Just joined / new diagnosis

[Ginger]

Hi everyone,
  Just joined this forum and have already found a lot of helpful info. Many thanks for those who started this forum and maintain it.  Have lived with symptoms for quite some time but just got a diagnosis of Sjogrens this summer with two positive SSa ( RO ) antibodies.  Have only had a positive ANA once in four yrs. Others have been negative.  I've lived with sun sensitivity and migraines for yrs. Hypothyroid last 2 1/2 yrs.  Also have joint pain on and off, fatigue, skin rashes, low grade temp at intervals with no apparent infection. Have never been able to tolerate wearing contacts for more than about an hour without eye irritation but that is the only symptom of dry eyes so far. Also last few months have been having pins and needles type discomfort in my feet and hands at times. I've been suspicious of possible lupus for several yrs but at this time only a diagnosis of Sjogrens.  I never knew you could have all these other symptoms with Sjogrens. Always thought it was just a dry eye and dry mouth thing but I see from reading a lot of the posts on here that indeed you can. My reumatologist recently started me on Plaquenil ( I opted for generic as copay $10 as opposed to $50 ). I was to start at 200mg. daily for a week and then increase to 400mg.  I have stayed at 200mg daily per my preference right now. Wanted to see if the lower dose would make any difference first as I always think less med is better if it works.  Only been on it for 2 1/2 wks so far so haven't noticed any benefit yet. Helpful to read these posts and meet others that are dealing with same issues.  Wondering if anyone has tried any natural ways to heal?  While doing research on line came across this article and found it interesting. Will post link here.   http://curezone.com/forums/am.asp?i=58424

[iraisin]

Hi Ginger, Welcome.

Yes, Sjogren's has many faces and it will rear it's ugly heads randomly. So sorry you have this, but glad you are getting treatment. The plaquenil will take a while to see if it's working, some folks it can take a year, Mine was a couple of months and it made me sick at first.

Just a note to help others here, use spaces between your sentences or just more often - it helps folks read your posts easier.

And yes, changing your diet does help. I can't adopt the "it will cure me" mantra, but anything we do in the way of a positive changed, be-it food, stress management, life management, etc. Will be a positive change - which helps for sure.

If you do elect to go the route of diet change - especially one as radical as raw fruit, veggies and juicing as a sole source of nutrition, I would like to tell you what happened to me.

I did the radical change, went from being a full carnivore to vegan overnight. I felt great with the change and just knew I had beat this thing.

Well, after a couple of months, I flared, and I flared bigtime! I had my heart in it so much, that it multiplied my heartbreak. I felt that I had been doing everything right, trying so hard that I DESERVED not to have this anymore.

Well, that's not the way it goes. It does make things better, that's why I've stuck with it. But it doesn't cure it - if it does, it is very rare, and we are not hearing about the relapses after these people make their proud proclamations of diet changes curing ai diseases.

AI can go dormant and come back. I feel better between my flares, but I don't recover fully after each flare - another rude awakening for me.

Do what you are wanting to do. I just don't want you to go thru it all and not hear about what happened to someone who did. There are many stories, and much hope, I pray I didn't steal that from you. I just wanted to prepare you just in case.

take care, and much luck with your plan.
iraisin

[Ginger]

Thanks for the reply iraisen and the tips about spaces between sentences. 

The article I posted isn't really "my plan" but I found it interesting. I don't think I could really survive on just raw fruits and vegetables anyway. Would be so boring after all.

Appreciate hearing you personal experience. Nice to know what worked and what didn't.  I guess all who get this autoimmune diagnosis are looking for a "cure" and hopefully one will be found someday.

The plaquenil does make me feel nauseous if I don't take it after eating. I usually follow it with some yogurt and that has been helpful. Have you heard the recent info on opthamology sites about 400mg. daily being too much for some people based on height/weight?

[iraisin]

No, I haven't seen that. Thanks for the heads-up. I will be seeing a new optho - my third this year. I feel like a frog jumping from lilly pad to lilly pad when it comes to my eyes. PM me links if you will...thanks.

This new optho doc I am going to see does the blood serum treatments. I am very worried about my eyes - I really need them. HA!

Anyway, I will make a note to ask him about the Plaquenil dosage. I'm glad you mentioned it.

[Ginger]

Your welcome.  Here is a link to one opthamology site. This isn't the one I was referring to but it will do. Can't find where I saved that one.

  I do weigh less than 135lbs so it seems that 400mg. a day would be too much for me.   

http://www.eyeupdate.com/plaquenil-updates.html

[iraisin]

Interesting. It also states that true monitoring isn't really required until the 5 year marker.