Sore mouth

[Lilbert]

Hello, I am 73 years old and was diagnosed with ET 5 months ago. I am currently on 1000 mg of hydroxycarbamide daily. I have been experiencing a very sore mouth and tongue which is making eating and drinking uncomfortable. I have been very stressed just lately due to personal problems and am wondering if this is stress related or a side effect of the hydroxycarbamide. Could anyone help with a remedy for the sores please. I read these posts regularly and they are always a great help.

[Cja1956]

My hematologist prescribed Magic Mouthwash. It works for me.

[Lilbert in reply to Cja1956]

Thank you so muchI will try that.

[Oscarsboy in reply to Cja1956]

Can you tell me please whether you buy this online or in the pharmacy, and is it under that name to purchase in UK. Many thanks.

[Cja1956 in reply to Oscarsboy]

It has to be specially compounded by the pharmacist as instructed by your doctor. They do have a version of it online but I would ask your hematologist about it first.

[Oscarsboy in reply to Cja1956]

Thank you for that information.

[hunter5582]

Oral adverse effects are a common hydroxycarbamide issue. Sometimes these adverse effects are tolerable/manageable. The level of discomfort you describe is not a tolerable adverse effect.

The oral adverse effects are one of the reasons I discontinued hydroxyurea. A dose reduction did not change the oral adverse effects I experienced. I ultimately switched to the interferons (Pegasys/Besremi). The IFNs have been more effective and much easier for me to tolerate. Note that my response does not predict yours. We are all different.

Suggest that an urgent call to your MPN care team is in order. Oral adverse effects that interfere with eating and drinking are not acceptable. You can discuss a dose reduction or switching to another medication with your MPN care team. There are other options to treat ET.

Wishing you all the best.

[Lilbert in reply to hunter5582]

Thank you for the advice. I will speak to my MPM nurse today. I will let you know how I get on.

[ChillyAsh34]

I use wisdom mouthwash ,,£2-09 in BM stores works quickly and makes the mouth sore less frequently

[Lilbert in reply to ChillyAsh34]

Thank you. I am going to speak to my MPN nurse today but I will try the mouthwash.

[ChillyAsh34 in reply to Lilbert]

I had sores from hydroxycarbamide ulcers on tongue sides of mouth big blisters on my lips the mouth wash worked for me so worth a try

[Roxy1959]

hi Lilbert I am also on 1000mg hydroxy and from time to time I get mouth ulcers on my tongue and inside cheeks, I use bonjela to relieve the pain, also mouth wash.

Hope you get some relief soon.

[Lilbert in reply to Roxy1959]

Thank you Roxy. Hopefully I will.

[KLCTJC]

Ask about vitamin deficiencies too. I don’t have experience with HU, but I know my methotrexate patients will have this and I increase their folate. Like I said this may not apply at all, but would be worth asking just about vitamins. And I prescribe magic mouthwash too. There are tons of different preparations of it, but most have some version of lidocaine, Benadryl, Maalox, and some have prednisone. Good luck and feel better!

[Lilbert in reply to KLCTJC]

Thank you so much for your response.

[Lilbert in reply to KLCTJC]

Thank you for your advice

[Alfiesarah]

Hi I too am on Hydroxy 1000mg daily. One of the side effects for me is indeed sore mouth, gums involving loose teeth, ulcers and blisters. I use bonjela for the pain and corsodyl mouthwash and toothpaste aimed at this sort of condition. This works for me most of the time but I've recently had to have 4 teeth removed and 2 courses of antibiotics as had gum infection and fungal infection on my lips. My medic believed this would be due not only to the hydroxy but the blood condition itself..I have ET. Unfortunately my haem consultant wouldn't acknowledge there are side effects from taking hydroxy and would dismiss this out of hand statong too that there were no symptoms attached to ET! I now have a new consultant who recognises the ET symptoms and hydroxy side effects and is helping me to manage these.I hope you find some comfort soon.

Kind regards

[Lilbert in reply to Alfiesarah]

So sorry to hear you have had a rough time and pleased that your new consultant recognises this side effect. I hope you soon feel better. I'm trying the mouthwash so hope I too can overcome this. Regards, Lilbert.

[Anag]

HU is a cytostatic drug. It’s good at killing cells. If you read the directions carefully, and it says that we should not even hold, the capsules with our bare hands. Once we put it in our mouths, it should go down our throat immediately as fast as possible and with lots of water. Stomach takes care of the rest and someone in our form once gave the advice that someone should open the capsule, put it in water and swallow it!! Nothing can be worse. Try swallowing the pills as fast as possible, rinsing out the mouth afterwards, and see if the sores go away.

Stress also causes sores, especially herpes sores and mouth ulcers if one has labial herpes. It is all linked to the immune system which is activated when we are stressed. Stress is, apart from the chemicals in our lives, and on our plate, probably the worst thing for our health. It is just not worth it to stress about anything. What comes comes in we do our best.🙂 Anag

[Lilbert]

Thank you for the advice. I do adhere to what the instructions say and I shall be trying out the mouth washes that have been recommended. I do feel that the stress I am under is also a contributing factor and need to address that. Regards, Lilbert.

[Scrollernut]

I rinse with baking soda and once in awhile brush with it also. Very helpful.

[Lilbert in reply to Scrollernut]

Thank you for your advice.

[Buttercup191]

Hi.

Hope you are feeling better! I am also on hydroxicarbomide and suffer terriable with sore mouth & ulsers. I get Difflam mouthwash which i use before eating as it sort of numbs the inflamed area so i can eat without it effecting my sore mouth to much. Hope this helps

[Lilbert in reply to Buttercup191]

Hello Buttercup191. I am feeling much better now thank you. I started to use Difflam too and it has helped. Best wishes to you.