Possible Sjogren's and looking for advice

[Kadiddle]

I'm hoping I can find some answers and resources here.
I am 58, an RN, and consider myself to be fairly healthy. A bit overweight, but not obese. I was given a diagnosis of Undifferentiated Spondyloarthropathy years ago with a positive HLA--B27 and symptoms. Fortunately, other then some low back issues off and on, I have had little joint pain and swelling for over 20 years.
About 7 years ago, I was diagnosed with dry eyes. Chronic dryness, grittiness, occasional watering and goopy--ness (is that even a word?) I had a positive Schirmer test and just followed up with my optometrist. I eventually got 4 punctal plugs and two of them remain. Nothing serious beyond annoying. I eventually developed some symptoms of dry mouth, with a sticky taste in my mouth, needing water at my bedside, occasional sores in the mouth, and increase in cavities even though I am religious about brushing and flossing.
About 5 years ago, I had one episode where I woke up with a very swollen parotid gland. Oddly, the next day I woke up with a swelling above my left eyebrow. The one above my brow was a bit tender and itched. The parotid gland was a bit sore and I developed some shooting pains up in my cheek which was probably due to pressure on the facial nerve. I had a CT scan which showed swelling of some lymph nodes I believe, in the parotid gland itself. I was put on steroids and antibiotics and the swelling went away, except for a residual swollen node by my left ear. A biopsy was performed on the swelling about my brow because the doc thought it might be shingles. It wasn't, but I don't recall what or if they even determined what it was.
On occasion, I get a very tender area below the right side of my tongue. It gets red and very painful to touch.
In June of this year, I developed a very goopy and painful left eye with a bit of photophobia. We were on vacation and the small town practitioner looked at my eye and said "I am sending you to an opthamologist today. It was 4 pm. I had to drive an hour away and he told me I had a severe case of blepharitis and the toxins from the bacteria had eroded ulcers in my cornea. He put me on antibiotic drops as well as cortisone drops. I went home and made an appt. with what I thought was an opthamologist (turned out to be an optometrist) and he took me off the antibiotic drops because my ulcers had worsened and he felt it was due to a reaction from the antibiotics. I continued the steroid drops. 3 visits later when I realized I was seeing an optometrist, I made an appt. with my own optometrist whom I LOVE! He increased the steroid drops and here I am 3 months later. The infection moved to my other eye in spite of using prescription "eyelid hygiene" products. They did eventually get better, or so I thought. About 2 days before my follow-up appt. and having used all the steroid drops up, my right eye starts getting a bit weepy and my vision changes again. At the follow-up appt. he said the old ulcers are scarring and I have new ones in my right eye. Needless to say, I am now depressed and upset and fear I am going to lose my vision. I am back on steroids and another prescription "eyelid hygience product" that is VERY expensive.
Now...I go to my PCP to let her know what is going on AND......I have had continued and increased problems with constipation for two years. I have tried fiber, omega 3's, flaxseed, colace, Miralax, and I am still constipated and miserable. I have a chronic gut ache and never feel like I empty my bowels. I had a colonoscopy which  thankfully showed not even a polyp! But I am miserable. I feel like my gut is in 1st gear and going nowhere! I have been put on Amitiza which costs another fortune and I told my PCP I won't buy it again if my insurance won't cover it.
My PCP has run all the blood tests that are NEVER positive. But.....she is contemplating sending me to a Rheumatologist. I have hesitated to go because I fear I will be told nothing is wrong. This comes from being told 20 years ago when I had swollen fingers and knees and fatigue, that I had fibromyalgia. All the symptoms of Fibromyalgia were negative and it doesn't cause swollen joints. I was furious. Then, when my daughter developed swollen joints and a rash another Rheumy told me SHE had Fibromyalgia. (We saw a Peds Rheumy is Seattle who finally diagnosed her with Juvenile SPondyloarthropathy. )
My optometrist ordered what he says is a brand new test for Sjogren's. He is the one who initially said he believed that is what I have.
My question is this: What do you think of all this, and....should I go see a Rheumatologist? If I do, are there specific treatments that will really help with the issues at hand, especially my eyes? And....do you think my gut symptoms are related?
I am filled with questions but this is so long already, I'll wait for some responses to ask more.

[Navigator]

Hi

For the dry eyes I have found Restasis to be very helpful.  An ophthalmologist can prescribe.

