Tofacitinib

[Beth72]

Hi everyone does anyone take tofacitinib and have high blood pressure and high cholesterol due to taking these tablets thx xx

[janmary]

I have stopped Tofacitinib - tried twice and it seemed to be helping joints but B/P and cholesterol went up and I had a lot of abdominal discomfort.

There’s a very recent paper suggesting it should not be prescribed to those over 65 unless theres no alternative - no panic inducing findings but enough for me to put in the balance .

Still on M/X - not confessed to rheum team yet

(Am over 65. - by more than a few birthdays, although in denial )

[wishbone in reply to janmary]

I don't understand why people taking JAK Inhibitors are not advised to have regular blood tests, especially as raised cholesterol is a common side effect.

I've been taking statins and BP tablets since having a mild heart attack around 15 years ago. Not advised to have regular blood tests after starting baricitinib over a year ago, so I took it on myself to ask my GP, not only for cholesterol monitoring, but also a full blood count as baricitinib can affect the liver. Not to the same extent as methotrexate can, which I believe requires regular monthly or bi-monthly blood tests, hence I get tested every 6 months. My bloods and BP were fine when recently tested and my next blood test is due in June.

[janmary in reply to wishbone]

The prescribing guidelines do include regular checks of course.

Can be a slight professional friction though - Tofa can only be prescribed by specialists but side effects such as high cholesterol are managed by GP -

[wishbone in reply to janmary]

I'm aware that cholesterol is managed by a GP. What I tried to say is perhaps rheumy should advise people starting JAK Inhibitors to see their GP at least about cholesterol monitoring, especially if they have a history of cardiac issues, which should of course be happening anyway but is not always the case.

Perhaps my expectations are too high, but no mention was made to me about being sure to have my cholesterol monitored when I started baricitinib. I later phoned rheumy to find out if it was necessary to have it and my liver regularly checked, but the nurses didn't seem to know nor did they appear to be very interested in finding out. It was no big deal for me as I was a member of this forum so aware what needed to be done, but the majority of people with RD are not on forums like this one and may well carry on regardless if not advised by a doctor or nurse, especially men in general, who in my experience, tend not to ask very much about their illnesses..

[oldtimer]

My sister (who also has RD) has been taking this for several years now as part of a trial. She has frequent blood testing because of the trial. One of the things that they found was that it does increase cholesterol levels and she has to take a statin to lower this now. She also takes anti-hypertension tablets. They are continuing to monitor this but it does seem as if it is one of the side effects of this medication. As she is otherwise very happy on it, she's continuing.

[wishbone]

Beth, I accidentally replied to janmary when it was meant for you.

[Teatrees]

Hi I have just had my six months consultant check on this drug and I'm pleased to say it's been very good! I have had no high blood pressure, sickness and my feet as in standing has been better. They do tell me the only thing they have discovered, is it can cause blood clots on long flights.. with this corona virus I don't intend doing that. Good luck to all trying this drug.