Cheek soreness

How was yours diagnosed from symptoms or blood work. Thanks for all your comments.

Hi Heather,

​At first it was from symptoms, then they tested my eyes, and they were very dry.  (some sort of paper test they put just inside the lower lids)  I also had, still have the Ranauds, I guess it comes along with it.  Then it was the lip biopsy.  Then it finally showed up in my blood work.  But I have had Auto Immune issues for years due to the RA.  And now all the issues with it going inside to my organs.  You will also need to make sure they keep an eye on your lungs, as that is also one of the places it hits when it does go inside.  SS can be a real bugger, but hopefully you will not get all the stuff I have, as not eveyone does!!  But they do have meds that can help us live with it, and the support groups!  Just make sure you write everything down, even if you think it may not be important, like I said, let the doctor decide what is, and is not important.  You would be surprised what actually is!!  I wish you all the best of luck!!!

Sometimes I feel I am imagining it and I am just a hypocondriac and then I t think this dry mouth is not in my imagination and my other pains my ribs and cheeks and fingers did you ever feel like that

Are you have dry eyes also?

Oh yes!  It sure does make one feel like that!!  I have thought that this can not possibly be part of SS, but surprise, it ends up being part of it.  When the Peripheral neuropathy? in my feet and lower legs hit, I thought the same thing, but oh no...it IS part of it all.  So frustrating!!!  I very often can not tell where I am putting my feet when I am walking, so I am always tripping, and am always off balance now.  BUT, like I said, you most likely will not end up like me, and some others, as not everyone gets this bad.  The sooner they can get it diagnosed, and get you on some sort of meds, you should be ok for a very long time!!  I'm 61 now.  My eyes are getting better, as my RA doctor put me on Imuran, and it seems to help with the dry eyes and mouth.  It is the best it has been in a long time!!!  I have tried the mouth wash, and tooth paste, and none of it has worked for me.  Your dentist will give you some names of things you can use for the dry mouth.  Some can be purchased over the counter...if you can find them, others you can order on line.  I chew gum all the time, but I am able to ease up on the gum now.  Thankfully!  I do have to use the natural tears a few times a day.  BUT JUST the saline, nothing else.  There are a lot of things on line you can look up.  There is a lot of info there on line, but it is best to talk to your RA doctor, and reading the support groups will help too.   

One more thing...I also had hair loss, but have come through that now with help from Biotin.  It is a Supplement.  And a great shampoo called Nioxin.  Thankfully my hair has returned, and is shiney and thick once again!!

 

Hi Deidra - I have same problems as you with my SS. I am more unlucky than you in one respect - Imuran/ Azathioprine landed me in hospital twice with pancreatitis last year and I have failed to tolerate three other DMARDs. Have you tried Mycophenolate Mofetil/ Cellcept yet? I'm hoping to get to try this before the year is out.

Hi Tumtum,

?I am sorry you have the sam problems!!  I don't wish this on anyone!!  No, not yet on the Mycophenolate Mofetil.  I was on Methotrexate for a year, and it made me so sick, and it really aided in the hair loss, not to mention the awful skin issues!!!  I just felt sick all the time, so they made me go to shots, and that was even worse.  I just told them I could not take it anymore.  So went off of that for 6 months to get it out of my system.  I was put on the Plaquinel (sp) at first, but it damaged my eyes in the first 3 months, which is too bad, because it really helped the symptoms.  But they took me off that right away!!!  I forgot to tell Heather she will have to have her eyes checked by an Opthamologist every 3 months at first to make sure what ever meds they put her on, there is no damage!!!  That damage can not go back to normal again, once the damage is done, there is nothing they can do.  I will have to read up on the med you mentioned.  I just get so tired of all this stuff going on!  I think we finally have my adrenal glands and kidney's under control with the meds, along with my blood pressure...yes, this darn SS can cause problems there too!  Boy, sometimes I feel like I've been through the washing machine and rung out!  LOL  It seems if it's not one thing, it's another!  I sure wish you all the Best!!!!  Keep me posted if you try that new med!  I am going to look it up!

 

It is hard isn't it. I had a very similar response to methotrexate to yours but managed two years on it and I believe it chased off my RA symptoms at least. Then there was Plaquenil/ Hydroxichloraquine which gave me analhylaxis after 18 good months. Same for Sulfasalazine after only 3 weeks. The nerve pain drugs have given me severe reactions too. So the only options possibly available to me now are Mycophenolate/ Cellcept or Rituximab perhaps or IViG. It seems my Sjogrens might have given me small vessel disease of the brain - just had an MRI to assess whether or not this has progressed. I'm under rheumatology, neurology and endocrinology now and they are working together on my case hopefully. This is all very new for me as I've been disparaged and misdiagnosed for six or more years until I got to a new hospital with excellent rheumatologists.

What happen if we not taking all that medications?

