Sjogrens

[drobbie]

Hi,l came on this site in 2017, only used it once. I have sjogrens and lupus. I am struggling with sjogrens. I wonder if anyone else has the following symptoms: choking, can’t get breath from nose and throat, very frightening. On the 6th. December I was struggling when we were at a dance and the people saw I was having difficulty breathing.I have had 4bad bouts since then, the most recent being 8th March when I was really choking and could not swallow. I have constant wet nose, and cold sores at the bottom of my nose, very difficult to get this healed maybe today l see a difference because l used Savlon yesterday. I have been using cold sore cream also Zovirax and witch hazel. I am also using Mometasone Furoate, l am always hoarse. I am on Warfarin number 5 daily for AF. and Desloratadine because l had Lupus blisters on my back, still on them for the itch. I attended hospital on 28th Dec and was told l had a fever and Pneumonia.l was given Doxycycline which l should not have been given because of my Lupus. This was changed to Amoxicillin 500 which was changed again to Co-amoxiclav 500/125.

Anyone help?

[svfarmer]

Sorry no experience with Sjogrens but loads of people are on here with experience so someone will advice you - just wanted to say really sorry your going through this at the moment , must be very scary with struggling to breath x

[drobbie in reply to svfarmer]

Thank you so much for your kind words. I also think catarrh might have something to do with this!

[Chanpreet_Walia LUPUS UK]

Hi drobbie,

I'm sorry to hear about the symptoms you are currently facing. Dryness of the mouth and nose can cause breathing difficulties in some people with Sjogrens Syndrome. Breathing difficulties can also occur in people with lupus, it is important to discuss this with your doctor as he/she can give you the correct advice and refer you to a pulmonary specialist or physiotherapist if required. We published a factsheet on lupus, the heart and lungs which you can read at lupusuk.org.uk/wp-content/u...

For tips and information on relieving a dry mouth, read our blog article at lupusuk.org.uk/dry-eyes-and...

For more information you can visit the BSSA (British Sjögren’s Syndrome Association) website here: bssa.uk.net/

I'm glad to hear Savlon is working for you, we published a blog article on coping with oral and nasal ulcers which you can read at lupusuk.org.uk/coping-with-...

The Lupus Encyclopedia provides helpful tips and information on how to treat dry/itchy skin which is listed below:

•Take shorter baths and showers

•Do not use soap on most body surfaces, except underarms and private areas

•After bathing or showering, pat the skin dry; do not rub (rubbing removes moisturising oils)

•Avoid using fabric softeners. They irritate dry skin.

We published a blog article on coping with itchy rashes which you can read here: lupusuk.org.uk/coping-with-...

Wishing you all the best.

[drobbie in reply to Chanpreet_Walia]

Thank you for replying, In 1958 aged 19 married 3 months took Zoster (Kerratitis)) Virus that caused all sorts of things eg. Shingles etc. I lost part of my sight. I suffer from dry eyes I use carbomer '980' 0.2 % in both eyes. Also 1 drop of Timoptol before going to bed and every 3rd. day Prednisolone 0.1%. in my left eye. This is the one which had shingles. I lost part of sight 62 yrs. ago.(We celebrated 62 years of marriage yesterday in self isolation!) I use Biotene every day and also have Salivix pastilles for dry mouth. I noticed in 2001 I had a dry mouth when taking Gabapentin for neuralgia ! I didn't come off until about 2018, later transferred to Pregabalin but didn't take many of them. I just came off it. In 2007 I had the blotting paper test that showed I had dry eyes.

I am waiting on my results back about my Echo. The ENT Dr. said he could see catarrh also I was at the Swallowing Clinic X Ray Video Fluoroscopy 23/4/19 . They also noticed a cyst at the top of my nose at the back. Nobody has mentioned the cyst again. I don't think they can do anything for me.

I intend to read all the tips you have given me.

Thanks again.

[Hidden]

YES! I have major choking problems too. I think every member of my family has given me the Heimlich (I have 5 children, so 6 family members) and I have given myself the Heimlich on the back of a chair at a crowded airport (very embarrassing!) Last time my husband Heimliched me (and he’s done it about a dozen times) was just last month when out of state taking my father-in-law to lunch. The scary thing is, each time I’m going through the choking episode, I worry it’s the last time. That no one will be able to get the food up.

Have you been to an allergist? You may need an Epipen? But definitely talk to your doctor. (I try to be super careful in all I eat but in eating out, they don’t list every single ingredient, and I have a long list of food allergies. I drink a lot of smoothies with plant protein powder when I can, for fear of choking.)

