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Autoimmune disease

Sjogren's syndrome

18 replies

shockthemonkey · 03/08/2017 10:08

Recently diagnosed with this, and wondering whether anyone has any information or insights?

I am on Plaquenil (normally used to treat malaria) 200 mg morning and night, and three times a day I take 2 mg Chlorydrate de pilocarpine which is supposed to help with the saliva.

I also take eye drops throughout the day. The whole thing is quite a palaver for someone who used to enjoy robust health!

My saliva production is right down, stage 4 Chisholm ie most advanced stage, and it's this aspect of the disease that bothers me the most.

I find my mouth gets dryest at night, so wondered whether there is any benefit to taking the chlorydrate de pilocarpine later in the day (instead of just before each meal).

Also, twice in the night I have been bothered by a very uncomfortable mouth (feeling of friction between lips, cheeks and gums, feeling of inflamation like loads of mouth ulcers). I have woken up each time with swollen lips and tingly mouth... putting food in there is not a nice experience!

My specialist tells me that there is no diet that can help, yet googling seems to suggest otherwise -- gluten-free/vegan diet???

My specialist is God and I only get to see him once every six months. Hence my asking questions on here.

What can I expect for the future? Will I need to steadily increase my doses of plaquenil and pilocarpine as my symptoms worsen? Will my specialist, when I see him in September, up my pilocarpine when he hears about how my mouth's been behaving? What are the possible downsides of this/would it even work?

Thanks for reading and sharing Smile

OP posts:
shockthemonkey · 03/08/2017 15:47

... should have added that my gums are scarlet red today, terribly sore and inflamed. Is this a Sjogren's flare-up??? The inflammation is slowly receding starting at the tooth line... so I have to hoik my lips up to see it. Extremely strange and quite worrying.

Of course, my doctors are on hols. France + August = 0

OP posts:
redannie118 · 07/08/2017 20:23

Hi i have sjogrens along with scleroderma. The mouth involvement is awful-although yours sounds worse than mine unless im having a really bad flare. Ok so you can try an anti-inflammitory diet, avoid caffine and alcohol, a humidifier helps the dry eyes and corsodyl mouth spray (not mouth wash)is good for when your mouth is very sore .Mouth sores get infected very easily so i would suggest you take a trip to the gp and see if you need antibiotics-he can give you you a presciption for the mouth spray as well as i dont think its available over tge counter-but i maybe wrong ! Anything cold is also very soothing-try freezing fresh fruit juice like apple juice(as it has less acid than say orange juice)in icecube trays and suck on them. I hope that helps and unmumsnetty hugs,cos sjogrens is the pits !

Bettertobehealthy · 24/08/2017 20:27

Hi shock ,

sorry to hear about your battle with sjogrens.

This information may be of use to you , as you may, or may not know, Vitamin D is an immune system modulatory compound. I wonder if you have had your Vit D level checked.

I post below a podcast from the vitamin d council , (in USA) where the founder of the council talks to an opthalmologist, Dr Craig Brown , who has been studying the link of dry eyes with Vit D . Please have a listen to it. It is about his recently published research. Do check out the vitamindcouncil.org for more info.


media.blubrry.com/vdcpodcast/p/traffic.libsyn.com/vitamindcouncil/Craig_Brown_on_2015-10-30.mp3

Having listened , I hope you found it helpful. The numbers concerning blood levels that they are mentioning are USA numbers. ie. ng/l measurements , but in the UK , blood levels are measured in nmol/l , to convert you need to multiply the US number by 2.5. For example 20 ng/l in US is equivalent to 50 nmol/l in the UK. As a UK resident ,

They mention doses in IU of Vit D , ( International Units ..... these are the same in USA and UK )

If your blood levels are below 100 nmol/l in the UK units , then from listening to this explanation , you may find that supplementation may very well help you.

I have posted quite a bit here on mumsnet about vit D , if you need any more info , then do get back to me. or search under my nick for lots more information concerning doses etc.

