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.

@elmay

I was diagnosed with Sjogren’s by lip biopsy. I wake up during the night with my tongue stuck to the roof of my mouth and use a water bottle to take in some water. I can’t take either of the meds that increase saliva because they make me sweat so much I have to change my PJs. I use Restasis twice a day for dry eyes. That works for me. I take Plaquenil for a high CK level. My other issues are GERD, osteopenia, fibromyalgia, and some others I consider minor. I have a lot of sensitivities to medicines. Fortunately, I can tolerate Lyrica. Exercise and positive attitude are my best meds. Sometimes they just aren’t enough.

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@elmay I see that you aren’t a new member. Is the Sjögren’s new for you? I’m going to ask @rarelybees2889 and @zenk and @peach414144 to join the conversation and see what help they can offer. It sounds like having a very dry mouth at night is especially irritating for you. Have you tried any of the artificial salivas from the drug store? Maybe the other members have good suggestions.

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@becsbuddy

@elmay I see that you aren’t a new member. Is the Sjögren’s new for you? I’m going to ask @rarelybees2889 and @zenk and @peach414144 to join the conversation and see what help they can offer. It sounds like having a very dry mouth at night is especially irritating for you. Have you tried any of the artificial salivas from the drug store? Maybe the other members have good suggestions.

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I probably have had Sjogren's all my life but for the last fifteen years it has been very active. I have tried all of the different medications but of to no avail. At this stage in my life (82 years of age) to try other medications would interfere with many of the other medical problems I have. I thank you for thinking of me. It is kind of you to help myself and others and you are appreciated says Peach with a smile on her face ready to face the day.

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No, the Sjogren’s was diagnosed about 4 years ago. It seems to have progressed. I am due for my annual physical and bloodwork, but I doubt that will happen in light of the carona virus crisis. I do use Biotine products. Toothpaste, mouth gel, mouth spray, and mouth wash. All are made for dry mouth. They seem to work well.

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@elmay

I was diagnosed with Sjogren’s by lip biopsy. I wake up during the night with my tongue stuck to the roof of my mouth and use a water bottle to take in some water. I can’t take either of the meds that increase saliva because they make me sweat so much I have to change my PJs. I use Restasis twice a day for dry eyes. That works for me. I take Plaquenil for a high CK level. My other issues are GERD, osteopenia, fibromyalgia, and some others I consider minor. I have a lot of sensitivities to medicines. Fortunately, I can tolerate Lyrica. Exercise and positive attitude are my best meds. Sometimes they just aren’t enough.

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Could someone please tell me how polymyalgia is is diagnosed? Is there evidence in lab work, or is the diagnosis a less exact process? Thanks.

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@elmay

Could someone please tell me how polymyalgia is is diagnosed? Is there evidence in lab work, or is the diagnosis a less exact process? Thanks.

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Hello @elmay
I'm going to invite @johnbishop to address this question as to how polymyalgia is diagnosed.

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@elmay

Could someone please tell me how polymyalgia is is diagnosed? Is there evidence in lab work, or is the diagnosis a less exact process? Thanks.

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Hi @elmay – polymyalgia rheumatica is normally diagnosed by an exam and additional tests. Here's more information on Mayo Clinic's page: https://www.mayoclinic.org/diseases-conditions/polymyalgia-rheumatica/diagnosis-treatment/drc-20376545

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Hi dear cmtg@cmtg
I try to give my helping offer here but is not a medication that you should follow. Polymyalgia has many symptoms, but none of those symptoms is related to general pain, as you mentioned (I’m in pain most days), and as you stated you are 82 years of age which the first question come to mind that cardiac problem affect your life, which affects your daily activity. You mentioned physical test and blood test or work as you named it, Tred.M. test and output and input altogether help in diagnosis. Pain of the muscles and headache are most likely related to cardiac medical problems such as Polymyalgia. A question that may help you is asking your physician what tests and medicines can be done and what medications you used to take can be updated and replaced ,and ask about its adverse reactions . Medicines now available by different companies as well as different medical treatments, and can be paid by medicare. I hope you get well soon.

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@becsbuddy

@elmay I see that you aren’t a new member. Is the Sjögren’s new for you? I’m going to ask @rarelybees2889 and @zenk and @peach414144 to join the conversation and see what help they can offer. It sounds like having a very dry mouth at night is especially irritating for you. Have you tried any of the artificial salivas from the drug store? Maybe the other members have good suggestions.

