Update

[wendycu]

Hello everyone I hope you are all doing well, it’s been a while.

My blood platelets have gone down (great news) other cells are up a little.

It’s been 6 months trying Anagrelide with reducing Hydroxy. I’ve been ok but getting heart palpitation, the doctors have agreed to keep the tablets the same for 2 months. After 12 years they are starting to listen to me and what I want.

I’m waiting for my ECG results to come back.

I’ve also had X-rays on my knees, I have mild arthritis, which I knew I had 8 yrs ago, it’s still the same now to then.

But I was told to loss weight.

I told the doctor I have lost 3 stone in 2 and 1/2 years. He replied “ that’s why your arthritis hasn’t got any worse, keep going.”

I don’t mind trying to lose more but it comes off the areas you don’t want to.

[Osteomyelio]

Why are you be switched from hydroxyurea to anagrelide?

[wendycu in reply to Osteomyelio]

I’ve been on 3 tablets a day of Hydroxy for 12 years, they are coursing making me to have anemia. I’m very tired every day. The doctors what to drop the Hydroxy and up the Anagrelide. They believe it could be the Anagrelide making me have palpitations. So they are leaving my tablets at 3 day of 3 tablets/ 4 day of 2 tablets of Hydroxy. 2 a day of Anagrelide.

I found it hard to make my mind up what I wanted to do, so I went for it, the doctors said it might not work.

[Anag]

Hi Wendy, Not too many here take Anagrelid. I’ve been on Anagrelid, since my diagnosis 20 months ago. 4 capsules max. If I don’t spread them throughout the day, I get palpitations. When I was on 6, Taken two, 3x per day instead of 3 and 3 and I thought my heart would jump out of my chest. I could hardly breath properly. I then put them 1x6 per day and it was only a tad better so I stopped. 8 months in, I collapsed on the stress test (on bike) after 3”, so we did a CT. No one believed it was Anagrelid. My CT was absolutely clear. The pain the I was having was no pinpointed. I’m sure, even though I hardly feel it, the med is slowly and steadily doing something to my heart, because I’m generally getting weaker and more tired. What’s really stupid is that I can’t take interferon because of my Hashimoto Thyroiditis and I can’t take HU because of my inborn anaemia. Nevertheless, I’m contemplating trying one of the two in the fall. Could you inform me about your platelets before and after Anagrelid/HU and how much Anagrelid and HU you’re taking and your goal?

I lost 2.5 stones in 18 month due to change of eating habits and they made a huge difference in me. My orthopaedic problems also got much better. Looking forward to hearing you info. It would be great to exchange notes. Cheers. Anag

[wendycu in reply to Anag]

It started with a blood clot in brain 2005, I had 2 hours to live. I got through it. 2007 I was diagnose with E.T with platelet over 900,it took many years to drop the platelets. They got down I. The 400’s, but over the last 4 years they have been in between 600/400 and having anemia, fatigue, sore bones. I get B12 injections and I’m on folic acid to help with bone ache and fatigue. 2017 I found out I have myelofibrsis.

The hospital said it was their fault that they have left me like this for to long. That’s why they started my on Anagrelide. Platelets were in the 600’s last week down in the 400’s, but the white cells have not move.

They don’t want to give me more Anagrelide because of my heart.

I take Hydoxy

3 tablets 3 days a week, 2 tablets 4 days a week.

Anagrelide 2 tablets a day.

My goal hopefully to be taken off Anagrelide but I can’t see that happening.

I have took sugar out of my eating and I feel better for it.

Well done on you weight loss, it’s hard to do as I know hydro put weight on you.

You seem to be taking a lot of tablets.

I hope you can go back to see someone a tell them it is the medication that is coursing problems with your heart. Plus the information your get with the tablets tells you all the side affects and heart problems is one of them.

It would be nice if we keep in touch and let me how you are getting on. I hope my information helps, please get in touch if you need anymore.

Wendy

[Anag in reply to wendycu]

Wow Wendy! You’ve had a rocky road! Hard to believe that it took so long to get your thrombos down! How frustrating! Thank God, something’s working.

I’m a thrombos jumper. Despite very disciplined medication taking, I jump between 450 and 650. After some diarrhea in the fall, I jumped to 765 and that through me into my 5th might TIA. My doctor keeps me below 600, so that I don’t have to take more Anagrelid. If my thrombos start to rise, we will discuss adding a tiny bit of HU.

Generally, I switched to the AutoImmune Paleo diet two weeks after my diagnosis. I do the diet under a doctors care. The diet has changed my life. Histamine intolerance, incontinence, eczema, fatty liver, enlarged spleen, brain fog, swollen belly, depression, swollen lymph nodes and other symptoms are all gone. My nerves are also much calmer and I sleep better. I’ve also rid all GMOs, pesticides, additives and chemicals out of my diet, home and off my skin. It took a 1.5 years to slowly make the full change. Also, I’m taking 1/3 less hormone (now bioidentical) for my thyroid. Who would ever think that would be possible after 22 years???

I’m now getting all my amalgams taken out! Slowly! Despite so many precautions, I’m still feeling the mercury poisoning. This must get done though.

I am convinced that if I clean up my body and environment, my body will start taking care of itself and perhaps there will be a change for the better in my ET. Unfortunately, the stress with family and sudden changes of health do a job on my emotional health as does my body’s inability to detox properly.

Our health is really a delicate balance act and we must look at details to really be able to keep a check on our fatigue, palpitations blood cells, etc. Also what works do me doesn’t work for everyone. We are all a special creation with its own history and we must back up, check our history and ancestry and treat ourselves accordingly.

By the way, I only take 50mg Aspirin 3-4x/wk. on top of that, I take 60mg Ginkgo 3x/day. That keeps my blood viscosity in check. Now I’ve pinpointed the symptoms, when my bloods too tick or too thin and I adjust the Ginkgo to reduce or add 1-2 aspirin a week to thin my blood. I check my gums with floss for longer bleeding and try to recognize any form of numbness in the fingers or tinnitus in the ears to recognize sticky blood. It works.

Thanks for your info. Hope to have also given you info you could use. I wish you a great weekend! Anag

[clubdino in reply to wendycu]

I believe anemia can cause heart palpitations too. Especially with iron deficiency. I have had ET for at least 15 years and have been dealing with some pretty serious joint/bone pains. I'm 41 so it didn't seem normal for my age. I finally got to the point that I couldn't take the pain anymore because it was ruining my life and my doctor put me on Cymbalta and 12 hours later my pain was improved by 80%. I don't know if my pain was related to my MPN (blood teats for lupus and rheumatoid arthritis came back normal)...but all I can say is this drug has been a miracle for me.

[wendycu in reply to clubdino]

Thank you, I’ll ask my doctor about cymbalta.

I know bone ache is a side effect of E.T, that why they put me on folic acid.