Hi all,
Please forgive me, Im not very good at talking especially about myself but I need to get this out.
Im 38yo, male, Australian living in Japan. Hard enough as it was but now this.(You`ll have to forgive me but Im still in shock and feeling a little sorry for myself)
Ive been trolling the boards for about a month now after hearing the word Sjogrens Syndrome for the first time in my life. All of a sudden after having a cough for about a week I lost all saliva in my mouth, not just a little, All of it. Ive since had blood tests (negative) and a lip biopsy(get the result of that tomorrow). I have been given some eye drops and Salagen. After taking the salagen I realised, both paratids arent working and since I had my left sub-mandibular removed due to a stone 2.5years ago I only had the right one working with medicine and not very well at that. I think the ones under the tongue are still working but im not too sure.
It has since gotten worse and the Salagen is having little if no effect at all now. My eyes have also gotten progressively worse, mostly at night though, I wake up with dry eyes and have to put drops in them. I also have a dry nose, throat and a rumbling stomach and constipation. I also get rashes but Ive been getting them for years. Same as the brain fog, for years Id be having a conversation and half way through stopping not knowing what i was talking about. I now have an idea those episodes were linked with this? I dont have any body aches though and from what Ive read I hope I never do.
So anyways, after reading a lot of whats on here and a lot of its been very helpful, I now sleep with a humidifier, have a new found urge to look after my teeth, always carry a water bottle, have toothpaste with fluoride but still have a lot of questions.
Ive jumped into a few things trying to save what little is left of my one functioning saliva gland and Im not sure if theyre right or not. Mainly being diet and supplements.
Diet: I switched straight to the Autoimmune Paleo on which Ive lost almost 11kgs in 1.5months. Im not sure if it is having any effect but dont wont to stop for fear of losing all saliva. Im now not overweight at 67kgs for 161cms.
Supplements: I went out and bought a lot of supplements in hope that maybe they would have some effect on my saliva. Up until this point they havent.
I ask these questions having been told by my Drs that theres nothing they can do, I dont need to do anything, they can only treat the symptoms and I have to learn to live with it. Which is all good but that gives me no faith in them(Sjogrens is rarer here than in other countries and im sure even rarer in foreigners here) and isnt going to stop me trying to make this better even if remission(theres that mystical, long alluding word again) is the best that it gets.
Also I understand everyone on heres not a Dr but an educated opinion is greatly appreciated.
Should I be on a different diet or a diet at all? Ive read ppl are on gluten free, paleo a lot but I dont really know why.
My supplements are Fish Oil, Flax seed oil, Resveratrol, Ginger, Turmeric, C q10, Green Tea Extract, Vitamin B complex, Vitamin D, Vitamin E, Zinc, Calcium and Magnesium.
Is this too much?
Is vitamin C a good or a bad things for people with autoimmune disorders?
Let me thank everyone in advance. Also im sorry the above isnt very well written but im sort of in a daze(brain fog) which has become more common lately.
GgcJap
Welcome to the forum. Your test may be negative and you can still have Sjogren's. You can check our signatures for Ideas of what we are taking. I did not see Bosweillia in your list. I found that R-Lipoic-Acid and Acetyl-L-Carnitine can be a big help. 6-8 ounces of fresh carrot Juice can help with pain.
I hope that you find management that works for you. I also use meditation and reflexology for pain management. I use Reiki to help me to heal.
Welcome to the forums from another newbie.
My journey down this rabbit hole began in earnest in June/July, when I thought I was suffering from a sinus infection and post nasal drip, which developed into horrid dryness of my throat/mouth/sinuses and I thought I had no saliva either (though once in a while I was able to "force" some saliva by "milking" the glands under the tongue). 10 days or so of very little sleep and just about no solid food, and about 2.5-3 gallons of water a day left me on the edge of complete collapse, and I lucked into a physician's assistant on my 4th trip to the emergency room who hit me with a good dose of decadron, which seemed to have dropped my inflammation and got things on the road to control. Hang in there - as if you keep going day to day you should be able to get out ahead of the symptoms and keep them in check as well as possible.
I was obese at the time (275 lbs/5'10 or 125KG / 178cm), and am now 204lbs / 92KG). My diet was pretty bad (take Ior pizza delivery often due to focusing too much on work rather than taking care of myself), and I've since got back on track with a paleo type diet, but not a full AI protocol. I used good, fatty, moist sashimi to ween myself back to solid food for a long time - expensive, but it was worth it (sake, toro/maguro, hokkagai, amaebi, hotate). My gut is much better now, though I do also take a digestive enzyme with large veggie intake to ensure it all digests fully (verified by a quick inspection for "leftovers" after BMs). People will adopt gluten free or other exclusionary diets just to rule those out, as I believe the conventional wisdom is that with an automimmune disease, you may be more sensitive than others. You can try the (I don't recall the name) diet that is a "reset" to help heal your gut (excludes things like dairy/eggs, glutens, simple carbs, nightshades (potatoes, peppers, some other stuff), and then add things in one at a time after a month or so to see how you react, or you can just use your brain bucket to avoid exclude those foods that you know cause you distress (gas/bloating, indigestion, reflux ...).