I haven't been able to take any for over a year apart from a six month spell on steroids - which only mask things. Slowly I've been getting more dry sgd more fatigued and my CRP has been rising and dizziness/ vertigo/ hoarseness etc all a bit worse. But I still think I would rather try to find alternatives if I possibly can. For example I'm on BP meds which I don't think are really helping and I think it would bench better if I could lose weight, help myself through exercise and be sure to keep using topical medicines such as Lacrilube, hyloforte drops and mouth sprays etc. I'm very drug averse now and doctors are very wary about medicating me after four hospital admissions last year.

Ps sorry for typos!

Oh Dear...the problem is...these meds can be worse, or cause more problems!  It really is hard to say the least!  Have you had your adrenals checked by chance?  My BP was all over the place...in extremes!!  They finally sent me to a Urologist, and he is the one that found mine were not working right, and neither were my kidneys.  I had a feeling something was wrong, as my kidney area was hurting, but no other sign of kidney infections.  And my BP meds were not working, they just could not get it under control.  Just a few tests, and he found out what it was right away.  I have been going to him since the beginning of the year, and was in acute kidney failure.  I saw him yesterday, and my bloodwork has been getting better each week.  I feel like a pin cushion, but it had to be done weekly to make sure the meds were working, and they were!  I now don't have to see him, or have blood work until Feb of next year, or see him!!!  I am so excited!  I really like him...but I am glad I don't have to see him!  LOL  My doctors are all working together as well.  RA doc, Urologist, Gastro doc, heart doc, neurologist, and my GP.  I am still thinking of going to the Endo doc, as they can see a lot of things going on in our bodies as well.  I sure hope they take good care of you now!!  I can't imagine being misdiagnosed all this time!!!  My Heaven's!!!  I do know it is very difficult to find, but 6 years is a very long time!  My Mom has Lupus, and it can take a very long time as well, and she has been healthy all of her life, until now.  It came on for her at age 79, she just turned 84 today.  She gets very sick, and does not know how we all handle this.  LOL  I try to tell her it is not easy, but we need support, friends and family that understand, good doctors, and for me, lots of prayers for strength!  I try not to sit and feel sorry for myself, and remember someone else always has it worse than I do!  Like you!!  You can't take a lot of the meds, and have to suffer even more!!   I hope your results from the MRI come back good news for you!!  NO progression!!!!  Love & Prayers for you!!!

No worries!!  We don't have a edit button...LOL  It happens to me too! 

Hi Katalin,

?It just depends on how bad your symptoms are.  If you are like Tumtum and I are, you will need something to help you.  If you have the dry eyes and mouth, there are things like natural tear drops for your eyes you can buy over the counter, and things like sugar free gum, tooth paste, some say that helps, it does not for me.  Mints, things like that to keep your mouth from being dry...and drink tons of water!  I have water with me at all times, even by my bed at night.  You also can ask your dentist to give you a list.  If you are hurting, then you need to see a Rheumatologist doctor, they are the ones that take care of people with Sjogren's.  I hope you don't have the bad symptoms!!!

Only the dry eyes and mouth so far ...

Maybe some joint pain ...

I hope is not get worst

Your kidney pain was a front and both side?

Or you feel it the back also?

Try to do gluten free diet yet?

One other thing...the dry mouth, you NEED to make sure you floss daily, and I mean at least twice a day!  People with SS and dry mouth tend to lose their teeth due to the bactiera, no saliva means no way to get it out of the mouth, and can cause tooth loss!  My dentist calls me his flossing queen!!  That was the very first thing he asked me when I told him I had SS, and thankfully, I have always been a good flosser, but I even floss more now, as I really don't want to lose any of my teeth!  I've made it to 61 with all of my teeth, and both my gums and teeth are in great shape!  I aim to keep them that way!  I see him twice a year for regular cleanings.  I also use a gum massager just to make sure they stay healthy too!  I know I might be a little over board, but I really don't want to lose any of my teeth!  LOL  My teeth, and my smile is the one good thing left!  And my hair!  LOL

It's kind of hard to say, it's been on both sides, but I would say more on the right side, but it has also hit my liver, so that is in the front right-ish.  It hit my intestines/stomach as well, so was just hurting all over/around.  I've been lucky so far, with the lungs.  I am hoping it stays away from there!  That's can be a common place.  BUT NOT everyone gets these things!!!  Remember that!!  The sore joints can be part of it...for some reason the wrist is also common.  But I also have RA, so my joints flare up very often.  I drop things a lot with my right hand/wrist.  I forget and will pick up a cup of coffee, and start to walk off with it, and my wrist gives way.  Makes me more upset than anything, because then I have to get down to clean it all up!!!  And I have a hard time getting back up!!!  LOL  Can be a tad bit frustrating!  But, it's just all part of life with SS, so you just have to laugh at yourself looking like a spider getting up off the floor, your dog licking your face, and looking at you like you are crazy. 

Thanks for your answer 😀

I have two dogs also !

How old are you and when this stuff started for you?

Oh interesting , whats a gum massager? all info gratefully recieved. My teath / gums are fine but I have 4 implants and several crowns. they have been better the last few years since having a better private dentist.