Dysphagia issues

[Raewynne]

Hi I am now getting dysphagia...swallowing problems as I am withdrawing from prednisolone. ITis very scary.Ive made an appointment to see my rheumatologist. I don't know what they can do. I have had big issues trying to reduce below 5mg.My rheumatologist said for me to stay on 5 a few months ago because of my Adrenal issues.Has anyone else suffered dysphagia?

[SnazzyD]

At some point I did keep spluttering on my own saliva and drinks but can’t remember when. How does your dysphagia present? Are solids and liquids the same? Do you try to swallow and just can’t or you start an it all goes wrong once you’re committed? Is there a lump feeling? Did it start suddenly or just creep in?

[Raewynne in reply to SnazzyD]

I choke on dry food in particularIt's like the throat...oesophagus... closes up

.I can only eat small a.ounts and have to remember to chew well.

It is very frightening.

I think it's related to my steroid myaglia that I gor really badly in my legs when I started on Prednisolone. That has improved. I now have a weak heart as well.

[SnazzyD in reply to Raewynne]

It is horrible if something gets stuck. steroid myopathy can cause swallowing issues but given that it is getting worse and has been ongoing for at least 10 months, I think it needs to be looked at properly. Other causes need to be ruled out too, not just assuming Pred/PMR are the culprits. I wouldn’t accept a, “it’s one of those things” response without a bit more enquiry or re-referral. When is the Rheumy appointment?

[Raewynne in reply to SnazzyD]

Next week..

[SnazzyD in reply to Raewynne]

Good. Remember your rheumatologist is a specialist in their field only, not necessarily in any of the areas that would deal with dysphagia. Make a list of issues so you don’t forget them; everything you’ve said here. For example, I don’t think you mentioned vomiting in replies to me, but it is relevant.

[Raewynne in reply to SnazzyD]

Yes thanks Snazzy.He just deals with my prednisolone .Just covering my bases there.Im very upset learning that my heart may be the issue.I don't know what they will do.Lots of tests.Angiogram.

[Rosebud17 in reply to Raewynne]

I went through the exact same symptoms and I agree, it’s very frightening. My GP referred me to a speech and language department at the hospital, believe it or not. The sessions I had were useful but didn’t clear up the problem. Eventually I had a nasal endoscopy (if that’s the term) nothing abnormal discovered! So I continued to cough and splutter over my food and drink, sometimes uncontrollably, until one day I did some gardening, kneeling on my kneeler i bent forward to plant my plants and felt something come into the back of throat and then mouth, spat it out and it was a hard dried pea. It must have been causing the problem all the while. It did take some time to calm the choking but as long as I chew my food well, take small amounts, concentrate on eating and don’t chatter or laugh when eating, I’m fine, it’s such a relief.

[Raewynne in reply to Rosebud17]

Lucky you

[Afibflipper]

I’m sorry you have this, it is awful. I have had similar so know how you’re suffering. Maybe it needs reducing much more slowly if you’ve taken them long term. I don’t know what they’re reducing you by or how often?

Maybe when eating, I tried to eat smaller mouthfuls, chew well & then alter your position so you are slightly forward and head slightly tipped towards chest - mine seemed to go down a bit better. Another tip I was given was try sips of ice cold water sometimes tightens the throat muscles before you take a mouth of food. Only try minuscule amounts first - I don’t want you blaming me for anything - it’s only what helped me not medical advise - hope you feel better soon

[Raewynne in reply to Afibflipper]

I'll try to remember that.The memory has got foggy too.Unfortunately yesterday I forgot I had this problem so I wasn't eating carefully....Nasty experience. Drinking while you're choking doesn't fix it.I usually end up projectile vomiting It's awful.

[Afibflipper]

I have re-read your post & everyone’s replies - I think this does need looking at quickly. You could end up with a chest infection or worse. Call your doctor in the morning for an urgent face to face - if they can’t see you tell them you need a telephone call - if it’s so bad and they say you can’t be attended to then call 111, let them get you the assistance. Choking, feeling like oesophagus is closing ….. you say you “think” it’s related to steroid myalgia -I don’t know but have you seen ENT or Gastroenterologist for these symptoms? Just seems very severe to not be checked out for other underlying causes perhaps?!

[Raewynne in reply to Afibflipper]

I was told the rheumatologist might call me today.I hope he does.Ill see if I can get a telecall with my Dr too.

[Raewynne in reply to Raewynne]

I will.

[PMRpro Ambassador in reply to Afibflipper]

Raewynne is in Australia - 111 doesn't reach that far!!

[Raewynne in reply to PMRpro]

Fortunately I realise that.!🤣

[PMRpro Ambassador in reply to Raewynne]

I know you do!!! Do you have an equivalent? Triple zero is the same as UK 999 but is there a way to get non-urgent medical advice out of hours?

[Raewynne in reply to PMRpro]

000 I think.We have a ph no to ring for an after hours Dr .We have just been through a cyclone here so lots of things are up inthe air at the moment. I am just going to take more of a conscious effort to eat slow and take things more easily for now.Conscious breathing.

[Afibflipper]

call at 8am - usually all appointment have gone by 8:04 🤐 or do an online early if that’s what your surgery use

[Raewynne in reply to Afibflipper]

I have done a telecall with my Dr.He says I need to see my cardiac specialist urgently Unfortunately my specialist has retired due to I'll health so my Dr gave me a referral to someone else.After a couple of phone calls I have an appointment next week not a month away.Hospital Emergency Department if it happens again before then.Now they have got me a bit worried and I have travelling reasonably well.Thanks for impressing to call my Dr.We all know how prednisolone makes us anxious so I am being tested. Whoopee.!Deep breathing and fresh air for me.

[Afibflipper in reply to Raewynne]

hope all gets sorted for you very soon

[Raewynne in reply to Afibflipper]

Thankyou.

[Afibflipper]

😊 ok so I missed that - well maybe someone else over here gleaned the necessary - hope you get things sorted anyway

[Greensleeves]

Sorry you’re suffering, yes I have had this and still get bouts of it.

Had an endoscopy which showed lots of abrasions in the oesophagus , treatment omeprazole,

I also experience it with stress , it’s as though my whole chest goes tight . It’s caused me to have a swallowing phobia which sounds ridiculous.

I hope you’re able to have an endoscopy and some peace of mind. x

[Raewynne in reply to Greensleeves]

Thankyou.Yes I guess they will be doing lots of tests.Not really looking forward to it but it has to be sorted.

[Miacaro45]

My son in law has a similar problem. He goes to an gastroenterologist. He has had an endoscopy and dilation. Now, he will be put on a steroid drug for 12 weeks and then on Dupixent. It is very scary to go through this. The gastroenterologist had him go through all kinds of allergy tests, too. The best to you.

[Raewynne in reply to Miacaro45]

Thankyou.Yes it is very scary .It happens so suddenly. I'm certainly going to be taking my time eating until it's investigated and living low key.

[Karenjaninaz]

I found, and this is in the medical literature, that asthma inhalers, specifically albuterol, can cause difficulty swallowing shortly after dosing. This I’ve noticed and it passes.

[Raewynne in reply to Karenjaninaz]

Thanks Karen.Well I can rule out asthma inhalers.I don't use them but it would be a nasty experience for asthmatics.