Menopause mimics Sjogren's Syndrome

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cs34
cs34 Member Posts: 253

I am not sure where to put this but I felt compelled to share. I was just diagnosed with Sjogren's Syndrome (same thing the Tennis player Venus Williams has) and I'm learning the symptoms mimic menopause, joint pain, arthritis, muslce ache, depression, anxiety, etc...

I just wanted to throw this out there incase anyone feels really bad and it's worse than a "normal" not feel good.  

I know there are aches, pain, tired, etc post chemo and menopause but maybe for those of you who know it's a little more than that, ask the doctor to do an ANA test (I believe that's the test) the next time they draw blood. 

Sjogren's Syndrome biggest symptoms are dry mouth and dry eyes.

I'm not trying to scare anyone. I'm just trying to help. The symptoms all mimic each other so it goes undetected for a long time. Hope it's ok that I wrote this.  

Comments

  • jancie
    jancie Member Posts: 2,631
    edited October 2011

    Don't apologize!!!  This is great information to have and to share with others.

    So what are the treatments for SS? 

  • cs34
    cs34 Member Posts: 253
    edited October 2011

    Smile Thank you Jancie.  

    I have to see an RA doctor so I don't know anything yet. First appointment is December 5th. 

    The little I've read so far says that Sjogren's goes undetected and misdiagnosed for years because the symptoms mimic soooooo many other symptoms. Reading about Venus William's story, she was misdiagnosed with some kind of asthma disorder before they knew it was Sjogren's. If I read correctly, she canceled her tournament because she couldn't lift her arm she was so tired.

    I wish I could call her and ask her how she's feeling now and if there's hope to not feel so crappy all of the time. LOL 

    I just know that the ONE thing I so desperately wanted after all of my operations and treatments was to just feel good again and when I started working out and realized it caused me a lot of pain. Yes, now I know what it is but does this mean I'll never be normal again????? I'm really so sad about it but that's a whole other thread. Wink

    The only reason I found the Sjogren's was because my hands were killing me with joint pain and my finger started to look different. I asked my GP during my physical exam two weeks ago to test for arthritis. And I also spoke to my Oncologist last month about the leg pains, etc and we just thought it was neuropathy (spelling) from the chemo. 

    I hope that a lot of women will jump in on this thread and maybe it could help someone. All it is is a blood test that most of us get all of the time for follow up visits. Just ask for an ANA/arthritis test and go from there... 

    Jancie, do you have any symptoms? 

  • AnnNYC
    AnnNYC Member Posts: 4,484
    edited October 2011

    Jancie -- mainstay supportive "treatments" for Sjogren's address the "sicca" (dryness) symptoms:

    • eyedrops/artificial tears, like Restasis
    • saliva stimulants, like Salagen or Exovac (or things like lozenges, gum, lemon drops, Biotene mouthwash)
    • vaginal lubricants
    • saline nasal spray

    For joint pains, Plaquenil (hydroxychloroquine) is the first-line drug.  If more serious flares occur, then maybe immune suppression with corticosteroids (prednisone), or azathiaprine (Imuran), or cyclophosphamide (Cytoxan) -- these are usually limited-term treatments.

    About the ANA test (antinuclear antibodies) -- a positive test does NOT mean a person definitely has lupus or Sjogren's.  Five to 10% (some studies say up to 13%) of otherwise healthy people have ANA antibodies.  And -- very rarely (about 2% of people with these conditions) people can have lupus or Sjogren's symptoms that need treatment, but have a negative ANA test.

    So, a diagnosis of Sjogren's or lupus is made on the basis of having a certain number of symptoms and/or lab tests (see links):
    Sjogren's syndrome diagnostic criteria
    Lupus (SLE) diagnostic criteria


    [Don't mind me -- can you tell I have worked as a research assistant to rheumatologists for 25 years? Wink]

  • AnnNYC
    AnnNYC Member Posts: 4,484
    edited October 2011

    cs34, wishing you the very best with your upcoming appointment.  (((((((hugs)))))))

  • LindaKR
    LindaKR Member Posts: 1,577
    edited October 2011

    Thanks - since I'm having pretty major pain and fatigue symptoms, SE's from the AI's and other treatments, my PCP did all the tests, including teh ANA, to rule out other causes for the issues.  It's great having a doc that thinks of those things!!! 

  • cs34
    cs34 Member Posts: 253
    edited October 2011

    WOW! Thank you SO much AnnNYC. That's why I kind of feel weird putting something out there that I don't know 100% of what I'm talking about but you definately cleared that up. Smile

    Can I pick your brain without EVER holding you to anything? What do you think about the Plaquenil? Is it a steroid that will possibly add to my over 50lbs that I am? Frown  

    I don't have issues (now) with eyes and dry mouth but if I could work on anything, it would be to help my hands. They wake me up with the pain sometimes.

    I'm going to try and work out slowly, one step at a time, and stop feeling like a has-been and focus on what I can do, not what I can't...  

  • cs34
    cs34 Member Posts: 253
    edited October 2011

    lindaKR, very nice! I would definitely keep that PCP. Smile I hope you feel better soon.

