13 years on Hydroxyurea

[Doxy46]

Has anyone else been on Hydroxyurea this long? Do you have any side effects?

[katiewalsh]

Hi. Ive been on it 10 years. The only side effect I’m aware of is a rare mouth ulcer if I haven’t taken it properly. But they go away fast with treatment. Katie

[Doxy46 in reply to katiewalsh]

Do you mean you get mouth ulcers if you miss a dose? I think that might be what happened to me yesterday. I missed a dose three days ago. Woke up yesterday with a row of mouth ulcers. Today they are mostly gone.

[katiewalsh in reply to Doxy46]

No. I get mouth ulcers unless I first drink water, immediately take the pill while my mouth is still wet & then immediately swallow it with lots of water.

[beetle]

I was on it for 19 years with a short spell on busulphan in the early days. ET progressed to MF and I changed to ruxolitinib

[Mwalimu]

I have been on HU since Nov 2011 and am now 81. The side effects for me have been and are: debilitating tiredness, sore mouth/ulcers from time to time and am no longer so interested in food (age/HU - don't know!) My skin has also changed: herpes (had it since a toddler) no longer comes up; skin is drier and easily damaged. Hair is thinner and I think curlier. On the whole, however, life is manageable but am glad I don't have to work. Sallie

[Doxy46 in reply to Mwalimu]

Wow, you sound so much like me. I started in 2010, am 77 and have all of the same symptoms.

[Chemo01]

I’ve been on it for 23 years, side affects of skin cancers have only developed within the last 3 years on my hands and face and head I was a farmer since the age of 23 so even though I was careful and never sunbathed and covered up outdoor work has finally caught up with me, I was diagnosed with ET in my mid 30s I am now nearly 72 , I’ve just last week had my 18th skin cancer operation but hey ho that’s life I’m afraid my advice to ET sufferers is cover up slap on the factor 50 and get on and enjoy life

[Ladygolf]

I have been on HU for 17 years with a two year Anagrelide stint about 6 years ago. I’ve been taking 2 x 500 mg. per day but was on higher dose for many years. My platelets hover between 700-900 and I’m triple negative. My side effects have been fatigue, dry mouth, hair loss, skin and nail issues. My nails are so dry they crumble when I file them. My skin is really thin and my arms are covered in purple bruises. In the last 5 years I have had more squamous and basil cell cancers than I count. After having a large squamous cell removed from my head and a skin graft taken from my collarbone area I now have a large bald spot where the graft is. Finally today I was approved for Peg. I will start it Friday. Hope it works 🤞

[Lemonverbena]

hi doxy ive been on it 11 years and had a variety of symptoms over the years that wax and wane with no real clue as to why. yes mouth ulcers - sometimes lots. headaches, itching, fatigue, various vascular issues, skin cancers but am screend as had mmelonoma which they thought was not hu , but not 100% sure. always hard to pick out whats a side effect and whats the condition amd whats a result of high platelets.

however on the whole my system accepts it.

i take it with plenty of water too.

sarah

[russkatt]

Been on Hydrea for 4 years and now the side effects are just too much. Fatigue, joint and muscle aches, finger nails break at the slightest pressure headache, intestinal discomfort and hair is thinning rapidly now.

I will be switching to PEG June 1st. I am willing to try anything at this point.

[GK40]

Was on it 2 years. Awful side effects. Suffered a TIA, mouth ulcers, bruising, headaches,my whole body used to shake, my hands would tremble, feeling faint, upset stomach, stomach aches, bad back, dry skin, eyesight got worse to name a few

[Doxy46]

Thanks. I have all the same except the shaking, although I do shiver once in a while.

Did you ever get sharp pain in your eyes when you touched them? I have that 6-8 times a year. In the last two months I have started seeing black wavy lines when I am tired or sometimes when I wake up to go to the bathroom. When I close my eyes, the lines become white. They only last a few minutes. I've had this 3 or 4 times. Have you every had anything like that?

[Winchie]

I have been seeing wavy lines on clear surfaces. I don’t see them when I close my eyes. my eye doctor is wondering if it could be a cataract. It is in one eye, and I’m going to have the cataract taken out in a couple months. I never considered that it might be due to the medication. Has anybody else been seen wavy lines?

[Doxy46 in reply to Winchie]

The wavy lines I see are in both the eye that still has the cataract and the one that has had the cataract surgery. I'm wondering if they are occular migraines. This post talks about jagged lines, but mine have soft curves not sharp ones. sightmd.com/blog/jagged-lin...

[Winchie]

mine are not ocular migraines. I have had those also so I know the difference. I see these in the left eye when I look at a solid surface. I do not see them if I close my eye. They are short soft, wavy lines maybe a half inch.