Anagrelide!

[Juliet46]

Hello, After my platelets fell to 237 after treatment for bowel cancer a year ago, my platelets have slowly risen again to 637. I haven’t gone back onto medication yet but my haematologist says I can consider anagrelide rather than hydroxycarbamide. What is anyone’s opinion on this ? I’ve heard there can be horrendous side effects . - Thankyou!

[Arty16]

I was originally on Hu I had a terrible time with side affects. I changed to anagralide and I have had no issues. I was told about possible side affects and that usually after 6 weeks any sideaffects should go. Everyone is different u just have to find the medication that suits u.

[Juliet46 in reply to Arty16]

Thankyou for replying !

[SuekJ]

I swapped from Hu to Anagrelide a year ago. The main side effects for me are cardiac, I have irregular heartbeat, palpitations and inconsistent elevated heart rate, my haemo is wanting to take me off it and try peg although side effects for that are similar. Everyone reacts differently to these drugs, what suits one will not suit another so you may tolerate it well and have no issues. Good luck!

[SuET2017]

Hi Juliet

Anagrelide wasn’t great for me, however neither was hydroxy or interferon and I suffered intolerable side effects on all. However, I’m now on pegalated interferon, which has been great for me so far. I think it’s a case of trying treatments and seeing how it is for you. Each person seems to respond differently.

Sue

[Dianne-Guisborough]

Hi Juliet

I agree with Arty that everyone is diffetentvwith both their response to medications and their side effects . I was prescribed anegrelide by a locum Haematologist for a short time ( if I remember correctly, for only about a month) After about a fortnight on it I started feeling short of breath and had episodes of palpitations. As soon as I informed my usual Haematologist and explained my reservations after researching anegrelide, she immediately stopped it and changed me to interferon .

I had done some reading about anegrelide ( not google! but some professional papers my pharmacist friend accessed for me ) and I have to say, as a retired Cardiac Specialist Nurse, I was more than a little concerned about the long term irreversible cardiac effects , so was glad to be off it tbh.

Definitely do some reading and discuss with your Haematologist the benefits and possible side effects as well longt term effects of anegrelide plus alternatives that could be considered .

Hope this helps,

love Dianne xx

[Ratton726]

Had bowel cancer 4 yrs ago-platelets were 700 (but only recently noticed by professionals)am on Hydroxy but they don't seem to like me-severe outbreaks of eczema(which I'm prone to anyway)-eyelids/ on back etc etc-very uncomfortable!Have spoken to nurse who says stop them -said she will contact doctor and let me know outcome.(This is the 2nd time I have had this problem)!Have other skin condition LS-which has also flared up!Pleased about platelet count which has dropped to 500-after test this week!

Obviously readings still too high!

from Ratton 726

[Belgobrit72]

I started with a âgée life a few years ago as wanted to avoid hydroxy. Apart from a terrible headache the first 2 days I was fine for a few months but there was very little impact on my platelets. I then started getting palpitations at night. I eventually went onto hydroxy and this has suited me much more but as everyone says we are all different. All the best

[Wyebird]

Hi I’m on both. I started on hydroxi and was on that for about 3 years. Result- platelets rose meds rose

Bad luck- side affects - at first none but now I’ve about 25% of my hair and post ET heamoglobin normal before anagrelide it steadily dropped to 102-106. Plus list of fatigue.

Anagrelide has stabilised my platelets and it’s very early days only managed to drop two hydroxi a week now on 15. Heamoglobin is now 906.

Initial dose of anagrelide 7 then 14 a week. Very light headed had to reduce to 7 now back up to 10 plus hydroxi.

We are all different. We all respond differently. Personally the thinning of hair hurts me a lot. On that basis I’d rather anagrelide only.

If you go on anagrelide introduce it very very slowly. Good luck xx

[tessa46]

Hi Juliet

I am aged 71, JAK2+ET diagnosed 3 years ago after a minor stroke. long history of side effects from drugs. I refused hydroxy for that reason and after research managed to get Pegasys Interferon, 45mcg a week. This was great for 18 months and I felt really well, then I developed a retinal occlusion, cause unknown, but my consultant took me off Peg because he felt this was the most likely cause. I am now on Anagrelide 500mcg a day. It has stablised my platelets around 500 & consultant feels this is acceptable. I do notice heart palpitations but not too bad. As others have said I think we all react individually, the main learning for me is to stick with as low a dose as possible, whatever drug you are on. I hope this helps.

