Essential Thrombocythemia: Looking for information and support

I was diagnosed with ET back in January and started on HU in February. My doctor has me on 1000 mg everyday and my platelets are quite low now. I've had no side effects from the med that I can tell.

I do, however, have throbbing joints and shooting pains quite often, I notice them most when at rest. Has anyone else experienced this? If so - any solutions other than OTC pain relievers?

Thanks.

I am so sorry for all you are going through, Rose.

Hope someone with both ET and diabetes will chime in with some useful suggestions for you.

OXOXOXOXOXO

Sometimes being a Type A control freak pays off. Let me tell you about my strategies for organizing small closets ... Ha ha!

Brilliant!!

Pill organizer helps, but be careful handling HU. I put dry kidney beans in my organizer as place holders for the HU (one on Sat Sun Tues Thur and two on Mon Wed Fri). Then I slip the HU into a paper pill cup so I'm not touching it.

Kudos for rising above ET AND what I'd call the incompetence of your doctors . . .

Recently I began to use a weekly pill organizer. Now I never miss a dose of HU or aspirin.

I am 65 years old and seem to be a rare male here. Not surprising since Essential Thrombocythemia affects twice as many females than males. Also I guess most males are not big on 'sharing'. 


I was diagnosed with ET JAK2 in June following routine blood tests. 
I have already been taking 100mg of aspirin daily for a couple of years due to my family history of cardiac issues.
I have not had a bone marrow biopsy as my haematologist said it would not change the current treatment though I may have to have one down the track depending on my blood results.

Looking back, I have had intermittent headaches for no apparent reason and assume now they were ET related. Who knows?


I am grateful to you all for your openness and honesty and appreciate your comments and suggestions.

Hardly know where to begin! Diagnosis ET at 87ish…put on hydrox immediately with platelets # checked every two months. Number varies anywhere between high 400s and as high as 750-800 depending on amount of hydrox involved! The more hydrox the lower platelets BUT higher hydrox very much results in lower red blood = big time lack of energy! What to do? Yes, I’ll be 91 Sept! All I want to do is rest…. Now on only 500mg daily hydrox effort to raise red blood to acceptable level. Had been on 1500md daily.

20+ years ago my platelets were 1800.....out of the blue. No symptoms, annual checkup.Given Anagrelide (Agrylin then), 5 mg twice daily, did the job. Went from monthly, to quarterly to annual visits. Ten years later a new hemotologist (mine retired) did a very poor bone marrow biopsy (five painful attempts), switched me to HD, which threw all my blood off so I was seeing him weekly, had all kinds of other symptoms. Took me 8 weeks to get a DIFFERENT referral (oncology institue hematologist) who put me BACK on Anagrelide stating if it works why switch? So, if the aspirin is working, why switch? Doc likes my platelets to be below 450 so I try to make certain I'm taking meds as prescribed BEFORE blood work. Sometimes I forget in the evening and have mis-judged what I needed while traveling, didn't get back in rhythm before appointment. Oh, my. YES ET has not limited my life, thank God!