Hydroxycarbamide and difficulty swallowing

[Jelbea]

Hi to all of you with experience of taking hydroxycarbamide. I have been taking 500 mg daily for over two years and in the last year I have been having increasing difficulty in swallowing.

I first noticed this when swallowing the white capsule which seemed to be sticking in my throat although I always drank a glass of water. I have had tubes passed down to investigate and nothing was found except an long-standing (50 years) hiatal hernia which has never really caused much trouble - occasional heartburn. I had fluroscopy carried out at which difficulty with swallowing was noted and some reflux and it was suggested I have Gaviscon as treatment and of course drink plenty of water which I do. The gastroscopy was reported as not showing reflux.

I have read that the hydroxy capsule can start to dissolve on the way down and this can cause oesophageal problems.

Has anyone else suffered this and if so how is it dealt with? I have not really been given much help and it is quite upsetting at times when I choke.

My prescription is for the generic hydroxy but on one occasion I got Hydrea which was a smaller, harder capsule and I wondered if this might help as it would probably not melt quite as quickly.

Any thoughts would be much appreciated. The Hydroxycarbamide is keeping my blood levels in good order.

[Cat1001954]

so sorry for you I have trouble sometimes swallowing any tablets since being on hydroxy but I now put in my mouth take a mouthful of water and lean my head back when swallowing this helps me

[Jelbea in reply to Cat1001954]

Hi Cat - Thank you for your reply. I swallow the hydroxy just as you advise but the feeling of sticking and moving slowly down is always there. I even take a good drink of water before swallowing the capsule. What is more annoying is that foods of all kinds are involved now as well.

So glad to hear your treatment is kicking in and your results are good and long may it last! Best Wishes

[Cat1001954 in reply to Jelbea]

thank you so much try swallowing a sweet it helps to shift it down x

[Pounds11]

I take mine I’m a giant tablespoon of yogurt. I hide it inside so none of it touches. It slides right down. Haven’t had any problems so far with mouth sores or swallowing. Been taking it for 20 months. Try it??? Best to you

[Annula in reply to Pounds11]

That's an excellent idea! Going to try that one....

[Janis12 in reply to Pounds11]

What a good idea, a bit like slipping the cats tablets into some food so it doesn't notice. I eat loads of yogurt daily so may try this myself. This forum is just full of great tips from folk who have 'been there and worn the T shirt', thanks for that.

[Pounds11]

oops. That should be with a tablespoon of yogurt

[Jelbea]

Thankyou Pounds. I have tried yoghurt as well and find it good. My Macmillan nurse told me this. I think I have probably given the wrong idea in my post. It looks as if I am only worried by swallowing the hydroxycarbamide but in fact it is everything I swallow. I mentioned the hydroxy because it was swallowing it that seemed to start the whole thing off and I just wondered if it was in fact dissolving on the way down and causing acidity in the oesophagus and if it had happened to anyone else. Good wishes with your ongoing treatment.

[Bellakeira]

Hi JelbeaI've always had trouble swallowing that darn capsule it's always a process for me!! I've started pegasys but still have to take the hydrea for a little while yet at a lover dose thank god!! Can't wait till that ends. I usually throw my head back with lots of water the bend my head down towards my chin. That seems to work most of the time.

Good luck

[Jelbea in reply to Bellakeira]

Hi Bellakeira - Thanks for your reply. I do use your technique and it does work. I wish you all the best on your pegasys journey.

[Bouillabaisse]

hi. My husband has difficulty swallowing (similar story to you). In the UK you can get Hydroxy in liquid form (brand name Xromi).

It comes in a bottle with a special cap and you store it in the fridge. You use an oral syringe and draw down the amount required and then squirt into the mouth and finish with a glass of water. It is usually given to children and is more expensive than tablets - but not hugely more. No issues with mouth ulcers.

[Jelbea in reply to Bouillabaisse]

Hi Bouillabaisse - Thank you for your suggestion. My Macmillan nurse did try to get Xromi for me but my GP told me they would not me prepared to get it for me as it was very expensive! Also there seemed to be great difficulty in getting it in Northern Ireland. Again thank you and good wishes

[Bouillabaisse in reply to Jelbea]

it’s not that expensive. £250 a bottle to the NHS on the NICE site.

[saltmarsh]

Sorry about the pill problems. I take 1 or 2 hydroxyurea capsules a day with lots of water and have not had issues but understand the problems caused by hiatal hernias. I'm 76 and most of us develop issues with hiatal hernias as we age. I found something a few years ago that helped me. It's called the warm water method and should be easy to find on the internet. Basically, first thing in the morning you stand on your tip toes, drink a glass of warm water and drop to your heels 5-6 times. It pulls the hernia back down. I did it for weeks but not needed anymore. It did work for me. Good luck.

[russkatt]

I take mine with a spoonful of applesauce and it works beautifully. I noticed over the last year I am having more and more difficulty swallowing, especially my pills. But even food seems to be sticking in my throat more often than it ever did before.

[Jelbea in reply to russkatt]

Thanks for the tip russkatt. I am sorry you are having this difficulty also and I do hope you will get it sorted. Perhaps it is an age thing - I am 81 and nothing works quite as well now😢😁

[russkatt in reply to Jelbea]

Yes, it could just be age. I am 77 and I first noticed this about 2 years ago. Good luck to you my friend.

