I was wondering how common it is to be on both of these at the same time, as I have since last summer. I am on quite high doses of both (plus aspirin) and my platelets still hover around the 700 or 800 mark. The side effects from the medication always seem worse than any symptoms of ET (for which I am not entirely sure I have really had any).
Combining Hydroxycarbamide and Anagrelide - MPN Voice
Combining Hydroxycarbamide and Anagrelide
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ETket
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I do not think that it is very common to be on a combination of hydroxycarbamide and anagrelide, though I am sure you are not the only person using this combination. It sounds like you have a treatment resistant case of ET. Given that the adverse effects of the medications is worse than the ET symptoms, it may be that you need a different approach to either your treatment goals, treatment strategy, or both. I would suggest getting a second opinion from a MPN Specialist on your case. Perhaps a trial of Pegasys, Jakafi, or one of the medications in clinical trials is indicated. You would really need MPN-expert input to figure out the next steps.
Wishing you all the best as you move forward.
Thank you. Having been diagnosed eight and half years ago (through an unrelated blood test, with platelets at 997). I’ve been on Hydroxycarbamide for most of that time. They did try me on Interferon for about six months or so at one point but my liver did not react to it well. The Anagrelide was introduced last summer, when despite increasing quantities of Hydroxycarbamide my platelets started increasing. I’m currently on ten anagrelide a day and twelve Hydroxycarbamide a week. I do not feel great on it (tiredness, heart palpitations), but I’m not sure the ET itself has ever given me any issues. As far as I know, my only risk factor is a single blood clot in a minor vein in my upper left arm that I had when six months’ pregnant (this was seventeen years ago and while my platelet numbers were within normal range - I made a request to the maternity hospital for my records for this time and therefore, presumably before I had ET).
It sounds like you may have a complex case of treatment resistant ET. Note that while you may have not had a diagnosable case of ET 17 years ago, the JAK2 mutation was likely already present.
Given what you report, you may actually be more at risk of hemorrhage should the thrmbopsytosis be uncontrolled. That is the odd part of thrombocytosis, we are at risk for both thrombosis and hemorrhage. That does not even count all the microvascular symptoms we can experience.
It would be a good idea to get your old records. I would definitely seek a second opinion from a MPN Specialist at this point. Just in case you have not seen it recently, here is a list. mpnforum.com/list-hem./
All the best.
Thank you. That’s something I’ll look into. I believe I have the CALR mutation (which is different from JAK2, isn’t it?).
If you have the CALR mutation then that is in some ways different than JAK2. Both mutations have similar impact in deregulating the JAK-STAT pathway and causing thrombocytosis. The CALR mutation carries a lower risk of thrombosis than JAK2. Suggest reviewing your specific risk profile with a MPN Specialist and basing your treatment plan on your specific situation. Meanwhile, you may find this presentation of interest.
youtube.com/watch?v=K5ZXdIw...
Thank you. I’ll take a look at that.
You are on a heavy dose of meds. Anagrelide can cause heart palpitations. You definitely need to see an MPN specialist.
You definitely need to see an mpn specialist. I have et. Started on hydroxycarbamide then anagrelide was added. My platelets were always around 700/800. I was on the highest anagrelide dosage for 7 yrs. I was diagnosed with secondary mylofibrosis in 2019. I don't wish to alarm you but, the high dosage did contribute to my second diagnosis. Please get specialist intervention. I am now on jakafi and hydroxycarbamide and stable. Good luck.
85+, ET since 2013, taking Hydoxycarbamide beginning in 2017, ankle ulcer after about five of those years. Had to stop the Hydroxy to put the coup de grâce on the ulcer. Decided on a balanced dose of Hydroxy and Anagrelide to try and minimize the side effects of each once the ulcer was healed. End result, we wound up once again proving the old "best plans" scenario. Just as we reached max dose I developed a lung problem that has yet to be resolved even though we stopped the Anagrelide and am now relying on the Hydoxy alone--which, btw, is working fine holding the platelet count at just over 300 by taking a gram and a half a day. Never been anywhere near this low since treatment began. All to say I'm not 100% convinced that the Anagrelide is the bad actor because I'm three months, more or less, down the road w/o it and the lung function, which passes all the breathing tests with flying colors, is still largely impaired to the point I have a real shortness of breath problem. You ever run across lung problems caused by Anagrelide?
Interstitial lung disease is listed as an potential adverse effect from anagrelide and hydroxyurea.
online.epocrates.com/drugs/...
online.epocrates.com/drugs/...
I have run across reports lung problems caused by hydroxyurea, as mentioned by others on the forum. This finding is in the literature.
Hydroxyurea can cause severe interstitial pneumonitis.[21] It can even occur after several years of initial treatment with hydroxyurea. If not diagnosed, drug-induced interstitial pneumonitis can lead to lung fibrosis and respiratory failure. The recommendation is to discontinue the drug. ncbi.nlm.nih.gov/books/NBK5....
europeanreview.org/wp/wp-co...
ncbi.nlm.nih.gov/pmc/articl...
ncbi.nlm.nih.gov/pmc/articl...
There is information in the literature about anagrelide and lung disease, but it does not seem to be as common. Perhaps simply because hydroxyurea is in more common use.
pubmed.ncbi.nlm.nih.gov/283...
researchgate.net/publicatio...
Given what you are reporting, I would suggest several things at this point. Consult with a pulmonologist to see if there is fibrosis in the lungs (see above warming). Get a second opinion on your MPN treatment plan from a MPN Specialist. Be sure to review what your treatment goals are when you consult. It is not clear why your platelets need to be that low. Some MPN experts now use 600 as a target when an absolute number is used. Some still default to the older protocol of 450. There is no linear relationship between PLT level and risk of thrombosis, and no particular value to having them near 300.
