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LUPUS UK
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Throat

Hi there,I suffer with sle lupus and I'm experiencing problems where I'm finding hard to swallow my medication.my throat feels lumpy n everytime I swallow tablet I feel it's stuck in my throat. I mentioned to my gp and he says how maybe my throat is dry.hope I can get some answers.

Thanks in advance.

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Did you try swallowing some water before taking any pills? Did that help? You can also swallow plenty of water after you take your pills to help them down. If that doesn't help, here's an unusual idea: it's possible but rare to have a misaligned esophagus. Also one that is too narrow and needs expansion done by a fairly simple procedure. Check with your Dr. about these if all else fails.

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SueSz,I tried everything nothing and nothing helped.it gets worse in the evening and at times I get breathing difficulties.thank you so much, I will definitely ask my gp again.. Xx

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It's possible that anxiety is the cause of your problems. What I mentioned are possibilities, but have you considered anxiety?

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Hi, as an overlap condition with SLE I get dermatomyositis which is inflammation & weakening of the muscles. Although it doesn't affect myself in this way, I know it can affect your throat and cause difficulty swallowing - maybe worth a mention to your GP? X

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Hi Ramada,

Am having the same problems. Not all the time but especially the first thing in the day. Then after a period of time eating nothing it happens again with the first couple of bites. Have to drink water to clear the throat. Having water before a mouthful of food doesn't help. I find that there is more of a problem with the smallest amounts of food. In this case I have to try swallowing really hard for quite a few times and even then I may still need water to get it down. I'll bet if we went back to the specialist who does endoscopies, he will be able to stretch the opening for you. I know I need to go back to have it done again. It really does work. Ask your G.P. and he will point you in the right direction. I'm just having trouble with my short term memory at the moment, so I can't tell you the professional name of the specialist. I know they do colonoscopies as well.

Ask your G.P. for a referral to the specialist to have an endoscopy done cause you'll need one anyway to make sure nothing else is going on anyway and he can stretch it enough to help with the swallowing and you will have a clear conscience that nothing more sinister is going on.

Hope this helps you.

Regards

Lori-ellen

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Lori -Ellen, thank you so much for reassuring me..I thought it maybe was just me! I've tried swallowing big amount of food and it still didn't help.I do suffer with severe anxiety and this feeling makes it even more difficult. I spoke with my gp,I was really unhelpful and instead said it's from anxiety which I don't agree because I've had anxiety for good 8 yrs.I going to try and see another doctor and see what they have to say..thanks again xx

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It's Lori-ellen Ramada. Sorry I haven't been able to answer before this as I broke my back and have consequently been unable to do anything for awhile. 

Don't take that from your GP. Tell him what you want and don't take no for an answer. You need a referral to see a Gastroenterologist. Look online or in the phone book for one nearest to where you live.

You will need an Endoscopy done so he can check for other things as well. He can stretch the opening whilst he is doing that.

Anxiety can cause a lot of symptoms that we don't understand but this is worth exploring especially to make sure nothing else is going on with you. Don't let your doctor dictate to you, you do what you feel is right for you. You know your own body better than anyone else.

What country are you in?

Lori-ellen 

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Hi Lori-ellen,sorry to hear about your back,hope you have recovered well.thank you so much for your advice.i went to see a different gp this time and got refereed for an emergency endoscopy.the endoscopy showed I had a vascular lump in my throat and I'm due to go on the 12 th of April for an operation to remove the lump.thanks again and takecare. Xx

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Hi Ramada, Sorry to hear that it's a Vascular Lump but so glad you took my advice. Hope you went back to the other doctor and rubbed his or her face in it. Maybe they'll listen to their patients better than they have been. I will keep you in my prayers and really hope your problem will be solved with surgery.Let me know how you are after surgery.

By the way I live in Queensland Australia.

Take care of yourself and remember always to fight for your rights as a patient. 

Lori-ellen  xx

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Hi Lori-el,I had my surgery and it was actually a tumour.. Still recovering.. 

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Hi Ramada, so sorry it turned out this way for you. Was the tumor benign or malignant? Are they giving chemo or radiation post surgery once you've recovered from surgery? A lot of questions I know. Just want to know you'll be good after all the treatment that's all. Hope your feeling better soon. Your in my prayers Remada. Talk soon.

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Hi Lori-ellen hope you're well.. It was non cancerous so thank God..I'm still recovering from the surgery.. Hope to get back to you 

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ramada Hi so happy to hear it isn't cancer. Was terrified for you. It feels weird helping someone that I don't get to see. How long should the recovery take ? GoodnessI hope not too much longer. I do know it would have been a fairly big operationthough. 

I'm doing fine a broken back is nothing comparedto what you be gone through. Best of luck Ramada. 

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Hi,

Just wondering do you have sjorgens too? As the dry throat is a typical side affect.

Or possibly the actual medication, alot of the side effects cause dry mouth.

Last year I was on amytripilyne but i do suffer with sjorgens aswell as SLE and it got so bad i could hardly swollen my tongue used to be stuck to the top of my mouth in the morning and i would get the most awful burning feeling in my chest. Once i stopped that particular medication it all went away although i miss the flat out sleep but it was worth it. It was my dentist who helped me.