[Exeter21 in reply to russkatt]

The muscles as we swallow sometimes weaken and don’t push the food etc along . I just had tube down throat & had to swallow small pieces of bread as same time whilst hospital monitored it on machine. I now have to eat small mouthful & chew to a pulp almost & then fine but tablets a problem 👍

[Jelbea in reply to Exeter21]

Hi Exeter 21 - I had this test done as well with various things to eat and drink and I was told I had some reflux. Were you given a diagnosis or was treatment suggested, or were you just told to put up with it?

[Exeter21 in reply to Jelbea]

I was given omeprozole to reduce gastric fluids & special diet to follow . It took about a year to settle & my food & drink intake was very restricted. Stress allegedly makes it worse . I had to avoid things that were hard to swallow chew or slow to digest. It has got better but have to be careful of low acid foods 👍. I paid to see a consultant privately in end at a Nuffield Hospital as NHS took forever & not interested Julia .

[Exeter21]

I came off Hydroxy for that reason . I struggled to swallow the capsules & they gave me horrendous gastric problems. I refused to continue with it as irrelevant it bought my platelets down my quality of life & health rapidly went downhill. Changed to Peg Interferon & brilliant . But need to get doseage correct . I have 45 monthly 👍

[Jelbea in reply to Exeter21]

Hi Exeter21. I am glad you are finding the peg interferon "brilliant". HU has been OK for me up until now and my swallowing problem may not be connected with it all. My blood levels all reverted to normal within a few months of starting HU and are still good now after 2+ years although I do suffer extreme fatigue.

I was reading about the Peg interferon and noted the side effects of depression (which I suffer) and also migraine which also plagues me so I might be better on HU at present. Good Wishes for your peg treatment

[russkatt in reply to Exeter21]

I also had gastric problems and now since I switched to Peg the problems seem to be subsiding. I sure hope this is permanent.

[Exeter21 in reply to russkatt]

it stopped mine after getting off HU but also aspirin can irritate gastric trouble. I have the 75 coated one but still irritated me . So now I try every other day with lunch or breakfast it’s improving 👍. It’s all experimental as all our bodies react differently to what Drs think 😂👍

[russkatt in reply to Exeter21]

I have to take aspirin daily because I had bypass surgery last year. I know how bad aspirin can be for the gut, but my cardiologist insists I take it along with blood thinners. Sometimes it is hard to tell what bothers me most, the PV or Heart condition.

[Jelbea in reply to russkatt]

Hi Russkatt - You and I have a lot in common. I also have to take aspirin along with the blood thinner rivaroxaban. If I do not take aspirin I get very severe migraine headaches during which I am unable to speak properly and I find quite scary. As you say it is hard to tell what bothers us most!

[BloodZero]

I used to feel this too. Sometimes i would vomit the capsule up again. What i started to do was after taking them, eat some food. The movement of chewing and swallowing food seemed to help get the pills further down. In fact, i never take them without food now. I eat half my lunch (to coat my stomach), take the pills, then eat the rest of my lunch (to chase the pills down).

Maybe you could try similar if you have not done so already.

[Jelbea in reply to BloodZero]

Thanks for your response BloodZero. I usually take my hydroxy just before breakfast followed by a large glass of water and then breakfast.

My swallowing difficulty may not be due to hydroxy but at least tests do not show anything awful. Good Wishes

[russkatt in reply to BloodZero]

If you really need a fool proof way to get pills or capsules down, just coat them before swallowing with olive oil. You will be amazed at how easy it goes down.

[trotty100]

I have had tablet /capsule swallowing problems for many years ,I choke regularly. When I was on hydroxy my haematology team advised that it was ok to open capsule and put contents into another source, I mixed with orange juice. I had to be very careful to avoid contaminating items other family members might use. I was very diligent in this process and it worked although a bit of a pain especially when I was away from home. I am now on Ruxolitinib and the 5&10 man tabs are small enough to swallow.

Best wishes in finding what works best for you

[Jelbea in reply to trotty100]

Hi trotty100. Thanks for your advice and I am glad that you are now on ruxolitinib and finding the tablets OK to swallow. With my difficulty it may not be the hydroxy that is to blame - I just noticed the difficulty first when swallowing hydroxy. However, any tests I have had to date have shown no sinister cause so perhaps it is age-related or something. I just drink plenty to wash everything down well. Good Wishes

[Olliebunny]

Hi I have been on hydroxy about 6 weeks and had to go to hospital last week as I thought that I had Quinsy( abcess in throat,which I've had before) .I was unable to even swallow water. In you post you mentioned not being able to swallow tablets bit was it also difficult to swallow generally? I have to speak to haemo tomorrow and I'm sure they will say it's not a side effect, but am really worried that it isHope your problem has resolved.

[Jelbea in reply to Olliebunny]

sorry to hear of your difficulty swallowing. I am still on hydroxycarbamide but now taking the liquid form. I still have trouble swallowing but am managing. I have to drink plenty of water to wash food down.

I hope you get this sorted very soon. Sorry I cannot be more help. Good Wishes

[Olliebunny]

Thank you so much for you reply. I'm sorry you are still having problems, it is awful I know.