Need Sjogren's advice

[Piscesdreamer]

Hello everyone,

UPDATE! I was able to get an appointment with a rhuemetologist at the Mayo Clinic in Jacksonville!!!

Thank you everyone for sharing your information and experiences with me. Just knowing we are not alone helps so much ♡♡♡♡

I live in the US and I am currently away from my home and taking care of my 80 year old Mom who injured her back. I have no primary doctor or rhuemetologist nearby. Appointments are impossible to get right now.

I have primary APS. I recently started getting a very dry mouth, throat, and sinuses. So much so that it creates a sensation of a lump in my throat making it seem difficult to swallow. I had a video visit with my rhuemetologist, who called in blood work and I was tested for Sjogrens antibodies on March 5th. The test came back negative. I was seen twice here at the ER. All of the regular blood work is normal. They did xrays of my lungs and abdomen which were clear. The ER doc suggested I may be sero negative for Sjogrens or too early on in the disease process to thr antibodies to be detectable.

I have lost close to 20 pounds in a very short period of time. I am living on protein powder smoothies, glucerna, boost, runny oatmeal,, rice, yogurt and water. When I try to eat something solid my saliva glands do not produce saliva. This morning I had to eat a part of an English muffin by adding water to it in my mouth. The lack of saliva is intermittent. I followed the ER doctors suggestion and picked up xylitol gum, toothpaste, and mouth rinse, as well as sour candy to keep my saliva flowing.

Can anyone share their experiences with me? Also what liquid high nutrition foods or shakes can I try? I need to stop losing weight. I need to get strong so I can care for my 80 year old mother.

Thank you in advance ♡

Irene

[Spanielmadlady]

Sorry to hear about your mum.im in the uk so not sure I can be much help.i have sjorgens. My dr prescribes salvia stimulant pastels called salivix which I find helpful.i also use tonnes of lip balm to stop the sores and cracks on my lips.for my eyes I use hylo eye drops available on amazon.Sorry I cant help on the diet front...I'm the opposite and carry steroid weight.

Best wishes to you both...my mum is 89 xxx

[honeybug in reply to Spanielmadlady]

♥️

[Spanielmadlady in reply to honeybug]

👋🤗😘 xxxx

[honeybug in reply to Spanielmadlady]

😊🤗♥️🥰🙏🌿🌸🦋

[honeybug]

Hi Irene 😊🌿🌸🦋

I’m in Michigan. Where are you located??

Abundant blessings for being your mom’s caregiver. I pray that both your needs will be met.

I do have Sjogrens. I suspected age 50 I had it as I couldn’t produce tears 😭 just severe pain in my tear ducts whenever crying took place. Saw my ENT confirmed Sjogrens by lip biopsy in 2006.

There are products sold here called BIOTENE. They make lozenges gum mouthwash toothpaste a day spray a bedtime gel.

Since the pandemic the stores limit what they offer. However all these products work.

For your eyes I use moistening drops in vials called Refresh.

I find the vials better for myself as once one is opened I can use it at will storing it in a Solo cup 2 oz. size until used up. It lasts 3 days because there’s no preservatives.

You can also get small bottles of eye drops that when I last checked only lasted 1 month. I find the 100 count Refresh vials most economical.

If you can get a doctor or urgent care clinic visit request Evoxac capsules taken twice daily. It makes our moisture producing cells active again I get absolutely desert parched without them

My ENT also gave me a moisturizing gel called Bactroban. Just use a small amount in each nostril according to the severity of your need. My primary doctor doesn’t want me to use it. He’s not in my ravaged body so I do without until unbearable. But Winter forced air heating just dried my mucosal membranes out too much to not use it.

For my lungs which are severely affected too I use an over the counter expectorant cough syrup. It breaks up the thick clinging mucus and allows me to cough it up.

It also pays to use a cool mist humidifier all Winter long.

I hope all of this is helpful.

If you have any questions feel free to contact me.

Best wishes for relief soon.

