Author Topic: DX'ed then kicked to the curb. HELP!  (Read 1748 times)

IllnDontWantAPill

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DX'ed then kicked to the curb. HELP!
« on: May 27, 2013, 12:58:23 AM »
Can someone explain this disease in great detail? I get mixed responses. I don't understand how it can't shorten your life expectancy but yet kill your organs over time yet you don't die earlier? I see the word SICCA on here a lot. What is that? Does your SSA level indicate how bad your Sjogren's is? Example: the higher the level the worse you suffer? Is this kind of like a cancer? I read it was staged 1-5 depending on your symptoms. Is any of this true? Am I hurting myself by not treating the disorder? Is it kinda like MS in regards to relapsing and remitting with symptoms? AKA flare-ups, good times, bad times?

That's enough to start with regarding my questions.

Thank you!
Gary

Lesley_x

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Re: DX'ed then kicked to the curb. HELP!
« Reply #1 on: May 27, 2013, 01:37:24 AM »
It's actually quite rare for sjogren's to attack the organs. We are more prone to lymphoma which can affect life expectancy. Just remember that the people seeking help on forums will be the worst affected and these boards will paint a gloomier picture. Most people with the disease will go about their daily lives without problem. Personally my sjogren's doesn't cause me too much of a problem (in terms of dry eye/dry mouth). My main complaint is GI symptoms and fatigue which may be unrelated to sjogren's at all.

Sicca means dry eyes and mouth, it's just a description of symptoms.

I don't know where you're from but there seems to be quite a big distinction between how this disease is treated in the UK and the US. I have had no treatment for sjogren's itself. I had to ask for eyedrops even though my schirmer is 0mm! They don't seem to regard it as particularly serious or life altering here. Maybe it's just my rheumatologist lol.

I have never heard of it being staged before. And I don't think the blood results necessarily correlate with how severe you are. The only blood results I would think would correlate are complement (which tends to get lower the more active the disease) and inflammatory markers such as ESR/CRP. From a purely anecdotal point of view when I have felt worse these results have been worse.

Also I see people on here talk about 'flares' a lot. My disease never progressed that way. When I was diagnosed I did not have noticeable dry mouth but I stopped being able to wear contact lenses anymore. I would have a period where the dryness would get worse, I would then get used to that level of dryness and so on. It then got to the point where I was producing no tears or saliva and I haven't noticed a 'flare' since.

THE BRIT

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Re: DX'ed then kicked to the curb. HELP!
« Reply #2 on: May 27, 2013, 08:07:13 AM »
  It is scary when you first get dx.  I had to look it up and I'm a nurse.  It has become more well known since Venus Williams got dx.  One of the other people on this site posted this link and is SJS flash cards which really helped got through everything.  SICCA relates to describing the dry eyes and mouth.  If this link doesn't work and I hope it does then you can go back on the site and find old posts and put in flash cards and it will come up.  Please stay on this board it is very helpful and supportive and you will find it helpful, good luck.
http://quizlet.com/15675412/rheum-sjogrens-flash-cards/

stprdi

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Re: DX'ed then kicked to the curb. HELP!
« Reply #3 on: May 27, 2013, 09:57:14 AM »
I am fairly new diagnosed and notice that I have days when my symptons are really bad and then they will settle down for a while.  One thing I have learned is how differently it affects everyone.  My rheumy told me she thought mine may be associated RA or Scleroderma as I do have a few of those symptons.  Just not confirmed.  I wondered about the MS related thing as my bro was recently diagnosed with that.  Are you in the UK?

genko_b

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Re: DX'ed then kicked to the curb. HELP!
« Reply #4 on: May 27, 2013, 10:17:00 AM »
Welcome to this forum - we are sorry that your diagnosis has led you here. Everyone here has been where you are - worried about what the diagnosis means and full of questions.

You might find it helpful to read some basic background info on autoimmune diseases, which is what Sjogren's is. It is not cancer. The Sjogren's Syndrome Foundation has some very good materials available. That will put many of your questions in context and eliminate others.

