Hi. Hope everyone is well. So went to see my haemotoligist today for results. Not progressed to myelofibrosis but do have scarring on bone marrow. After years on Hydroxicarbimide she feels that I would benefit starting Anagralide as I am now on 2500 a day and platelets are esculating again 855 at last count. Question is
Has anyone changed to Anagralide and what were the outcome also does anyone take anything for Jak 2
Thanks again
JeniMac, my wife was changed after years on HU to Anagrelide because of a chance of cancer from HU from long term use. She tolerated Anagrelide but it was not a good controller of her high platelets. She was not made aware of stem cell transplants until her oncologist retired and was under the care of another oncologist. At that time she was told she was too old for a transplant!! A bmb showed progression to MF. Jeni, discuss with your oncologist about progression and if a stem cell transplant is appropriate for you as it currently the only cure.
Thanks I don't think she wants to go down that avenue yet and wants to change meds first
Yes I was taking 3 Hydroxycarbamide a day from 2006 until May 2018. After 4 months my platelets went sky high and I ended up in another hospital with a heart attack (2 stents). The doctor from the cardiac wanted to know why my platelets were so high (nearly 1000) and I explained about my medication. Anyway the surgeon obviously had a word with my haematologist, and I was put back on Hydroxy. Now my haematologist has decided to give me two Hydroxy a day with two Anagrelide. I am obviously very worry as I was supposed to be seen within 4 weeks and it is now coming up to 6 weeks. I am obviously very worried.
I switched from HU to Pegasys. PEG is the other first-line option to treat ET. For me, PEG is way easier to tolerate and more effective . Anagrelide is a second-line option. Jakavi is another second-line option. mpnjournal.org/how-i-treat-...
legeforeningen.no/contentas...
Thanks Hunter. I am going back in 6 weeks to chat about options so will see what she comes out with. I thought she would give me something for Jak 2. I have felt so tired and run down over last few years I really want my life back
I would say to go prepared to drive the discussion with the doc. It is your treatment goals and preferences that are the most important factor in making decisions. Assertive patients receive higher quality care. Passive patients do not.
All the best to you.
Thanks Hunter
Hi j changed from hydroxy to anagralide. Due to the fact that hydroxy was affecting my red and white blood cells aswell as platelets. Once they ensured hydroxy was out of system I started anagralide. I would say it took 6 weeks to settle. First 6 weeks I had headaches. But now fine platelets down to 250 lowest ever and side affects minimum compared to hydroxy. The doctors did check that I had no heart issues prior to starting.
I was changed to Anagrelide after getting a reaction to hydroxy after being on it for a few years without problems! I've been on Anagrelide for about 5 years now, when I first went on it I had a few problems with palpitations, now I only get them occasionally, usually around 2 hours after taking it. Nothing too bad though. My platelets are in normal levels and have been for a long time! I have ET jak 2 negative.
Hi can I be cheeky and ask what reaction you got to hu. I have been on it for 12 years and it seems to have stopped working my platelets are elevating again. My dose has been upped again. Until I see her to discuss new treatments. Hope your feeling well
Of course! I developed horrendous ulcers on my feet, VERY painful, would not heal despite various treatments from podiatrist, eventually saw a dermatologist, she said I don’t need to examine you it’s the hydroxy it’s well known for causing problems with skin, she contacted my haematologist and as soon as I was changed to Anagrelide they started to heal. The hydroxy did control my platelets reasonably well but the Anagrelide seems to work better. Hope all goes well with you.
Thanks I just seem to have a few good months then for no known reason my platelets esculate. I take my meds everyday same time I also how thyroid issues and asked if that could be effecting my platelets but can't say 100%. I'm a little concerned about changing but hu isn't working so need a new approach hope you are well
Hi I started on hydroxi then started to introduce anagrelide and come off hydroxi. All was well on 1 anagrelide a day but had to double it. I became light headed eventually only managed 9 a week along with 17 hydroxi.I stayed on that for about two years. Not many people can tolerate anagrelide.