The understanding of MPNs has improved greatly in recent years. We have more treatment options now than just hydroxyurea and anagrelide. Pegasys is also recognized as a viable option and is preferred by some MPN experts. Jakafi is also an option in some cases. There are also new medications like bomedemstat and Besremi that are in clinical trials for ET.
The fact that you are still experiencing shortness of breath is a significant issue. Dyspnea is a common adverse effect from hydroxyurea even in the absence of interstitial lung disease/fibrosis. Suggest engaging proactively to review what is going on and consider all of your treatment options with an appropriate care team.
Do please let us know how you get on.
Thanks for the info, Hunter. I have visits pending with both my hematologist and pulmonary doc this month. I'll update if anything of interest comes from either.
Hunter noted the option for clinical trials. You may be well suited for the Bomedemstat trial of this report:
ashpublications.org/blood/a...
The PLT reductions have been good as seen in this plot.
"94% (34/36) achieved a platelet count response ≤400x109/L, without new thromboembolic events, in a median time of 8 weeks (Figure).".
The phase 3 trial is not yet started but could be worth discussing with your Dr.
PLT Bom
I was very interested to read your post. I am CalR positive and on 3 Hydroxy tablets daily at the moment. My dosage has been increased slowly but platelets are being stubborn and are still not far from what they were when I was diagnosed six years ago! I recently had an annual review with Dr Claire Harrison St Guy’s Hospital and she has written to my regular haematologist to suggest maybe adding Anagrelide to the mix although she has said she is happy as long as my count stays below 600, which it does, but only just!. I wonder whether this combination is a new finding from some of the trials maybe?
Like you I had been on Hydroxycarbamide for quite a number of years and they had been keeping me in the 700-800 platelet range. Last summer they drifted up to 1200-ish and the haematology team gradually upped the Hydroxycarbamide dose (I think it was about three a day too - though my dosage has changed so often I’ve forgotten!). They initially switched me to just Anagrelide, but that did not have much impact, so reintroduced some Hydroxycarbamide. After several months on both I told them how rubbish I was feeling (shattered, breathless, heart palpitations) and they reduced the Hydroxycarbamide a bit. I am now on fortnightly blood tests, but they are increasing the Hydroxycarbamide once more (apparently I’m on the maximum Anagrelide dose) and I can feel the impact again. How much Anagrelide do you think they will start you on?
I have a face-to-face haemo appointment next month to discuss this, but to be honest I’m happy to stay as I am because I have no side effects at the moment (although I did have to begin with, they have now settled). Fingers crossed they will agree that for me, under 600 is okay 🤞
Good luck with the appointment. Like you, I had not had much in the way of side effects or ET symptoms on the various different drugs I had tried, so it all feels a bit abstract, especially when we got put on the Clinically Extremely Vulnerable list. Presumably there has to be a balance between reducing risk and maintaining a good quality of life.
My what a trip you are on! My wife is on both hydroxycarbamide at one tablet a day and anagrelide at two a day. This has changed a little over the past five years. Until recently she was on three hydroxy a week and two anagrelide a day, but her platelets had gone up to 880s when they have been around 270 for nearly a year, she will be having a FBC next week to see how well she's doing. Since last year her blood has been quite anemic so has RBC transfusions every month or two. We can tell at home if she is anemic, she feels tired, and gums are pale, if her platelets are over 450 she falls asleep of an evening, but not if over 650! Just email the consultant and he sends a blood test form and emails the results back, with a solution.
The transfusions do not sound like much fun. So, she has a ‘tiredness zone’ of between 450 and 650?
Yes we think it's around those figures, the consultant doesn't really believe us but it has been proved on a few occasions. ATM it's been nearly three weeks since upping the dose of hydroxy to every day and due to her dropping off of an evening we can say her platelets are probably around 450 and by Tuesday if she has a FBC we reckon on 300 to 350. The RBC transfusions were a right lottery as she used to get a type of pneumonia for days afterwards, but with a dose of hydrocortisone beforehand that lack of breath, high temp, and low SPo2 and feeling of being ill only lasts a few hours and only around two days after the transfusion.
HiI've read all the interesting replies to your post and What's obvious is how differently we all respond to treatments. For the last three months I've been on one Hydroxy and four Anagrelide daily. Before that I'd been on two Hydroxy only but my platelets were creeping up again. I have heart palpitations with Anagrelide now, but my ankles and calves swelled up two weeks after starting Anagrelide and have remained swollen ever since. I'm assuming There's a lin, although my haematologist doesn,t think so.
Hi, I was on 3 hydroxy and 6 Anagrelide a day for a few years. Started on just hydroxy but ran out of room on dose so the Anagrelide was added in when we couldn’t keep platelet count below 7-800. Then that stopped working well enough too so I started Peg Interferon but that wasn’t enough alone so Anagrelide was added back in. I’m now taking 45mcg Interferon weekly plus 3 Anagrelide a day and platelets are better controlled now than they have been since diagnosis about 8 years ago. The IFN has been a rocky road as it made me feel rubbish on a higher dose and has caused some depression/anxiety but we’ve managed to get on top of that now with the combination. I am told that the IFN/Anagrelide combination is unusual with no data but worth considering with your consultant as it’s got me better controlled than ever. Best wishes.
I was on this combo for quite a few years while I had ET, luckily I was fine not many side effects at all . Of course everyone responds differently. My platelets have always been all over the place so nothing seems to keep them at a constant level!
Now on Ruxolitinib as progressed to MF but still doing ok
It’s reassuring for me to know there are others on this combination. How’s the Ruxolitnib?
I was on both together & like you my platelets weren’t budging & I felt awful from taking all the meds. I found an MPN Specialist & he took me off the meds & put me on Pegasys. I feel much better on it.
Thanks Golfersmom.
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