Extreme Sicca

[katie3]

Hello All,
I have extreme sicca.......... Mouth, nasal passages, eyes and throat..... there is a contstant etreme burning nasal passages into throat... this literally is constant just breathing..also noticing changes in swallowing due to dryness. I am takin Evoxac.... Ponaris saline... biotene .. gum ... mints...... sip, swish swallow....... I have 2 humidifiers..... this happens regardless of the high humidity........... ENT says use salene.... I am.......... I do not produce tears....... My question is.... is there anything I or my Rhematologist could or should be doing.........?   I have had symptoms for many years and just recently was diagnosed..
I am trying to be proactive in my care...... and would appreciate your valuable input...


thanks for being there....... Katie xoxo

[Navigator]

HI

I am sorry you are feeling  so badly.     Well....this is a marathon not a sprint.

You can look at each one of ours by lines at the bottom to see what we take.   There are things that can help.

For the disease itself most start off with Plaquenil.  400mg for most of us. The amount is weight based.   It is a malaria drug which just happens to help with some symptoms of SJS. It does not cure it.  More fatigue and joint pain than dryness ...but it is one part of the arsenal.

For dry eyes....Restasis which is a preservative free cyclosporine ( an anti inflammatory ) can be prescribed by your eye doc for dry eyes. Many of us used OTC eye drops for years until it got too frequent and we moved on to an anti inflammatory.   Eyes are sensitive and can be damaged so I would bring this up with an eye doc. Ophthalmologist ...not an optometrist.  Some get plugs from their eye doc.   I use wrap around sun glasses to keep wind off my eyes....which drys them out.  Most rheumatologists will not prescribe plaquenil without an ophthalmologist screening for retina problems.  I have been on this for over 12 years with no downside so do not be too alarmed but you must get your eyes screened every year if you start taking plaquenil.

For dry mouth.  Evoxac or Salagen is often recommended.   I find that if I take three evoxac pills a day I sweat a LOT!!! So I take two and it is enough. One in the morning and one at bedtime.

Biotene products are helpful for the mouth, Have water by your bedside. Water with meals. Avoid alcohol and other drying foods... unfortunately we can not always live like we did.  Frequent dentist visits are a must. Your teeth will deteriorate and need frequent cleaning.   No matter what I did my teeth began to fall apart.  It is not your fault if that happens.

I use a humidifier next to my bed if it is too dry as well.  If you have dry heat you will probably need a humidifier.

Many of us take supplements as well. I find Fish Oil, baby aspirin (for me helpful).  Drink lots of water.

Get your flu shot.

I also do not produce tears. It is the new normal.   Also it is likely that you may develop a sensitivity to gluten...many of us have developed celiac or irritable bowel syndrome over time.  Once you have one autoimmune disease...others can pop up.

Live as healthily as you can....eat real food, drink water, exercise, feel thankful for what you have...and take it one day at a time. That?s all we can do in the final analysis.

[katie3]

Thank you so  for your  detailed response and caring............ I have been wondering about Plaquenil.....  I'm sorry you have all the same issues...  My Rheumatologist REALLY REALLY wants me to have the lip biopsy....... I'm already hurting with my mouth so I am sooooooooo hesitant to do that... I am SSA positive with all the symptoms. I am wondering if this may effect how he would treat me 9 if I don't have it ).. The roof of my mouth is puffy and swollen from the dryness (been this way for months ) makes speaking difficult and painful..... wondering how to get it under control ( if possible )

Thank you again for caring..... Take care .. Katie xoxo

[SunshineDaydream]

What is your doctor's rationale for getting a lip biopsy if you are SSA+ and have classic symptoms?

[Kathy57]

Katie3,

So sorry that you are having such a rough time.  How long have you been on the Evoxac?  I think it starts to have a cumulative effect the longer you are on it.  My eyes aren?t as bad as my mouth and sinuses, but I take the maximum dose of Evoxac three times a day.  It is still not enough.  It does make my life livable.

I know you said you use saline but do you use a saline nasal rinse?  I use a nasal rinse twice daily and occasionally a third time if I am really dry.  Also, I have coated the inside of my nose with a thin layer of Aquaphor ointment using a Q-tip, because it helps with the dryness and burning.  It also protects from wind and over heated, dry air.

Xylimelts work well for me at night.  Keep using the humidifiers.  If you have fatigue and pain, I would talk to your doctor about Plaquinil.

I have been taking Ubiquinol supplements and I think it helps with moisture.  I hope you can get past this very uncomfortable time and learn what works best for you. 

In the meantime be very kind to yourself.  You need some TLC.

Kathy

[katie3]

Thank you for the Aquaphor and Q tip idea.. I'm going to do that right now..... As far the lip biopsy goes..... his rational is the 'Gold Standard '. ....... I'm considering a new Rheumatolgist... I started Salagan late August and then my rheum switched me to Evoxac so total of about 8 weeks...

[ohiolady]

I am sorry you are suffering so.  Please be patient with Evoxac because the longer you take it the better it works.  After awhile the Evoxac really helped my nasal passages.  I use Restasis and have plugs in my eyes. 

Best wishes.

Anna

[angeldancer]

My rheumy said no need for the lip biopsy because my blood test came up positive.  I was speaking to my rheumy that I pay about why don't Rheumatologist know much about the progression of the disease and how to help us.  He said our bodies handle the AI diseases differently.  Some people will have terrible times with the dryness others will deal with horrible joint pain and other diseases that come from having it (that's me).  I get some distractions dealing with family matters but then that makes my fatigue worst.  Everyone here is pulling for you for some type of reprieve.  Kathy57 said take care of yourself and we all agree.  It reminded me that even for a moment to go forth with a light massage or sitting my hurting joints in a jacuzzi for ten minutes.  Something to just lesson the discomfort.

Peace and Blessings
angedancer

[jkcc2323]

Katie3,

So sorry that you are having such a rough time.  How long have you been on the Evoxac?  I think it starts to have a cumulative effect the longer you are on it.  My eyes aren?t as bad as my mouth and sinuses, but I take the maximum dose of Evoxac three times a day.  It is still not enough.  It does make my life livable.

I know you said you use saline but do you use a saline nasal rinse?  I use a nasal rinse twice daily and occasionally a third time if I am really dry.  Also, I have coated the inside of my nose with a thin layer of Aquaphor ointment using a Q-tip, because it helps with the dryness and burning.  It also protects from wind and over heated, dry air.

Xylimelts work well for me at night.  Keep using the humidifiers.  If you have fatigue and pain, I would talk to your doctor about Plaquinil.

I have been taking Ubiquinol supplements and I think it helps with moisture.  I hope you can get past this very uncomfortable time and learn what works best for you. 

In the meantime be very kind to yourself.  You need some TLC.

Kathy

Have you looked into a rinse with xylitol in it? A friend swears by it, but I haven't looked into it too much.

Also good to hear about the ubiquinol. Look for a water and fat-soluble form for better absorption (brings blood levels higher than a regular form).