Dysphagia(difficulty in swallowing) with Sjogren's syndrome.

[ROBERT_CARMICHAEL]

I am a long retired doctor who has had SS for about 30 years and besides the rheumatoid arthritis, dry eyes and mouth, also have a very intermittent (once every 2 to 4 weeks) complete inability to swallow food that does not reach the stomach and has to come back up and lasts some 6 to 12 hours. It is difficult to imagine that any drug would help. I already take methotrexate weekly, prednisolone, hydroxychloraquine, salazopyrin and meloxicam. I also get lip ulceration about once a year that takes months to heal. I would be happy to correspond with any other sufferers.

[Hidden]

Hi Robert. Sorry you have such problems. I have a similar mix to you and swallowing can be very problematic for me too. I live in Scotland and take Mycophenolate 3g daily. I’ve tried all the ones you are on but they all made me very sick.

Two things I wanted to ask - have you looked into the possibility of GERD since you mention Meloxicam - which I believe is a NSAID? Reflux can be silent as I’m sure you know - and contribute to swallowing and digestive problems.

Also have you been tested for Gasroparesis - which is quite a common systemic feature of Sjögren’s I believe? This is what I think is causing my own swallowing issues but I will hopefully find out when I see gastroenterology at some stage over the next six months.

My Sjögren’s affects my nervous system and GI system most of all. Judging from the fact that I struggled greatly with dry eyes and mouth and Alopecia as a child right the way through to my menopause - I suspect I have had Sjögren’s and Hypothyrodism for most of my life. I’m 54 and was only diagnosed last year by +ANA and 100% positive lip biopsy. I was misdiagnosed with RA six years ago which is how I’ve come to try so many of the meds you are currently on. I take Ranitidine twice daily and this has helped me probably more than any other med.

Finally have you ever tried or been offered a Pilocarpine? I’m being encouraged to try this now to aid swallowing and GI tract problems. But I’m not sure I can face trying another medicine with known side effects.

[ROBERT_CARMICHAEL in reply to Hidden]

My Dysphagia only occurs for a few hours every 2 to 4 weeks and really is only a problem socially from time to time. I confirm that meloxicam is a NSAID. Thank you for your points.

[Hidden]

This is what I think I have going on. Could it be same for you?

hopkinssjogrens.org/disease...

2. Trigeminal neuralgia and glossopharyngeal neuralgia

Sjögren’s syndrome can cause numbness or burning of the face, called “trigeminal neuralgia.” Pain in the back of the throat, which may worsen while swallowing, is called “glossopharyngeal neuralgia.” Patients with trigeminal or glossopharyngeal neuralgia can have agonizing mouth and facial pain. These neuropathies may co-exist with other neuropathies in different parts of the body. For example, up to 20% of patients with a “small-fiber” neuropathy may also have trigeminal neuropathy.

[ROBERT_CARMICHAEL in reply to Hidden]

I do have peripheral neuropathy affecting my feet probably caused by leflunamide taken for my rheumatoid years ago. Gabapentene seems to keep it to acceptable levels. I do not have any of the neuralgia you mention, but the dysphagia could have a neurological cause.

[Hidden in reply to ROBERT_CARMICHAEL]

I wish I could take Gabapentin but couldn’t tolerate it. My neuropathy is diffuse - it affects all of my arms legs and face but it’s now more icy numbness and pins and needles after a few years of torturous pain. They say that Sjögren’s small fibre/ peripheral neuropathy is usually self limiting but I think someone forgot to tell mine when to stop progressing lol! It affects my autonomic nervous system increasingly and terrible in my arms so altogether I think the neuro stuff is progressing slowly but surely.

[ROBERT_CARMICHAEL in reply to Hidden]

Sorry to hear this, but only a neurologist can help, if at all.

[Hidden in reply to ROBERT_CARMICHAEL]

I’m under neurology already - she says Sjögren’s gangliopathy - nothing they can do.

[Megansheart]

Hello Robert,

Sorry to hear of your Dysphagia episodes.

I have an inkling of this, as early on in my Sjögren's journey I experienced difficulty swallowing. Subsequently an Oesophageal Manometry test revealed significant disordered motility of the oesophagus. Even worse was the Gastroparesis where the (GES) Gastric Emptying Scintigraphy showed almost zero digestion of solid food in two hours. Then the bowel took a hit too. So essentially the entire GI tract became paralysed to one degree or another.

The swallowing these days minimally affects me. For the Gastroparesis I still take Domperidone (Motilium). After five years of having a liquid diet only, I can now eat solid food but need to be careful not to eat too much. The lower end is still terrible and I should be more vigilant with Movicol etc. I tried Prucalopride but it made me incredibly sick.

