hi I’ve been on Hydroxycarbamide for nearly a year and for the past two months have had mouth ulcers. I drink plenty of water. Appointment with Pharmacist and she said I may be better with Anagrelide, but she would arrange an appointment with Haematologist before changing. Does anyone have any info for me please. I am female, Scotland, age 79. I want to stop progression. I don’t have any MPN nurse to speak to. I went private to an MPN consultant last year he just agreed with Haematologist in Paisley. Thanks to everyone on this forum as this is the only place where I can learn about this disease. Thanks xx
hydroxycarbamide v Anagrelide: hi I’ve been on... - MPN Voice
hydroxycarbamide v Anagrelide
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Hannah2308
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hi Iv been on hydroxycabamide for nearly a year too my consultant gave me an alcohol free mouthwash works great rarely get a sore mouth now
Thanks Cat for your reply, what is the name of the mouthwash. I’ll certainly try a wash mouth, I bought Bonjela but it didn’t help. Hope you keep well .
Hi I would be interested to know the name of the mouthwash you use too as I now get small ulcers appear inside the lips etc and sometimes sore gums etc. Many thanks.
hi yes I got on my lips too but this mouthwash has helped a lot it’s. Benzydamine. Hydrochloride 0.15% wv
I got from heamatology consultant and also got online chemist too
Thank you so much. I will check with my local pharmacy. If they cannot provide it I can message the haemo nurses who I am sure would put a prescription in hand.
I got from express pharmacy online
Thanks so much. Will definitely investigate that . Great info.
your welcome
When I was on Hydroxycarbamide I controlled mouth ulcers by avoiding citrus fruits and raw tomatoes - not ideal but better than the ulcers.
My other thought about your situation is that you shouldn't need to go private to consult with an MPN specialist. You can ask your haematologist for a referral on the NHS. It is worth discussing Anagrelide if you are finding that Hydroxycarbamide doesn't suit you. There is also Interferon, so definitely worth a chat with an MPN specialist.
Thank you Otterfield, I didn’t know the haematologist could refer me to MPN Specialist, I will ask her about that and also about Interferon. I will avoid citrus fruits and tomatoes, I’ve been eating quite a lot of tomatoes . Thank you .
I would be wary about taking too much advice from a pharmacist re MPN treatment, seeing a MPN specialist is a good idea. Did the private MPN specialist ( presumably Mark Drummond) suggest you stay on Hydroxy and when you say he agreed with Paisley doc what was he agreeing on. If you are aiming to try to slow progression Anagrelide won’t do that but Pegasys might. I don’t know much about Anagrelide as it’s not used that much and that’s because there can be issues with it , I have heard about it causing heart issues for example. If you are going to change meds , Pegasys might be a option worth trying.
In the meantime you’ve had some tips on here on mouth ulcers. You could start a new post specifically asking about how to control the mouth ulcers on hydroxy, you would likely get more good tips, I know some people are able to fix them a bit and some completely. Hydroxy has its uses but if one of your goals is to try and potentially reduce progression it doesn’t do that.
Thank you Ainslie, Mark Drummond agreed with the haematologist diagnosis ET and Jak2 and agreed with the treatment of hydroxycarbamide. I’ve learned from being on the forum that this doesn’t stop progression. Pegasys sounds good but I don’t know if they would prescribe it. Is pegasys an Interferon, excuse my ignorance.
I read some tips now for mouth ulcers.
Thanks again, I hope you are well x
yes Hannah Pegasys and Besremi are both interferons, its possible to get Pegasys in Scotland as far as I know, some haems steer people to Hydroxy and are not too excited about Pegasys because hydroxy is simpler and not to mention cheaper for them. You could probably get Pegasys if you are persistant
Many thanes Ainslie, my appointment with Haematology consultant is6/8 weeks. I will take a note of everything and I will let you know how I get on. Thanks to everyone for the help and support.
I would recommend Pegasys. Works for me
benzydamine hydrochloride. 0.15%w/v
Thanks Cat, is this prescription or can I get it in the chemist’?