It's really trial and error to find things that work for you. Like you, I lurked here grabbing ideas and have spent quite a bit of money buying all of the products people have listed to find what works for me - for example, I found the the biotene products tend to burn my mouth, especially the gel, and most "dry mouth" products with any type of mint tend to burn when I'm really dry. For others, the Biotene stuff works great. There's a product line called Oral 7 that seems to be exactly like the older Biotene products were, and haven't given me problems as of yet, at least, for what that's worth.
Bottom line is that right now, your symptoms are ahead of you. It will take a little time and discipline to catch up and then get ahead of them. Once you get to that point, it should become more manageable, leading you to feeling less like you're a dried up lump of flesh and more like yourself again. Hang in there, keep focus, and use this forum to it's maximum effect. Also, do not be afraid to get second opinions from other doctors - I don't know what it's like in Japan, but here in the US it seems pretty hit and miss with any understanding of Sjogren's and/or sicca.
Hi Joe, thanks for the reply. I understand the test can be negative and still have it, my worry is that it is and they do what they did in the first place and just hang me out to dry,
I haven't tried bosweillia, r-lipoic acid and acetyl L carnitine yet. I have to get most of my supplements online as they are either not sold over here or the doses are very small compared to America, Australia. Can you recommend any good sites that deliver internationally?
Hi Pete0211, thanks for the reply. Sounds like you're a lot like me. I'm thinking about switching from the autoimmune paleo to just the normal paleo and it's only the fear of losing all saliva all the time even on salagen that is stopping me. When I first started taking it 5mg would last me 3-4 hours and now I'm lucky to get 1.5. I don't think my stomach is absorbing things properly. Can I get the digestive enzymes online?
My diet has been basically chicken and vegetables and lots of water. Sometimes green tea.
As for mouth care there doesn't seem to be a lot over here, Yhey sell the Biotene but it's not the dry mouth version. I've found a toothpaste with fluoride and also a mouthwash with fluoride it I've got the feeling I'm going to need a gel for my mouth soon. Maybe that too will have to be online.
As for spending money this is getting to the point of ridiculous and I'm only just starting.
I really hope I can make it through this because at the moment my heads barely above water and the shorelines nowhere to be seen.
GgcJap
Definitely get and use a gel as soon as you can - it helps greatly. There is a Japanese made gel named "GC Dry Mouth Gel" that I use and it works pretty well (for me, at least). There is also a new one from Australia that might be available to you (you can order it online from their website) named Denta Med Gel.
Give the amazon.co.jp site a try - I did a search for "dry mouth" and plenty of good options (and some I've not seen available in US) show up.
Thx Pete0211, I'll definitely have a look at Amazon.
Do you only use the gels when you're sleeping?
GgcJap
I use them during the daytime when the dryness is really tough to handle - one day during July I went through almost two tubes of gel in a single day.
Some supplements are not allowed out of the US or there are different formulas. I use LEF.ORG. You could use Swanson's Health foods, or Pilgrims Pride in the US. There may be a provider in your country. Some of the herbs I take come from China but I get them through LEF.
Thx Pete0211 I'll def look at getting some.
Thx Joe I'll look at the sites and see what I can do.
This looks and feels like it's going to be a long road and I'm very grateful for your guidance.
Thx again
GgcJap
Welcome to the board, GgcJap. If Salagen isn't working well for you, see if you can try Evoxac (generic is cevimeline) instead.
If your lip biopsy comes back positive, or your doctor is willing to treat you being seronegative with negative lip biopsy, plaquenil may help you with the brain fog.
Saline spray or nasal mist is good to alleviate dry nose.
Hi sunshinedaydream, my biopsy came back negative and the dr told me I don't have Sj?gren's.
TBH I still think I do. He wouldn't give me plaquenil as it was only released over here last year and isn't used to treat Sj?gren's here. He told me if I wanted it I could buy it off the internet and he can help monitor my progress. He did give me prednisol 10mg a day for 21 days to start. He told me he still thinks it might be autoimmune after trying to tell me it might be stress related.
2 questions
Prednisol sounds pretty scary anyone with any experience with it?
What tests do I need before I start plaquenil?
Thx
GgcJap