Hydroxycarbamide and Driving?

[bluebird567]

Hello friends,

In November last year I started Hydroxycarbamide 500 mg capsules and, with any new medication, I thoroughly read the packet leaflet. This is what the first leaflet said.

'DRIVING AND USING MACHINES'

'Your ability to react may be impaired during treatment with Hydroxycarbamide. You should bear this in mind when heightened attention is required, e.g. when driving and using machines'

This leaflet was last reviewed February 2023.

A slightly different approach albeit similar information is given on MPN Voice's website.

'CAN I DRIVE?'

Hydroxycarbamide is not known to cause drowsiness that could affect your driving, however if you are feeling drowsy or fatigued for any reason do not drive.

However, with the new batch of Hydroxycarbamide the leaflet states:

'DRIVING AND USING MACHINES'

'You may feel drowsy. You should not drive or operate any machinery unless it has been shown not to affect you and have discussed it with your doctor'.

This leaflet was revised November 2024.

Is it just me or is the latest comment in the revised version saying that I should check with my doctor first, especially as I do suffer with fatigue like a lot of MPN patients?

Would that be my haematologist or my GP?

And would I need to inform my insurance provider?

I have learnt so much from you all and would be really grateful for your feedback on this matter. Thank you.

[hunter5582]

This sounds like a layer of lawyer talk rather than medical advice. Drowsiness is not a commonly reported adverse effect from hydroxycarbamide (HU). The types of more commonly reported HU adverse effects that might be a concern include: fatigue, dizziness, and neurological issues like headaches or hallucinations (rare). If you are not experiencing any adverse effects that might interfere with driving then it is OK to drive. In my experience, doctors are very careful to warn patients if a medication they prescribe may interfere with driving since it is a serious liability issue.

We each have a responsibility to ensure that we do not drive when we are impaired in any way. Driving when significantly fatigued is by definition impaired driving. You can face legal consequences for driving while impaired by fatigue or any other reason. Many of these warning will say something like "Do not drive until you know how the medication affects you" , which a very reasonable statement.

At this point, you know how HU affects you. If you feel impaired, then you do not need a doctor to tell you that you should not be driving. That is a responsibility each of us has to assess our ability to operate a car safely. If you remain concerned, by all means talk to your doctor or a pharmacists about the issue.

NOTE: I would not notify my insurance company of any medication I am taking. it is none of their business. It would just give them a groundless excuse to raise rates.

[bluebird567 in reply to hunter5582]

Thank you Hunter5582 for your prompt and clearly thought out response.

After posting my questions I wondered if I was just being over cautious but wanted some reassurance from my very knowledgeable and kind fellows.

I am slowly learning more about this 'disease' and extremely grateful for the time and effort you guys put into this wonderful community.

Thank you.

[saltmarsh]

I am in total agreement with Hunter. I'm 78, take 1000mg of HU 4 days a week, 3 the others for the last 3 years. I always take mine with dinner. I have never had a driving issue while taking this medication. And any dizziness that showed up whether from PV or HU was resolved, for me, by increasing my hydration. Good luck.

[bluebird567 in reply to saltmarsh]

Thank you. I much appreciate you reply.

[Loubprv Volunteer]

Heavens.I was on HU for 15 years and drove all the time, inc all over Europe

Don't worry about it. I m almost 71 by the way

I should think you'd be in a far more dangerous state after a large G and T!

Drive forth and enjoy, you'll be fine

Louise

[asacker in reply to Loubprv]

I can beat you, I've been on HU for about 40 years and driving all that time.

After 50 years with an MPN, I've now got to a place where I take all these things with a pinch of salt. I agree with Hunter and the others, just carry on drivng.

Amanda

[bluebird567 in reply to asacker]

Oh gosh, 50 years with MPN. I will certainly take your advice. Thank you.

[Loubprv Volunteer in reply to asacker]

Crikey! New years honours list beckons. Heavens knows you're a jolly sight more deserving than half the people on there. X

[bluebird567 in reply to Loubprv]

Thank your for your reply and your humour. It was very well received. 👍

[Crotchety2013]

Hi, Crotchety here aged 78. I was taking hydroxy for about ten years and changed to Rux last year. I have always driven though I find I need to have a break after an hour. I do suffer from fatigue with PV and try to rest before a drive of that length. I drive a lot of short journeys and the key for me is being aware of bad fatigue days, stopping if I feel fatigue might start, even if only for a few minutes and forcing myself to rest in preparation for a. journey- not easy as I am naturally a busy person and fiercely resent the fatigue . The fatigue hasn't changed on Rux, but I feel sharper and brighter between bouts of fatigue.

[bluebird567 in reply to Crotchety2013]

Thank you for you reply. You don't sound 'crotchety' at all. Thanks for the positive affirmation.

[nightshadow]

I had a very weird occurrence when driving shortly after going on HU.

I was driving a well known stretch of freeway and I literally mentally stepped out for about 1 mile of the drive. I was only aware of it because I was wondering how I missed some of my favorite scenery. I asked my husband if he had noticed anything odd, and other than being quiet (which is not atypical) he had not noted anything in particular during that time. It was a crowded and curved road as well, so apparently a critical part of my brain was still functioning.

I have never had a repeat of this experience in the 4 years that I have been on HU.

[bluebird567 in reply to nightshadow]

Thanks for your reply. Your experience doesn't sound HU related to me. I have often had the same experience over many years - and before ET. Sometimes, on a very familiar drive, I get to certain points in the journey and don't clearly remember passing what went before. I've always put that down to ' auto-pilot'. I believe the brain is doing it's job but our subconscious isn't totally aware of it. Well that's my theory. Your driving was good enough for your husband not to notice anything different. Keep up the safe driving. 👍

[mag123ben]

Can't really help as have other eye problems. But just had cataracts removed and warn glasses for 65 years, now NO glasses. Great, just got to let my hand and brain know. As they keep pushing them up my nose, or grabbing them first thing in the morning.

[bluebird567 in reply to mag123ben]

Thank you.

Regardng pushing non-existant glasses up the nose, I have the same thing when not wearing my watch. Obviously, not trying to push up my nose, but continually looking at my wrist where my watch usually is.

🙄 😂

[Hannah2308]

hello, I’ve been on Hydroxycarbamide for just over two years. I have just turned 80 years and still driving. I agree I wouldn’t inform insurance. Enjoy your driving xx

[bluebird567 in reply to Hannah2308]

Thank you. You all confirm the same thing. 👍

[Fairydust1111]

I drive…. No mention of not driving when I started hydroxy

[bluebird567 in reply to Fairydust1111]

Thank you. Not one person on here has experienced any problem. Always good to know. 👍