Should I change my medication

[Lilbert]

I have been on hydroxycarbamide now for around 8 months having ET Jak 2. As posted earlier I have had really painful mouth ulcers. These are still persistent and although I've tried all the remedies they still keep coming back. I can't enjoy my food anymore. My haematologist told me to lay off the hydroxycarbamide for a few days which I did and there was improvement. We discussed changing my meds to Anagrelide but having read about all the side effects I am in a dilemma as to what to do. Has anyone out there changed from hydroxycarbamide to Anagrelide with success.

[amhann]

hello Lilbert - I have in the last 5weeks started Anagrelide after7 years on Hydroxy with side effects becoming a real problem (mouth ulcers especially an issue)! - another big plus for a change was that it only acts on platelets (I have lymphoma as well so is important for me to have the other blood counts accurate). I insisted on a heart check before starting slowly (1 tablet at night, then 1 am + pm now at 1am + 2pm and in another week will try 2am + 2pm) had fleeting palpitations and a little light headed to start but nothing to worry me. For me, I’m hoping it’s a positive change - have been on weekly monitoring - next will be 4 weeks - all ok so far. Take time to weigh up the pros and cons before you decide - I know it doesn’t suit everyone (the other route could be Pegasys though I didn’t want to go the interferon route) Am sure others will let you know their experiences. Good luck with whatever you decide - very best Anne-Marie.

[Lilbert in reply to amhann]

Thank you for your response. My haematologist sent me for an ECG which was fine. It does help to have other people's input and experiences. I wish you well and hope it has been a positive change for you. I will let you know how I get on.

[Wyebird]

Oh dear, tried and managed only a low dose of anagrelide before suffering side affects. The low dose wasn’t enough to to come off hydroxi completely I stayed on a combination for a few years before switching to Peg.

[Lilbert in reply to Wyebird]

Thank you for your reply. I do appreciate the responses I have been getting. Best wishes to you.

[Joetcalr]

hi Lilbert, I can share my experience which may help, or not. I was ET Calr, told I am now MF.

I was on hydroxy for five years And had constant mouth ulcers and nosebleeds, then a break of two years while trying out Pegasys which didn’t work. I’m now back on hydroxy and for 18 months haven’t had a single mouth ulcer, I’m on a slightly lower dose of hydroxy, so having to put up with my platelets being in the 800s.

Best wishes Jo

[Lilbert in reply to Joetcalr]

Thankyou for your reply. I shall discuss my concerns with my consultant next month. So pleased for you that you are not troubled with mouth ulcers now.

[Nerjalover]

I changed from years of being on HC because my platelets started increasing to Anegralide- which I knew from week 1 did not suit me. It does suit some however! I was found to be Anegralide intolerant after a heart attack . I was on it for 6 months a d my consultant ( who as not a consultant of MPNs ) ignored my worries. I was told the Anegralide caused the HA and y heart was otherwise strong. If you do decide to try it ( and lots of patients are happy with it) just watch out for breathlessness, pains in chest and palpitations- and insist if you have any of them you come off it!

[Lilbert in reply to Nerjalover]

Thank you for your reply. This is my worry that I will have other complications if I change to Anagrelide.

[jointpain]

Please have your vitamin B12 blood serum checked, if it is low it can cause mouth ulcers. If you are on any types of stomach acid reducing drugs such as omeprezole, these will destroy your vitamin B12 reserves too. My wife has a vitamin B12 tablets each day, and is on omeprezole and hydroxycarbamide and Anagrelide amongst other drugs for BP after her portal vein thrombosis.All the best.

[Lilbert in reply to jointpain]

I have got vitamin B 12 deficiency so I am having B 12 jabs every other day. I don't take any other drugs except hydroxycarbamide and aspirin daily. Thank you for your input. I wish you both well.

[Exeter21]

I changed from Hydroxy to Peg Interferon & it has been excellent. I had horrendous gastric problems on Hydroxy. Quality of life is important & if you are suffering then seek an MPN to consider Interferon. 👌 Julia . Uk.

[Lilbert in reply to Exeter21]

Thank you. I am due to see my consultant mid June so and will discuss my options. Hope you continue with the good results.

[Gaithersburg]

Hello,I was on Hydroxyurea for a few years then stopped, as aspirin was deemed okay when I was younger. I have now been on Anagrelide (3 tablets per day) for 14 years and doing fine. Everyone reacts differently to medication. Good luck with your next step.

[Lilbert in reply to Gaithersburg]

Thank you for taking the time to reply. Pleased you are doing fine.

[hunter5582]

The other first-line treatment option for ET is Pegasys. In the absence of contraindication, most MPN Specialists would opt for PEG before anagrelide, which is a second-line treatment option. Here is a bit of information on ET treatment.

mpnjournal.org/how-i-treat-...

nccn.org/patients/guideline...

[Lilbert in reply to hunter5582]

Thank you Hunter for all the info. Much appreciated.

[Solebury]

hi, sorry you’re having those mouth sores, I used to get them when I was on hydrea too, was on it for 14 yrs. I found a neem oil mouthwash to sooth and reduce the sores. It worked well for me. I have also tried anagrelide but the side effects including swelling in my extremities was terrible and after a month switched back to hydrea. My mpn has moved on from ET to PV and so I am now on a combination of interferon and Jakafi which has worked well for me. Good luck and maybe try the neem oil mouthwash.

[Lilbert in reply to Solebury]

Thank you for replying, I am going to give it a go. Pleased things are going well for you

[dogsandhorses]

I got a prescription for a Dexamethasone mouth rinse from an Oral Surgeon. You may use it up to 5 times a day, and it works on the chemo mouth ulcers.

[Lilbert in reply to dogsandhorses]

Thank you. I will give it a try.

[Mirror368]

I take Hydroxyurea with a full glass of water. I do not touch the capsule. I tilt it into another small lid, swish water around my mouth, tilet capsule in, and finish with the full glass of water. I have had no sores in my mouth.

[Lilbert in reply to Mirror368]

Thank you for your reply. I always have 2 glasses of eater with my hydroxycarbamide but I will try your method.