ET and Ulcers!

[Calmat]

Hi everyone, my first time on the forum. I was diagnosed with ET/CALR late 2014. I take Hydroxycarbamide 500/1000mg on alternative days plus the obligatory aspirin! This has brought my count down to about 500 where it has stayed about level. A few months ago I had a spell of painful mouth ulcers so I was taken off the Hydroxy for a month (while my count when back up to 1000). The ulcers cleared up but I was told that if they came back then they may put me on Anagrelide. I have now got more mouth ulcers developed but am worried as I don't fancy going on Anagrelide as I have read that the side affects are far worse than Hydoxy, is this true? I have got used to taking the Hydroxy now and got used to the low level headaches and fatigue. Does anyone else get ulcers and can anything be done and if i have to switch to Anagrelide how bad is it? Thanks

[bruddery]

Hi Calmat. I too suffered dreadfully with mouth ulcers and swollen tongue with hydroxy. Especially when they tried to increase the dosage. The haematologist referred me to the dental hospital to see if anything could be done and I was given betnesol to use as a rinse. It worked I still got the mouth ulcers but would each time go back to using the Betnesol. However I had to go on to Anagralide in conjunction with 1gramme hydroxy and I have to say the side effects aren't the best. Constant whooshing in the ears almost like having a permanent MRI machine in my head! Beginning to feel like I'm going deaf! Also such a fast and erratic heartbeat... I'm seriously considering coming off the anagralide. So I can understand concerns about side effects. However not everyone gets them. But I do know that the betnesol used as s rinse works for the moth ulcers. Good luck with it all. Bruddery

[lizzziep]

Hi, I have ET and sometimes get mouth ulcers, not as often as when I first went on hydroxy though. The specialist nurse I see at clinic prescribed some mouth wash to use and that really helped. I've been on hydroxy for a couple of years and the side effects do settle down after a while. (Or maybe I've just got used to them!) As I'm over 60 I don't pay for my prescriptions so the mouth wash was free! You could also try Corsodyl mouth wash, and also give your gums/mouth a good brush when you clean your teeth. Best Wishes. X

[Rinty]

Hi there, I too have ET, have been on Hydroxy for over a year now and dosage been going up and down due to white count dropping too low, also sufferered terribly with the mouth ulcers until Proff Harrison recommended Co Enzyme Q10, I take 120mg daily (Holland and Barrett stock this) it took about a month or so to have effect but it DEFINATELY works I stopped getting the mouth ulcers, but have forgotten to take it on a few occasions and darn mouth ulcers return, so I would highly recommend you try it. Good luck and Best Wishes xxxx

[Stanley28]

Hi - same diagnosis and meds and same problem. i use Propolis liquid - it is disgusting but it does work. you can also get the much more palatable lozenges which are good for prevention - but the liquid is best to treat. there is some good research that supports this approach for children on chemo. wishing you luck

[beetle]

I get something called "Gelclair" from the hospital. It seems to work quite well. I have tried all sorts of things. Colloidal silver works really well for me but it is expensive. Bonjela also helps in an emergency. I have battled with the ulcers for many years now. I was interested in Claire Harrison's suggestion because Co Enzyme Q10 is recommended to take with statins that I and many others are also on. Again it is extra expense though.

Hope you find what is right for you because I know how miserable the ulcers can make you feel

[Hidden]

I wonder would folic acid help. In rheumatology, patients who take MTX take this once a week to limit the side effects of this drug. I would ask about it first though because it can stop the drug working if it's taken on the same day as MTX. Just wondering if anyone has ever tried this.

[light]

I am also patient with ET Jak 2+ and was on Hu for two and half years. Suffered with mouth ulcers then a year ago I switched to Interferon Alpha 2 and all cleared up and I did not have one since. Interferon works well for me. Very happy that I did.

Wishing you well.

[Johnj]

Hi Fellow ET sufferer,

I have been on both Hydroxycarbamide and Anagrelide for several years. In fact on Hydroxy, since August 2000, and on Anagrelide for at least 5 years and I am presently on 1.5mg (3 capsule) of Anagrelide, and until last month I was on a combination of 500mg of hydroxy (1 capsule) and 1.5 mg (3 capsules) of Anagrelide. I was taken off the Hydrox last month because my haemoglobin dropped to 99 and my platelets dropped to 115 I am due to go down on the 8th Sept to see if my haemoglobin has recovered

I did have leg ulcers some years ago and was taken off Hydrox at that time and it was then I was put on the Anagrelide. When my platelets went up I was put on a variation of Hydrox and Anagrelide. I have not any real side affects with either tablets, except occasionally I get palpitations which is one of the side affects of the Anagrelide. Everybody reacts differently to side affects, all I would suggest give the Anagrelide a go how see how you get on. I wish you all the best for the future.

Regards

johnj

PS When I was diagnosed my platelets were 1700 Aug 2000

[Calmat]

Brilliant, thanks everyone. Will definitely try the mouthwash route and thanks for advice re anagrelide. Thanks Bruddery for mentioning the 'whooshing noise'.... I thought that was just me getting that.

Thanks again 😊👍

[Helpatlast]

Hi I have ET and be on hydroxy for nearly 9 years - for the first year yes I got bad mouth ulcers and even had little ulcers in tum button, around my bottom ouch all unpleasant BUT I did find as my body adjusted over the months it all settled and my body started to be used to hydroxy so I would highly recommend sticking with it for now as it's early days for you - drink LOTS of water makes a huge difference I always have a water bottle with me in my bag and drink often even by your bed at night. I found good quality Aloe Vera gel (Forever Living is excellent) is very good to use for your mouth and as others had said really keeping your mouth clean maybe that much more than a normal routine. Do hope all the suggestions work for you - I know it's hard going when treatment first starts takes a lot of adapting but it does get easier as time goes along and hydroxy is a very good drug to be on for ET (apart from those of course whose bodies just don't tolerate it) All the best keep us posted

[Ssnbll]

I had a similar experience the side effects were not good

So I stopped and eventually switched to Roferon which I found much better but still some side effects

As a consequence I am now only on daily aspirin so long as my platelets stay below 1000 (they have been around 800 rising slowly)

We will monitor over that - the good thing with Roferon the affect lasts for a while after stopping it