Increased Analegride Dose - Heart Related Side Affects

[Mishie14]

Diagnosed in April with ET-Jak2. Started on Hydroxurea that got my platelet count down but after short while along came uncomfortable side effects plus highly elevated liver and kidney values in blood tests. Switched to Analegride 1.0 mg twice per day which allowed liver and kidneys to stabilize but platelet count creeped up. Two weeks ago Hematology advised to double Analegride to 2 mg twice per day to again focus on reducing platelets. Within a day I had heart pounding after about 30 min. of taking a dose. Also significantly increased leg and joint pain, backache and headaches. The pounding lasted about 30-40 min each time. I stopped taking the mid-day dose and called hematology. Dose changed to 1 mg every 8 hours per day. Lower dose and spreading it out over 24 hours reduced the severity and duration of pounding after dose but it did not go away. I reduced the mid-day dose to .5 mg. So, over 2 weeks the dose started at 2 mg per day, upped to 4 mg per day, lowered to 3 mg per day and I reduced to 2.5 mg per day. The pounding did not go away, remained reduced severity and duration. I am also taking blood thinner, blood pressure reducing, B-12, low dose aspiring and a statin as preventive measures. Anyone experience heart pounding with Analegride as the dose increased? Will the heart pounding go away after few days? Starting to question MPN competency of my hematology. Thank you for helping hand.

[EPguy]

Has your Dr discussed the option of interferon (Pegasys)? It is recently more recognized as an effective option for many MPN patients, including for ET over anagrelide.

You can also check whether you might qualify for the bomedemstat trial. This agent is looking effective for many on PLT control.

clinicaltrials.gov/ct2/show...

[Mishie14 in reply to EPguy]

no, that’s why after reading topics in this site I am questioning what my hematology is up to. Talked with nurse practitioner about the latest reaction and she stated since I didn’t react well to hydroxy and now to increased anagrelide that options are limited! Thank you for suggestion. I will definitely explore.

[JackLina in reply to Mishie14]

I reacted badly to all previous options but I have been great (despite some side effects) on Pegasys and my platelet count came down quite quickly. It has now stayed within normal range for over 12 months. I have never dosed more than 45mcg.

[Mishie14 in reply to JackLina]

very happy to see this kind of positive result. Good for you and thank you for sharing.

[Wyebird]

hi, I started on 1 anagrelide a day in addition to Hydroxicarbomide. The hope was to stop the hydroxi. Two anagrelide a day and I went all light headed. I had to go back to 1 plus hydroxi.

Not many people can cope with anagrelide.

Maybe a combination would suit you.

[Mishie14 in reply to Wyebird]

thank you for suggestion. I will be following up tomorrow with hematology. I think they lack MPN experience.

[Wyebird in reply to Mishie14]

alternative is Peg. I love it. Good luck

[Ratton]

I take Anagrelide 2 times a day have been for 2 yrs-no problem !(I am an elderly woman of 77)

[Mishie14 in reply to Ratton]

At what dose? I tolerate 1 mg two times per day. It is increasing the dose that causes distress. Have you experienced an increased dose?

[Redsab7]

Finally someone else experiencing what I have! Was diagnosed ET j2+ 3 years ago and started on hydroxy but could not tolerate at all. Switched to anagrelide 0.5 od and platelets started to drop but after time plateaued and rose again. Haematology consultant instructed me to double the dose but my heart rate rose and palpitations wouldnt go away for hours, very uncomfortable,even went to a&e a couple of times as couldn't reduce heart rate - stuck at 130bpm!! So I refused to double dose again. He did refer me to UCLH for second opinion and what meds to start next. My trust only prescribes hydroxy and anagrelide. Then COVID hit and UCLH refused my referral. So we decided to watch and wait on the dose of anagrelide I can cope with. I work full-time and need to maintain a quality of life for my own mental health. Balancing the risks of platelets rising. I'm on daily 75mg aspirin too. Platelets fluctuate between 560 and 780. BMB showed minimal fibrosis so that's good. But I don't know whether to pursue the London hospital referral again or stick with lower dose of anagrelide. I tell my consultant about symptoms of palpitations, headaches, itching and he is very dismissive, sue xx

[Mishie14 in reply to Redsab7]

thank you for sharing! Feels comforting to know I am not an oddball contrary to how the nurse practitioner made me feel. Messing around with heart side effects is down right scary but she didn’t respond as if it really was something to be so concerned about. So is having a blood specialist who is apparently not clued in as much as I was told to MPN. When first diagnosed she said interferon is not a preferred treatment and neither is stem cell therapy outside of most severe cases. Mine was caught very quickly though by chance blood test for different issue. I have no fibrosis and until taking ET drugs had no issues with liver and kidney. Posts in this site are the most informative source of info. Thank you very much.

[hunter5582]

Others have already pointed out that there are more options than hydroxyurea and anagrelide to treat ET. Like you, I was intolerant to and refractory to hydroxyurea. I have done much better on the interferons (Pegasys, Besremi). The IFNs have been more effective and easier to tolerate than HU for me. Do note that we are all different on how we respond to these meds.

You are correct to think that you may need to seek MPN expert care. Most hematologists have little experience with MPNs. Optimal MPN Care requires input from a MPN Specialist.

mympnteam.com/resources/why...

voicesofmpn.com/mpn-blog/wh...