I have other neurological symptoms, such as POTS and peripheral neuropathy for which I am on low dose Propranolol and Lyrica respectively.

Since I tested seropositive for Sjögren's Syndrome (2015), eight years after symptoms started, I am now on Hydroxychloraquine after having seen a Rheumatologist.

It was a long and frustrating journey to get to my S.S. diagnosis but at least my individual symptoms were adequately addressed which helped make a very miserable time when I was quite ill, more tolerable.

[ROBERT_CARMICHAEL in reply to Megansheart]

Thank you Megansheart, I too have a peripheral neuropathy of my feet probably caused by leflunamide taken years ago for my rheumatoid. I find gabapentine keeps it down to bearable levels. As to my dysphagia, it only occurs for a few hours every 2 to 4 weeks, but sometimes is socially disruptive.

[Tassa]

In regards to the lip ulceration I had that problem as well and discovered that it was a lack of the b vitamin that caused it. I started off taking the b vitamins for several months which stopped the problem and now take a course of multi vitamin and mineral boost from a chemist or health shop and have stayed on it. Those who have an auto immune problem seem to be lacking in vitamins. To help prevent the problem of the ulcerated mouth make sure your lips do not dry out at any stage as this seems to start the ulcers off again. I use vaseline on my lips to keep them moist. Avoid some of the lip balms from the supermarkets as they are designed to dry your lips out so that you have to keep on using them. I carry a small supply of vaseline in a little pot with me so that I have access to it at all times.

[ROBERT_CARMICHAEL]

Thank you. Yes Vaseline does help

[Anna-bell]

Robert - you are my second reply today - I am 63 and have had SS for 42 years. It sounds like your salivary glands have deteriorated to a level thats worse than mine. I don't know if it would give you any comfort at your stage but I found food with the right PH balance was best for me and what helps me tolerate mouth symptoms the most is having a cup of sweetened hot tea with milk just before I retire to sleep - the PH balance of quite a few teaspoons of sugar - coupled with lactose in the milk I believe helps to coat the tongue. I feel it stays there while I'm asleep and helps to retain moisture in the mouth to a level that is bearable. I also feel it has helped me retain on-going moisture levels over the years without it dropping too severely. I've tried to keep up with moisture levels in eyes with non-preservative eye-gels at night and liquid eyedrops during the day. I am not always good at eye topicals because I fall asleep too quickly sometimes but my immunologist believes keeping the eyes moist is the key. I have given up on drugs some time ago although I used to take allergron for my sleeping disorder - I understood in the early days I had some sort of fibro-myalgia. It has been researched I believe by our nordic counterparts and I read one research paper that linked bruxism (jaw grinding and an inability to sleep) with SS. I slept very well after taking Allegron and the problem went away completely but I can't take it any more because it causes further dryness in the mouth and I don't need it any more anyway. I don't completely understand network as I am new to it but feel I have a lot more experience to offer and would like to respond to you further.

[ROBERT_CARMICHAEL]

Thank you Anna-bell, I am 84 and a doctor not specialised in anything like rheumatology and have had Sjogrens for over 30 years. I take a vast array of immunosuppressive drug which keep me going. My diet is very limited to foods that do not need much chewing or saliva, but I seem to keep fairly fit on it, and have absolutely no problem sleeping. I do find that milk(not skimmed) does keep my mouth moist for much longer than water.

[Gidgee]

Has anyone had severe deterioration of gums and teeth as a result of decreased saliva in the mouth and a reduction in taste and smell. Is there anyway of getting the Dental Scheme by the government for people in low income to recognise this health deficit as being SEVERE for overall health in sjogren's sufferers ?

[Nousernames in reply to Gidgee]

I have spent the last seven years at the dentist. Most of my teeth have had root canals, or have been extracted.

I have several bridges where I had to have teeth pulled.

Now my front teeth are breaking off.

I am in the U.S and there isn't any help here with dental. I am also low income.

The Sjogrens foundation here has been talking about the fight to make sure we have dental insurance, but they have been talking about it for seven or more years.

We really need some help with this.

I use lidocaine to numb the pain in my gums.

It's already allot to deal with all of the other health problems, but no one seems to recognize this.

I hope you can find a program or a dentist willing to work with you.

I am still looking.

[honeybug in reply to Nousernames]

So sorry to hear of your suffering.

I’m in Michigan. Have you checked with Human Services to see if they can get you some dental help??

Things have changed so much with the last President’s health care program.

But if you haven’t checked there already it may be worthwhile.

Bless your soul. Having such dental problems is terrible.

I just said a special prayer for you dear.

Best wishes for a better future.

Take care.

