Essential Thrombocythemia: Looking for information and support

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?

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.

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.

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.

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.

Shenriq, I believe the main reason the hemotogist-oncologists changed to interferon was due to her age and remaining on hydroxyurea for the rest of her life. She did not experience any severe side effects from hydroxyurea but was going to need to double the amount because her platelets were not decreasing as fast as her doctors wanted. Today she will receive her third injection of interferon. The first injection caused flu like symptoms for about a day. No real side effects after the second injection. She should have blood work soon. She was also given the choice of just no medication and just checking blood work. She had no idea her platletes were so high until routine blood work - no real symptoms. Thanks for responding.

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?

Ache behind eye , temple and bone behind ear.
Had eye exam and dr could not see any reason behind eye to hurt.

Did blood work and it's ok just shows some inflammation in the sed.test

I have had ET for about 3 yrs . Had bone marrow biopsy cause platelets so high.
Et and pv both were mentioned in report.
I have been on Hydroxyurea since . Platelets back in range but didn't know if that could effect right side of head.