I'm male, age 71, diagnosed ET JAK2+ about 4 years ago and have been on a steadily increasing dose of Hydroxy ever since (currently 12 capsules pw). The hydroxy seems to have kept my platelets under control (last reading 436), but I have noticed a significant impact on memory recently, which seems to coincide with dosage increase. I know that 'brain fog' is a frequent companion to MPNers, but I would be interested to hear if any others have noticed a similar linkage to hydroxy.
I have my 3 monthly phone review with hematology tomorrow and intend raising the issue with them (and investigating potential alternative drugs), but I would really appreciate input from those who have already 'been there' .
Many thanks and take care
John
Written by
Ovingite
To view profiles and participate in discussions please or .
Hi John, , I'm sure I've read other reports from folk concerned that their Hydroxurea / Hydroxycarbamide has caused chemo brain as it's quoted. , And my own view is that I'm sure it probably does in a few cases , whether ones age comes into it I don't know.
I can almost hear the response you might get from some quarters "well at your age you're bound to experience some loss blah blah blah" but if any doubt is cast I would stand my ground because you're noticing a significant impact and it may well be that an alternative drug as you suggest may benefit you going forward. That way at least you would have a gauge so if it worsened you might need to look elsewhere.
Good luck with your appt , not quite the same as face to face though my last one used the hospital or nhs video calling and I felt more connected.
You can find information on this in the literature. Be sure to stick with reliable sources. here is one that does superficially include hydroxyurea. chemocare.com/chemotherapy/...
If you have noted an increase in symptoms related to HU dosage, then that would lend credence to the notion that HU may be responsible for what you are experiencing. You may need a more comprehensive exam to be sure nothing else is going on that would likely include a MRI of the brain.
Note: some level of age-related ischemia in the brain is to be expected. This is a normal part of aging. A neurologist can determine whether there is something other than chemotherapy-induced neurological symptoms going on. Note 2: I have had a bunch of MRIs due to a brain tumor so have seen the age-related ischemia on my own MRIs.
As JediReject indicates, you will likely have to be assertive to get this addressed. Some docs do not like hearing the HU is causing problems and are too quick to be dismissive of patient concerns. Assertive patients receive higher quality care. Passive patients do not. There are other options if you are experiencing unacceptable side effects from the HU.
Thanks Hunter. Fully agree about assertiveness. My belief is that the only person who knows everything that happens to me is me and my opinion is therefore important. I think that's particularly important with MPNs that many hemos have little experience of. Some docs don't like that too much, but generally it works for me
I do work to have a positive collaborative relationship with all of my docs. Emphasis on collaborative. I insist on being treated as an equal partner in my care. I also keep the roles clear. Doctors make recommendations. Patients make decisions. Any doc that is not willing to respect me and my rights as a patient is fired. I have only had to fire a few docs. I have a great relationship with the vast majority of the docs I see. I work to keep the positive relationships in place, but do insist on making my own decisions about my care.
"It has to be said that the current situation doesn't help - ongoing boredom, frustration and separation from normal social experiences can't be good."
Amen to that!!!
Dear John,Greetings from Down Under 🦘🐨
How about a request of decreasing your HYDREA intake, instead of 12/week, why not just 7 only. Or just once a day.
I take HYDREA once a day and my platelets are stable on 450-460K.
Hi ovingite I am 47, take 21 hydroxy a week. My short term memory is awful! I find it so frustrating. I have spoken to my Heamatology dr and he said it is because of the drugs. Apparently the receptors in our brains get damaged by the drugs.
I thought I was going mad ! I can’t remember names, dates even struggle to string a sentence together some days. I think fatigue plays a big part in it as well, as I don’t sleep either 🙄
Thanks Sue,Oh how I can relate to that! I guess some of it is inevitable, but I'm looking for ways of minimising it. If anything productive comes out of my review I will share it with you all
Really wish you well and definately something to ask about. Doctor may be able to help and also other lovely therapies to help you relax as much as possible.