For the dry mouth.  Evoxac is helpful.  I also had crumbling teeth.. Other than basically brushing after every meal (which didn?t work for me) there will probably be crowns in your future.

Triamcinolone  0.1% dental paste has worked for me with mouth sores. I recommend using at night before going to bed. It is gritty.

These may help you feel better.   I would go to a rheumy to see if a diagnosis is possible. Many here are zero negative but have SJS.

[Joe S.]

Welcome to the forum.

The Rheumy is the one that can officially provide you with a sjogren's DX. It often takes 7 years to get one as it is a DX of elimination. Your Dentist may recognize your dry mouth issues as Sjogrens like mine did. Several Rheumy's gave me tests and no reports until I stopped on and said, "Dry eyes, nose, mouth, skin and @$$, What do you think it is?"

Some of us have put what we are taking in our signature. I am using supplements since most of the typical meds have side effects for me. Before you try anything please check for counter indications, drug interactions, and side effects as most doctors and pharmacists no longer provide that service.

I use a number of alternative therapies like meditation, reiki, toneations and reflexology. On occasion I will add acupressure. I do not have a favorite Tea therapy but I do use carrot Juice. Some people feel the Paleo diet helps. Some find help by being Gluten free. I sip, swish, and swallow my way through about 3+ liters of filtered water per day and another liter per night. I use a mumps scarf to keep my glands warm at night and remind me to keep my mouth shut while I sleep.

Good luck with your journey to a diagnosis and management of your symptoms. We try to keep shorter paragraphs as the white space is easier to read for most of use.

[Kadiddle]

Hi

For the dry eyes I have found Restasis to be very helpful.  An ophthalmologist can prescribe.

For the dry mouth.  Evoxac is helpful.  I also had crumbling teeth.. Other than basically brushing after every meal (which didn?t work for me) there will probably be crowns in your future.

Triamcinolone  0.1% dental paste has worked for me with mouth sores. I recommend using at night before going to bed. It is gritty.

These may help you feel better.   I would go to a rheumy to see if a diagnosis is possible. Many here are zero negative but have SJS.

Thank you for your response. My PCP has sent the referral to a Rheumatologist. I anticipate a call soon.
As far as the teeth, I've already had one crumble away and now have an implant. Even the crowned teeth I have are getting cavities underneath the crowns. Ugh.
Does the Triam.... toothpaste require an rx?
For the eyes...I have recently started Xiidra. I had tried Restasis in the past and it really irritated my eyes. Maybe I didn't try it long enough. The Xiidra was free this time with a coupon but I'm afraid it will be too costly to continue if I can't get the authorization from my pharmacy. I may have to try Restasis again.
I will talk to my PCP about the Evoxac as well.
Thank you again for your advice and wisdom. I look forward to finding some answers here in this forum.

[Kadiddle]

Some of us have put what we are taking in our signature. I am using supplements since most of the typical meds have side effects for me. Before you try anything please check for counter indications, drug interactions, and side effects as most doctors and pharmacists no longer provide that service.

I use a number of alternative therapies like meditation, reiki, toneations and reflexology. On occasion I will add acupressure. I do not have a favorite Tea therapy but I do use carrot Juice. Some people feel the Paleo diet helps. Some find help by being Gluten free. I sip, swish, and swallow my way through about 3+ liters of filtered water per day and another liter per night. I use a mumps scarf to keep my glands warm at night and remind me to keep my mouth shut while I sleep.

Good luck with your journey to a diagnosis and management of your symptoms. We try to keep shorter paragraphs as the white space is easier to read for most of use.

Thank you for the advice regarding alternative treatments. I HATE taking medications because there are so many side effects. Right now, I am willing to do the eye treatments because they are so bad. However, I have quit taking anything that MAY have anything to do with the dry eyes, and I am mainly on vitamins and supplements. I'll take your advice and put my meds and dx's as my quote.

[Joe S.]

One thing I forgot to tell you. Always bring an advocate with you to every doctor appointment. I bring my wife. She often hears things that I miss. If the doctor has an ego problem she will confirm it to me. She will also verify my symptoms.

[SjoDry]

Welcome K,

Sounds like you are on the right track and it also sounds like you may indeed have a SS Dx.  One of the leading Sjogren's docs in the country (from Hopkins) reported last year that when they (meaning docs I guess) do skin biopsies for people who have previously been diagnosed with Fibro, they actually have Sjogren's. You should know that various estimates, some say 15-30% of folks will be seronegative, but still have SS. And a lip biopsy may or may not be conclusive. The bottom line is treat the symptoms no matter what the bloodwork says. 