I got from hospital consultant but also a chemist online
Thanks Cat, I will try online.
your welcome
I get it on prescription first from hospital now on repeat with gp.
hope it helps you
Hi Hannah, I was told by my Hematologist that Interferon has the potential to slow down the progression of our disease. I was on Hydroxyurea and Anagrelide before and my Dr said these doesnt help with progression.
Hi Timtams, are you on Interferon now, and if so, are you keeping well. Thank you .
Yes i am for 2years now and responding well to it. Used to be very reluctant to take it until i was told about it’s potential to sow progression
Thunks Timtams, I will haematologist about that. I am so glad you are keeping well long mat it continue.
Hope you manage to sort out yours too!
how interesting my haematologist has suggested I switch from Hydroxyurea to Anagrelide to tackle fatigue
I have never hear of this medication until I saw your post. I am interested in other peoples experience of taking this.
I found that an increase in the dose of hydroxycarbamide triggered an unacceptable number of mouth ulcers. Anagrelide has been mentioned to me by my consultant to address this issue.
I have had two heart scans to check my heart function in case we decide to add/replace the current medication. Interferon has also been discussed.
I have been referred to an MPN specialist to help me make a more informed decision.
We don’t hear from many patients using Anagrelide so it’s hard to make any kind of decision about that. From what I read, other than lowering platelets, it doesn’t help and seems to cause headaches. Not that inviting a prospect!
Back in 2001 I started on Anagrelide as part of a trial comparing it to Hydroxycarbamide for treatment of ET. The trial was stopped early when they discovered that Hydroxycarbamide was better at preventing blood clots, then I took Hydroxycarbamide for 16 years. Anagrelide was added around 2012. I felt fantastic on Anagrelide - I had headaches for about three weeks then felt really well apart from occasional palpitations. In 2019 I switched to Pegasys and suffered with severe joint aches.
I have read that some research suggests that Hydroxycarbamide MIGHT slow progression and I think there is more evidence that Pegasys might. Neither of them stopped me from progressing to MF.
Thanks for that reply. It’s really useful to hear other people’s experiences.
Whilst pharmacists go through years of training, I would to the speak to health about treatment options, Anagrelide can't cause heart palpitations, when I spoke with Professor Harrison she asked if I had considered this as I couldn't cope with interferon mostly due to it causing severe palpitations and causing my heart rate to drop below 150 bpm for more than 10 mins several times a day. Since stopping interferon everything is back to normal. I am back on Hydroxy in the hope newer meds are forth coming. I did persist with interferon for a year it didn't even lower my counts and I blamed every other med I was taking for my side effects until interferon was all I was taking. I wish it has agreed as people say it has the potential to halt things.
Read up as much as you can MPNvoice & myMPNteam are excellent. Do you take your hydroxy with food I find this makes a realdifference. Good luck.
was that a typo or did you mean to say Anagrelide can or can’t cause palpitations, is that what Clair Harrison said?
It's a common side effect which for me means sticking with hydroxy. I must have had at least a dozen trips to A&E whilst on Interferon for suspected heart attacks, paramedics always advised going in based on ECG findings... I haven't seen the inside of an ambulance in over a year since stopping interferon.
Hello Hanna, my wife had mouth ulcers a long while ago, she's on hydroxycarbamide and Anagrelide also on omeprazole supposedly to prevent upper GI bleeds due to gastropathy from the other tablets. She has taken a vitamin b12 tablet each day since her first round of omeprazole, and since then never had an ulcer. It's known that omeprazole lowers vitamin B12, but if hydroxycarbamide and or Anagrelide can cause gastropathy, which in turn could cause problems with vitamin B12 absorption , then I suggest you have your vitamin B12 checked by your GP. As low vitamin B12 does cause mouth ulcers. Check out the Pernicious Anemia site on health unlocked. Also being 79, your b12 might well be low. All the best.
very few people can take anagrelide. The max a week my body could cope with was 9 so I combined with up to 17 Hydroxicarbomide a week so a combination is possible.
I had 5 ulcers simultaneously once. Luckily enough all of mine didn’t cause much of an issue.
Good luck
I was on a combination for about 7 years. All good apart from mouth ulcers.
