Author Topic: Now What?  (Read 1048 times)

RedBird

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Now What?
« on: October 30, 2018, 10:01:34 AM »
Hi All.  First post, but I have been reading here for a while. 

Long story short....typical Sjogren's symptoms started to interfere w/ work & day-to-day activity.  Googling symptoms led me to learning about Sjogrens.  I had/have a million & one reasons to explain symptoms away:  coming into menopause I assume at 47, 3 kids, poor sleep at times, joint pain/fatigue due to aging or running etc. etc. 

I finally decided to order my own blood tests, based on reading, and I told myself only if there was something significant would I go see someone.  Nothing remarkable in June.  High rheumatoid factor, but I know that doesn't mean too much in and of itself.

By end of July, I got an appointment w/ area Sjogren's specialist (dental) anyway, because my mouth is a continual source of increasing stress & financial burden.  He suggested lip biopsy after unstimulated & stimulated salivary flow was very low.  One eye dryer & below cut-off Schrimer score.  The other was borderline if I remember correctly.

Lip biopsy was negative, so I don't have Sjogren's.  The doctor acknowledged clearly having dry mouth problems. Focal score zero.  No signs of malignancy.  Only thing else the report said was something like "chronic diffuse lymphocytic sialadenitis." 

Throughout the process, I've been offered a medication said to have side effects such as sweating & upset stomach.  I already have a topical med for mouth corners & nose along w/ dry mouth toothpaste.  I declined the medication due to the side-effects & testing negative; however, I'm rethinking due to just wanting some relief.

What would you advise?  I've been attributing fatigue & aches to lifestyle.  I'm not looking for something to be wrong, but I just feel off.  Should I give medication a try?  Thank you.
« Last Edit: October 30, 2018, 10:05:14 AM by RedBird »

Carolina

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Re: Now What?
« Reply #1 on: October 30, 2018, 01:22:44 PM »
Dear RedBird,

You may be on the journey to deciding that you do indeed have Sjogren's or some Immune Disorder.

The journey is often very long (often 8 or more years to clear understanding), and there may be many stops along the way.

I began with dry eyes/dry mouth in 2002, and my Yale trained Rheumatologist diagnosed Sjogren's Syndrome, inspite of negative blood work.   In her opinion the key is the symptoms, not the tests.

So we treated the symptoms with Evoxac (and yes there may be side effects, but lack of saliva and tear film was a nightmare).  Eventually I switched to Salagen.  And I've taken one or the other every day for 16 years.

So I advocate using one of those drugs to alleviate dry mouth.  But we are all different, and each must make our own decisions about medications.

I use eye drops, in winter I have a humidifier in my bedroom, and always have a bottle of water with me.   The mantra is the 3 s's:  Sip-Swish-Swallow.   Sugarless gum also helps, but I am a hopeless 'gum snapper' and it isn't pretty! 

Fast forward to the present and I have developed a host of 'conditions' related to the neurological complications of Sjogren's/Immune Disorders.  The list is located in my signature line.

Most people with dry eye/dry mouth do not go on to complicated conditions, even with a clear diagnosis of Sjogren's Syndrome.  So that is important to remember, RedBird.

Keep us posted.

We are here for you.

Regards, Elaine

Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3

Sharon

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Re: Now What?
« Reply #2 on: October 30, 2018, 05:33:52 PM »
Lip biopsies are not 100% accurate and that is a known fact.
If you find you have anything autoimmune going on then early treatment is key.
Treat the source, not only the symptoms.
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

RedBird

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Re: Now What?
« Reply #3 on: October 31, 2018, 07:41:06 AM »
Thank you Elaine & Sharon for your replies.  I appreciate the feedback.  I'm chuckling  while trying  to type back w/ a "frozen" finger.  I've had Raynaud's since my twenties, but it has transformed into more than a nusiance.

I know there are things I need to improve on my own.  Hydration is one.  I'm a trauma therapist & walk a tricky line of trying to talk w/ dry mouth/stuck pill in throat kind of feeling & having to go to the bathroom a lot.  I limit my intake of fluids &/or just grab a swig of ginger ale.   Gum helps, but I know I need to improve my water intake.  Xylimelts no longer work. 

I'm torn between feeling something is off, other than just being dry & achy, and accepting tests are negative & I'm just getting older or something.  Either way, I hear what your saying about treating symptoms.  I think I will probably give the medication a try.  Not even sure which one the oral doctor was considering?  I had no reason to see him again, so perhaps I should consider finding a PCP or rheumatologist as well?

Thanks again for your response & guidance.
« Last Edit: October 31, 2018, 09:42:26 AM by RedBird »

Sharon

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Re: Now What?
« Reply #4 on: October 31, 2018, 12:39:18 PM »
Did you have the ANA MULTIPLEX blood test done?
Other things that can affect saliva flow are some types of medications.
If you're taking meds for anything else, antihistamines, decongestants, etc. check if dry mouth is one of the possible side effects.
You may want to try a supplement called Ubiquinol that was shown in a study to increase saliva and has helped many here (including myself) at 200mg daily.
Another thing to try especially for the joint pain is an AIP diet which can help lower inflammation levels.
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

RedBird

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Re: Now What?
« Reply #5 on: October 31, 2018, 02:04:08 PM »
Thank you very much for the additional suggestions, Sharon! I will absolutely investigate the AIP diet &  Ubiquinol.  Sounds interesting, and I'm open to trying anything appropriate for my symptoms.

My ANA IF was negative.  I've always assumed all ANA tests are alike?

Sharon

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Re: Now What?
« Reply #6 on: October 31, 2018, 04:00:31 PM »
They are not the same. The ANA MULTIPLEX is more sensitive.
My ANA IFA has always been negative as well but my ANA MULTIPLEX, RNP, RNP-A all came back positive
indicating autoimmune.
Of course, you can always be completely sero-negative and have an autoimmune.

Good luck trying the AIP diet and ubiquinol. They are interventions that do not require medications and that can make a lot of difference
in one's quality of life.
« Last Edit: October 31, 2018, 04:05:34 PM by Sharon »
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

jkcc2323

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Re: Now What?
« Reply #7 on: November 01, 2018, 11:19:41 AM »
Thank you very much for the additional suggestions, Sharon! I will absolutely investigate the AIP diet &  Ubiquinol.  Sounds interesting, and I'm open to trying anything appropriate for my symptoms.

My ANA IF was negative.  I've always assumed all ANA tests are alike?
Others have mentioned doing a liquid CoQ10 (ubiquinol is the reduced, active form) if you have any issues swallowing. In addition, a water and fat-soluble form of CoQ10 or ubiquinol absorbs better. Review your supplements with your doctor as well. Here is also some background research for you on the subject: https://www.ncbi.nlm.nih.gov/pubmed/21406193
I hope you find some success working on the diet and lifestyle changes! Good luck!