Sjogren’s Syndrome – Introduce yourself and meet others

Posted by cmtg @cmtg, Aug 20, 2016

I have been diagnosed with this and I’m in pain most days and would like to have discussions.

Interested in more discussions like this? Go to the Autoimmune Diseases group.

@cmtg

I have all the symptoms above you described except never had a lip biopsy, Dr said not needed, the diagnosis is pretty clear. It took seven years for diagnosis. I guess did’t make myself clear to you.

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I have major mouth issues. My doctor told me about 7 years ago that I had sjogrens and that it was “no big deal.” He said I just needed disease modifying drugs, and they never worked so he changed them frequently. He refused to treat my mouth and watched as my teeth wore away at the gums. I learned not long ago that my gums were eroding now too and I fear I will lose all my teeth. I can take almost nothing these days without getting every severe side effect and I am desperate to find something that will help. I let my old rheum go a year ago as I was sick of him ignoring me. My mouth hurt so bad and was full of sores and he told me “they will go away.” My smile was the only part of my body I ever really liked and now, I can’t even smile anymore. Has anyone else had problems with their teeth? It is going into my ears now too and I can not chew anything without hearing noises in them, it is maddening..

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@cmtg

I have all the symptoms above you described except never had a lip biopsy, Dr said not needed, the diagnosis is pretty clear. It took seven years for diagnosis. I guess did’t make myself clear to you.

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I am sorry to hear about your tooth involvement. I have my teeth checked and cleaned every 6 months. On their recommendation, I use Phillips fluoride toothpaste once a day. Also use Biotene gel. Have used an electric toothbrush for years. There are also several chews OTC that you can use as often as you need them. A pharmacist can point you to them. Sounds like you need a new doctor.

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@cmtg

I have all the symptoms above you described except never had a lip biopsy, Dr said not needed, the diagnosis is pretty clear. It took seven years for diagnosis. I guess did’t make myself clear to you.

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Thanks Marylou and yes, I finally fired him last year. I put way too much trust in him. I see a dental specialist at Mayo next month and I hope they can do something for me.

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Hi all with Sjogrens syndrome, I was diagnosed in 1988 when the gland areas all around my eyes and the large glands under my chin and under my tongue became so swollen and hard like golf balls . I had no saliva or tears . At that time I did not even show an increased A&A but my astute doctor prescribed Methotrexate 15 mg /week for what he called sjogrens. The Methotrexate completely resolved the problem for me and I took it for 12 years with no sidefffects but for tiredness on the day after my injection. He monitored my blood monthly. As a side benefit my asthma was helped also. PS. Eye plugs have been great for me. I have had them for at least 10 years. Zenk

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I have had Sjogrens for about 15 years. My kidney function is decreasing and now diagnosed with chronic kidney failure stage 3. Had a biopsy –directly due to the Sjogrens and now am on cellcept 1500 mg a day to keep my immune system from attacking my kidneys even more. Does anyone else have issues with this as well. Thanks

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Hello @jlh658,

Welcome to Connect. I’m so sorry to hear about your condition, but you’ve come to the right place, and I’m confident that this community will help you with some much needed support and answers.
You’ll notice that I moved your message to this discussion about Sjogrens, where you can meet @cmtg, @blindeyepug, @graveltruck, @kyjeanne, @chicagomichelle, @marylou705, @fleure, @jillnc, @zenk.

You may also wish to view this discussion about chronic kidney failure: http://mayocl.in/2kvZpbb, and our Mentors @predictable, @rosemarya will hopefully provide more insight as well.

Here is some detailed information about Sjogrens, from Mayo Clinic, and I would sincerely encourage you to read it: http://mayocl.in/1BcAE3F
@jlh658, besides medication, what other steps have you taken to make you more comfortable? Have you made significant changes to diet?

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@colleenyoung

Welcome to Connect @cmtg. You have landed in the right place. I’d like to introduce you to a few other members who also have Sjogren’s. Please meet @johnwburns @blindeyepug @meemer @kyjeanne @uncbball and @ccorrconro for a start. I’m confident others with join this discussion too. I also encourage you to browse the other discussions in the Autoimmune Diseases group https://connect.mayoclinic.org/group/autoimmune-diseases/

CMTG – why type of pain do you experience and what methods or treatment do you use to try to manage it?

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My Sjogrens seems to be getting worse. I use Restasis, Theramints, and drink gallons of water. We are discussing salivary gland plugs. Have a humidifier at night. I use fluoride toothpaste at night. Sometimes I have trouble swallowing. I’m taking Cimzia for Psoriatic arthritis.