It is always upsetting to be diagnosed with a chronic disease like Sjogren's. After an initial time to get used to and learn about this new reality you'll find a balance point that works for you in terms of activity and treatment.

For some people test results correlate very closely with how they are feeling, and for others the test numbers don't seem to have any relevance. What is important is to get to know your own body and pay attention to what it is telling you. It may be different from the doctor is telling you.

Take care and check back,

Genko

Carolina

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Re: DX'ed then kicked to the curb. HELP!
« Reply #5 on: May 27, 2013, 11:38:38 AM »
Who kicked you to the curb, Gary?   Sounds like you want off the bus, out of the street, and out of town!

There is no one way to describe what you may experience, because it varies person to person.  People who die as a result of Sjogren's Syndrome usually die of lymphoma, which is the cancer that may appear in those with Sjogren's Syndrome.

Even cancer isn't always 'like cancer' : a steady progression towards death, which is what it sort of sounds like you're asking about.

(Life is a steady progression towards death, by the way, meaning that it only has one ending, sooner or later).

Sjogren's Syndrome is an auto immune condition that is related to many other autoimmune conditions.

The people you will meet on this forum are people who cannot ignore Sjogren's, but many people with Sjogren's can pretty much ignore it.

And yes it has periods of remission and periods of flare for most of us.  Unfortunately, and again this is those that are here, Sjogren's often brings its friends, other conditions that can accompany auto immune disorders.

Sjogren's Syndrome is primarily a condition of older women, tho' both men and women can be diagnosed at any age.

The dryness part of the condition may appear first, but may not appear until much later, and in some people with the condition is never appears.

I have two autoimmune conditions and have just been diagnosed with an Immune Deficiency. Talk about irony. I don't have enough immune factors (deficiency) but the ones I DO have attack my own body (auto immune conditions).

Autoimmune conditions all can have several co-conditions in common.

They are often very difficult to diagnose.

They are not well understood by the medical and research professionals.

Most don't have medications, procedures or treatments that address the causes because the causes are not well understood, nor are ways to address the causes.

Extreme fatigue, pain, and depression are CO-CONDITIONS of most auto-immune problems. All of those conditions can be addressed with medications, life style changes, and other coping mechanisms.

Autoimmune conditions often overlap, and more than one condition may occur.

Autoimmune conditions cannot be cured, and they do not go away, although there can be periods of remission, when the condition isn't actively attacking your system. I have known some people who have very busy productive lives with autoimmune conditions, usually they have long periods of remission. I have known others who have never had remission.

There is a long process of accepting an autoimmune condition, Gary. There is grieving and denial, anger and frustration. This comes and goes in waves, and varies with many factors.  It is completely dependent on how you are feeling and how the disease is affecting you.  I had about 4 years after my diagnosis with SICCA (Sjogren's without confirming blood work, which is fairly common), before the co-conditions started accumulating for me.  I just managed the dry mouth and dry eyes, and that was that, for four years.

If your Sjogren's Syndrome progresses, you will notice changes in your sense of well being.  Be alert to the idea that what is going on may be related to your diagnosis of Sjogren's Syndrome.  That's all you have to do.

You may be years and years away from examining your health in relation to this diagnosis.  That would be wonderful!

When you do need to address how you are feeling, here's some advice:

It is important to find medical professionals that you feel comfortable with.

Unfortunately, medical services are very specialized in our country, and the costs are very high.

Most of us have many professionals that we visit at some time or another, depending on what parts of our body are affected by the autoimmune condition(s) we have.

Most medications that alleviate symptoms carry some side effects, so a balancing process is always at play.

A medication that helps one person may do nothing for another, and be harmful to yet a third.

Some of us have become allergic to medications over time, as well.

This is the new normal. And it is a normal that changes.

You will find support and information from others with your condition(s). Seek out several groups on line and find the ones that give you what you need.

I wouldn't wish AI (autoimmune) conditions on anyone, but I have a very good life, and offer support and information to others when I can.

