Anyone have Sjorgen's or dry mouth too?

[IAmTheGlue]

I know PBC and Sjorgen's tend to go hand in hand so this might help someone else. I was at the Mayo Clinic last week and it was suggested I may have Sjorgen's too. He also said PBC alone can cause dry mouth. I have a very dry mouth, dry eyes, etc. My teeth are brittle, they just started cracking in two, and breaking off at the root, etc. It's horrible. I've been to several dentists to get a treatment plan, which amounts to implants or an implant supported bottom denture. They sited dry mouth, high acid level and said I was fighting a losing battle. Kind of depressing but whatever...

Anyway, my Hep at the Mayo Clinic wrote me a script for Pilocarpine HCL and OMG.... I'm positively giddy.

You get used to things that are uncomfortable and I didn't realize how crappy I was feeling until it was taken away. My eyes are no longer gritty, like they have sand in them. My mouth is wet, like my teeth are slippery.. it's awesome. I lost my sense of smell years ago and it's back!

Guys... I have hope that I haven't had in a hot minute. I'm so happy just to feel normal.

I'm saying if you have Sjorgen's or dry mouth, if your tongue sticks to the roof of your mouth and you are living on dry mouth drops... Ask your doctor about it. 😀 It's life changing! 😍

[Kathy71172]

Yes! I just started salagen 3 weeks ago! Where has this been for the last 5 years! Best medication ever!!!!!

[IAmTheGlue in reply to Kathy71172]

I'm glad that it's working so well for you too! It's pretty great! I've felt pretty silly today for being this excited to feel just normal. Lol

[Kathy71172 in reply to IAmTheGlue]

I know. This medication and one my dr gave me for ibs... they have changed my life. Now, if we can get the itching, the nose and ear sores, and the melasma...that would be awesome...lol

[ENuk in reply to Kathy71172]

Did it help with dry eyes or just dry mouth?

I find the dry eyes the toughest part.

[Kathy71172 in reply to ENuk]

Unfortunately only mouth. I use systane gel drops about a dozen times a day and through the night.

[Esnofla in reply to Kathy71172]

Ask your doctor about Xiidra. Starts working immediately. My dry eye is non existent now.

[Candy12]

I don’t have sjogrens apparently, mine is said to be due to pbc. So hopefully it will still be a consideration, I’ve put this medication on my list of questions for my next appointment. My mouth, throat and nose is so bad that I’am sure its what wakes me up in early hours. So anything that gives relief has got to be a good thing. Thank you for posting.

[IAmTheGlue in reply to Candy12]

My Hep was not positive it was Sjorgen's but started my on it anyway, so I'm hoping yours would too. He did put in for a consultation with a rheumatologist and did a bunch of blood work as I was leaving so I'm hoping to find out something definite eventually.

I hope that you find some relief too.❤️

[Candy12 in reply to IAmTheGlue]

I was told sjogrens initially but had testing done by rheumatology everything came back okay. I definitely think it’s worth a try, to get some relief.

[ENuk]

Great news. We are so fortunate to have updates in science that is helping us.

I have sjorgrens, confirmed by blood test, and had punctual plugs put in my eyes to help with dryness only this week.

I have a follow up in a few weeks so will ask about the medication.

Thanks for sharing and hope it continues to work for you.

[Sona_akb in reply to ENuk]

I have also dry eyes restricting my life in every occasion. My ophthalmologist appointment is next week and she’ll decide about putting on punctal plags. Please let me know if it worked for you or not

[ENuk in reply to Sona_akb]

Hi, 1st consultant was pretty certain plugs would help but the 2nd consultant who actually put in the plugs thought they were not effective, mostly because they fall out easily.

I am not sure if I have really noticed a difference, initially it felt better and I an not using eye drops as much but I had very sore eyes a few days ago.

It is a simple procedure, not comfortable, but it was over really quickly. I think anything affecting the eyes isn't pleasant though!

I was told I was able to drive straight away although recommend some time out just to settle yourself.

[Sona_akb in reply to ENuk]

So you experienced a period of pain after the procedure?

It seems that I must postpone it because of my vacation.

Thank you for your help❤️❤️❤️

[ENuk in reply to Sona_akb]

I also postponed it due to a family event but it really was very quick and no side affects.

They put drops in your eyes and then plugs put in. Probadly takes less than a minute.

The letter said not to drive but I spoke with the consultant before and at start of procedure and they said no issue with driving.

That gives an indication of how straightforward it is.

I had planned the day off afterwards but could have gone to work if necessary.

Reschedule if you feel happier, I did.

I wouldn't say it is dramatically different so not life changing but worth trying.

It seems if you rub your under eyes the plugs can fall out. They are so tiny I am not sure you would notice.

[Sona_akb in reply to ENuk]

Thank you 🙏🏻 For taking your time for me

I’m going to see my ophthalmologist today and will discuss it together

[Diane62]

Thanks for this. I have both conditions as well.

[MysticShaman]

Very timely info. My Ltd scleroderma was accidentally diagnosed back in 2018 when I was sent to a rheumatologist who diagnosed me with fibromyalgia (a post sepsis gift). She had 2 other PBC patients and thought she should test me. I had put my dry eyes and mouth down to allergies and meds, but it’s progressively gotten worse. I see the rheumatologist next month and will definitely ask about the med. Thanks✨

[My-life in reply to MysticShaman]

My sister is in remission from scleroderma.

[Dyfry]

I mentioned to my GI that I have all the symptoms of sjorgrens. She wasn't concerned, said it doesn't matter...and said to see my primary Dr. I think she meant that it didn't matter, when it comes to the liver transplant list. She's not very personable...

[IAmTheGlue in reply to Dyfry]

☹️ I'm sorry your doctor was less than sympathetic. I hope that your primary care doctor is more sympathetic to it.

I treat doctors and dentists like I would any other business. If they are not kind and seem genuinely interested in my care, I go elsewhere. I know not everyone has those options but I am fortunate enough to live by a big city

It is a big deal. Not just comfort wise, but seriously, if someone would have realized this earlier it could have saved my teeth. Apparently if you have a dry mouth you are very susceptible to dental problems. Dentists acknowledged the dry mouth but nobody thought to research it further or offer any real help.

I hope that you find someone who will listen. ♥️

[Faybrey]

All fabulously interesting and positive. I have sicca and I’m seeing a rheumatologist next month about my Raynaulds so I shall make enquires! Thank you very much 😊

[My-life]

Great thank you.

[Sona_akb]

Hi

Today I am starting on Salagen for dry nose and loss of smell sense.

Can you please tell me if you take it with food or after food?

I’m so annoying by not smelling anything 😢

[IAmTheGlue]

I hope the Salagen helps! It was life changing for me. Seriously... it is awesome.

I take it with or without food. I take it as soon as I wake up, (6am, 11 and about 4) . I know when it wears off because my eyes and mouth dry up. I still use dry mouth drops and I use daily disposable contacts to kind of seal in moisture in my eyes.

I love it, though. It really, really helps! Good luck!