Your GP can organise a Vit D test for you , or you can get one privately much quicker at an NHS hospital Lab , over in the West Mids. Sandwell Hospital Trust. Unfortunately they do charge £28 , if not ordered by a doctor. However , the blood spot test you send to them comes back with results emailed back within a week. So very fast ! here at
//www.vitamindtest.org.uk

Best of luck ,


BTBH

.

Bettertobehealthy · 24/08/2017 21:59

ooops... The Vitamin D testing site layout has changed over the last few weeks .... Try their other page here

www.cityassays.org.uk/vitamins.html

BTBH

user1480267413 · 28/08/2017 22:17

bettertobe healthy. Thank you for the insight. I had had lots of tests and am now awaiting a lip biopsy.I have been feeling so down that I asked the GP if it would be a good idea to pay for it in order that it would hurry things along. He thought it would be difficult to arrange here and that, as I already have an eye spray and mouth gel prescribed, it wasn't worth doing. I am doing as much research as I can.

ginghamstarfish · 09/03/2018 13:23

I was diagnosed about 12 years ago. GPs could not help me, so I did research online and asked for test for Sjogrens. It was confirmed by blood test. Had a sialogram which also confirmed it. Briefly took pilocarpine but it did not seem to help so I stopped as I did not fancy the possible side effect. Was seeing the rheumatologist regularly for checkups (in England) but moved and new GP said it did not seem necessary, which I agree with as there have been no joint problems etc. I see the ophthalmologist once a year for a check up, and dentist every 6 months. My eyes are much better since having permanent plugs done a few years back (normal plugs kept coming out). Dry mouth worst at night, use Oral Balance toothpaste and mouthwash, gel, and have a variety of SSTs (salivary stimulating tablets). All on prescription. Sometimes use coconut oil in mouth instead. Always keep sugarfree sweets and gum in case of dry mouth during the day. I'm glad to report that it has not got worse in the last 12 years, perhaps a bit better as I've worked out what's best for me. If you have dry eyes try warm compress, clean margins with Blephasol, be sure to use only preservative-free eyedrops. If you want any more info pls ask.

ginghamstarfish · 09/03/2018 13:24

Forgot to say, interesting about Vit D, will ask GP to test next time I have blood tests.

Purplelife · 23/03/2018 15:33

Interesting about the vit D. I was low on Vit D and needed supplements when I was first diagnosed with Sjogrens. I wasn’t given medication other than eye drops.I was being diagnosed with fibromyalgia at the time though .

shockthemonkey · 24/03/2018 18:30

Oh goodness, you must think me so rude but I never saw these very helpful replies.

Thank you so much Purple, gingham, user, better and redannie.

I will definitely follow up the vitamin D thing. I am in France but they are very keen on vitamin D here and I will get a prescription no problem.

Has anyone tried a fancy diet? I have gone vegan and gluten-free and am feeling a bit better (except for the mouth). I would recommend it, although if you follow something called AIP (auto-immune protocol) it actually proscribes things like potatoes, tomatoes, bell peppers and aubergines, some of my favourite foods!

Thanks again everyone for commenting, and sorry that I only just found your replies.

OP posts:
Purplelife · 24/03/2018 21:28

I will need to look into AIP. I do better off dairy and DH and I are going to start looking at things to take out of our diets as well as going dairy free again ( we are on a vegetarian diet) and then maybe look at gluten free for a while. I’m just cautious of having too much soya as when I got hypothyroidism, I was on a vegan diet and drinking soya milk every day for b12. I cut soya out, and went into remission. I know it can effect hormones and the way I see it, if you can have more than one autoimmune disease, there needs to be a common factor at work.

Purplelife · 24/03/2018 21:29

Hyperthyroidism I mean.

shockthemonkey · 25/03/2018 10:17

Yes, Purple, there must be a common factor. My doctors have asked me about my exposure to sunlight, which makes the vitamin D argument from Better seem immediately plausible.

I don't like soya either. Could you try vegan and gluten-free and supplement with pills? That's what a dietitian is suggesting for me here.