I know you mentioned having an issue with the Restasis...I actually keep mine in the refrigerator..which feels wonderful on my eyes.

Don't know if you have a Rheumy lined up who is well-versed about SS. You might want to check the Sjogren's Syndrome Foundation list to see if there is a SS Support Group in your area. Often the facilitator or members of the group will have a good idea of who the best Rheumies are.

Best of luck to you in nailing down the Dx & getting some effective treatment.
And welcome to the group again.

Take Care.
SjoDry

[Kadiddle]

One thing I forgot to tell you. Always bring an advocate with you to every doctor appointment. I bring my wife. She often hears things that I miss. If the doctor has an ego problem she will confirm it to me. She will also verify my symptoms.

I will definitely have my husband by my side. 
Kelli

[Kadiddle]

Welcome K,

Don't know if you have a Rheumy lined up who is well-versed about SS. You might want to check the Sjogren's Syndrome Foundation list to see if there is a SS Support Group in your area. Often the facilitator or members of the group will have a good idea of who the best Rheumies are.

Best of luck to you in nailing down the Dx & getting some effective treatment.
And welcome to the group again.

Take Care.
SjoDry

Great Idea!!! I will check for a support group in my area. Thank you!

Kelli

[Jasper]

It does sound like you very well may have Sjogren's Disease. You certainly have the symptoms of Sjogren's. many or most of your symptoms can be associated with Sjogren's Disease.

Even if your blood work is negative, you can still have Sjogren's. Only 50-60% of people with Sjogren's have positive blood work for Sjogren's.

A lip biopsy (salivary gland biopsy) is the gold standard for diagnosing Sjogren's. Your new Rheumatologist will probably order one.

I don't know where you live, but I would suggest seeing a Rheumatologist who is affiliated with a large university or teaching medical center. They are usually more informed about diagnosis, complications, and treatment options. If possible, try to get a Rheumatologist who specializes in Sjogren's and/or Lupus.

I would also suggest seeing an opthamologist at the same facility (a university or teaching medical center) who is very knowledgeable about Sjogren's Disease. Your eyesight can be saved if they get the ulcerations under control before they do more damage.

Your gastric problems may be related to Sjogren's also. I would suggest seeing a Gastroenterologist who is familiar with the GI complications of Sjogren's.

Also, if your dentist is not familiar with Sjogren's, I would suggest finding one who is. Sjogren's can significantly affect the teeth, gums, and mouth. A dentist who is familiar with Sjogren's may be able to offer suggestions and treatment that can help your mouth and teeth.

Even if you have to drive a ways, it is worth it to see good specialists who will diagnose you and treat you appropriately.

Best of luck going forward.

[Kadiddle]

Thank you for your response Jasper. I so don't want to have Sjogren's, but I am almost certain I do. I live north of Spokane, WA. It's a small "big city." I am guessing my best options would be Seattle. I hesitate because of the distance, but I also don't want to get the best advice and care I can. Seattle is about a 7 hour drive from us. I will certainly look into this.
Because I'm an RN, I fear the medications and their side effects. But I'll do just about anything to get my eyes healed. I am beyond frustrated and sick of my eyes being in pain, blurry, and feeling like I have something stuck in them all the time.

[Jasper]

There is someone on this forum who sees a very good Rheumatologist in Seattle.

You might try starting a new thread with the title, "Anyone have a good Rheumatologist in Seattle?"  or something like that. Maybe people who live in Seattle will post or send you a message about who their good Rheumatologists are.

I am also an RN. I thoroughly check side effects before I take any medications. You can see in my signature which meds I do take. The only prescribed meds I take for Sjogren's related problems are Restasis, Plaquenil, and Rituximab infusions. The Restasis has helped my eyes immensely. As long as I use Restasis twice a day my eyes are fine and my Opthamologist just told me last week that my eyes are the best he has ever seen them (since 2009). I think Plaquenil is helping because I gradually felt better after starting to take it. Rituximab infusions have helped me the most and I feel globally improved since starting Rituximab last February. It has helped the fatigue the most, but it has also improved the neuropathy, joint pain, saliva, cognitive function, bladder problems.