  • cs34
    cs34 Member Posts: 253
    edited October 2011

    annNYC...I work in Manhattan (mid-town) and just found a RA 10 blocks away and for next WEEK, not December 5th!  SmileSmile

    SEE??????? Chemo, menopause & Sjogren's has made me a moron... I never thought to check Manhattan for a doctor. DUH!  

  • elimar86861
    elimar86861 Member Posts: 7,416
    edited October 2011

    Just going to point out that there are many medications (even the OTC allergy meds) that give the dry mouth/dry eye symptom, in addition to menopause causing it.

    My own hand and foot pain (I call it fibromyalgia now) is still stumping doctors, as I always come back healthy on paper from the diagnostic tests they hane me do.  I have asked every doctor if menopause/low hormones could be at the root of my pain.  About all I get back is a non-comittal, "Well, maybe."

  • cs34
    cs34 Member Posts: 253
    edited October 2011

    elimar, that's what I'm saying. I don't want to make everyone think they have Sjogren's (or anything else for that matter) because the bottom line is, if we have done chemo and other treatments, the SE can make us feel not so good but if "you" listen to your body, "you" know the difference.  

    I know that I felt really really bad and I just tried to accept it was from the SE of chemo and menopause. I want to work out so desperately to lose the weight I have to lose but it hurt me too much. Anyway, point being...if someone out there is continually looking for an answer, maybe this heads up could send someone in a different direction.  

  • AnnNYC
    AnnNYC Member Posts: 4,484
    edited October 2011

    cs34, glad you found an appointment sooner!  (Wonder if it's somebody I know?)  Since you work in midtown, maybe we could meet for lunch sometime! (I work at 2nd Ave and 17th St -- with occasional work trips to First Ave and 34th.)

    Plaquenil is not a steroid ("its precise mechanism of action is unknown" -- great, right?).  "Shouldn't be taken during pregnancy unless risks of untreated disease outweigh possible risk to fetus of partial hearing loss" (it's used to treat malaria, and that's usually the case when benefit to mother outweighs possible risk to fetus -- though since this thread is titled "menopause" I guess maybe that's not an issue...).  Should have a baseline eye exam prior to starting plaquenil because it can cause changes to the retina.  Most common side effects are diarrhea/weight LOSS, and possibly nightmares.  Can trigger depression/other mood disorders.  (But I know lots of patients experience it as an "easy" drug.  But maybe an NSAID is what they'll prescribe for your hand pain?)

    Anyway -- glad you got an earlier appointment, and hope they can help you with something easy!

  • cs34
    cs34 Member Posts: 253
    edited October 2011

    AnnNYC, I would LOVE to meet for lunch. I'm on 34th Street too so when you're on 1st, maybe we can schedule something.

    Can you PM me and we can exchange email or phone #'s? I'm not too strong at the PM thing... LOL  

  • elimar86861
    elimar86861 Member Posts: 7,416
    edited October 2011
    cs34,  Oh, I do agree with not just "living with" these plaguing pains and ailments, when you know you should be feeling better.  How can we not help looking for relief when we have symptoms that remind us on a daily basis?
  • cs34
    cs34 Member Posts: 253
    edited October 2011

    Ann, I'm sorry to bother you. I have my RA doctor's appointment today and I'm so nervous. I know I really shouldn't be but thanks to breast cancer, seems I'm always waiting for the next shoe to drop. Anyway, would you be able to give me a little heads up as to what I can expect today? I assume he'll take blood again to run his own tests. I really, really, really don't want to go on more medicine or do any further damage to my poor liver but my hands hurt SO badly... What is your opinion on the medicine they offer for the joint pain? 

    Also, I assumed my fuzziness and batter-up mood swings were due to the surgical menopause but now know that Sjogren's mimics menopause symptoms so now I'm really behind the eight ball... I don't want to add anti-depressants to the list of medicine either but I think I'm going to have to? This SUCKS. Ugh...all I wanted was to feel good...

    Any way you can talk me off the ledge before my appointment? Sorry to put pressure on you but I just cannot believe what a lemon I am... LOL  

  • Pat53
    Pat53 Member Posts: 1
    edited November 2011

    I just did the full battery of blood tests to determine if my symptoms of increased dryness - especially eyes, nose, mouth - are related to any autoimmune disorder including SS. All results were negative. What I learned is that most likely my immune system is reacting to the cancer to produce the whole range of symptoms common to SS and in some ways lupus. And even if tests were positive very few options for standard treatment if a person is on chemo. If I wasn't on chemo the doctor would try out steroids or other treatments to see if my body responded to reduce symptoms. Best guess is that when cancer is gone symptoms would decline. My symptoms increased exponentially when I had the last CT scan even though I was premedicated because of possible allergic reaction when I had scan before treatment started. The 1st time I was pre-medicated with predisone and benedryl only slight increase in symptoms. In addition to dryness I have an all body rash that matches to autoimmune disorder. I was diagnosed with inflammatory breast cancer 18 months ago. After initial treatment of chemo, surgery, radiation, it was metastatic to pelvis and neck bone. 6 months later metastatic to liver. First time to post but thought I'd share my experience in case it is useful. I am coping with extreme dryness by trying out various eye drops, nasal spray, lotion, etc.

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