A few months ago I started on Peg.
Thanks for reply. I have been on hu 12 years and last couple of years feel really tired and down right rough. Was on 2000 a day but platelets have decided to go up again now on 2500 weekends and 2000 Mon to Friday haemotoligist is thinking of changing my treatment as I'm up and down all the time
I’ve been posting my Peg journey as I’ve only been on it a few months and we are still tweaking it. Well worth asking about .Good luck x
Hi JeniMac,My story is almost identical to yours except I am triple negative. I was on HU for 12 years until it stopped working for me. My platelet count was rising while other counts were falling and neutrophils got dangerously low. I had a BMB to check for progression but thankfully there was none. I was switched to Anagrelide taking 6 a day. I had severe heart palpitations, headache, abdominal pains, cough, diarrhea. When I reported these side effects my hematologist said it was time to talk stem cell transplant. He would not refer me to an MPN specialist so I had my family doctor refer me. The MPN doc reduced the dose of Anagrelide to 4 a day and many side effects improved but not all. My platelet were lowest they had been since diagnosis. I persisted for 2 years but the diarrhea continued. My MPN specialist had me stop all meds for 2 months to make sure Anagrelide was the culprit and I felt great for those 2 months. So after the 2 years on Anagrelide he tried HU again and it worked. My platelets are steady around 650 ( about my norm since diagnosis) which he is not bothered by. I feel good, just tired, but am very glad I switched doctors because the MPN specialist said I definitely did not need a stem cell transplant. Going forward I’m told we can add a little Anagrelide to the HU if it starts to fail. My advice is that if you try Anagrelide start on a low dose and work up because the initial side effects are the worst and your body slowly adjusts to the drug. Everyone is different and you may not have any problems at all with Anagrelide. Good luck in your journey.
Thank you for your reply. I actual had my old haemotoligist saying are you sure your taken your tablets like I was stupid. I'm glad your getting sorted I have just changed haemotoligist so I will give her a chance before I look at MPN specialist
I am on $ x 500 Hydroxy and also take 3 anagrelide a day, no problems with this combination so far.
Hi JeniMac,I'm ET triple negative and had a fairly miserable time with hydroxyurea in the form of chronic mouth ulcers and sometimes throat ulcers. I could never get to a sufficient dose of hydroxy to control my platelets and have some quality of life. Tried for more than 2 years. Eventually changed to Anagrelide, introduced slowly whilst still having 500mg/day hydroxyurea. Eventually I managed to ween off the hydroxy entirety and keep the platelets to almost "normal" levels with 4 Anagrelide a day ( 2 in morning and 2 in evening). I now rarely have the ulcers, think far more clearly, and have few side effects. I initially had palpitations a few minutes after taking Anagrelide, but this went away eventually.
Whilst any drug has its own "baggage" I do like that Anagrelide actually targets platelets.
Due to other health issues it was hard for me sometimes to know what to "blame" when things went wrong. I developed anaemia this year, bad enough to affect heartbeat and make me short of breath and rather I'll, my instinct was to blame Anagrelide, or think that the ET had "progressed", but tests have shown that I have a slow GI bleed that is likely not drug related.
We are all very different in our response to medication and, unfortunately, each of us has to be a pioneer of sorts, embarking on our own adventure!
Wishing you the very best,
Peter
Thank you all we all want is a good quality of life. Hopefully I can get mine back
Hi, Jenimac, It’s so difficult to give advice about medication’s because we all react very differently. I am post ET MF and I’ve been on hydroxyurea, anagrelide, Jakafi, and Fedratinib on and off over the last 13 years. The one that gave me the most side effects was Anagrelide, But as you can see some other people on the site have had good experiences with it. So it’s really up to the individual as to how they react to start medications. I had the best reaction from Jakafi, but eventually it stopped working and it caused me to be anemic. In this disease, there’s no one size fits all.
I wish you all the best.
Cindy
ET with CALR+ type 2
ET and Pregnancy 
Hydroxyurea induced pneumonia 
Anemia on pegasys ET
