Essential Thrombocythemia: Looking for information and support

Does anyone have this?
I have been having problems with total fatigue no matter how hard I try to do things I give out.
And my eye as well as right side of head

Does anyone have this?
I have been having problems with total fatigue no matter how hard I try to do things I give out.
And my eye as well as right side of head

Hi MaryLynda, I moved your question to this exiting discussion about ET so you can connect with others who have essential Thrombocythemia like @shenriq @claire39 @lefsequeen @sstillwell @zeffirino @mpt77 and @huronshores.

MaryLynda, it looks like your message got cut off before you finished it. Can you explain more about what is happening with your eye and the right side of the head? When were you diagnosed with ET?

Does anyone have this?
I have been having problems with total fatigue no matter how hard I try to do things I give out.
And my eye as well as right side of head

Susan, can you please clarify why your daughter was taken off Hydroxyurea and instead put on Interferon? I've worked with 2 hemotologist-oncologists, who made the recommendation of taking Hydroxyurea. Not sure if your daughter wasn't responding to Hydroxyurea? Did she switch to Interferon because Hydroxyurea is a lifetime commitment and Interferon isn't? I would appreciate knowing, understanding that while both drugs directly affect platelets, the Hydroxyurea is known for being well-tolerated, unlike the Intefeuron.
Whatever your daughter's situation, I am hopeful that she can be managed for the long-term.

Thanks for sharing your experience. My daughter, 39 years old) with routine blood test was diagnosed with ET. Her platelets were over a million. She was started on a low dose of hydroxyurea (June 2018). After seeing a specialist, she changed to interferon ( just received her 2nd dose). The change was due to needing to be on hydroxyurea for the rest of her life and her platelets were down to around 800,000. I also wonder about diet. The first dr said it would not change things. The second dr encouraged a good diet and exercise. Wishing the best for you.

I can identify with your statement of feeling like your a doctor's nightmare. I was diagnosed with MAC, which is a non-infectious lung disease, and I have had asthma, and multiple lung issues for years. So I have at least two rare disorders. 🙁 Up till now, I have not had any problem with the Hydroxyurea except for heartburn. I take Zantac for that. Also 3 medications for the asthma. Recently had a flare up of the lung congestion/asthma after my platelets and white blood cells have been pretty altered. Guess my immune system is affected. I was 64 when diagnosed. 68 at present. Been battling with leg and calf pain... sometimes it feels like my bones are hurting. For 6 months I have done everything they have suggested and still having pain.

@huronshores
High platelets, no clue until routine blood test. Saw Haematologist, on Hydroxyurea since May/18 and took about 3 months to lower platelets. 78 yrs old, active and reasonably healthy .. Some allergies, well controlled asthma and have had two past surgeries for sinus polyp problem. Polyps are treatable but not curable. Since an infection could affect platelets, I saw a specialist re sinuses. He said I may need another surgery to help with existing polyps but did not seem to think it was cause of high platelets. (However, in doing a bit of reading I have seen some studies that say people with sinus polyps show higher platelets?). Very hard to say what is correct. Also, asked whether diet could lower platelets somewhat. Haematologist said definite no. However, again in doing some reading, there is info that says certain foods can lower platelets. I am not happy to be taking Hydroxyurea, as while it can be used for high platelets, it sounds like it affects pretty well all cells in your body. Certainly have noticed side affects and all seem to match up with the info the drug store provided with the Hydroxyurea. So far the Haematologist has pooh poohed all side affects. I have another appointment coming up soon, so another blood test re platelets. Still thinking and not sure what I am going to do about this but not happy taking Hydroxyurea forever. No one wants to have a possible stroke, thrombosis etc as a result of high platelets .. But at the same time, Hydroxyurea can lead to other problems. Sort of like taking your car to the garage to get get new tires so that you will drive safely but then the wheels fall off! I am speaking only for myself here and not saying you or anyone else should follow my thinking. Part of me is influenced by my age and that makes me wonder if my remaining quality of life is going to be affected too much by the medication. I have a neighbour that told me she has been taking Hydroxyurea for years but I don't know the exact facts involved for her. I have been pretty lucky health wise and have not needed much medical care over the years, as compared to others in my age group. Did have one problem where I exactly listened to a Doctor against my judgment and that turned out to be a disaster. So forever after, I will be questioning and trying to pick up all the information I can on medical issues. Guess I am a doctors nightmare. Don't know if anything here helps but I am just sharing my experience so far.