Headaches. A Jakavi side effect?

[Sherpa8]

Hello I’ve not posted before. Now I am feeling rather lost! I have been on Jakavi since August 22 after being diagnosed with MF. I had a high Sympton burden but was assured that’s not a reflection on my prognosis?!

I have had constant headaches recently taking the Rux/ Jakavi 20mg twice a day. ( was reduced to 15mg fatigue increased so back to 20mg) . The headaches have become more intense. Around my left temple. Worse at night. I don’t often see posts with this issue so I am wondering & worrying if it is due to something else? Or just a side effect

Any thoughts would be gladly received. Thank you 😊

[ainslie]

I have not heard of that symptom from Rux but we are all different so worth factoring that in, it maybe wise to see if your doc can help you diagnose the cause of the pain , it might be something else so worth checking

[Sherpa8 in reply to ainslie]

Thankyou- yes GP next port of call then.

[ainslie in reply to Sherpa8]

Hunter is right, headaches and a million other things are listed as possible side effects on the leaflet I justchecked, I have never heard that particular symptom from other patients or experts , I would still look at other potential causes though. I have been on High dose Rux 5+ years now and have no side effects, I have PV

[hunter5582]

Sorry to hear about the struggles with headaches and other symptoms. The high symptom burden is by definition part of your prognosis. It might not predict the risk of progression to blast phase but it certainly does predict your quality of life.

Headaches are a common microvascular symptom of MF and other MPNs. Headaches can also occur as an adverse effect of Jakavi. Together the two causes can be more problematic. This is definitely an issue to review with your care team. Hopefully you already have a MPN Specialist on your team who will be familiar with dealing with MPN related headaches.

It may also be worth consulting with a doctor who specializes in treating migraine/headaches, often a neurologist. I have a different form of visual migraine from another cause. This has responded very well to treatment with a CGRP inhibitor, Ubrelvy. Perhaps a migraine specialist could review options with you that are outside of the scope of practice of other members of your care team.

All the best.

[Sherpa8 in reply to hunter5582]

Thank You some good points for me to think about. It is difficult to see clearly when it is happening to you. I appreciate your views from another angle. Take care.

[Heidi-W]

Hi Sherpa

Its def worth contacting your GP for a review if you keep having regular headaches particularly if your temple area is tender. They likely will check your blood pressure and may do bloods to check your ESR level ( a sign of inflammation) to rule out some causes of headaches. If you are getting any visual issues alongside the temporal tenderness then you need a speedier review this week.

The other thing that can help with your care is to get a review with the optician to check pressures ok in the back of your eyes- GP will often recommend getting this checked too. A headache diary can be useful too. I'm not sure how old you are but sometimes hormones can impact too so if there is variability during the month there may be a link too.

I'm on rux for Post PV MF and struggling a bit with headaches again too which used to be horrendous when 1st diagnosed. I think sometimes its a combo of the fatigue/poor sleep due to pain issues etc. Def important to keep well hydrated.

Hope you get some answers and relief soon too. Good luck

Heidi

[Sherpa8 in reply to Heidi-W]

Hello Heidi-W

Thanks for your reply. I did have a routine eye check about 6 weeks ago & the optician did find an anaemic haemorrhage . He was really shocked as they are rare apparently. It has dispersed but not totally so he has referred me. I’ve heard nothing yet.

I used to have migraines with aura infrequently but not had any for years. Maybe they have just changed, since being diagnosed with MPN?

I am 55 years young!! ( in my head! My body feels otherwise!) I will process all the information and have a think.

Thanks again.

[Heidi-W in reply to Sherpa8]

Ah I'm glad you've been to optician and have referral in the pipe line about your eye. Re hormones lots of patients can get headaches around the peri-menopause/menopause time but hopefully at 55 years young, your hormone levels are at their new normal and settled down a bit, so less likely to be the cause of the headaches. Totally get the body not feeling the right age-mine thinks its older than my mum's with having a hip replacement at 41 and now naughty MF at 45. The joys!

You take care and good look x

[ProudHarry]

I get them. I’m on 15mg per day only and I get a dull headache every few days around my nasal area.

I’ve removed everything else I thought it could be and that leaves the Jakafi.

It also seems like my system is more sensitive to foods or meds being on the Jakafi too.

I don’t like it but without the Jakafi, my counts increase and itching is horrible.(PV)