[Anag]

Hi Juliet,

Everyone reacts different on each drug. Here’s my story. Anagrelid did a great job on lowering my platelets, but there are side effects like with HU and Interferon. Since I have an inborn anemia, HUnis out of the question. Since I have Hashimoto Thyroiditis, Interferon is out of the question. Therefore, Anagrelid wins. With me, it causes a strong heartbeat, really pounding out of my chest. But! Only when I take 2 pills together or more than 3 a day. The worst was, when I was on 6, since the doctor wanted my platelets in the normal range, which I now think was a ridiculous thing to do. With 4, each one stretched out during the day, I was fine for 1 1/2 years, with platelets around 500. Then some palpitations started again. Now I take 3, my platelets hover around 600 and I feel almost completely normal.

Important. Anagrelid hurts our collagen production, which affects not just the skin and hair, but EVERY organ. To counteract that, I simmer organic beef or chicken bones for 24 hours, which make a beef broth full of minerals and .....collagen! I cook 3 kg of bones to 5l water. I filter and while at 100 degrees, I put the broth into jar and when cooked into the fridge. I have enough for 6 weeks. Anagrelid is heavy on the liver, therefore, I put a small towel drenched in strong sage tea on my liver and I cover it with a hot water bottle for 1/2 hour before I go to sleep once a week. This purges the liver and gets rid of all Toxins. Don’t do this if you have constipation, else your gut will reabsorb the toxins. Cranberry juice will help your kidneys, which also get hurt by Anagrelid. By the way, all these meds for MPNs do a job on our liver and kidneys. Im also on the auto immune Paleo diet and eat organic as much as possible, which keeps me quite healthy, much healthier than I was before my diagnosis. Unfortunately, we live in a very toxic world.

My opinion, try the Anagrelid, spread the pills out and take them during meals. This will help them also be more efficient in reducing your platelets. Hope to have helped. Anag

[hunter5582]

One question to ask is whether cytoreduction is indicated at all with platelets at the level they are at. There is no correlation in risk of thrombosis whether platelets are at 500 or 650. For some (me included) it is actually risk of hemorrhage that goes up when platelet levels rise. The MPN Specialist I see does not favor "sanitizing" blood cell numbers. He looks at the actual symptoms and problems the MPN is causing and bases recommendations on the actual risks and needs of the individual patient.

You did not mention whether you have ET or PV. Have you actually had any MPN sequalae such as DVT, TIA, stroke, heart attack, splenomegaly, etc. ? Age is also a consideration in determining risk and treatment. So is other co-occurring medical conditions.

There are some different ways of thinking about how to approach treatment for MPNs and even the "MPN experts" don't agree. The reality is that we each have a unique MPN profile and our needs are not all the same. On size does not fit all. We also each react differently to the various meds and treatment options. Many hematologists so rarely treat MPNs that they just do not have the KSAs to provide optimized-individualized treatment. It really pays to consult with a true MPN expert (even though they do not all agree).

Hope you get it all figured out ASAP. All the best.

[Juliet46 in reply to hunter5582]

I haven’t ever had any symptoms from my ET. No strokes or blood clots. I wouldn’t have known I had ET if high platelets hadn’t been spotted on a routine blood test. This is why I hate the thought of going back onto medication, whatever type. My haematologist is an MPN specialist.

[hunter5582 in reply to Juliet46]

In the absence of symptoms that are a problem, it is debatable whether the putative benefits of chemotherapy for cytoreduction are worth the risks and adverse effects. Many docs do not consider chemo unless the platelets are above 1 million or if the patient falls into a high risk group for some other reason. (Age>65, hx of hypertension, significant splenomegaly etc.) Even the age issue is an area where the docs disagree. The MPN Specialist I see recommends against aspirin for patients over 60 years old due to the increased risk of bleeding. That is particularly relevant for me since my von Willebrand Factors always drop below norm anytime my platelet levels rise above 700K. Add to that - I just had a hemorrhagic brain tumor removed several months ago. Aspirin is not such a good thing for me as this tumor will likely return at some point.

Just goes to show - one size does not fit all. I have no idea what will really be best for you in terms of your treatment. Ultimately you have to make that decision based on what your treatment goals are and what you believe to be in your own best interests. Hope you get it all sorted out ASAP.

[lizzziep]

I had a reaction to hydroxy after being on it for 3 years and was changed to Anagrelide, I had a few palpitations at first - nothing too bad though. I've been on it a few years now, I still occasionally get palpitations about 2 hours after I take it, again nothing scary. Evrybody racts differently though but I would give it a try if I were you.Best wishes for your future health.

Lizzie