You are here

Managing high blood pressure from Tasigna - advice?

Categories:

Hi, my mom has adjusted for the most part to Tasigna.  She's not super-sick although she never feels quite well.  

I am concerned though about what the Tasigna is doing to her blood pressure.  It lingers between 180 and 215 over 90-120 all of the time.  It has been managed on blood pressure meds for about ten years. Now it's really high again.    She says she does not have headaches or dizziness like she used to before taking Tasigna, when her bp would go up just due to anxiety, on certain occasions, then it would come back down to 150 (she has an anxiety disorder that one manifestation of, was fear of going to the doctor, and it would go back down after she left).  She said that she just generally feels awful all the time.  We are taking readings every day and it is always up in the 200 range, any time of day.

She is taking 15 mg accupril, 5 mg up from before.   This was helping about a year ago but it seems to be not helping now. 

Her hemotologist is not interested in addressing the issue although she brings it up regularly.  He says it's not his area so she needs to talk to her GP.   He never asks her outright about it, even though her bp is high during each session.  When she brings it up he dismisses her, although he did a year ago suggest she might want to take a bit more accupril.   He seems like a good doctor, he has a good reputation, we like him, and she is in remission as a result of him treating her with the Tasigna.   However, his attitude toward her blood pressure disturbs me, seeing as it's likely a side effect from the med he is prescribing, not some situation unrelated to her treatment.  She is not willing to go to anyone else, because it will be a lot of trouble for her and things are steady,  so it's a moot point.

Has anyone had these side effects from Tasigna, and are there any suggestions for dealing with it?  She does limit her salt intake and try to be healthy.  She does not exercise and is not likely to start doing so (She is elderly, has very little energy, a bad knee and hip prevent her from doing much, and no amount of coaxing for her to walk around the entire block, although she could, has been effective in many years). 

Suggestions appreciated.   Thx

 

 

 

Hi DJ,

I too would be worried about the high blood pressure your mum is experiencing on nilotinib (Tasigna). Also, I would be a little concerned that her doctor is dismissing her high BP. It may be that over time she may be one of the minority of patients who may experience further cardiovascular issues from taking nilotinib even though it is controlling her CML very well. Is there a way you could talk to her doctor about the fact that nilotinib (and ponatinib) is known to have cardiovascular effects in some people and therefore she would prefer to try another TKI with less risk of this effect.... bosutinib for instance?

I hope this helps,

Sandy

THank you Sandi,

What's a TKI?

It's too bad she can't get off this stuff entirely.  It drugs her out. We are grateful she's in remission, but it sucks seeing her not feeling well all of hte time. Kills her appetite, too.

Hi DJ.... a TKI ( tyrosine kinase inhibitor) is a kind of drug that targets the protein (kinase) in the abnormal cells (in CML these are the cells that are positive for the Philadelphia chromosome) and shuts it down- thus the cell cannot replicate and their population decreases. Nilotinib (Tasigna) is one example of this kind of targeted therapy and is one of the 2nd generation TKI specifically designed to treat ph+CML - imatinib (Glivec/Gleevec) being the first. There are currently 5 TKIs available - I assume you are in the US and your mother has access through here insurance. See below for a list of TKIs

imatinib    (brand name: Glivec or Gleevec in the US)

nilotinib    (brand name: Tasigna)

dasatinib  (brand name Sprycel)

bosutinib  (brand name: Bosulif)

ponatinib  (brand name: Iclusig)

All have differing side effect profiles so the choices depend on any current co-morbidities already present - for example cardiovascular disease or diabetes. You should really ask that your mother be considered for a change to another TKI as from what you say she may be intolerant to nolotinib and would like be more comfortable taking one of the other TKIs such as dasatinib or bosutinib.If her doctor is not compliment with your request she should seek another more sympathetic to her quality of life.

Hope this helps 

Sandy

Hi there, Tasigna has cardio vascular side effects that are well documented.  Your doctor must pay attention to this and arrange an appropriate referral to a cardiologist.  She needs to be diagnosed and managed carefully by an appropriately trained and qualified person.  I am on Tasigna and my cardiovascular situation is fine but I see a cardiologist and have full Doppler scans, ECG, MUGA scans, echocardiogram, blood pressure, blood sugars etc done routinely. I live in Australia so I know it's different but I am a health practitioner and it is not ok for your haematologist to not be taking your mother's situation seriously.  Either make him or her respond with a referral or find someone to manage your mother's care better.  Best of luck.

Thanks

I'm back to the thread, revisiting this issue yet again and reading your responses.  Thank you all for responding.

We were hoping the blood pressure problem would go away, but here we are again.  I mentioned it but she's very resistant to the idea of changing doctors or medicines.  She has been adjusting her blood pressure medicine herself in small increments to test it.   At this point she has more than doubled the dose she's on over time, and it seemed to initially help her blood pressure, but now it regularly shows up around 175-200.  Sometimes it has gone into a more normal range, it seems to fluctuate.   Really, overall, it doesn't seem to help, and now she's embarking on another increase.  She has an appt with the GP in a month or so.  

Now she just came in and told me it was at 169.

She sees another doctor who has been her longtime GP, and he never seems to do much about this other than tell her all looks good.  But she is sick day to day.   She seems to go several days sick and then a day or two feeling better.   I am not sure what to do, I would like to see her more closely monitored.

She also seems drugged from this med, and I wish it were possible now that she's in remission, to taper down to a lower dose while still keeping the remission.   I guess that's not possible?

Have any of you had this issue with the blood pressure craziness?  Is this common?  It's got me very worried.

Hi DJ,

I feel for you! Your mum either needs to see a more engaged Haematologist who will take steps to change her TKI from nilotinib OR if she still cannot be persuaded then her current doctor needs to be made to understand that there is a serious risk to her cardiovascular health if she continues with nilotinib. The good news is that she is a TKI responder- ie. nilotinib is controlling her CML and she has a molecular response (?)..... however, according to Novartis (the drugs manufacturer) niltonib has a black box warning (see: Tasigna Side Effects) for causing cardiovascular events which are not reversible. More worryingly for your mum, according the Macmillan's list of rarer side effects  nilotinib can be the cause of Increased blood pressure.

According to eMedicinehealth it should not be taken alongside certain other medications which include those that control high blood pressure. So the fact that she is increasing her dose of her blood pressure medication may well make the situation much worse.

Is there any way you can speak to her current haematologist or persuade her to ask for a second opinion.

Which centre is she being treated at?

Sandy

 

 

 

Thank you Sandy

Since the post she has gone up on her accupril and it seems to have brought her blood pressure under control.  Now I'm a bit concerned since your post mentions they should not be taken together.  Thank you for the information.   I will check into it and do more research.