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Hi
Just weighing in, sorry its late. Nice to meet you all. Diagnosed about seven years ago. Lots of other autoimmune issues!
How many of you are on Plaquenil? This situation with the shortage really angers me….I didn't realize this drug could cause heart problems! What is everyone doing for dry eyes and mouth? Its sad that many people who don't understand see SS as ONLY dry eyes and mouth…

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@elmay

No, the Sjogren’s was diagnosed about 4 years ago. It seems to have progressed. I am due for my annual physical and bloodwork, but I doubt that will happen in light of the carona virus crisis. I do use Biotine products. Toothpaste, mouth gel, mouth spray, and mouth wash. All are made for dry mouth. They seem to work well.

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Just a thought Elmay, but remember that sometimes SS issues do not show up in bloodwork…

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@johnbishop

Hi @elmay – polymyalgia rheumatica is normally diagnosed by an exam and additional tests. Here's more information on Mayo Clinic's page: https://www.mayoclinic.org/diseases-conditions/polymyalgia-rheumatica/diagnosis-treatment/drc-20376545

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I have read that some of the main symptoms are pain in the shoulders and neck along with headache in the temples. Another article mentioned wrist pain. All of these have been present for about 5 weeks. My biannual blood tests are due in mid-June. Should I be asking my doctor to do the lab tests sooner? The pain has been pretty severe when I am at rest. It hurts less when I am moving or exercising. I haven’t mentioned the idea of polymyalgia to my doctor. I don’t want to come off as a know it all. How should I approach this? Can my SS be causing my symptoms? Thanks for your help.

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Definitely mention it to your doctor! It's not that you will be coming off as a know it all but you will be presenting your case as someone who knows their body, knows their symptoms and you would be presenting a possible avenue for him/her to follow..
Always voice your opinion to your physician. They are there to listen!

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@elmay

I have read that some of the main symptoms are pain in the shoulders and neck along with headache in the temples. Another article mentioned wrist pain. All of these have been present for about 5 weeks. My biannual blood tests are due in mid-June. Should I be asking my doctor to do the lab tests sooner? The pain has been pretty severe when I am at rest. It hurts less when I am moving or exercising. I haven’t mentioned the idea of polymyalgia to my doctor. I don’t want to come off as a know it all. How should I approach this? Can my SS be causing my symptoms? Thanks for your help.

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@elmay, I agree with @davelt103. You should discuss the symptoms with your doctor. You know better than a doctor what your symptoms are and it helps them when you can accurately describe how you feel. It might even help if you can keep a daily log on the symptoms and pain levels so that helps you describe it to your doctor.

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@rarelybees2889

Hi
Just weighing in, sorry its late. Nice to meet you all. Diagnosed about seven years ago. Lots of other autoimmune issues!
How many of you are on Plaquenil? This situation with the shortage really angers me….I didn't realize this drug could cause heart problems! What is everyone doing for dry eyes and mouth? Its sad that many people who don't understand see SS as ONLY dry eyes and mouth…

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Our CVS is saving it’s supply for any of its regular Plaquenil users. I asked about it and they reassured me.

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@elmay

I have read that some of the main symptoms are pain in the shoulders and neck along with headache in the temples. Another article mentioned wrist pain. All of these have been present for about 5 weeks. My biannual blood tests are due in mid-June. Should I be asking my doctor to do the lab tests sooner? The pain has been pretty severe when I am at rest. It hurts less when I am moving or exercising. I haven’t mentioned the idea of polymyalgia to my doctor. I don’t want to come off as a know it all. How should I approach this? Can my SS be causing my symptoms? Thanks for your help.

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Hello @elmay,

While I don't have much experience with this particular disorder, I have had lots of experience in getting hard-to-diagnose symptoms handled. Bringing in a list of your symptoms and research you have done makes you a diligent patient, not necessarily a know it all.

If you present your information (symptoms/research) in a clear, logical manner, respecting the doctor's background and education, your presentation should go well. I have done it a number of times (even creating graphs of echocardiogram changes) and my doctor is always very respectful of the work I have done.

If your doctor is not respectful, then that would be an issue where you might want to seek a second opinion.

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@rarelybees2889

Just a thought Elmay, but remember that sometimes SS issues do not show up in bloodwork…

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Thanks. That’s a good point.

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