Hugs

Elaine


« Last Edit: May 27, 2013, 12:16:21 PM by Carolina »
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Pisces24

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Re: DX'ed then kicked to the curb. HELP!
« Reply #6 on: May 27, 2013, 01:08:42 PM »
I was diagnosed with Sjogrens in 2003. My symptoms were dry eyes, mouth and numerous sinus infections. Took different "so called specialists"  6 yrs to find it.
In 2012 a dr found lymphoma on a routine CT scan. No symptoms. She said the "type" of lymphoma NHL is very treatable and "potentially curable".  I had 6 months of R-Chop and some methotrexate shots. My 6 month checkup was April 2013 with no signs of lymphoma. Yaaay!

The thing is ANY autoimmune disease makes you more susceptible to get other stuff. That doesn't mean you will GET it.  But the fact you have any disease wakes you up more to the fact that you won't be around forever. It is a rude awakening.
You just take what comes and get on with your life.  If you worry about all the possibilities and let your imagination run wild, you shorten your own life to a state of almost inaction. That is no way to live. 

Not sure who "kicked you to the curb". You have to be proactive with some drs and they are definitely not geniuses.  ::) If it is another person, feel sorry for them as they have a heck of a lot of growing up to do yet.

jazzlover

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Re: DX'ed then kicked to the curb. HELP!
« Reply #7 on: May 27, 2013, 02:58:54 PM »
Lesley .. are you in the US?? I wasn't sure what you meant by "here"... thanks...

Gary... many on this board manage symptoms with natural supplements and diet. I am NOT saying any of that cures it, just that some of us choose not to take prescription medications for it.

I have been helped by eating organic, non-GMO foods and doing other healthy things for my body.
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

IllnDontWantAPill

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Re: DX'ed then kicked to the curb. HELP!
« Reply #8 on: May 28, 2013, 12:41:21 AM »
Pisces24: Very well said. The person that kicked me to the curb was my Rheumy! She laughed hysterically at my disability then the practice banned me. Go figure when I'm being made fun of by a doctor. I have a different name in mind beside doctor! Congrats on being lymphoma free. Yay is right!

Jazzlover: I agree natural is the way to go. I pretty much have some kind of allergy to everything I take not OTC. Its frustrating!

Carolina: my Rheumy kicked me to the curb. I saw her twice and then the practice banned me but not until after she made fun of my disability. I would like to knock her teeth down her throat but I'm not going to jail for that B****! Your post was beautifully written and well thought out and I agree and appreciate your time writing it. Hugs Elaine. Thank you!

Genko: thank you! It's a tough pill to swallow especially at 29 and being male. My Rheumy saw me 2 times then I was banned from the practice after she made fun of my disability. I didn't get to ask any questions and I have a ton as you can see. I've never felt so used and hopeless. Needing the guidance of a doctor but not having one to turn to for asking vital questions that concern my life and well-being.

stprdi: I'm not in the UK. I'm in the U.S. They also think I have MS but after 3 spinal taps, one showing O Bands in both CSF and serum, another clean LP, and a 3rd clean LP I don't have a dx and I'm done with LP's. If they ever diagnose me it will be by MRI! I'll do all the VEP's, neuro optha's, EEG's, EMG's that they want but they aren't touching my back anymore!

THE BRIT: Thank you for your response! It's so good hearing feedback from nice people who understand what I'm going through and where I'm coming from!

Lesley_x: I'm in the U.S. and healthcare here sucks! I feel like crap all the time so can never distinguish what is what. I need a doctor to say yes this feeling is sjogren's or no it's not sjogren's etc so I can be aware of my symptoms and body and know what's going on. My CRP and WBC were off this past blood work so I'm assuming I was in some kind of flare-up during the blood test. Thanks so much for your response!


tiffferoni

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Re: DX'ed then kicked to the curb. HELP!
« Reply #9 on: May 28, 2013, 08:29:35 AM »
Try not to be too resistant to medications.  I know everyone is different, but they have really helped me.  I would not go a day without them.  They have kept me off pain meds for the most part.  Natural is always the best way but try to keep an open mind.