I don’t know about memory loss but after 5 years on anagrelide and hydroxi if noticed a decrease in my ability to compute. I couldn’t cut a small cake into 5 last week!! X
26 tablets for ET along with simvastatin and aspirin substitute. I used to cry and go into my lady lair for about 3 days every time the meds increased. I’ve been stable for about 10 months. Got diagnosed Oct 2015
In that case I get the bragging rights ☺️ as I'm on 10 tablets a day for 5 days and 9 for 2 days. Not the sort of contest anyone wants to win though ☹️By the way, the memory loss seems to have spread to the medics. Having waited around most of the day for my call, I called them to see what was happening. It seems they cancelled the call but forgot to tell me......
As my dearly departed mother in law would have said "you couldn't make it up!"
To be honest, I've lost track of which does what! I picked up a batch of new stuff when I had a TIA a couple of years ago. Apart from hydroxy I take clopidigrel, atorvastatin, lisinopril, lansoprasole, bisoprolol and vitamin D.John
Hi John, I'm 70, PV and have been taking hydroxy about 5 years. I take 11 a week which seems to control my platelets, though they do seem to flare from time to time. Memory loss isn't something I have (knowingly!) experienced -but do keep digging with it because there must be so much experience now with hydroxy. Best wishes
I’ve been experiencing brain fog since my 30’s when I was diagnosed with fibromyalgia. They called it fibro-fog. It’s really frustrating and I understand how you feel. I was diagnosed with ET at age 52 and put on Hydrea back then (2008). It’s embarrassing to me when I can’t remember things but it’s something I accepted a long time ago. But, I still work and take copious notes and have worked out a lot of coping mechanisms for day to day life. When my brain fog gets really bad, sometimes it’s really hard to even put a sentence together. I hope you can find a way to tackle this problem.
Cja, there may be an answer for your fibromyalgia and memory with thiamine. Hydrea impacts magnesium needed to activate both thiamine and vitamin D. Some water soluble thiamine forms have a low absorption level through the blood/brain barrier as opposed to fat soluble forms like Benfotiamine. B vitamins work better together. Always consult with your health care provider before using any supplement.
Thanks so much for your reply. I started taking vitamin D recently and I also take a multi-vitamin every day. But I never looked into thiamin or magnesium. I will look further into this. Thanks again. Be well.
Hey John !! I think it is a common thing for us all. The brainfog. I also believe that it is caused by a sort of lack of oxygen. When the bloodsells orplatelets are killed, the process needs loads of oxygen and at the same time the waste materials pollute and the reaction uses oxygen.
I always feel much more clear-headed after a day of hard physical work. Maybe it is just me-- but you could give it a try !!
Hi Ovingite, I found this post when looking for info on HU. I recently started on HU, one month ago. Could you tell me if you take the HU just one time, however many caps you take or do you spread them out some morning and some night? Do you wear gloves when handling the pills or just wash hands afterward? Thanks in advance for any advice you might have. I am PV now and think I have had memory loss even before I started the HU not sure if it is getting worse on HU or not. Good luck to you going forward.
Hi Meatloaf9,I've been on hydroxycarbamide for about 4 years now and my dosage has settled down to 11 capsules per week, which seems to keep my platelets at the right level. I take 1 per day on Monday, Wednesday & Friday and 2 on other days. I always take them with water at about 9pm (some people complain of minor side effects when taking them in the morning. By taking them at night you sleep through them!)
I could never understand the logic of not handling the capsules, after all you are about to swallow the things! I just rinse my hands after handling them, but each to their own etc. Overall, once my system had adjusted to hydroxy after a few weeks, I have had zero problems with it. I hope it works as well for you
Hi John, thanks for getting back so soon. Good advice. I think I will start taking both my daily pills at the same time instead of one in the am and one in the pm. Would just make it simpler to only handle them once per day. I have not had any side effects thus far. I take them on an empty stomach so that they will be absorbed faster with less chance of reflux back into the esophagus, at least that is my theory, I am being treated for reflux already. Thanks again, I always enjoy reading your posts, Best to you going forward.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Hair loss on Hydroxy
ET vs. Hydroxy side effects 
Hair loss and hydroxy
