Author Topic: New to the Sjogren's world  (Read 1368 times)

grace

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New to the Sjogren's world
« on: May 13, 2012, 07:55:13 PM »
Hi, everyone, I was just diagnosed with Sjogrens this Month. Has been a bad couple of months.  I have some questions, I hope someone can answer.  In March I had 3 spots removed on my face and the biopsies came back as Lupus, Had a bunch of lab work done and my ANA was elevated and speckled.  I was then referred to a Rheumatologist, which she did more lab work but doesn't think I have Lupus, but my SSA was positive. She said I have Sjogren's with lupus type symptoms but I don't have dry eyes or mouth, just skin rashes and sun sensitivity, joint pain in knees and fatigue. I'm just confused cause I don't know if I will ever get dry eyes or dry mouth or If I even have Sjogren's or if I might have Lupus?  :-[ Thank you for any replies.

eye2dry

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Re: New to the Sjogren's world
« Reply #1 on: May 13, 2012, 10:57:43 PM »
hello Grace.

I started out years ago with dry eyes and dry mouth, I still have them to some extent but they are so much better than they were.

I have noticed some folks on this forum who have sjogrens do not have dry eyes or dry mouth or they will have one but not the other. Some say in the beginning they didn't have those problems but later went on to develope the dryness.

Sounds to me  you very well could go on to develope the Lupus, it appears from what you say you had a positive skin  biopsy for cutaneous lupus and positive ANA.

I hope you NEVER get the dry eyes or dry mouth...if you read some of these posts, past and present you'll see that is one terrible part of this sjogrens. I remember a year ago, I wanted to just dig my eyes out with a fork, my bare hands, whatever and be done with them for good! (of course I did not and am better now)

take care and keep watching your post as you will get some good advice from others.


eye2dry

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Re: New to the Sjogren's world
« Reply #2 on: May 14, 2012, 12:14:44 AM »
Hi Grace,

If you are a mother, I hope you had a good Mother's Day.  If not, maybe your Mother had a nice one.
You are fortunate to have a Sjogrens diagnosis as some people wait forever and it never shows.  With SSA and speckled pattern, you are positive.  I think I was SSB with speckled pattern.  It's been awhile ago and I forget and it doesn't matter.

You shouldn't go looking for dry eyes and dry mouth before they find you!!!  As you find time to read some posts on here, you will see many different timelines of when (and if) people get dry eyes and mouth which is usually referred to as SICCA.  I think some docs think that's all there is to Sjogrens, but most of us know otherwise.  Joint pain and other things, rashes, fatigue are all too common.

I can't comment on whether you may have Lupus or not, as I am not a medic.  We have a couple of nurses who post on here and I don't know if they can tell.  We really can't diagnose on the internet.  If sounds like you have a decent rheumatologist.  Good luck and stay with us.  This is a gold mine of information.  Lucy
Lucy
*Dry Eye Queen
**Popsicle Queen

MissyLouWho?

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Re: New to the Sjogren's world
« Reply #3 on: May 14, 2012, 11:08:32 AM »
Hi Grace!  Welcome to our little community  :).  You'll find a lot of comfort here.  We're really supportive because we go through what you're going through too.  We KNOW, so we get it.

The treatment for Sjogren's and lupus are the same.  Speckled pattern is usually seen in systemic lupus, mixed connective tissue disease, Sjogren's, and Scleroderma.  I have positive SS-B with a homogenous pattern.  It sounds like you do have the skin form of lupus.  I'm not a doctor, but if a skin biopsy confirmed it, I would say that should be pretty reliable...  Did your rheumy say why she doesn't think you have lupus?  Maybe she meant she doesn't think you have systemic lupus... that's the bad one.  It involves different organs, blood, etc.  I have that form of lupus and Sjogren's.  It's common to have more than one autoimmune disease.  Because your immune system is like a weightlifter on steroids  :P it tends to rage out of control and spread to other systems. 

Something we all learned here over time is that not all rheumatologists are created equal  ::).  Sometimes it takes a while to find the right one for you.  Some are not very knowledgeable, some are wonderful, some will explain things, some won't.  I'm on my second one.  He's great.  My first one was not.  If you feel like you're in good hands and trust her, wonderful!  If not, explore new ones.  I really like that your rheumy didn't just slap a dx on you and call it a day.  She's not entirely sure yet, and hopefully will do more tests to be sure.  But she has a good idea.  Mine wouldn't rush to dx me either, for fear of misdiagnosing.  That's worse than being misdiagnosed I think.  Being treated for something you don't have.  We all want to know "What do I have?! Give it a name and me a treatment!!" but figuring it out takes a little time.  The diseases love to mimic each other so sometimes it's hard to tell.

