I can see from what I said in my previous post that I gave the impression I was only having difficulty with swallowing the hydroxy capsules, but in actual fact it is most things which I swallow which are giving trouble.
I am not getting much medical help in sorting out what is causing this so I am just trying to work out myself what might be at the root of the problem. Because I first felt it when taking the hydroxy I have thought that with swallowing being slow perhaps the hydroxy is dissolving on the way down and causing acidity and damage from the drug on my eosophagus or larynx. I am hoarse as well but have had tests to exclude growths, etc.
Thank you for any help.
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Jelbea
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Hello again Hunter - I have been fully assessed as I mentioned in my first post on this subject. I had assessment by a surgeon in January where a tube was passed as far as my duodenum. I also had nose and vocal cords checked before that. Recently I had fluroscopy by speech and language department. The only definite finding was some reflux from a small long-standing hiatal hernia. I do not get much trouble from this reflux and no-one has been able to explain the swallowing difficulty. This is why I was trying myself to find out if something like hydroxy could be to blame. My swallowing is slow and I did read that the hydroxy capsules can start to dissolve on the way down causing a very acidic environment.
I am now just accepting what is happening and of course it may be age-related muscle weakness although there are no other signs of this. At least nothing sinister has been found but choking from time to time is not pleasant.
You really have been through the diagnostic mill. Thorough but not yielding answers is a hard one. Glad to hear that nothing sinister has been found.
HU can cause various GI issues, including stomatitis, which is defined as inflammation of the oral mucosa, which presents with ulcers that can cause pain and difficulty drinking and eating. Given that you have ruled out other causes, it seems reasonable to wonder if the HU is the cause of the problem. Perhaps a more subtle level of inflammation causing a problem.
The only was to sort this out would be to stop taking HU for long enough for the issue to resolve if HU is the cause of the problem. I would note that when I encountered GI issues with HU, it took about three months for the intestinal issues to resolve. The oral ulcers faded away in about the same timeframe, but the surface of my tongue never returned completely to normal.
Hope you get this sorted soon. Please do let us know how you get on.
goodness it must be awful not finding a reason for your swallowing issue.
Have you spoken to your heamo. Maybe if you were able ( doctor willing) to come off the hu for a short while it could eliminate or support your theory.
Hello Wyebird. Thanks for your response. I have had various tests which fortunately do not show anything bad lurking in the background. I am hopeful that it may be age-related or perhaps from some reflux. At present the hu is keeping everything in good order although extreme fatigue. If this swallowing difficulty continues I shall speak to MPN specialist to see what she thinks. Thanks again
Hi Jelbea - I have this too. I was diagnosed with Cricopharyngeal Hypertrophy at the beginning of the year after having a barium swallow and endoscopy/fluoroscopy. Mine is caused by a tremor.
I always make sure to drink a lot of water before I take any medication or before eating - the ENT Consultant also suggested yawning before eating - which sounds very strange, but it works. The airway dilates and you produce more saliva when you yawn!
I'm having either an operation or oesophageal stretch in a few months time. I haven't decided which yet... the stretch doesn't always work and maybe only temporary and the operation can cause other problems.
Hope you find out the cause of your issues soon as I know from experience that it's very distressing.
Hi Kari1961 - Thank you very much for your reply. I have not had the barium swallow but have had the other tests and all they seem to see is some reflux although this does not bother me much. That was given as the diagnosis.
Your tip of yawning is good. I have tried it and it does seem to work. I also read that if you feel like coughing or clearing your throat you should swallow instead and I think that yawning might even work better.
I do hope your procedure (whichever you decide) works well as it is a distressing symptom to have on top of everything else. Good Wishes to you
Thank you - The barium swallow confirmed the diagnosis as it showed the pocket which has formed in my oesophagus... the pocket is why the food gets stuck, so it may be a good idea to request one.
Yawning really works, the only downside is that when I'm in company I start everyone else off. 😅
Hi Meatloaf9, Thank you for your advice. It is annoying not finding the cause of the swallowing difficulty but hopefully there is an easy explanation - perhaps age-related.