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@jlh658, we are fortunate to get the recommendations above from @kanaazpereira. She’s directly on-point. in my view. I second her suggestions that you read entirely through the postings at http://mayocl.in/1BcAE3F (on Sjogren’s) and at http://mayocl.in/2kvZpbb on chronic kidney failure. These are important because of greater knowledge of about both diseases accumulated over the 15 years since your Sjogren’s diagnosis. I have some Sjogren’s symptoms, but doubt that I have that syndrome; other conditions probably are at work with me.

My most relevant problem is Stage 3 chronic kidney failure. My strongest recommendation here is not to obsesses about the word “failure.” I and many of my associates in this group are not severely compromised by our kidney problem — so long as we keep it in view and under constant supervision personally and by a medical team that includes a dedicated nephrologist. More on that in the discussion that @kanaazpereira put you onto where I sound off a lot more on my kidney problem. As you read these reports, I suspect you’ll gain more confidence in your ability to manage your situation in the years ahead.

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@jlh658

I have had Sjogrens for about 15 years. My kidney function is decreasing and now diagnosed with chronic kidney failure stage 3. Had a biopsy –directly due to the Sjogrens and now am on cellcept 1500 mg a day to keep my immune system from attacking my kidneys even more. Does anyone else have issues with this as well. Thanks

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Hi, @jlh658. Welcome to Connect. I do not have Sjogrens, nor do I have any experience with it. I do, however, take cellcept (mycophenolate mofetil). I take it with another immunosuppressant to keep my immune system from attacking my transplanted organs, liver and kidney. I have been taking it for almost 8 years. My labs are drawn routinely. And it is doing an exceptional job of protecting my transplanted organs. I have had no bothersome side effects from it. Your doctor should have advised you about directions for taking it, as well as any precautions that you need to be aware of. You may have a greater chance of getting infections, so wash your hands often and avoid being around people with infections, coughs, or flu.
Rosemary

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New to the group and curious about issues secondary to Sjogren’s Syndrome. I was diagnosed through blood work a few years ago in my mid 40’s, but painful joints, strange rashes, dizziness and chest pain sent me to the Rheumatologist. Sjogren’s was not on my radar, but all that came back as absolutely positive. Tried Plaquenil for 4 months, but developed hives and had to move to Imuran for the next 2 years. However, my symptoms have come back with a vengeance-dry eyes, dry mouth, really painful joints, stomach issues and crushing chest pains. In Jan., I started methotrexate weekly as the Imuran was not helping at the maximum dosage. I’ve not seen any improvement with anything except for steroids at a high dose and oxycodone.

Meanwhile, I’ve been going to my Primary Care doctor, Neurologist and Gastroenterologist. The Neuro did a nerve conduction test that came back as normal, but decided to also order skin/punch biopsies. All 5 test sites came back positive for severe nerve damage/peripheral neuropathy. This week, I went back to visit and was told that I also have autonomic neuropathy. We think it’s secondary to the Sjogren’s. I do have 13 brain lesions, but am negative for MS and so far, do not have Diabetes.

Is anyone else experiencing such issues?

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Hello, @melperez1223. I would like to welcome to Mayo Connect. I am sorry that you are experiencing these issues. I believe that you will receive some responses from others here on this Sjrogren’s Syndrome discussion. Thru questions and sharing of our personal experiences, we are able to both offer/receive answers and support.
While you are waiting for a reply, I want to provide a couple of links.

Mayo Clinic Sjogren’s syndrome – http://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/basics/definition/con-20020275
Sjogren’s Syndrome Foundation – https://www.sjogrens.org/

I wish for you to find a resolution.
Rosemary

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I’d like to add my welcome too, @melperez1223,

While we wait for @blindeyepug @meemer @kyjeanne @uncbball @ccorrconro @graveltruck @marylou705, and others to join in, I want to let you know that we have a great, ongoing discussion in the Brain & Nervous system group, “Anyone here dealing with peripheral neuropathy?” http://mayocl.in/2ofBrlS. I would sincerely encourage you to go through it, post your message there, if you wish, and feel free to tag members.

Another discussion that might interest you is “Autonomic Neuropathy – Looking to talk with others,” http://mayocl.in/2nvag8a, where you’ll meet @bobsconnect @kathyzendner and @mojoearle.

@melperez1223, besides medication, how else are you coping with your symptoms?

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