Hi. I was on hydroxy but the fatigue and it was affecting my red and white blood cells. That i had to stop and started anagrelide. Fatigue not do bad and it's not effected the red and white cells. I was warned that I would headaches for the first few weeks which I did but not too bad and I have to watch out for any heart palpation. Anagrelide has been better for me. It was suggested by my hymotoligist and I live in Scotland
Hello
ET treated and controlled with Hydroxycarbamide for last 13 years. Yes it has many side effects but so do the other treatment options. As my manifestations of side effects (pruritis, erythromlalgia, actinic keratosis, mouth ulcers, peripheral neuropathy, etc) are mild and transitory I decided that it was not worth switching one set of complications for another. I use a mouthwash containing Chlorhexidine Gluconate (Ecolabs) twice a day and that keeps the ulcers at bay.
I am a bit puzzled about all the references to progression as other than a slight increase from 500mg daily to 1000mg two days a week, that I assume was in response to a slight raise (progression) in platelet levels, nothing else has shown up in 13 years - what could? Progression to AML or myelofibrosis is quoted as less than 5% and does not feature on my radar.
Once again I laugh quietly about references to getting GP, Care Team, Haematologist to get us to an MPN specialist - good luck with that!
On the other hand my 3-monthly blood tests mean that many various health factors are all being monitored - unlike most of the population!
13 years on and going strong!
yes I am like you positive thinking. My Gp no help ever with this disease . Would not even know I had it left to them I pushed for blood tests. Same moving from Hydroxy Haemotology put me on it with no suggestions of anything else . Thankfully I read more & moving to Peg Interferon from contacting MPN Professor Harrison best move I made. Feel very good on interferon now doseage correct. Blood tests every 8 weeks currently . I am ET Jak2. 👍. Julia .
My hero - keep up the good attitude. You inspire me.
hello Hannah,
I’ve been taking Anagrelide for 6 years. I tolerated it well at first, but heart pounding started and slowly increased. There are no medications without side-effects. It is otherwise a very good medication and is generally much better tolerated than HU. -Doctors don’t like to prescribe an Anagrelide because it’s much more expensive than HU.
anagrelide does not stop the progression, its managers, the illness, just like HU does. I took HU for a few days and had terrible neurological symptoms. I know that age, you should not even be handled with hands if not wearing gloves. If you are holding the capsules in your mouth too long before you swallow them perhaps that is the reason for the ulcers.
I have reduced and Anagrelide by half now and I’m takingBesremi. It’s an Intaferon. There is also Pegasus, also an interferon. Both of these are injections. You can ask about these as well!
All the best, Anag
HiI don't know what dose of Hydroxy you're on, but I was on 1000mg daily and I got a lot of mouth ulcers, plus hair loss. My haematologist has agreed to try to get me off H, because the side effects were making me miserable and now I'm on 500mg daily H combined with Anagrelide. So far it seems to be working. No new hair, sadly, but no mouth ulcers either. I hope you find a solution that suits you.
Hi Hannah,
I have been taking Hydroxyurea at different timeframes for the last year. I am 79 and live in the United States. I have ET JAK2. My problem has been headaches. Doctor has mentioned Anagrelide as a possibility.
To keep free of ulcers I do not even touch the HU capsule. I tilt it into another lid. I have a big glass of water ready. I wet my lips and swirl water around my mouth, then quickly tilt the capsule into my mouth, and finish with the glass of water.
Good luck with your journey, Eileen
Thanks Eileen, I do that with the capsule too, I read this on this great forum. Keep well x
HiI am 47 I have been on hydroxycarbamide for a year and half I get sore mouth and ulcers my key worker at the hospital prescribed mouth wash it really helps stops any pain xx
Thanks Mandy, I’m going to speak to nurse and ask for mouthwash xx
I have been on HU for 5 years. I have had serious mouth inflammation. Neither Hematologist nor regular Dentist could help me. Went to my Periodontist, and she prescribed a dexamethasone rinse followed by Fluocinonide gel, and it worked great! Only have to use it when I have a flare.
Thank you dogsandhorses, I have taken a note of this, and will speak to consultant.
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