Kezzie

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Hi Kezzie, thanks for your response. I'm really frustrated because alot of symptoms I'm getting isn't getting diagnosed.l

do suffer with dry mouth and extreme fatigue.I'm taking hydroxchloroquine 200mg twice a day and I'm not any other meds as I'm breastfeeding.my gp isn't helpful nor is my rheumatologist..

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Hi Kezzie 

Dry mouth can nearly always be attributed to medications. Do you remember exactly when the dry mouth began? Usually most can trace back to the onset. If you can do this you will either find it's a medication or the onset of your illness. 

As far as the extreme fatigue , as you put it, your rheumatologist will need to diagnose you with Chronic Fatigue for you to get any help I'm afraid. Change Rheumatologists if you have to. Take control of your health and your life! Do't let doctors dictate your life to you. If it's Chronic Fatigue then once your finished breastfeeding you should seek out a sports physic and ask them for the treatment of Chronic Fatigue. They treat elite athletes for this every day. Usually part of the treatment is having ice baths. If you want it to go away you'll give it a try as the alternative is to cave in to the disease.

I'm afraid that's all I can offer at the moment.

P.S. My son is an elite athlete and he has undergone the treatment and his Chronic Fatigue is gone now.

Best of luck Kezzie. 

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I never use to be able to swallow a simple tablet , never mind how small , weather u placed it inside something else. I could put the tablet in my mouth and drink a pint of water and still take the tablet out afterwards.

My GP refer me counsellor, ( who was the biggest idiot going ) said practice with buttons in my mouth,

got no problems putting thing in the mouth just swallowing.

it wasn't till my late 30's i began swallowing tablets. Now i take them by the hand full.

So I understand were you are coming from.

The only thing i can suggest is that u get the medication in other forms or crush the tablets in to power and take them.

Unless people actually see you do it or have the problem they don't believe it.

Its like the brain just tells the muscle in the throat not to swallow.

jeff

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Please don't chew, crush or break tablets, pills or open capsules unless your GP or another healthcare professional has told you to do so. Medicines in tablet, pill or capsule form come in many different shapes and sizes. Some are designed to release medicine slowly into your body over a period of time.

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totally agree, that's why i said seek in different forms first.

I use to have crush my tablets when i was a kid , that's 40 years ago. There more choice now.

All he has to do is make the GP use his little book and find the right format to suit him.

The problem isn't just a simple case of " its a tablet , just take IT "

If he's got a serious health problem and needs medication , there isn't any real help out there and if you don't have the problem , You Can't understand how it feels or Draft you feel yourself not been able to do it.

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I am 50 and still can't swallow pills. I have to crush my plaquanel and put it in applesauce in order to take it. How did you learn to swallow pills? I am thinking of seeing a hypnotist to see if they can help me.

Thanks

Angie

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I DIDN'T . I STARTED having to use gtn tablets under tonged and then something must have just clicked . But that wasn't until about 15 years ago. But now I'm on about 10 tablets morning and night. I JUST get the hand full and chuck them in and a month full of water.

But couldn't tell you what click , i have a episodes 0nce in a blue moon when odd tablet won't go down.

That when i go back to going without the tablet. Because i can drink a full pint of water and the tablet will still be in my mouth.

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A few ideas: is this just a recent problem and is the difficulty only with pills?

If it's only with pills you might try using food to help them go down rather than water. My daughter has extreme difficulty with pills and has always taken a small bite of food first and swallowed it, then puts the pill in her mouth along with a tiny amount of the of the same food and swallows them together. Then after that she drinks the water water that most pills want you to take with medication. She also prefers only certain foods for this like puddings, applesauce, muffins or breads. Maybe try experimenting and see if this works for you.

Or, Maybe try a warm drink like tea to relax your throat before taking the pills, followed by more of the warm drink.

If this doesn't work and if this is a recent problem that happens with food as well as pills then it might be a good idea to see a neurologist. There are several types of neurological problems that can cause this to happen.

Keep trying but stay calm because getting anxious over this will make it worse.

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I'm the same. Waiting for an x ray as I have also had a sore throat for about three weeks. My throat has always suffered inflammation with the SLE.

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I have APS and lupus cross over effects but I don't have lupus itself I just get some of the symptoms. I have reflux sickness where I bring up food and anything stuck in my throat. all the time. I been diagnosed with dysphasia which is a swallowing issue and oesophageal dysmotility and criopharageal spasm. Things get stuck in my throat and it sometimes feels like it is stuck actually I feel like that I have something stuck all the time. I use to take domperidone but that can cause long term heart problems . I tale metroclopromide which makes my body push the food through my digestive system better. It does help sometimes but im still sick and am awaiting a ENT appointment as it makes me really ill and when im sick it burns my throat. I hope this has helped and wondered if maybe its something that can happen to lupus patients?

Andrea

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May be you are becoming allergic to the medication. Your body could be reacting by your throat swelling. This needs to be looked into. I had this when I was allergic to many foods and chemicals after being on lots of drugs.

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Hi everyone, I saw a Ent doctor and they discovered a lump in my throat. Had my surgery yesterday they said the lump was actually a tumour they will be sending it for further test to see if it is cancerous.. Please keep me in your prayers.. 

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Please don't ignore any symptoms with sle.. 

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