Some people have symptoms I don't have, and I have symptoms some people don't.  We're all different.  Seems like our autoimmune symptoms are 'custom fitted' for each one of us  ;D

Up in the upper right hand corner of the screen is a search box.  You can type in anything you want to look up and all the posts related to that term will come up.  Read through the recent posts and see what's there.  And make sure you read the post on "Good Things About Being a Sjoggie".  It's funny and we all need a little humor when we feel overwhelmed by this!  Hope to see you around the boards :)

Melissa

Scottietottie

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Re: New to the Sjogren's world
« Reply #4 on: May 14, 2012, 06:31:36 PM »
Hi Grace  :)

Welcome to Sjogren's world. Lupus and Sjogren's are pretty closely related and can overlap. I have lupus bloodwork but Sjogren's symptoms. As far as I can gather the treatment for both is the same anyway. Plaquenil or steroids and try to alleviate symtoms that arise.

I hope you finmd the site useful. It's always friendly and supportive.

Take care - Scottie  :)
http://sjogrensworld.org/   (our home page)
http://www.sjogrensworld.org/chats.htm   (find our chat times here!)


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grace

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Re: New to the Sjogren's world
« Reply #5 on: May 14, 2012, 08:41:49 PM »
Thank you for your replies :) My rheumatologist said sjogren's is related to my skin problems, but I have a hard time finding much about skin problems on the net.
 
I just started plaquenil and I know it takes six months to take effect. I am actually a nurse but this is a specialty that is beyond me :-\ I know I have alot to learn and I know only time will tell if I will get different symptoms. It's just such a change in my life right now, things I have to change is kinda freaking me out. I love to camp and boat and be outside with my family, I will just have to take a different approach to everything and accept this. I know I will over time :)

Thanks,
Grace

lostone

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Re: New to the Sjogren's world
« Reply #6 on: May 14, 2012, 09:17:33 PM »
If the biopsy came back positie for Lupus, why would the rheummy say no,, does she have some kid of special powers that she can look at something and say it isnt whenit is,, if it walks like a duck, quacks like a duck,, it might be a duck

susanep

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Re: New to the Sjogren's world
« Reply #7 on: May 14, 2012, 09:32:47 PM »
Welcome, and I am sorry you have to have any of these conditions. Anything you do find out will be a help to you in adjusting your life. None of us wanted to have to adjust our lives, but sometimes we don't have a choice, and things just are what they are.

I am not sure I ever get totally use to it, but mostly I am now. (referring to changes in my life) It's more like I am just in another phase of my life. So I am doing all I know, and all I am allowed to enjoy it.

I have both sjogren's and lupus. I didn't know about the lupus until much later. It was found in a more extensive blood test.

The most active I have been in the past couple of years is this spring I have been putting out some plants in the yard, to have me a perennial flower garden with some  small decorative rocks between them. I also have some hanging baskets on my porch, and for the first time, I have started a herb garden. So each day I have to regularly check on which needs watering, etc.

I also have 4 dog babies (full grown ones), and a big furry white cat. They keep me busy too. They are all so loving, and need care, but it's these things that are good stress relievers for me, and still give me things to do, and feel a sense of accomplishing something.

I also have been sewing, quilting, mostly smaller items, but I am working on one big quilt at the moment. My mother was a wonderful, talented quilter/seamstress.

In march my precious mother died, so I have really had to face many things, and she suffered terrible neuropathy, that I have had some small beginnings of.

Before I had to retire early, I worked as a special education teacher grades k-12 , and went to school later in life to do this. I was able to do this for 15 years before my illness put an end to it, due to extreme fatigue, pain, and even my memory. (I had to miss a lot of time at the school) But, I was able to have more time with my mother before she died.

Take care, and feel free to come here whenever you need to with anything. That is what we are all here for.

susanep :)
Sjogren's, Lupus, Hypothyroid, Fibro, Sleep Apnea, diabetes, asthma, Polycystic ovaries, and Gerd. Meds - Pilocarpine, Synthroid, Effexor, Cpap, aspirin, Prilosec, Neurontin, Xanax, eye Drops, vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Proventil- Retired Teacher/Disabled

grace

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Re: New to the Sjogren's world
« Reply #8 on: May 17, 2012, 09:47:46 PM »
Susanep, So sorry to hear about your mother :( I'm glad you got to spend time with her before she left this earth. I have been having some weird symptoms this week, I was leaving WalMart and my legs felt so weak, I have been having this happen from time to time, but it concerns me. I can't even walk up a hill without feeling weakness, and it makes my knees hurt.

I hope I can still work for a long time, I hope the plaquenil helps over time.  I can't afford not to and I have my insurance thru my work so I have to work to keep it. My husband has really been trying to be supportive, but I don't think he fully understands all this, which I can't blame him, I am still struggeling to grasp all the changes in my life right now. Yesterday I had a urine done and it showed a trace of protein in it, should I be concerned? or does there have to be a lot more protein to make the doc worry?

Have a great night everyone :D
Grace

Meld256

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Re: New to the Sjogren's world
« Reply #9 on: May 20, 2012, 02:19:12 AM »
Hi grace,

Welcome to our little community!  ;) I apologize that I'm late with a greeting.

I'm also sorry you're dealing with these symptoms.  I (along with many others) can relate to the fatigue and knee pain, and sun sensitivity.  As I believe was mentioned, we all can have some of the same symptoms and others different ones.  You may be a person who's never bothered much with dry eyes/mouth. 