I send you both my love and prayers.

EvaJo aka EJ

😊🤗♥️🥰🙏🕊🌿🌸🦋

PS was recently told that the BIOTENE products will block your thyroid meds if you have a thyroid condition. If so best to check with Pharmacist for another OTC aid.

[milkwoman in reply to honeybug]

Curious - why does your primary doc not want you to use the Bactroban gel?

[honeybug in reply to milkwoman]

He never explained why. Since my ENT prescribed it for me I’m not going to stop it totally. He told me that I’d need it lifelong.

Without it my nose dries up cracks bleeds then the septum that divides the passages sloughs off. At one point it thinned so much it nearly caused a pea size hole. The tissue was almost transparent.

I’m not stopping it but use it when I must then do.

I love my primary and trust him fully. He really cares about me. But my ENT knows his specialties best so I follow his orders regarding all the issues he sees me for.

I think in hindsight that because bactroban has antibiotics in it he fears I’ll build resistance to them when needed in the future and I’m allergic to so many already.

Thank you for asking.

EJ 😊🤗🙏♥️🥰🕊🌿🌸🦋

[milkwoman in reply to honeybug]

Oh my, that sounds horrible! I also have Sjogrens (in addition to lupus) and currently, my eyes are the worst of the lot.

I totally get where you are coming from with doctors. I have great relationships with mine BUT that doesn’t mean we do not disagree from time to time on what’s best for me. I know they mean well!

[honeybug in reply to milkwoman]

Oh so sorry about your eyes hun. Mine are bothersome too. Losing my vision now also.

I have a strong family history of lupus on dad’s side. 8 of 13 Aunts and their mother all died from lupus/lupus related issues.

Sorry if this has upset you not meant to sweetie.

I understand how difficult it is when you are going through so many health issues at once. It’s very challenging isn’t it.

Your so right in that we don’t have to agree with everything our doctors says because it’s our lives and sometimes we know what’s best and are wise to listen to our gut intuitions.

I hope you’re doing okish.

So nice to chat with you my new friend.

Sending you love and prayers.

EvaJo aka EJ

😊🤗♥️🥰🙏🕊🌿🌸🦋

[milkwoman in reply to honeybug]

Awww, you are very sweet! Yes I’m doing okay. My lupus (knock on wood) is very much under control and while eyes are bothersome at times, I know it could be much worse. I still continue to seek out and try new treatments hoping to find ones that relieve my symptoms and/or improve things for me. I’m one of the lucky ones for sure!

Take care and stay safe!

[honeybug in reply to milkwoman]

Oh I’m so happy for you hun. You are wise to try to make and keep your quality of life. I do the same.

You take care and be safe too. I finally got my family and hubby their covid jabs. Brother just got his first one last Thursday.

I hope you’ve been able to take one yourself. I understand with autoimmune conditions it isn’t always possible. I’m blessed in that so far as I always get whatever jabs are offered with the mindset I’d rather die from the jab or latex reactions than any of the diseases the jabs are for.

You can chat with me anytime hun. I’ve enjoyed it.

Much love and prayers.

EJ 🤗♥️🥰🙏🕊

[Piscesdreamer in reply to honeybug]

Thank you for sharing this information with me, it is going to help me prepare for the appointment I was able to get at the Mayo Clinic here in Florida!!!♡♡♡♡◇♡

[honeybug in reply to Piscesdreamer]

You’re most welcome sweetie.

I pray that your mom makes a full recovery and that you will recover from this new problem regain your strength and weight soon.

EJ 😊🤗♥️🥰🙏🕊🌿🌸🦋

[honeybug in reply to Piscesdreamer]

My prayers were answered. I’m so thrilled to know you’ve gotten an appointment at the Mayo Clinic. You know their reputation for quality care.

I trust them fully to give you the answers you seek and the appropriate treatment.

I’m so glad I could help.