I have just been told by another expert (this one in London, an oral medicine specialist who deals with Sjogren's patients and other auto-immune patients) that the state of my gums suggests lupus too. Which I can easily believe as I was originally diagnosed (before they found Sjogren's) as having pre-lupus markers in my blood.

Well at least there's a lot of crossover between lupus and Sjogren's symptoms, so as long as they don't get more severe... and maybe with lupus there are other medical avenues I can explore.

Yes, Sjogren's sucks and it's no good for the love life.

OP posts:
Purplelife · 25/03/2018 11:17

That’s a very good idea, I think I will need the pills.

I was doing some research after my post and searched google news for Sjogrens etc. I then put in autominnune disease and actually they have found a break through this year - gut bacteria is now believed to be the cause of autoimmune disease. I also found 70% of our immunity is in the gut! I then started looking into gut bacteria health and there isn’t much in the way of our health it isn’t linked to ; weight and moods ( apparently while it’s been know that our feelings can cause a reaction in the gut, it’s now a two way street and our gut can influence moods/ depression).

I plan on spending more of today looking into how to get good gut health. I also looked into food tolerance tests which are a total waste of money. So I’m going to do a food elimation diet, however having a restricted diet anyway, I can avoid 30 foods at once. So found an article where you do it in stages ie remove four foods groups for 21 days and then introduce one back for a day or two, record how your sleeping, moods, skin and health complaints are. Then take it back out and do the same with the next food item. I’m actually quite excited. The good thing is if you have an intolerance to something you may only have to avoid it for 6 months, giving time for your inflamed gut to settle down.

I’m just so fed up with all these bloody autominnune conditions. And I did wonder about lupus myself since it’s so tied into Sjogrens but the issue is it is very overlapping with my fibromyalgia. I can even relate to symptoms of Celiac. Maybe we should all be tested for every single autoimmune disease known since they overlap so much. Hahaha

shockthemonkey · 25/03/2018 11:40

Wow. I was also reading the same things regarding the gut.

I spent a week at an amazing health retreat, Kamalaya in Thailand. There I was on the most delicious and satisfying detox diet: that is basically the same as gluten-free vegan with no sugar at all and a few other known inflammatory foods (such as, believe it or not, potatoes, tomatoes, aubergines and bell peppers) also absent. I felt a lot better (but some of that may have been down to the relaxation, the various therapies, climate etc).

At Kamalaya I had four sessions with a brilliant acupuncturist who told me that in Chinese Traditional Medecine, the first line of treatment against disease is DIET. He does not believe in drugs at all. Diet, followed by things like acupuncture to help things along. He was pretty persuasive.

OP posts:
Purplelife · 25/03/2018 11:57

That retreat sounds amazing! They say a lot of the things you are allergic to you eat a lot of ; I like tomato based pastas and potatoes!

Yes I agree with diet - mine has been very unhealthy. I’m also starting to appreciate the mind / stress connection, which is why you had lots of relaxation in Thailand as well. I’m going to start meditating again, even 5 minutes a day can make a difference. I’m also going to start journaling which I haven’t done since a teenager.

I have always wanted to try acupuncture. Do you plan on having it again?

shockthemonkey · 25/03/2018 16:15

Yes I am hoping to find a good acupuncturist here in Paris.

Dr Song from Kamalaya advised that I find someone who is either Chinese or Vietnamese and who studied the full TCM degree in China... he doesn't really rate the Western doctors who have done some extra training in acupuncture on top of practicing mainstream medicine.

So the search is on! I will let you know how it goes.

I also had a very unhealthy, "convenience" diet at times.

OP posts:
Purplelife · 25/03/2018 20:50

That completely makes sense. Hopefully some of them will have a website where they talk about where they have studied or discuss their training.

Btw I love Paris. What a wonderful city to live in :)

Bartollie1 · 22/12/2018 06:00

Hello does anyone have sjogrens disease? Mine has only just been diagnosed and I’m having a severe flare up. I’d love to know if anyone has similar symptoms (alongside all the dryness) of finger and toes tingling and going numb, all over body ‘buzxing’ Brain fog and diziness? If so, is it episodic, does it go? Thanks so much.

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