I have read the Mayo/dysphagia article but see nothing I can identify with. I am able to deal with the problem at present by drinking lots before, during and after eating. Also one of the folk on here gave me a tip about yawning before trying to swallow and I find this works really well as it seems to stretch your throat. This forum is so great for all the help given which is invaluable.
Hello … I have had problems swallowing even before diagnosis …mpn …I find it very distressing at times (sometimes not as bad as other times ) have never been given any answers by mpn staff … but went on to have endoscopy & discovered I have something called hiatus hernia …
Apparently this causes a feeling of narrowing throat muscles & difficulties swallowing ..done my research & although I still get the discomfort in my throat ,it’s much better as I now understand why … also changed my diet which has really helped …hope this is helpful & wishing you well with this matter …
Hello Melanie66 - Thank you for your reply. I, too, have a small hiatus hernia which I have had for 50 years and which never gave me much trouble. This was noted again on endoscopy recently but did not seem to be obstructing. There may be a bit of reflux and I have been taking Gaviscon. At least after the investigations there does not seem to be anything bad there and I am hoping it is just age-related or something like that. It is upsetting at times but with drinking plenty I am managing. Good wishes
I too have difficulty swallowing. The problem began about 6months ago. At meal times particularly at dinner, I get partway through my meal and have to stop because I can't swallow anymore. I get a pain in my chest and it feels like a temporary blockage. After about an hour it gradually clears.
I have seen my GP and been referred to a consultant. An endoscopy, a barium swallow and a CT scan plus blood tests have been done.
The endoscopy showed that my hiatus hernia has become significantly enlarged which means that too much stomach is sitting above my diaphragm. Also, this has caused a crease in my stomach resulting in lesions on the inside. These lesions bleed all the time. This was very useful information because it explained why I was so fatigued all the time. My haematologist recommended that I take "gentle iron " which is ferroglobin. I now feel so much better and have my energy and enthusiasm for life back. Phew.
But now waiting to see the consultant to discuss pros and cons of abdominal surgery. If I don't have it, the bleeding lesions will remain indefinitely and I'll have to keep taking the iron.
I am happy to let you know the outcome of meeting with the consultant.... not sure yet when that will be, and then you may have a bit more ammunition to help you deal with your local practitioners.
I have PV .Diagnosed in 2006 and I'm jak2 positive. I've been taking Ruxolitinib since 2015.
Hello BlushNoisette = Thank you so much for reaching out to me particularly when you are not short of bothers yourself. I have noted all you say and the tests which you have had carried out. I, too, have a hiatus hernia but have been told it is still small but does move in and out. I had a test recently where a tube was passed down and then I was given different items to eat and drink whilst this was watched on a screen to see how I was coping. I was told I had some reflux but was managing fairly well. I was told to drink copiously when eating and of course to chew everything well before trying to swallow. It was also suggested that I take a PPI drug to help the reflux but as you probably know these drugs are not as popular as they were. They can give rise to a lot of side effects including bleeding and I was very loath to start one - particularly as I had tried Lansosprazole and had a horrible hallucination with it. The girls who did the test actually agreed about the PPIs although they were not supposed to say and they suggested Gaviscon to see how I coped. I spoke to my GP who also agreed that because I was already on heavy drugs of one sort and another he did not want to prescribe a PPI. I am a few days into taking the Gaviscon and cannot say one way or the other. I am managing well and just trying to chill out about it all. When you have an MPN you have a lot to contend with - lots of symptoms which may be due to the ailment or to the treatment - and one just has to accept so much as the normal for now.
I note in your profile that you mention PPIs and I wonder if you have been taking these all along and have they made the condition worse by causing the bleeding. This of course may not be the case. I know PPIs can cause anaemia.
As I say I am trying just to come to terms with yet another problem and not feel too anxious about it yet - just keep an eye how things progress. On the other hand you are obviously suffering much more and really need to find out if you can get an answer to this. I would really like you to let me know how you get on and as you say I will then be better informed for the future.
I was diagnosed with ET in May 2021 and I am Jak2 positive. I take hydroxycarbamide 500 mg. daily which has worked well apart from extreme fatigue.
Again many thanks for your response and I hope you will not have too long to wait for your app. I am in Northern Ireland and our waiting times are off the scale. In our family circle several of us have had to pay privately just to get seen and even then there is a waiting time. All good wishes to you
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