Here are two lists of MPN expert docs and centers.

mpnforum.com/list-hem./

pvreporter.com/mpn-speciali...

All the best to you moving forward.

[Mishie14 in reply to hunter5582]

thank you very much for helping hand. Excellent info sharing by folks who know first hand about these topics.

[GK40]

I take anagrelide and did experience some side effects at first. Was switched to hu which was awful and after refusing to take it after suffering tia abd more am now back on anagrelkde and couldn't be happier!!! It's worth progressing

[Mishie14]

what dose anagrelide did you stabilize on? Did you have heart dude effects and if so how long did they last? Thank you for helpful information. Hope you continue excellent response to this drug.

[Exeter21]

ask for interferon to be considered I had bad experience on other’s & palpitations etc. However doseage plays a big part as our bodies all different. I am currently having my interferon doseage reduced to cope with side effects . Unfortunately some Drs assume all our bodies are bullet proof so you need to monitor yourself & control your treatment. Or as I did contact MPN expert who has taken control sensibly . Julia 👍

[ts75]

When I started ana I also had heart palpitations but it went away after about a week or two. It does come back if I have too much alcohol and recently when I was on antibiotics. It eased my mind to have ekgs done! Now I’m very happy w anagrelide but will switch to interferon soon as I’m “only” 45…

[Mishie14 in reply to ts75]

I felt so uncomfortable on double dose I stopped it after 2 days. Has lingering though milder effects for 3 days. I have not talked with cardiologist, will tomorrow. Thank you for sharing your story. Another data point is helpful.

[stillkicking]

I have found anagrelide very helpful. I was on hydroxyurea for 2 years, but it never succeeded in bringing my platelets down to the "normal" range, and I was troubled by chronic mouth ulcers. I had a short time on interferon and felt better than I did on hydroxyurea, but my white cell count rapidly got too low and also I developed eye inflammation so was unable to continue with it.

My haematologist thought that I would find anagrelide problematic, but it has worked for me. I take one mg of anagrelide morning and evening. It took a few months for my platelets to get below 400, but they range between 350 and 450 most of the time now. I had trouble in the few weeks of taking anagrelide with a pounding heart 30 minutes after taking the pills, but this problem did resolve itself.

I realise that your dosage is twice as high as me and we all react differently to these things, and I do hope that things improve for you soon.

Best Wishes,

Peter

[Mishie14 in reply to stillkicking]

thank you very much for sharing. It is so good to know what has worked and not worked for others. Best wishes to you.

[theminataur in reply to stillkicking]

Hi Peter,

It's good to see that you are still alive and kicking and have found a medication that works for you and that you can tolerate!

BestWishes,

Caroline

[stillkicking in reply to theminataur]

Thank you Caroline

[lizzziep]

I was on hydroxy for 3 years then developed an allergic reaction to it so was changed to Anagrelide, for the first few weeks I had palpitations, these gradually lessened and now I only get them occasionally (about 2 hours after taking it). I was on 4 a day (platelets in normal levels) but have become extremely anaemic so now reduced to 2 per day, plus an iron infusion, platelets have increased though. I find doing deep breathing helps with the palpitations. Also now I’m more used to them they’re not as scary. Hope all goes well for you.

[Mishie14 in reply to lizzziep]

thank you for sharing how you handled the side effects. Great idea. Best wishes your treatment continues to work.

[stillkicking in reply to lizzziep]

Hi Lizzie,

Sorry to read that you now have anaemia, I had a really bad year of that last year. Investigations found that I was quietly bleeding from somewhere in my small intestine and the daily aspirin that the haematologist insisted I took plus the anagrelide were at least partly to blame for this "leak". I had 3 iron infusions over the year, and finally turned things around myself when I ignored orders and experimented with not taking aspirin for a few days... Suddenly my red counts started coming up again and I avoided iron infusion number 4 which had been immanent! I now take aspirin every 2 or 3 days, and plus daily iron supplements and manage to just and so keep at the lower end of "normal", which is much better than it was! (I did let my GP know what I was doing regards aspirin once I saw the levels picking up). I don't know if you have to take aspirin and anagrelide together, but it might be worth querying this if that is the case.

Best Wishes,

Peter

[lizzziep in reply to stillkicking]

Yes I do take Anagrelide and aspirin. I’ve had investigations previously to look for bleeds but nothing was found. I’ll find out whether the infusion has worked next month. Haematologist said the Anagrelide was contributing to the anaemia which is why the dosage was halved, that did help but my platelets have gone up again. Glad you’re feeling better.

Lizzie

[stillkicking in reply to lizzziep]

It is a frustrating time for you, it is no fun being anaemic. My own bleeding issue was only found on the third attempt, I had been peered at both ends as it were, and when nothing was found that way I was given a little camera to swallow which recorded its adventures, and found the leak through some abnormality in the small intestine. I suspect that anagrelide is also playing a part in suppressing my red count numbers and I skip along right on the boundary of "normal" and anaemic even when not actively bleeding! I hope your infusion has topped things up for you, I found that they really knocked me around for a few days after having them. Best Wishes, Peter

[lizzziep in reply to stillkicking]

Thank you. I can’t say I feel any different after the infusion! I didn’t sleep well the first two days, but that’s nothing new. I’ll find out if it’s worked next month. Still waiting for an appointment for the ultrasound.