[Tempname]

Sorry to hear this. I have Sjogrens too, so I feel your pain. I found this lecture by Dr Elizabeth Price very useful bssa.uk.net/live/news/news7... . Regarding your swallow you should get it checked out with a gastroscopy, and if they find your oesophagus has tightened they can stretch it. The sudden weight loss must be worrying, have you thought about getting a prescription from you GP for Ensure/ fortisip etc, or a referral to a Dietician? Mind yourself xxx

[Piscesdreamer in reply to Tempname]

I was able to get an appointment with my primary doctor this Thursday, I will aske her!!Thank you ♡

[Olderkitten]

Hi Irene I've been suffering from the same thing as you, my rheumatologist did blood work twice and it came back negative so she sent me to an ENT who said that labs aren't always accurate and when I go back to see him if it's still a problem he would do a biopsy of saliva gland and that it's more accurate. I've been dealing with this misery for at least 2 months this time and have used every product for dry mouth looking for relief so I'm looking forward to the biopsy even though I know it hurts. Good luck, I hope you feel better.

[Piscesdreamer in reply to Olderkitten]

The doctor on the ER told me that Xylitol which is a sugar alcohol stimulates saliva production. So I purchased ACT dry mouth moisturizing gum, XyliMelts dry mouth stick on melts, Biotine dry mouth oral rinse, and also said that I could dissolve a teaspoon of xylitol into my drinking water.I also am using sterile saline nose spray and Neilmed Nasogel.

Last thing, I picked up MyPurMist with Distilled water, it is a nebulizer.

All of these items combined have given me great relief as I await my upcoming appointment at the Mayo Clinic April 7th.

Super important to get your saliva glands pumping again, as the risk of rapid tooth decay is high even during a flare.

Once I started feeling some control over my symptoms, my stress levels came down, which can help break the cycle.

There is a link in the comments above to a video from Tempname that helped me a lot too.

I hope you can find some relief as well, this is very frightening.

♡ Irene

[Olderkitten]

Hi there, I'm waiting for results from salivary biopsy for sjogrens and I also am using all the things your are to keep my mouth moist, Dr said I would get results by phone and then decided I need to be seen instead so I'll find out Tuesday. Did you also have a problem with your lips? I've had sore rash like areas on upper and lower lips and it won't go away no matter what I use and I've tried everything I could think of including otc antibiotic ointment, the doctor finally called in steroid but only 3 days worth...it started to work but a couple of days later it was back and I'm very frustrated. Hoping you feel better soon.

[Piscesdreamer in reply to Olderkitten]

I have not had any issues with my lips, but I did get an ulcer on the septum in my right nostril. I just read a news piece on the covid vaccines triggering shingles flares in some people. I wonder if the 2nd vaccine dose re-activated shingles which attacked my vagus nerve. Part of me still believe this was a sjogren's flare even though my blood work says otherwise. I hope your appointment goes well this Tuesday. Please let me know how it goes. ♡♡♡♡♡

[Olderkitten in reply to Piscesdreamer]

Thanks, I will definitely let you know how it goes. I also had labs twice and both came back negative.

[Roarah]

I used nasal salt saline and systane eye drops daily for ears and chewed gum frequently for dry mouth but ironically after being put on a statin after a stroke my dry issues resolved. You mentioned APS and many studies support statin use in even low cholesterol patients for disease modification and there are studies on statins being very helpful for Sjogren patient’s symptoms too. Might be worth asking at your next appointment if you are not already on one.

[Piscesdreamer in reply to Roarah]

Will do, thank you!!

[Olderkitten]

Hi again, just wanted to let you know about my biopsy results. I don't have sjogrens but I do have fibrous of the salivary gland which happens with age....of course, so that's good news for me. The Doctor said it's almost the same as sjogrens as far as treatment goes so I'll have to wait until my appointment with rheumatologist to see if there's anything else to help with dry mouth.

[Piscesdreamer in reply to Olderkitten]

Thank for you the update, you may find helpful tips on increasing saliva production in the Sjogren's groups here too!♡irene