Hydroxy and hoarseness

[Jelbea]

I suffer from Jak2 ET and have been on 500 mg Hydroxycarbamide daily since May 2021 which I seem to tolerate pretty well apart from extreme tiredness.

In the last 2 - 3 months I have suffered morning hoarseness and some difficulty swallowing dry crumbly food. I have had a tube passed in my nose and throat as far as vocal cords and this area is entirely normal. ENT surgeon thought symptoms might be due to gastro-oesophageal reflux and I have been started on a small dose of Lansosprazole each morning.

However, I was wondering if anyone else on the site has had this difficulty when taking hydroxy and if so what to do about it. Thank you in advance

[hunter5582]

It sounds like you already know this but hydroxycarbamide can have a number of adverse effects, including asthenia (fatigue), dyspnea (short of breath), vomiting and stomatitis (inflammation of oral mucosal tissues). The complicating factor is that many of these symptoms can be caused by other things too. Sometimes timing is the only clue you may have. Note that aspirin can also cause significant GI issues, including vomiting.

It would certainly make sense to see if lansoprazole will help even if this is a medication adverse effect. I have been taking Nexium for many years due to GERD. Note that the proton pump inhibitors can also have adverse effects, particularly with long-term use. I have to take a magnesium supplement due to PPI-induced magnesium deficiency. That is not to say that it is not worth taking. The GERD causes much worse problems if left untreated.

Suggest that you relay your concerns back to your MPN Care Team. Collaboration with the gastroenterologist would be a good idea. Hopefully you have a MPN Specialist on your care team who is familiar with the adverse effects that hydroxycarbamide can cause. The good news is that there are alternative treatments for ET should hydroxycarbamide prove not to be suitable. The MPN Specialist can best advise you on your options.

All the best moving forward.

[Jelbea in reply to hunter5582]

Thank you Hunter for your very prompt reply. As you say it is always difficult to know where a side effect is coming from. I was hoping it was not from the hydroxycarbamide as so far it has suited me very well apart from the extreme tiredness it brings. My blood cell levels responded very quickly and are staying OK. I am lucky to be on a low dose.

My McMillan Nurse (link to haem team) denies it could be anything to do with swallowing this toxic capsule and I hope she is right. However, I am due to see my MPN specialist in March so she might be able to advise if I still have the problem. In the meantime I shall continue with the PPI.

[Mirror368 in reply to Jelbea]

I read a suggestion for taking HU and avoiding mouth sores that might possibly help your problem.

Drink with large glass of water….swirl some around in your mouth and swallow some first before swallowing pill. This way your mouth and throat are coated with fluid.

Since HU is toxic I do not even touch the pills. I tip one out of the container into another small lid and swallow.

Hope things improve, Eileen

[Pounds11 in reply to Jelbea]

I’ve said this before on this forum. I take mine buried in a giant tablespoon of yogurt. I’ve been on it since May 22. No problem. Good luck!

[Jelbea in reply to Pounds11]

Hello Pounds11 - Thank you for your tip about the yogurt. At present I am off dairy products as I have a lactose intolerance but I shall keep it in mind.

Good Wishes

[Scottishterrier]

Hi I have had like the same but with cough and loss of voice I do have thyroid problems but pharmacy says just could be a virus which takes up to three weeks to çlear up I am on omeprazole when put on Hu works a treat hope you get better soonStay safe

Scottish terrier

[Jelbea in reply to Scottishterrier]

Hi Scottishterrier - I have a very dry mouth because of medications I am taking. I have been given some tips here on drinking plenty before swallowing the HU and then the usual glass of water after. I have been put on a PPI drug to see if that will help. I hope your cough and loss of voice clear up very soon. Best wishes

[Peachjoy]

hi Jelbea, you contacted me about my experiences with Hydroxycarbamide…however, as yet I’ve not been put on this treatment, so I’m unable to be of any help on this matter…

But time will tell.

Best wishes

[Jelbea in reply to Peachjoy]

Sorry Peachjoy - I did not contact you and do not know how that happened.

Anyhow thankyou for replying. Good Wishes

[Cookiebaker]

I have been taking Hydroxyurea for 4 years and the last 3 or 4 months have been hoarse. I have an appointment with GI doc but couldn’t get in until June!!! All docs are so busy. To tell you the truth I never thought about the possibility of it being Hydroxyurea related. I will ask about that connection when I see doctor. It is really annoying since I am a cantor at church and can’t sing because of the hoarseness.

[Jelbea in reply to Cookiebaker]

Dear Cookiebaker - Thank you for replying and I am sorry you are having hoarseness. The waiting times are so long nowadays - leading to more worry time for patients.

I have a very dry mouth due to other medications I have to take and feel slight difficulty with swallowing at times. Saw GP this morning and I have been started on Lansosprazole to see if this helps. I shall also follow the advice of Mirror above about drinking plenty before swallowing HU and then the usual glass of water afterwards.

I hope you will improve very soon and be able to sing once again. Best Wishes