With the side effects, I weigh the pros and cons and whether the drugs are going to cause more problems than they solve or help. Also, how much do I need them. I need the Restasis. My eyes were very painful and gritty and getting some corneal scratches. But my mouth is not as dry as many people have. I opted out of drugs for Peripheral Neuropathy due to side effects and I could tolerate the burning and electric shocks and vibrating. The fatigue was the worst. I could not function. The Rituxan fixed that along with many other problems. I don't take any prescriptions for pain. Of the medications I take, Rituximab potentially has the most serious side effects, although they are relatively uncommon. I have had no problems with Rituximab. To me, it is worth the low risk of the side effects. I have a life now, and I did not have a life before Rituxan.

I also take several supplements which I do think help. I researched them very well.

[Kadiddle]

I am also an RN. I thoroughly check side effects before I take any medications. You can see in my signature which meds I do take. The only prescribed meds I take for Sjogren's related problems are Restasis, Plaquenil, and Rituximab infusions. The Restasis has helped my eyes immensely. As long as I use Restasis twice a day my eyes are fine and my Opthamologist just told me last week that my eyes are the best he has ever seen them (since 2009). I think Plaquenil is helping because I gradually felt better after starting to take it. Rituximab infusions have helped me the most and I feel globally improved since starting Rituximab last February. It has helped the fatigue the most, but it has also improved the neuropathy, joint pain, saliva, cognitive function, bladder problems.

With the side effects, I weigh the pros and cons and whether the drugs are going to cause more problems than they solve or help. Also, how much do I need them. I need the Restasis. My eyes were very painful and gritty and getting some corneal scratches. But my mouth is not as dry as many people have. I opted out of drugs for Peripheral Neuropathy due to side effects and I could tolerate the burning and electric shocks and vibrating. The fatigue was the worst. I could not function. The Rituxan fixed that along with many other problems. I don't take any prescriptions for pain. Of the medications I take, Rituximab potentially has the most serious side effects, although they are relatively uncommon. I have had no problems with Rituximab. To me, it is worth the low risk of the side effects. I have a life now, and I did not have a life before Rituxan.

Thank you so much for your words of wisdom. I will take your advice regarding the Seatttle folks.
I'm glad to hear about the medications you take. I trust that you have done your homework. I am so anxious to see the Rheumy, but I am still waiting for the referral to go through.
As far as the fatigue, there are times I think I feel fine, yet, on my days off, I just want to lay in bed. I'm not depressed, but I am TIRED! I seem to run like crazy the days I work, and on the days I don't, I just want to sleep. I will get up and go, go, go, with projects and things to do around the house, and then I'll crash. I just attributed it to getting old. Maybe it's more then that.
As far as Neuropathy, I do have some but attributed it to maybe some pinched nerves in my back. Both of my feet have numbness to the inside and great toe area. And my pinky and ring fingers will go numb on occasion, and tingle. But it seems I can shake it off. Again, I've just attributed it to getting old.
I take Meloxicam for my joint pain, but again, attributed that to old age. Who knows. It will be interesting to find out.

[Jasper]

Don't let any doctor tell you your symptoms are from old age. That's just a way to brush off your symptoms so he/she does not have to figure out what is wrong with you. Either that, or he/she is very ignorant.

That happened to me too. When I bropught up my symptoms, I was told I was getting old and weighed too much and if I lost weight I would feel better. That attitude delayed my diagnoses of two serious diseases by 11 years (Hepatitis C) and 13 years (Sjogren's). I did go to 3 other doctors but got nowhere. I finally insisted on some testing and Hepatitis C was diagnosed. Then, after treatment for Hep C,  I finally got myself to a Rheumatologist and Sjogren's was diagnosed almost immediately.

Women hear that nonsense about old age all of the time. Before they got older, it was pre-menstrual, hormonal, peri-menopauseal, menopausal, post-menopausal. Or its depression, chronic fatigue symdrome or fibromyalgia. If the doctors spent half as much time listening to us and investigating our symptoms as they do trying to convince us that we are crazy or old, we might get diagnosed faster.

Keep in mind Hillary Clinton is 68, Bill Clinton is 70, Jimmy Carter is in his 90s, Tina Turner is 76, Cher is 70, Joan Baez is 75, Colon Powell is 79, Ruth Bader Ginsberg is 83 ..... the list could go on and on. If we look around us, we see many people our age and older that are doing just fine. It is not age. It is a disease process that is affecting us.

[SjoDry]

Amen Jasper! 

SjoDry