Just diagnosed with Sjogren’s Disease aka Rheumatoid Arthritis- it’s taken 4 yrs to diagnose..

[Dynamic63]

Seeing Rheumotologist for 1st appoint tomorrow. Just diagnosed with Sjogren’s Disease + Rheumatoid Arthritis 👎🏾. Any suggestions Re meds etc? I will not go near Methotrexate due to being chemotherapy derived which my late sister died of last year when she had her 1st dose of chemo for a rare form of cancer diagnosed only 4 mnths prior . I have a double genetic mutation which I believed triggered this sudden diagnosis of mine . I am devastated as I already have cardiac muscle/ liver / kidney damage - I’m only 56 yrs old . TIA 🙏🏾

[Curious20]

My husband was diagnosed with sjogrens and ra last year. Since taking 2000iu of vitamin d and changing to the keto diet he suffers very few symptoms and is even getting stronger than before he was ill.

It worked for him, but if in doubt I suggest reading about “leaky gut”, vitamin d and autoimmune disease, as well as gut health.

[chlorophyle in reply to Curious20]

I agree with you. I have had many autoimmune problems and a paleo diet has eliminated all my symptoms.

[Dynamic63 in reply to chlorophyle]

How has the paleo diet eliminated all your symptoms? How long have you had Sjogren’s disease and your age ?

[chlorophyle in reply to Dynamic63]

I was not diagnosed with sjogrens but had extreme symptoms in eyes, nose and throat. I had already begun an elimination diet which had got rid of joint pains in shoulder, wrists and ankles and chronic lower back pain. I realised my sjogrens symptoms and poor sleep had followed a week of a brand change for my bipolar medication. I had become sensitive to chemicals and additives. I am mid 60s. I have been free of all symptoms for 7 years now.

[SuzanneMaree123 in reply to chlorophyle]

Hi can you please tell me what foods you have eliminated thanks

[chlorophyle in reply to SuzanneMaree123]

I eliminated gluten (barley rye & wheat and all their derivatives), soya and most legumes/beans and white potatoes. I still eat dairy and cook with tomato puree.

I originally just gave up wheat (after noticing that it made my costochonditis worse)but after a while I found that I had diarrhoea after eating most beans (but not lentils). Whenever I had any pain or poor sleep I would revert back to a basic diet of meat/fish and leafy green vegetables to see if it cleared up.

My GP told me I could have steroid injections for the frozen shoulder (if I still had it after 18 months!) I went back on the strict diet and it resolved in 7 days. I believe that it had been triggered by artificial sweeteners.

We can have very individual reactions to food and additives and sometimes our body carries on with a bad reaction for up to 4 months before we get back to normal. Also how long it takes to recover depends on how damaged our tissues are.

[SuzanneMaree123 in reply to chlorophyle]

Thanks I am dairy and gluten free. Legumes may have to go to

[Dynamic63 in reply to Curious20]

This is interesting as my Vit D is very low & after contracting clostridium deficile 3 yrs ago, along with my pancreas not working, I still continue to have a bloated gut and even though I only eat one small meal a day now ( my appetite is lost) , I have a constant bloated stomach and have around 6-7 bowel movements per day. 4 yrs ago I

Was 52kgs & my weight has plummeted to10 kgs more 😳 even though I hardly eat. When

the rheumatologist said that I carry excessive weight despite my build I was mortified .

[Curious20 in reply to Dynamic63]

The Rheumatologist said people with RA tend to have low vitamin d. When we looked into vitamin d, it was amazing just how many medical conditions are linked to it. Here is a good website : vitamindsociety.org

There are two types of vitamin d supplements. You need the d3. My husband is taking 4000 IU once a day.

You mentioned your pancreas, do you have diabetes? Have you been to see a gastrologist regarding your on going gut issues? I would definitely take probiotics supplements, if not already on them. My husband who had long time bowel issues (he is waiting on the pill camera result) doesn’t have ongoing stomach issues (at one point, it was like anything he ate seemed to aggravate it) since being on the keto diet. No bleeding or feeling uncomfortable and in pain. He went on a food elimination diet a couple years back and when he went off gluten for a while, his skin improved and he felt much better. The gastro said that everybody had a bit of gluten sensitivity as we weren’t meant to be living on that kind of diet. What doesn’t have flour in it these days? And so while my husband is no longer gluten free, the only gluten he eats is in the occasional piece of low carb toast he has with eggs. He can eat that 10 g of wheat carb without an issue. The last flare he had was caused by eating a very thin pizza crust base that was the lowest carb in the store for a treat. So it was still like 47 g of carbs for half of a pizza and he only had half. I don’t know if it was the carbs or the gluten base.

