brain fog

[April-May]

I’d love to know how usual it is to have brain fog when on Hydroxycarbamide

[LittleLuna]

I think brain fog is one of those joyful symptoms of MPN’s. Might be that or could be mix of taking meds and a symptom

[April-May in reply to LittleLuna]

Thanks, it’s just the haem doc said it’s not a symptom and would I like a brain scan!! 🙃

[ciye in reply to April-May]

l had brain scan last week as been getting lots of headaches.

The brain fog is a symptom of condition and meds....

[April-May in reply to ciye]

Was that the doc’s conclusion from your scan?

[ciye in reply to April-May]

haven't heard back yet

[hunter5582 in reply to April-May]

It is sometimes hard to tell what is what with MPNs and HU. It could be either or both. Sometimes the only clue is timing of when the brain fog started.

I would suggest that a MRI of the brain would be a good idea, just as a rule out. It may show nothing, which would be a good thing. I have a screening MRI several years ago for other reasons. A tumor was found, much to all of our surprise. better safe than sorry when it comes to neurological symptoms.

[Grendall]

hi April,

I have major brain fog but I am on IFN but no idea if it’s the meds or the MPN itself!

[April-May in reply to Grendall]

Hello Grendall

I’m sorry to hear you have it too. I know how irritating it is and I know I didn’t have it before. I really can’t understand that some docs just don’t seem to understand the range of symptoms MPNs cause. Best of luck to you

[Vtr1000]

Hi April-May, when I was on hydroxy a couple of times I completely lost 20 minutes of time. Once I stopped hydroxy this hasn’t happened in the same way. My memory isn’t as good as it was pre MPN.

[EPguy]

Brain fog can be from:

-MPN

-MPN meds (HU, IFN...)

-Long Covid (past infection)

-Other past infections

Most unsatisfyingly vague unfortunately, but brain fog is very real and increasingly recognized as a result of the large patient group with long covid.

My household as been thru most of these so it's all familiar.

[Winchie]

I had brain fog just before starting on HU. I also had a lot of ocular migraines and occasional blurry vision. Once I started on HU the brain fog cleared up, and also the migraines. Another thing that happened was my fingertips started to burn. I was in the hospital going to an appointment that day and became dizzy and my arm became numb so I walked over to the emergency room. I started on HU shortly after. So far I am feeling really good. I hope it lasts. I have been on medication for about three months now.

[Innessant]

I have been on Hydrea ( Male 65,PV diagn in 2012) for a few months now and have no side effects at all. Indeed less itching and I can now take a (cold) shower and live a better life. No brain fog...I hold down a consulting job. Just trying to add balance .

[Daisey123]

i get brain fog too and on hydroxy. But i started just before being diagnosed with ET.

[Wyebird]

haha BRAIN FOG

I have the memory of a pea. So when that came along I welcomed the excuse. Since on Peg I think my head is a little clearer or is it due to the drop in platelets and rise in haemoglobin due to the Peg.

[lhasedoglover]

I take two a day. I studied languages but often I can not find my words in my own language. Sometimes it is even difficult to have a proper conversation. So I say yes possible

[April-May in reply to lhasedoglover]

thanks for all your replies - it seems that we have a variety of reactions to our MPNs and the medications. What do they say? Variety is the spice of life … if I’ve remembered that correctly ??🤔🤣

[Loobylou72]

I have had two brain scans but it was more for liver symptoms caused by my MPN. The first scan showed my brain was impacted and so I was put on additional meds which helped but I am still a bit dappy!! Just had second so won’t get results for a couple of weeks. My brain fog had started before going on Hu meds.

[Cja1956]

I agree with the others that brain fog is a symptom of MPNs which unfortunately can be exacerbated by our meds. However it doesn’t hurt to have a brain scan to rule out other possibilities. My hematologist prescribed one for me a couple years ago, and it was clean. I find my brain fog gets worse when my hemoglobin numbers drop.

[Pat032018]

Hi April-May,

I am starting to get brain fog every now and then- the most embarassing of which is when it happens as I shift subject from one to another while doing a presentation in a meeting. I usually recover after a couple of seconds. Fortunately, it is not as bad as it is only noticeable by audio - as I do remote work.

I am on Besremi and had not taken HU nor Pegasys in the past.

Maybe, it is also because I am almost 65 and this age in combination with Besremi causes brain fog for myself.

While I am concern, I can still hide the effects of brain fog at the moment.

Best wishes for all of us!

[nightshadow]

I had ET for a while before diagnosis so it was clear that HU helped clear the brain fog that was caused by the ET.

[Exeter21]

I was fortunate to come off it after 6 weeks. During that time I was convinced the MPN was how this was. I was normal no symptoms before it. During its use I experienced brain fog extreme tiredness all never known before together with severe gastric problems & hair thinning & coming out. My body obviously went into shock behaviour as within the 6 weeks after stopping it my body returned to normal. I am now cycling walking sailing back to normal fitness no brain fog. I know it was the Hydroxycarbamide.

Currently off everything but aspirin & researching all possibilities before next decisions Haemotology offer 👍

[Kormoran in reply to Exeter21]

Hi thank you for your comments on Hydroxycarbamide, I've been on it for nearly three years and have developed joint pains in both big toes, both my thumb joints plus scabs that won't heal on my scalp.

I am now 67 and thinking of going back on Asprin only as I have been taking Asprin since I was diagnosed in 2005.

I know Hydroxycarbamide is not suiting me so I think I'll risk life without it.

I speak to my consultant tomorrow so should be interesting.

I am very active, walk a lot and cycle plus sea swimming. I am sure there must be safer ways to manage this condition, ie diet and exercise.

I live in Launceston Cornwall.

Let me know if you have any breakthroughs regarding diet etc.

I just don't want to continue with chemotherapy.

Very best to you

Paul

[Exeter21 in reply to Kormoran]

will do I go next week Exeter Hopital Haemotology. Bloods 2mrw. I will keep you posted but I certainly will not take that or anything that has that effect again as my quality of life & health was horrendous 👍. Julia.

[Kormoran in reply to Exeter21]

I feel the same way, I will let you know what the consultant says.

All the best

Paul

[Exeter21 in reply to Kormoran]

👍👌

[Ottoblue in reply to Kormoran]

Hi thereI'm interested in what response you got from your consultant with regard to coming off HU in your 60s. I've only been taking it for 6 months (aged 60/JAK2) and so far with no side effects..... I just don't like the idea of a chemotherapy tablet for life! I am (like you, seemingly) fit and active - I cycle and walk and swim outdoors, and I have no issues with weight or BP or cholesterol or family history of strokes, so I find myself wondering if all those factors in themselves don't help to offset the risks. I lived a very healthy life with high platelets for nearly 20 years before being diagnosed.

With best wishes

Sarah

[Wyebird in reply to Kormoran]

think carefully, the thought of Having another stroke prevents me from stopping my meds.

Just imagine having full use of your faculties but not being able to walk talk or wipe your own bottom.

I’m lucky I recovered well after my first and only one.