Author Topic: Hi, I'm new, sort of  (Read 2549 times)


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Hi, I'm new, sort of
« on: December 28, 2010, 05:12:48 PM »
I joined abt 3 yrs ago, right after being diagnosed with primary sjs.  Sitting at the computer for long periods of time and general overwhelming fatigue made it difficult for me to check the site and post very often so i just stopped; I guess I was deleted.  I just got a laptop and hopefully this will help.  I am a 63 yr old female dx abt 3 or 4 yrs ago but I think I have had sjs for years.  Dry eyes and fatigue started 1st.  I also have dry mouth, throat and nose, joint pain, mental fog, tendonitis in wrists, spinal stenosis, disc degeneration, numbness and tingling in fingers, feet and shoulder.  Since I have had kidney stones abt 2 yrs ago and other symptoms, I am now concerned about kidney involvement with sjs. I was on generic plaq for abt 18 months, but had abnormal field of vision test, so I was taken off.  I use restasis for eyes and pilocarpine for dry mouth.  I am surprised that I had to be taken off the plaq because my opthalmologist told me at an earlier time that he had never recommend anyone be taken off plaq because of eye problems.  I feel that I failed the field of vision test because of slow reaction time, but he said that the pattern fit the areas of the eye that can be affected by plaq.  My rheum has not given me any more meds to control the progression of the sjs because she attributes some of my symptoms to depression and wants me to get that under control.  I disagree with that approach and am looking for another rheum; am considering a holistic or naturapathic (sp?) practitioner. I have a sister with Hashimoto's; have read that auto immune diseases occur in families, but she is the only family that has AI disease.I fear that this disease will cut my life shorter either directly or indirectly. On a lighter note, we had a lovely snowfall Christmas night and the day after, just not enough of it.  I guess some of you from up north think I'm nuts, but here in GA, we don't see much of it.

Joe S.

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Re: Hi, I'm new, sort of
« Reply #1 on: December 28, 2010, 05:19:28 PM »
2tired, I will welcome you again. Some of us have posted what we are taking to help others in their search for management. From what I have read here you could have a very long life with this illness.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism


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Re: Hi, I'm new, sort of
« Reply #2 on: December 28, 2010, 06:07:00 PM »
Hi 2tired  :)

Welcome back. None of us in here will think you are nuts.

Have you been tested recently for lupus? I've read that lupus causes kidney problems more often than SjS but there have been sjoggies with kidney problems too. I'm not medical - and I don't have them myself - so I'm not knowledgeable.

I'm sorry that Plaquenil did not work out for you. I found homeopathy helpful at one stage but that was actually before diagnoses. I do think it can make one feel better in oneself but it's no cure for the underlying condition.

Take care - Scottie  :)   (our home page)   (find our chat times here!)  (way to chat + nickname and #Sjogrensworld)

Never do tomorrow what you can put off till the day after tomorrow!


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Re: Hi, I'm new, sort of
« Reply #3 on: December 29, 2010, 08:18:21 AM »
Welcome back.  I'm sorry too that the Plaquenil didn't work out for you.  Is your doctor willing to let you try a low dose of steroids for a little while to see if it helps you?  I'm in NC and we got about 8 inches of snow on Sunday.  It's already mostly melted where I live though.  I hope you have a Happy New Year!


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Re: Hi, I'm new, sort of
« Reply #4 on: December 30, 2010, 06:44:53 PM »
Depression? What type? Situational - well DUH?      Getting the depression under control first sounds like getting the cart before the horse to me too.

With some depression - you can't change your situation but you CAN change how you look at things. You can work on how you let things affect you. A few visits with a counselor sure helped me.  I was a caretaker to my folks for many years. I also had a toxic coworker. 

Most company insurances pay for at least a few visits with a counselor per year. Gosh if anything it helps talking to someone who doesn't have a vested interest in you and can offer good advice.
Good luck on your search for a new doctor!