Can anyone explain whether really droopy eyelids are a symptom of ET. I thought that perhaps I am now allergic to the Hydrea. Today they nearly covered my whole eye. I will see If I can get a photo taken and include at a later stage with this post. Most annoying. My whole face drops in particular my mouth.
Ta Anna
Hey Anna... 
HU can have many unwanted side-effects I guess... as I am no longer on HU these days it might be harder to contribute...
...However, I do recall that I suffered from a great deal of mental fugue back in those days when I was still taking HU, and my fatigue might even have seemed worse during those times...
Hopefully, you will adapt and adjust to the correct dose over time...
BTW, I did reply to an earlier message of yours by PM, advising about other MPN doctors in Australia, did you see that message Anna?
Best wishes, stay safe & well...
Steve
Hey Steve
I read the message about a specialist in Sydney. Pte82 sent me a list of MPN Specialists in Australia but didn't include your Specialist mainly Melbourne specialists. Can you read responses Pte82 has sent me? I am feeling quite ill so need to log off.
Cheers
Anna
It's not something I have heard of in connection with HU but other people may know more. I do, however, know that as women (men too?) get older this happens although may be not to the degree you have experienced. Sallie
Hydroxyurea is a toxic medication that can have a number of of potential side effects. Dermatologic issues with the eyelids is possible, but not common. Facial erythema is also possible, but does not sound like what you are describing. Another potential adverse effect is lupus erythematosus, which would be a concern if you already have an autoimmune disorder; however, that does not sound relevant to your immediate concern either.
There is not much showing up on search, but here are a couple of references regarding HU and eyelids. Please note that I doubt that this is what is going on based on what you described.
bjo.bmj.com/content/85/3/371.3
pubmed.ncbi.nlm.nih.gov/749...
It can be really hard to sort out what is the ET, what is the HU (and all the other meds and the combination thereof), and what is unrelated. What you are describing does sound a bit like Bell's Palsy, but could be any of a number of things. I would most certainly get seen ASAP to get this assessed. Would also rerun a drug interactions check on all of the meds you take, just in case. I use the ePocrates Online (free) website to do this.
Hope you get this sorted out ASAP.
Thank you Hunter5582
It is driving me nuts but I avoid Doctors and hospitals unless its really required. I am familiar with Bells Palsy. My mum has had it 30 odd years ago and now in an aged care facility who forget to give her eye drops, as she doesn't produce tears anymore. Mums 90 and we had to put her in care two years ago when I got the Pneumonia. I still want to bring her home but she is incontinent and it's a difficult thing caring for a loved one when you can't care for yourself.
When have some more energy I will do some research based on the websites you kindly offered. Look after yourself.
Anna
Sorry to hear about your Mum. We had to move by Dad to a facility as he is too far gone with dementia to care for himself an his needs are beyond what we can provide. We are very lucky to have found an 8-bed group home where they take excellent care of him. They treat him like family. He is the only male there with 7 ladies and an all female staff. He gets LOTS of attention.
I do hope you get to the bottom of the newest woes ASAP. It can be a real mystery sorting it all out. While I would not rule out a reaction to the HU, it seems likely to be something else. The imbalances in our bodies created by the MPN can go way beyond hematopoiesis. Systemic inflammation is so pervasive and hard to nail down, but it is quite real and a big problem for us. Then we can always have truly unrelated issues as well. I do hope you can connect with a truly knowledgeable MPN expert doc soon. It really does make a huge difference.
All the best yo you.
Very interesting. I have the same symptoms and it’s very annoying. Although that is how I came to find out I have ET I thought I was having a stroke by having these symptoms a couple different times lead me to the ER and then we discover my platelets are high . I believe everyone has different symptoms . I would love to exchange photos I have saved a few during my flare ups .
beths3bees@icloud.com
Beth
I agree. I will get some photos done asap. I can't believe that there is someone with similar symptoms.
Anna
Not been affected with droopy eyelids on Hydroxycarbamide for five years. Best ask your heam team about it. Are you on a high dose?
Hi Spirit123
I have been on Hydrea for over four years but I refuse to take more than 500mg daily. It is a dreadful side affect. I have discussed with my GP but after a few tests at my recommendation he gave up. I will ask my heamo next visit.
Thanks
Anna
Really pleased
what is it, really?
Looking for a really super medical ID bracelet?
Really red faced and feeling like I was going to pass out and sweating 
I’m really scared... high wbc count and elevated platelet count...
