SIDE EFFECTS OF ANAGRELIDE

[Heather270240]

Update from previous post. Saw Haematologist yesterday, unable to have Interferon, only option open to me is Anagrelide. What are your experiences of this medication please. I'm ET JAk2, take Aspirin, 15 mg Prednisone and co codamol or similar pain relief for spinal stenosis. At present take Ruxolitinib but have to stop it immediately. Good and bad comments re Anagrelide would be appreciated. Many thanks.

[SuET2017]

Hi Heather, My experience was that Anagrelide didn't suit me. The side effects I experienced were: heart palpitations for about 2 hours after taking each day, nausea, general 'jitters'. I also couldn't tolerate HU and am now on Peg Interferon 45mg weekly, which, for the most part, has been the best in terms of side effects, though not free from completely. Sue

[Otterfield]

I was on Anagrelide for two years, then later, combined with HU. I had side effects for about 3 weeks - headaches and palpitations- but then it was fine. I'm a bit concerned that you have been told to stop Ruxolitinib immediately - it's my understanding that it needs to be reduced gradually.

[Heather270240 in reply to Otterfield]

Many thanks Otterfield. You are correct and I reminded my consultant of it to which he said "if you wish". I will reduce slowly. Interesting that you seemed to have tolerated Anagrelide well I'm hoping I will be the same. What dose did you start on?

[Otterfield in reply to Heather270240]

Sorry, I don't remember - it was 20 years ago!

[Ratton726]

I have ET and Jak 2 -have been taking Anagrelide for 2 years-(could not take Hydroxy) bad reaction to them). I am 76 and a half)!I also take aspirin-am told I am asymptomatic with ET suppose I'm a lucky one.

But this is my 2nd type of 'cancer' as had Colon cancer 6 yrs ago!

Hope you'll find they help your conditions.

Best regards

[Arty16]

I am on anagralide. I could not take Hydroxicarbomide due to side affects. Anagralide prob for first few weeks had headaches etc but now it's great. Keeps platelets normal and sidseffects are nothing. Occasionally sore head and a bit of a fatigue day if I over do it. But compared to Hydroxicarbomide it's night and day

[JeniMac in reply to Arty16]

Hi ArtyCan I ask what side effects you had on hu. I take 2500 a day I was OK on lower dose but feel terrible on higher dose.

Thanks

[Arty16 in reply to JeniMac]

Hi. The side affects were many headaches fatigue bone pain but the main issue was lowering of.red and white blood cells they tried load of different doses it was same outcome. I could not function on it

[JeniMac in reply to Arty16]

Thanks I get horrendous headaches and also heartburn,hot flushes tideness and silent migraines I'm hoping to change onto Anagralide see if it's any better

[Arty16 in reply to JeniMac]

It worked for me. You side affects sound very similar to mine whole on hydroxy. But everyone is diff so good luck

[Heather270240 in reply to JeniMac]

I was on 500 X 2 daily for 4 years when it was stopped because of breathings problems.

[JeniMac in reply to Heather270240]

I have terrible heartburn and lots of headaches x

[jointpain]

My beautiful wife has MF and taking 3 Anagrelide daily, and one hydroxycarbamide every other day. She doesn't have any side effects from these medications.

[Gaithersburg]

Hello, I've been on Anagrelide for about 10 years and apart from fatigue occasionally I am doing well on it. I take 3 tablets per day and aspirin too. Hope this is of help to you. Lisa

[Tennismad22]

Hi HeatherI was on Hydroxy for seven years when my platelets kept rising. I have now been on Anagrelide for two years. It took me a little while to settle down after starting it as I had headaches and anaemia for a little while. However, that settled down after 3 months and I’m symptomless. I hope you react well to it.

Lindsey

[lizzziep]

I’ve been on Anagrelide for about 5 years, I had a few palpitations at first and get them occasionally now, but nothing to write home about. My platelets are in normal levels and rarely stray out of that zone. I take 2 in a morning and 2 in the evening, also on aspirin. I had a reaction to hydroxy after 3 years on it and was changed to Anagrelide then. Hope all goes well for you.

[Stripecat]

Hi Heather I was on anagrelide for a couple of years combined w hydroxy. I didn’t really have any side effects from the anagrelide.

Now solely on ruxolinitib.

[Anag]

Dear Heather,

I am 56 and have ET, CALR and take Anagrelide for 4,5 years already. I also cannot take the other two alternatives. For me, Anagrelide causes fatigue, skin problems (elasticity is going fast), and strong heartbeat (caused by Anagrelide blocking the heart's receptors for signals from the vagus nerve, which signals your heart to get into resting position, when resting).

In order to avoid the strong heartbeat, I take my 4 capsules during the day separately. 8am, 11am, 5pm and 9pm. Around 2pm, I detox my liver to help keep it functioning as well as possible.

I counteract the symptoms by taking high quality supplements:

CoQ10 complex 100mg daily in the morning

from Terra Nova (a fabulous English product-I live in Austria and am a huge fan of this company) Helps every single body cell function better! It strengthens the mitochondria in the cells, which are the cell batteries. So important!

Acetyl L-Carintin: 1500mg (3x500mg morning noon and afternoon). One can take up to 3g daily. When I exercise I take 4-5 capsules a day, before exercising. Do not take the other L-Carnitins because they dont cross the blood brain barrier. This amino acid helps energy levels and brain function! do not take after 5pm; you may have trouble sleeping. Since I take this, I am fully functional and the strong heartbeat is gone.

I also take a natural, buffered vitamin C, natural B-Complex from Terra Nova and 200mg of Magnesium. Never take chemical supplements. They are not properly taken up by the body and may accumulate and cause serious damage.

I see you take cortison and a pain killer for your stenosis. I try to get rid of as many chemical medications as possible. They take a toll on the body. I have 3 slipped discs in my neck, a bad knee from a ski injury and operation and a prolapse in my lower spine. I take 3 Turmeric capsules a day to reduce inflammation. 1600mg daily. It works wonders for me.

Be careful, Turmeric and Carnitine thin out the blood also. Therefore, I take 50mg aspirin instead of 100mg.

Hope to have helped. Anag