EJ 😊🌿🌸🦋🙏🤗💗😘😇🕊

[Nousernames in reply to honeybug]

Thank you. I have not checked with DHS. I have so many problems when they send me the redetermination for my medicare once a year, I'm afraid to ask for any additional help.

It's pretty bad after working thirty years and paying taxes and Social security, when you are in need they treat you as if you enjoy being sick.

Medicare pays eighty percent of medical bills and everytime my rheumatologist attempts to change my medicine, they won't pay.

I have been to a DHS office 3 or 4 time's and left the office in tears each time.

I hate to complain. I am just so tired of fighting for basic needs.

My caseworker has cancelled my medical every year and each year the reason is not turning in my paperwork, when I know my proofs and paperwork are sitting on her desk.

I sent it one year that required a signature and she cancelled it.

When I called and told her, I have proof you received everything including the day and time, she said, I will call you back. Twenty minutes later "she magically found it".

I have sent request for information on any program that I would qualify for to Oakland county via their website.

I will check with DHS though.

I'm not going to let one lazy caseworker get in the way of my need for dental care.

Thank you for your time and prayers.

You are very kind,

JT

[honeybug in reply to Nousernames]

You’re welcome JT 😊🌿🌸🦋

My brother was medically retired and on Medicare since his 20s. Depression is a big part of his problems.

He applied for Medicaid and got help with his 20% not covered plus his meds.

You can also check with your Primary Physician and see if they can refer you to a dentist that accepts low income patients.

You can check with your county and see if they have any data on dentists that aid low income citizens.

When you fill out your paperwork for your DHS make copies and when you mail it request a signature to make sure you have proof they received it.

My brother’s case worker has a vendetta against him. She always rejects his papers. One year because it wasn’t on her copier paper...now I ask how nuts is that???

I think they are all told to give all clients hassles so they won’t collect a cent.

Don’t give up. Don’t let them win. Get someone to help you when you’re at you’re Weakest. You deserve benefits if your doctors all say you do.

You take care. Best wishes and I just said a special prayer for you.

EJ 😊🌿🌸🦋🙏🤗💗😇😇🕊

[ROBERT_CARMICHAEL]

I do find that the lack of saliva is probably the worst effect of Sjogrens as far as I am concerned and has not done my teeth any good over the years, but I have no knowledge about the Dental Scheme. Sorry.

[Gidgee in reply to ROBERT_CARMICHAEL]

Thanks for your reply;

I also find milk a saviour to my mouth in retaining moisture and dry throat associated with various allergies in hay-fever season.

[Gidgee]

Just read part blog on Gastroparesis??

[Gidgee]

Gastroparesis may be associated

[Debbweb01]

Hi Robert I'm Debbie ! I found SS site thru APS site/ Hughes Syndrome! I was Diagnosed soon after my Antiphospho Lipid Antibody Syndrome! I lost my leg to APS then diagnosed! For years I suffered with blood clots and it was all in my head till I lost my leg! As with many other Autoimmune diseases, SS goes with APS & RA which I have too! As a child I had Juvinile RA! Then it hid for years! Now I'm not surprised it's back and really never went away! I have same swallowing issues like you! It comes in spurts and I eat oatmeal, Farina, rice, any easy soft foods! It can last for weeks! I hate it cuz I must spit it back up and can't eat! Why does this happen with SS? Is it because our throats are dry? I had surgery it was so bad! They found inflammation on one side of throats that stays there along with some pollups. Right now I'm in a terrible flare up! I have heart disease and just looked up SS and heart and there's a new study out related to heart and heart attacks? I'll try to send it! I'm going to new Rheumatologist on April 1st, she specializes in SS! I shall let u know! My tongue is swollen now with many cuts and cracks and small white dots that get larger at back of tongue! I got something cald Magic Swizzle and oral surgeon gave me Lidocaine in liquid form that helps temporarily! I'm getting chest pain and left shoulder pain that travels down my arm into my hand! Going for tests soon I hope! I take nitrostat when it comes! Thanks for sharing! Sorry u suffer with this, but it's nice to share! GODSPEED

[DBENNETT34]

with sjogrens syndrome can you eat by mouth. my atypical face pain was i could not drink liquids my back palate of mouth keeps draining the wrong way. i am sure it is from a hit to my face where i got a broken nose but did not know it at the time. now with 2 sinus surgeries ethmoid surgery. ablated spg nerve (that helped some) and other nerves with big needles to block it does not seem to work but i feel it when they hit the nerve. i can eat but it starts mucus and saliva so bad i have to quit even with formula for the mci-key peg they put into me to get enough water and pills. i still can swallow on the right side but the left side acts up immediately.