Essential Thrombocythemia: Looking for information and support

I forgot to mention that my Bone Marrow did show JAK2 mutation back in 2015. I do have sore in my mouth almost continously but not sure if they are from Hydrea or my asthma meds (I rinse mouth always after using inhalers) so I feel they are from the Hydrea, but are tolerable as I know side effects of some chemo are much worse.

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.

Thanks. I am new to this and definitely want to see the amin discussion so you may point me in the right direction anytime. The main changes are that either the Hydrea is not working as it use to OR he fact that I have had leg pain for about 6 mos. Originally, we thought it was sciatic problems and my PC doctor sent me to Physical Rehab for 2 months. The Physical Therapists told me I should go back to my doctor and see what else was going on. So, I was sent to a pain specialist. Limited results and for a very short time. He referred me to an orthopedic doctor. I have had some steroid shots and my oncologist thinks that is what has driven my platelets back up to a dangerous level. She has not changed y dosage of Hydrea yet but I go back the 14th for more lab work. I have been reading more about ET ad find that my leg pain COULD BE from the ET, possibly morphing into Myelofibrosis. I was walking 2 miles a day months ago and suddenly my legs were just hurting and I was unable to walk long distances. I am on a walker now, and am really frustrated because no one has really been able to tell me why I have leg pain, all the way from hip to toes. I do have MILD arthritis, for which I recieved a steroid shot. Some success. But still a lot of leg pain. I am looking for answers. I do not merely want to cover up the pain, at least not until I find out why I am hurting so much.

My platelet count was 1,225,000 when I was first diagnosed in Venezuela., S.A. My hematologist there was very good and the next day had me on Hydroxyurea, 5 caps and gradually down to 2 a day, which has controlled me at about 380,000 - 420,000 since mid 2015. Howevr, lately they have crept up with same dosage to almost 700,000. Not sure what is going on. ALso have a lot of leg and back pain. I have had Physical Therapy, MRI's and all kinds of things but pain still here. 6 months ago I was walking 3 miles a day. Suddenly I can hardly walk. Looking for answers. Got to Oncologist in 10 days for more blood work to see how it is doing. Still taking 2 Hydrea a day. Concerned about possible morphing into melofibrosis. Has anyone out there had their ET morph into leukemia or myelofibrosis?

So glad to hear you are not having symptoms and it has not morphed into leukemia. My daughter, was on a low dose of hydroxyurea for 5 months (no real side effects) - her platelets went from 1.5 million to around 800,000. Two weeks ago her dr changed her to interferon. She does not hav JAK2. She has CALR. We are waiting to see how the interferon works. Thanks for posting it helps me to hear from other people loving with ET.

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.

@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.

Hello @esperanzam, welcome to Connect. You may noticed I moved your discussion and combined it with an existing discussion with the same title. I did this so the other members discussing essential thrombocythemia would see your post and have a chance to respond. I also did it so you could read through some of their older posts as well. If you are replying by email, I suggest clicking on VIEW & REPLY so that you will be brought to the new location of your post.

@esperanzam, if you are comfortable sharing, what are some of the changes you are dealing with?

Just would like to hear from others out there with this diagnosis. I was diagnosed in early May, 2015. Have been controlled till now with Hydrea but having some changes in blood work and other issues and would like to hear other's experiences.

Hi Misty45,
Given your report out on Hydrea & the fact that you’ve been talking it for 20 years, do you take it daily? Do you anticipate take my it for the rest of your life? While managing it for 2 decades, have you had any “episodes” (stroke, clot or heart attack)? Of course I hope not. I am asking to get a sense of the drug’s efficency?
Deeply grateful that you’re forthcoming and willing to share details of your personal experience. Thank you always.