switch to Anagrelide..anything I should know ?

[CraftySpider]

Hi, I have finally managed to persuade the haematologist to let me switch from HU …( which I have been taking for almost 20 years , for primary MF ) to Anagrelide…in the hope that some of my symptoms of bone pain, GI issues, wipeout fatigue & hair thinning may improve ..although he doesn’t think any of these are down to the HU !

I was just wondering if any of you have made the same switch ? What dose were you put on ? and what side effects, if any, to be aware of ? Did you get any improvements ?

Also , one more question…is Anagrelide an immuno-suppressant like HU…if not would it still be as important to get as many Covid vaccinations ? Thankyou in advance.

[nodmeister]

I had severe breathlessness after about 10yds, it was scary. Good luck, I hope it works for you.

[CraftySpider in reply to nodmeister]

Thankyou and sorry to hear it didn’t work for you.

[ainslie]

I don’t know much about Anagrelide but seems most docs aren’t huge fans of it, I also read it can cause heart problems. It’s a bit concerning your doc doesn’t recognise your symptoms could be fro HU. In view of the above it would seem a good idea to get a second opinion ideally from a MPN expert. You need and deserve the best treatment for your primary MF.

[CraftySpider in reply to ainslie]

Thankyou for your reply, most of the haematologists at my local hospital don’t seem to consider that their drugs cause side effects ! ..so good to come here and get proper “ real life” experiences !

[hunter5582]

I would second the thought from ainslie that you need to consult with a MPN Specialist. It is concerning that the doc seems unaware of the well known adverse effects of HU. Normally one would consider a switch to one of the JAK-inhibitors (e.g., Jakavi) for MF in this situation. There may be other options as well.

Here is a list of MPN-expert docs for your consideration. mpnforum.com/list-hem./

[CraftySpider in reply to hunter5582]

Thankyou for the list, although with little income and no transport, I am not really in a position to see an MPN specialist for now.

I have found that nearly all the haematologists I have seen over the years seem to dismiss the side effects…which is why this forum is so helpful, being able to see other people’s experiences for real !

[hunter5582 in reply to CraftySpider]

The switch from HU to the IFNs to treat PV made a huge difference in both efficacy and my quality of life. Wishing you similar success in finding the right approach for your MPN treatment. I would suggest that it is worth doing whatever it takes to consult with a MPN Specialist. You may be able to do most or all of the consultation virtually.

All the best.

[CraftySpider in reply to hunter5582]

Thankyou, great to hear the switch worked so well for you.

[Smithjoa]

Anagrelide only reduces platelets. It is very good at that and I was on it for years along with venesections to reduce red blood viscosity. I have PV. A long term or high dose regimen of anagrelide can cause rapid heart beat and heart palpitations. You can control this by dosage and breaks from taking it. Some people have more trouble than others. However, it is no use at all except to reduce platelets. I found HU impossible. It made me feel sick all the time and I didn’t take it for long. I found anagrelide easy to manage.

[CraftySpider in reply to Smithjoa]

Thankyou, that is good to know

[gset]

I agree it’s best to speak to MPN specialist about it for you - everyone is difference so please bear that in mind when reading replies. My team checked my heart and lungs before putting me on anagrelide. However as it is more targeted than HU all my fatigue and aches from that and hair thinning went away after the HU worked its way out of my system. I was told it can take 6 Months for that to happen. I have been on it 6 years and wish I could have started it earlier. I still get disease symptoms but much less and platelets well controlled too. Best of luck with it.ps I was still advised to get all my covid jabs

[CraftySpider in reply to gset]

Thankyou, that is really helpful to know, I had no idea it took so long for the HU to work its way out of the system…and yes, trying to get a Covid booster now.

[Wyebird in reply to gset]

thrilled anagrelide works for you. I was so hoping it would for me because of hair loss.

I’m on Peg now and just cope with hair loss

[gset in reply to Wyebird]

peg didn’t bring my platelets down even on higher doses - we are all different . Hope it goes well for you as it appears to be really good for lots of people

[Wyebird in reply to gset]

oh no you must be in a tiz. I really hop anagrelide works for you

[gset in reply to Wyebird]

all good been on it since 2017 and it’s really worked for me. Thanks

[Mishie14]

I have ET JAK2. I did not tolerate Hemo doctor first choice of HU at all. The side effects ruined my quality of life. Switched to anagrelide after a month off HU. The side effects from HU still hung around but not as severe. Anagrelide started 1 mg twice per day. Did that for 3 months to slowly adjust. Was going good until doctor added another 1 mg mid day. So at 3 mg per day started to feel a bit uncomfortable but mostly OK. Another 3 weeks to adjust and she changed to 2 mg twice per day as platelets were not going down. Within hours on 4 mg per day I was feeling heart palpitations, fast beating and skipped beats. Usually Started right after taking the drug but also triggered by simple exercise walking my schnauzers. The effects usually subsided after a couple hours. Cardio had me wear a Monitor for 3 days. I noted every time I took dose, ate, exercised or had cardio symptoms. It was scary. I was afraid to take the drug, high anxiety on top of side effects. Enough of that. I was off anagrelide. Cardio issues stopped. Took nearly 3 months off of ET drug before starting peginterferon. Nominal side effects at 45 mcg with slow platelet reduction. I am fine with that.

re vaccines, when I was taking anagrelide I was approved for a Pfizer Covid booster and month later for the annual senior flu shot. the latter caused a very sore injection site and 24 hours of flu like misery. Not proven if flu vaccine or anagrelide caused it.

Re cost, HU and anagrelide are similar relatively low cost copay with my insurance. Peginterferon is expensive and higher copay though also mostly covered by insurance. I am on US Medicare with add on coverage for gaps. So, as noted elsewhere we react differently to drugs, need to have an MPN knowledgeable doctor on your team, and speak up for yourself. This forum is excellent for getting real life info. Knowledge is power. Stay safe!

[CraftySpider in reply to Mishie14]

Mishie 14, Thankyou for your detailed reply, I am also starting on low dose and hoping they won’t need to increase as my platelets are 460 atm. I am in the U.K., so cost not an issue…have been told it can take 6 months for HU issues to go, so will be interesting to see. I am a bit nervous about starting a new drug..but also remember being nervous 20 years ago when I started the HU !

[Wyebird]

hi, I tried to switch from Hydroxicarbomide to anagrelide but my body couldn’t take it fully. I was ok one 1 a day and for a few weeks 2 a day then I became light headed and had to balance myself by leaning against the wall.

Eventually, I needed up on 17 hu and 9 anagrelide a week. My symptoms didn’t improve neither did the thinning hair.

I’m now on Peg. Im loving it despite the worsened hair loss.

[Windy51]

hi I was on Hydrea for two years i was putting on weight and my hair was falling out and very nauseous I changed to Anagrelide I don’t get nauseous yet pulpation not to bad I take two a day my hair not to bad I think I made a good change so far

[CraftySpider in reply to Windy51]

Good to know that you are doing well on it..fingers crossed it will work for me.