THE BRIT

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Re: DX'ed then kicked to the curb. HELP!
« Reply #10 on: May 30, 2013, 03:49:47 PM »
  I cannot believe your rheumy did that and then to ban you from the practice is amazing and disgusting.  I am completely with you on the LP's I have had 4 and will need an extremely good reason for another one.  Why don't you post which state or even which town you live in and see if someone can recommend a doctor or go to one of the big SJS clinics like John's Hopkins amongst others but it will be a longer waiting time and might involve a lot of travelling which is probably the last thing you feel like doing.  I agree with Tifferoni though natural is good and a lot of good info can be found on the site about different diets and which vitamins to try, but some of the regular meds can help you.  Unfortunately it is trial and error thing.

finallyadx

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Re: DX'ed then kicked to the curb. HELP!
« Reply #11 on: May 31, 2013, 11:46:37 AM »
So sorry to hear you had such an insensitive, unethical rheumy.  As another poster stated, try to find a new rheumy  - see if anyone on the board knows of a good rheumy in your general area.

As some others have stated, natural may be the way to go, but if natural does not work, do have an open mind to "trying" some of the more conventional medications - they work wonders for some and plaquenil has helped me.

Best wishes.  Hang in there.
Primary ss dx 2013, plaquenil, vitamin d, iron supplements, vitamin b12, d-mannose for chronic UTI's, magnesium for heart palpatations and Zinc

IllnDontWantAPill

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Re: DX'ed then kicked to the curb. HELP!
« Reply #12 on: June 07, 2013, 11:28:47 PM »
finallyadx:

Thank you. I can't either but part of me knows what the world is capable of, even doctors. I find myself saying "I am surprised but I'm also not" quite a lot, so that should tell me something!

I'm gonna find a new Rheumy. I just moved to Peoria, Illinois from Las Vegas NV (big mistake!!)  :) and we might be going back. We meaning me and my mother. I haven't invested in finding doctors yet or applying for medicaid because more than likely we're moving back. It's a waiting game right now. I would hate to get established then have to pack up and start all over again in Vegas.

I'm all for natural! I don't know what natural consists of but if it's herbs and vitamins, supplements etc, I'm there! I was on Plaquenil for 2-3 weeks and had to stop it. I'm one of those sensitive people who have an allergy to everything, even if it's not a life threatening allergy. Plaquenil was AMAZING at first. Gave me my life back. Two weeks into it, I couldn't put my own socks and shoes on, my mom had to dress me from the ankles down and I stopped it. It doubled my morning stiffness, joint pain etc. At first it took it away and life was great but then I took a turn for the worse so...I may try it again in the future but I don't like the eye thing it does to you and they have to keep a close eye on your vision etc. That's scary!

Best wishes to you too!!

THE BRIT:

Thank you! Sorry..I kinda mixed my response to you in with finallyadx. When I was looking at the post and responding to each section, I was looking at finallyadx post, but some of the responses were geared towards you. I don't feel like retyping lol. My back is killing me! So read the post to finallyadx and my response is to both of you. Thanks so much and John's Hopkins is actually 20 minutes from where I was born and raised! I grew up in Glen Burnie Maryland about 20 minutes from Baltimore! I don't wanna travel when local doctors can't fix me..and that's paying nothing! I'd be mad to spend money on traveling expenses and have a doctor say "can't help you.." or something like that. I can't get help locally for free with no copays so I don't wanna travel but maybe UCLA is an option if I move back to Vegas. Thanks again!

Belsey1

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Re: DX'ed then kicked to the curb. HELP!
« Reply #13 on: June 07, 2013, 11:54:14 PM »
Plaquenil, as you probably know, is hydroxychloroquine.  I couldn't take it....for various reasons, most of which were GI related.  However, my new rheumatologist tried me in chloroquine and I have had no problems whatsoever with tolerating the medication.  Both drugs helped tremendously with my SJS and I am glad to have the chloroquine.

Hope you find the right course of treatment for you,

IllnDontWantAPill

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Re: DX'ed then kicked to the curb. HELP!
« Reply #14 on: June 07, 2013, 11:56:41 PM »
Belsey1:

Thank you. I actually didn't know that about Plaquenil. I have a ton of GI problems myself but don't remember that being an issue with Plaquenil. Everyone is different though. Thank you and good luck to you as well! I'm glad the other med is working for you!