doc took me off the aspirin despite being age 65. (Turns out we are more prone to bleeding on aspirin when age >60). Regardless, do be sure to educate yourself about your meds so you can better advocate based on facts and how your body reacts. There are several excellent on-line resources. My favorite is ePocrates, which is based here in the USA. You can get a free account that will let you access the Drug Monographs and check for drug interactions. epocrates.com/ .

Hope you get the meds all sorted out soon.

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