Anagrelide

[faith949]

My oncologist wants me to start anagrilide ASAP but I’m scared of the side effects I’m 35 with high platelets and doctors still haven’t diagnosed me or reason why I have it .

[francesb]

Hydroxy is usually the first choice but for older people, in your case I’d ask for Pegasys (pegelated interferon), I have read that this is preferred for younger people. If your platelets are not very high they usually do “ watch and wait” with just aspirin. I would see an MPN specialist if you are not already or ask for a second opinion, but definitely ask about Pegasys. Good luck.

[Arty16]

Hi I have E T Calr. I was only on aspirin until diagnosis was confirmed. I would wait until confirmation detailed blood tests can tell u followed with a bmb. I started in Hydroxicarbomide but it did not agree with me loads of side affects I could not function. I am now on anagralide and I have no issue with it at all. Everyone is different you need to find what is best for u. But you need to know what you are dealing with first.

[wendycu]

I’ve been on Hydroxy for 12yrs. This year the doctors told me that they want to reduce them and start me on Anagrelide. I was worried about the side effects.

So I told the doctor how I wanted to do it, I started this year taking one tablet every other day, for over 3 months, then 2 a day for another 3 months, fingers crossed I’ve been ok.

I have been getting acid on my stomach but I take the tablets before I eat to stop that.

I’m at the hospital today and I know they are going to reduce the Hydroxy and change the Anagrelide to 3 a day.

I was very scared at first like I was at the beginning 12years ago.

I told my self, “ I’ve got used to Hydroxy now I can do Anagrelide.”

I have a long way to go to see if it works for me, then again it might not.

My doctor said it is a marathon not a sprint.

I take 3 Hydroxy tablets a day

2 Anagrelide a day

300mg Aspirin a-day

And others. It’s a good cocktail of meditation.

Good luck with your discussion.

[Wyebird in reply to wendycu]

Gosh We day I though my 14 anagrelide and 17 hydroxi a week was high. I’m now on 10 anagrelide and 16 hydroxi. I became. Rey light headed on the 14 anagrelide so it had to be reduced. The good news is that my platelets reduced enough for me to drop one hydroxi a week . Fingers crossed, my next appointment will confirm if I m finally stable.

[Jmp89]

Hello!!! Hopefully I can be of some help. I’m 30 and was diagnosed when my platelets were at 1200 so my first hematologist put me on Anagrelide. I take 1mg twice a day. My counts went down to 171 in 4 weeks. So it does work! I havent had any major side effects. In the beginning I will say the heart palpitations were extreme, but my body got used to the medication. I try to take them when I know I wont be still because if you are, hearing your heart beat will tripp you out. However, I did seek a second opinion because after the initial scare from diagnosis I did begin to research on what medication is best. My current hematologist wants to switch me to Hydroxyurea, advising against Interferon because of the side effects. But, because everyone’s body reacts differently, I want to try Interferon and am gonna fight to at least give it a fair shot as it is the recommended med for our age group. I have met some girls through Instagram who reacted well to it and recommend it. And I met another who is on Hydroxyurea and says although it works, she wished she had tried Interferon first.

Do request a bone marrow biopsy. It will confirm the ET along with any mutations and give you peace of mind. I hope this helped! Feel free to message me any time! Or if you have Instagram to make the messaging easier, _julieee89

[faith949 in reply to Jmp89]

Omg thank u so much I felt so alone my doctor said mostly older ppl have this condition and I’ve been on hydroxy for 3 years my platelets are at 945 now ugh I’m gonna try anagrelide on Saturday while I’m not at work lol thank u ❤️

[faith949 in reply to Jmp89]

Also I followed u on Instagram I’m lida btw 🙂

[Andrew8]

I was diagnosed with ET in April 2016, and put on Hydroxy, but suffered extreme fatigue in December 2106, changed to Anagrelide, but fatigue continued until April 2017, when I was diagnosed with Atrial Fibrilation, after cardio hospital treatment and medication was re-diagnosed with MF, and changed to Jakavi. After two cardioversions my AF is now stable, with reduced medication. Developed shingles in August 2017, and some rash is still present but manageable with Aloevera gel. Platelet level stable at about 500, and spleen is only slightly enlarged. Still keep active, 70 , cardio rehab weekly, swimming , walking, etc, but some days just have to be a lazy one. Tend to do too much on the good days, but grateful for all the wonderful treatment at Aberystwyth hospital.

[Wyebird]

Hi faith, I don’t know where in the world you are but when my platelets were over 500 I went to the chemist for an iron tonic whilst waiting to see the gp as I was so tired. Then after eventually seeing a haematologist I had to wait about 6 weeks whilst an MPN blood test was done. Meanwhile my platelets continued to rise and lethargy and fatigue became worse. All along I thought well why don’t they just treat me for an MPn anyway, what have I got to lose. So in my circumstances I would have welcomed going on a low dose while waiting test results.

That way, maybe I wouldn’t have had to cancel my 60 th birthday party or my long haul trip to tour Thailand. Something I always think about as ‘going ape’

Party I no longer think I could manage . It’s just a dream as I no longer have my mo jo.

We are all different and all of our cases vary. Take on board all that people tell you. Question why they want you to start meds now. Then decide.

Good luck