All my best, and please find your cause and your solution before it’s too late!

[drobbie in reply to Hidden]

Thank you for your concern. Isn't it a frightening experience. When you gave yourself this Heimlich do you press your stomach against the back of the chair? I haven't been to a allergist. What is Epipen? I can get this choking without eating. My last episode was the 8th. March this was the worst ever . I thought my end had come. I gave myself a big push from my nose then it released this evil thing then the air came back so relieved. I should have mentioned my problems along time ago instead off suffering in silence. Many of you have a lot of knowledge.

Thank you for sharing this with me . I will look into this. Please take care.

[Hidden in reply to drobbie]

Yes, the back of a chair.

An Epipen is epinephrine you carry to inject in your thigh in case of a severe allergic reaction to something. It counteracts the reaction. So you could also have environmental allergies that trigger this. My environmental allergies are certain trees, feathers, certain bushes and certain grasses. Can’t get away from it😆

[drobbie in reply to Hidden]

Thank you again. I will look into this tomorrow. I know I am lactose Intolerant.

[Hidden in reply to drobbie]

Yeah, I have 19 known allergies to common foods as well. I hate being that picky person. I never ordered ‘salad dressing on the side’ or, leave such and such out. But now I have to go over eleven thing with the waiter. Usually, I find restaurants very well educated on food allergies and care these days, but when I chocked last month it was at my father-in-laws favorite restaurant, which is an ‘all you can eat’ buffet. I just took some roasted chicken, figuring that would be safe, but them must have had something in ‘the rub’, the marinade, or spices that I’d have on way of knowing l 🤷🏻‍♀️ But yeah, it was very embarrassing.

[Hidden in reply to drobbie]

PS, they tried me on all the usual antihistamines, and a course of ranitidine (which is now pulled due to cancer links), but nothing alleviated things in the slightest.

[drobbie in reply to Hidden]

You certainly have your own problems to deal with. It is very difficult eating out because you don't know what is in the foods. I have had this experience also but more so the next day. I have to take a lactose tablet before each meal.

By the way I made a mistake, I have been to an Allergist in 2000. I live in Scotland and travelled to London for my tests. There are 3 stages in my results. Green Balanced, Yellow Weakened, Red Stressed. Today I looked at my results and found I was allergic to the following. I haven't looked at them for 20years what a surprise. The following foods are all Red.

Date, coconut, cocoa, chocolate, Wine red, Wine white, beer, chilli powder, Sugar cane, Zucchini, Tomato, lettuce, pea green, potato, white, broccoli, fig, wheat bran, rye, wheat germ, chick peas, turkey, lamb, beef, chicken, ham-pork, pork, peanut, hazelnut, copper-min, selenium-min. I must have taken one look at this and thought (OH MY GOD). I have changed my diet a bit but if I had gone along with all these results I would be living on bread and water!!.

Thanks again and look after yourself.

[Hidden in reply to drobbie]

Oh my!!!! I think your list is longer than mine!! We are a restaurant’s nightmare! 🤪Be safe!

[Hidden]

I have a very similar experience of choking and dry cough and breathing difficulties due to Sjögren’s. Today I recalled that my GP recommended Gaviscon of Peptac just before meals and prescribed Esomaprazole and Ranitidine for silent reflux. I also recalled that Sjögren’s expert Dr Liz Price recommends Carbocysteine in the BSR Sjögren’s guidelines and in a letter to my GP. So I tried to get this from them but my Scottish rheum has clearly never bothered to read these BSR Sjögren’s guidelines and refused saying she’d never heard of its use in Sjögren’s.

So a friend from this forum researched and discovered that It’s available as a supplement from Holland & Barrett under the name of n-acetyl cysteine and I’ve just started taking it - coughing a bit less today. Worth finding the Sjögren’s BSR guidelines on use of Carbocysteine drawn up by Dr Liz Price a few years ago and printing off for your GP or rheumy. It’s so scary when the dryness chokes us and a very common and underestimated aspect of this disease.

Best of luck. 😊

[drobbie in reply to Hidden]

I started off with Ranitidine then changed to Omeprazole 20 MG and then onto Esomeprazole 40MG. I am also on Mucogel, take it 20mins. after a meal 4 times a day. I heard about this tablet n-acetyl cysteine years ago maybe even on Richard & Judy show. I think I was impressed with it at the time but didn't buy it, maybe it wasn't the right time to take it. My husband has ordered three bottles last night so will see what happens. The only thing I never checked was is it safe to take when on warfarin!! If it works that would be marvellous . Thank you for that, you certainly have a lot of knowledge of Sjogrens.

Take care.