So I think if you could reduce your carbs - avoid pasta, potato, rice and bread (unless low carb) and don’t eat low fat foods such as yogurt, have full fat or 5% Greek yoghurt and avoid milk and see how you go. I was told I was allergic to dairy (which can also cause inflammation in your body) but it’s only milk . Hard cheeses, butter doesn’t bother me. I have a tiny amount of phlegm if too much double cream.

I’m telling you all this because it’s really hard to isolate but all the research is leading to reducing your inflammation in your body and gut health and of course not being deficient in vit d! The pills my husband takes daily are vitamin d 3 (4000 iu ) physics advanced probiotics (50 billion cfu), omega 3 algae oil (there is no fishy taste), super b complex , iron ( has ongoing issues with absorbing iron )turmeric combined with ginger and bromelain, calcium combined with magnesium and zinc. I started him on a supplement last week from britelife on Amazon uk called Boswellia Serrata 2000mg which is supposed to help with fibromyalgia.

I hope some of this information can be helpful to you.

[Dynamic63 in reply to Curious20]

Thank you so very much. I have looked at the Keto Diet on line yesterday and it’s certainly more friendly than the paleo diet. I

Live cream, butter cheese 🧀 and there is now even a Keto Icecream💜. My vit D is too low and in 2018 I had a colonist/gastroscopy which was completely clear albeit having chronic gastritis due to contracting clostridium deficile ( through antibiotics die to a bizarre eye infection) and helibactor pylori. Prior to this it was found they pancreas wasn’t working😳 so I was put on Creon ( pigs pancreas enzymes 🤮) only to be told by the gastrologist that my pancreas was working ! Along with constant pins and needles in my fingers ,My teeth are the biggest worry as I have to have a second bottom molar removed and decay keeps creeping up out of nowhere. I need to have bridgework , crowns and my veneers Redone but have been told I’ll waste my $$ as they won’t last with Sjogren’s 😳. So now I’m

Faced with ? Having my teeth removed and false ones ?!

[merlin136 in reply to Dynamic63]

My dentist told me I can’t have false teeth as sjorgrens cause constant thrush and risk cancer . I have had four implants but one rejected and one broke jaw being put in . I have hardly any teeth other than the implants and one attached to implants .

Having one pegged in to try to save another implant .

I have lupus fibromyalgia and sjorgrens all g with triple curvature of spine with a break when your that is grafted . Also have divaticulitis and obvious arthritis .

I hardly sleep in permanent pain but keep fighting its all we can do isn’t it 😌

[Dynamic63 in reply to merlin136]

Omg 😮- and I though false teeth were a crap solution - my heart goes out to u

[Curious20 in reply to Dynamic63]

I’m glad that you are considering low carb (as all carb metabolises to sugar except polyols ) needs to be avoided with your teeth. On keto you need to drink a lot of water which will help with some of the dryness as well.You really need to get on the vitamin d asap as vitamin d is what helps calcium absorption. Also get some calcium tablets to take with your vitamin d. It’s worth a try to make the difference to your teeth (don’t get the combined vit d with calcium as they tend to be the wrong doses). In my husband’s experince , it took about six months to get his sjogrens symptoms sorted. I’m sorry you have to go through so much and doctors are pretty hopeless when it comes to dietary advice or even in my case and my husband’s, getting an accurate diagnosis. I have learned over the years to take health professional’s advice with a pinch of salt and do as much research myself as I possibly can.

[Blogg]

Methotrexate in combination with hydroxychloroquine saved my joints and have kept me stable for 7 years. Hope you find something that works for you. I have the duo as well

[Dynamic63 in reply to Blogg]

Does this drug make u feel nauseated 🤢?

[Blogg in reply to Dynamic63]

A bit. I have it at night once a week

[jmp51]

Hi fellow Sjogren traveler

I am genetically disposed to this as well...

It takes a while before you get mentally past the diagnosis of this condition but with the right medication and attitude it is very managable. I have been on Plaquenil and have no side effects.

Hope you find the right treatment soon!