Leg weakness can concern us; I can say it may be just a part of all the rest. Hopefully, Plaquenil may eventually help the leg and fatigue issues.  Sjogren's and related issues can try our patience or make us more patient than we ever thought we'd be!

Please feel free to ask anything at all here, comment and post away.  It's a great group of people with which to find support, encouragment, information and friendship.  I look forward to hearing more from you and again...Welcome!  ;)

Melinda
57, female, Sjogren's dx 09/2010, Fibromyalgia and CFS dx 04/2009, meds: Savella, trazodone, Relafen, Plaquenil, Restasis, FreshKote eye drops, Bepreve drops, Optive Refresh, Biotene OTC products, retired/SS 12/2010

http://www.sjogrensworld.org/chats.htm
http://www.sjogrensworld.org/index.html

julyasmama

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Re: New to the Sjogren's world
« Reply #10 on: May 20, 2012, 08:46:35 PM »
Hi my name is shannon and i was diagnosed with sjogrens on thursday. I also have fibro cfs ibs neuralgia cervical stenosis nerve deafness  dry eyes dry mouth rashes ear pain hypothyroid high blood pressure ataxia migraines abd i am going in next week for an mri on my hips and lower spine i also have tendonitis in my hands des quervains in my thumbs chronic nausea. Im on the folowing meds: plaquinil salagen klor-con trazodone savella amlodipine hydroxychlorozine klonipin levoxythrine guafenacin ventalin its a lot and im only 39 with 3 daughters i dont work and i want to but im so weak and tired and in pain all the time

Gayle

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Re: New to the Sjogren's world
« Reply #11 on: May 20, 2012, 08:50:10 PM »
Grace and July~
So sorry you had to find this site but welcome! You will love the support here and many who have a ton of experience to share. Sending soft hugs to you both!
Gayle
Sjogrens which is quite enough thank you. Plaquenil, Pilocarpine

star723

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Re: New to the Sjogren's world
« Reply #12 on: May 20, 2012, 09:19:02 PM »
Grace your story is so much like mine it is not funny.  I was told I had Lupus for years, by 3 different doctors. I had the skin biopsy done in the late 80's.  I had the skin rash, joint pain and was tired all the time.  but I had 2 little ones running around and we all know taking care of kids can make one tired.  then in 2002-2003 I started getting the dry mouth and eyes.  My dentist was the one who said something to me about sjogrens.  So I went to my family doctor who did some test and yes that is what I had. Last year I got so bad that she put me on steroids for a few weeks and said I needed a rheumatolgist.  So to a new rheumatologist I went.  Finally this one did a number of test and said I didn't have lupus but only Sjogrens.  I did the elimination diet last summer and found out that I have allergies to dairy.  my joint pain is pretty much gone.  My skin has not broke out in the last few years.  My eyes and mouth are getting worse.  I clean houses for a living because I can go at my own pace.  I don't have to worry about getting fired for being slow.  I found this site just last week. I am so glad I did!! I have been on here everyday since I found it just reading ~ so much good information!!
Good Luck~ :)
55 yrs young~Mom of 2~ Love to garden~ Primary sjogrens~~Dairy allergy~Raynaud's phenomenon~Use Restasis and take zyflamend with a long list of herbs and Vitamin that changes as needed.

MissyLouWho?

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Re: New to the Sjogren's world
« Reply #13 on: May 22, 2012, 11:04:46 AM »
Star723~ have you seen an ophthalmologist for Restasis?  It takes a while to work but should help with the eye dryness.  Are you on salagen or evoxac for moisture replacement?  It helps with moisture everywhere~ eyes, mouth, nose, skin, inner body, etc.  And have you tried plaquenil yet?  It will slow the progression of the disease.  If you haven't been given any of these, I'd call your dr. and ask about them.  They're pretty much the beginning standard meds.  Some people do well on them, others have to try other meds. 

Glad you found compatible work!  That's hard for us to do because of the fatigue, weakness, etc.  Good for you!

Julyasmama~ there are a lot of people here going through similar things as you.  Your age, too, and with kids.  I hope you stay here with us because one thing I've learned from this community is we all have hard times where it seems hopeless but we're all here for each other and with the love and support from these people here we carry each other through to better times.  Many of us have found treatments we never knew existed, found better doctors and just felt the compassion form others who know what we're going through.  Each one of us has a custom fit disease tailored just to us, but we all understand how you feel.  For every symptom you go through, there are a handful of us that are going through it too.  And sometimes it just helps to know that  :).

Just post your questions and we'll answer everything we can.  You can type in your keywords in the search box in the upper right corner and a bunch of topics aboiut it will come up so you don't have to post if you just want to read.

I hope you both find this to be the peaceful comforting place I do  :)

WildThing

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Re: New to the Sjogren's world
« Reply #14 on: May 22, 2012, 11:24:58 AM »
Hi Grace, welcome to the board, nice to have you here.  My diagosis is still up in the air so not sure if I can help you with yours but welcome anyway I hope you find this place useful I know I have.