Sjogrens World Forums

Sjogrens Topics => Living With Sjogren's => Topic started by: balor123 on February 04, 2011, 07:27:50 PM

Title: Is there hope?
Post by: balor123 on February 04, 2011, 07:27:50 PM
From what I've been reading, there doesn't seem to be much hope for Sjogren's in the near future. Is that an accurate assessment? We have the Sjogren's Syndrome Foundation but grants don't seem to be in promising areas. It's not even clear how much money is really allocated to this disease. It's certainly no Lupus despite similar symptoms. I see more interesting research on much rarer diseases.

A full DNA sequence costs about $15k right now but within 10 years it's expected to drop to ~$100. My primary hope right now is that by that time we'll be able to build up enough samples that we can start data mining with fruitful results that will yield to more interesting hypothesis. Are there any other interesting avenues that I should be following?
Title: Re: Is there hope?
Post by: Joe S. on February 04, 2011, 08:22:39 PM
I believe there is hope, but I sure do not get any from my MD. Since there is no cure that I know of yet, I think that we have to find management techniques that work for us. For that this forum is vital. Sometimes they are simple like a scarf tied over our head before bed. For some they can be taking Plaq or MTX. I wish those were options for me.
Title: Re: Is there hope?
Post by: anita on February 05, 2011, 07:58:13 AM
Hi Balor,

I really think you would benefit from a visit to the Hopkins Sjogren's Center.   You mentioned the idea before and I thought you commented you weren't too far away.  I know it is labor intensive to get in, but Dr. Birnbaum is worth the time and effort...given your neurological involvement.  JH is doing current research on Sjogren's.  I usually submit to several additional tubes of blood for their studies at each visit.  I've even donated a couple tubes of CSF from a lumbar puncture.  So I know their research is active.

As for hope:  well I think there is actually.  I believe they will redefine the syndrome (to those that really belong) and focus on treatments like B cell modification...hopefully finding ways to do so without the extreme side-effects of meds like Rituxan.

I should save some of the pages from this site/forum for viewing 10 years down the road...should make for an interesting, and probably humorous, read when we look back to what have to work with (in treatment) now.   LOL

Don't give up.
Title: Re: Is there hope?
Post by: Scottietottie on February 05, 2011, 08:43:35 AM
Hi Balor  :)

Do you mean is there a hope of getting cured? My answer to that would be no. If you think you are going to be cured you are living under false hope.

Can you feel better than you do now? Very likely yes.

Getting to the acceptance stage of SjS is not easy so I'm not pretending it is - but it can happen. Work with your doctors. Alleviate the symptoms that you can alleviate. Pace yourself. Try to minimise stress.
You only have one life and if you have to live it with SjS - so be it. There's no point worrying about what may or may not be round the corner. There is no point sitting in limbo waiting for a cure. Aiming at finding positives is helpful.

I do hope there will be a breakthrough someday and personally I think stem cell research is very promising but I'm not actually expecting anything to happen in my lifetime. If it does - whoopee - but I'm not counting on it.
Meanwhile I intend to do what I can in the here and now.
Take care - Scottie  :)
Title: Re: Is there hope?
Post by: balor123 on February 05, 2011, 11:16:03 AM
Do you mean is there a hope of getting cured? My answer to that would be no. If you think you are going to be cured you are living under false hope.

I meant in the foreseeable future (10-20yrs). Or at least a decent treatment with drugs that aren't described as "best of the worst". It just seems like every other disease - even rare diseases - have news articles about potential cures or breakthroughs in treatments.

personally I think stem cell research is very promising

As alluded earlier, I think bioinformatics holds the answer to understanding. If that doesn't lead to a cure, then gene therapy might. I don't see how stem cells can help us other than to repair the damage done by this terrible disease. We can expect bioinformatics to help us in the range of 2020 - 2030 with gene therapy and stem cells maybe 2020 - 2040. In some ways the world moves remarkably fast. In others, very slowly.
Title: Re: Is there hope?
Post by: Carolina on February 05, 2011, 11:59:54 AM
Dear balor,

Well, of course there's always HOPE.

A lot depends on your event horizon  (when you want what you are hoping for to arrive).  If we're talking about hundreds of years, there is surely hope for lots of things.

Honestly, AI diseases aren't even fully understood, in terms of the mechanisms at work producing the problems.

There are so many AI disease, and as far as I know there isn't one that can be cured, or even stopped in its tracks.

Well, maybe rheumatoid arthritis can be slowed down.

Shoot, I have severe osteoarthritis, the most common disease in the world, crippling and life destroying with pain.  It isn't an AI condition.

And there's nothing for it, except relieving pain, and trying to keep the surrounding ligaments and muscles working, to support the sick joints.

I also have interstitial cystitis, which is an AI inflammation of the lining of the bladder.  There isn't a thing to do for it, except one drug which is considered useless by most experts, and I'm allergic to it anyway.

That said, conditions do improve and even go away, but that's very rare.   And no one understands why that sometimes happens, either.

Adjusting to a 'new' condition is very difficult, and each of us handles it in our own way.   Everyone here can give you ideas, and advice, and support.

Most of us go on a merry-go-round of tests and diagnoses (some times false) or NO diagnoses, which can be equally painful and disappointing.

In general, the public has no clue about AI diseases and some doctors are not only rather clueless, but impatient at having to deal with something that can't be solved in a 15 minute session.

I think however that most people with a chronic or terrible disease will tell you that the entire process requires patience, grace, and tolerance of the rest of the world's general ignorance.

We get bizarre and often contradictory advice, and misguided efforts to cheer us up or help us 'get over' ourselves!

I have recently come to the conclusion that my neurological problems are indeed related to my severely diseased neck and lower spine. The disease is osteoarthritis and it is damaging the nerves to my hands and feet and legs, and face, and causing constant unremitting pain.

There is NO pill or cure or treatment.   I will consider surgery, which I never thought I would, but surgery often makes things WORSE, never mind not helping the problems.

Most likely it will continue to worsen, how fast I don't know.   I've learned that doctors don't know either, so we have to be partners in figuring out what is best for me.

I hope this isn't too negative, balor, but honesty compels me to suggest that you look for easing your condition, and working with your health care professionals, educating them as needs be.

Keep us posted!

Kisses

Elaine

PS, knowing genetic causes hasn't produced many cures to date.  It is much harder than once thought to manipulate genes.  Our bodies are very very complicated, to say the least.




Title: Re: Is there hope?
Post by: One and only on February 05, 2011, 01:39:56 PM
All depends on your defination of HOPE,, if you think theres going to be a pill or liquid you can drink and wake up like you were before all this stuff started,, NO,, its a miserable DISEASE with NO CURE,, no sense sugar coating it,, if you have dry eyes and dry mouth,, and nothing else,, go outside,, scream to God,, THANK YOU,, and count your blessing,, for a lot of us with symptoms that are destroying our bodies day by day,, go outside and Just scream to God,, swear, do what ever you think is right,, break something,, go look at the bottles of pills you take to keep the beast at bay for a few hours,, and then say the word HOPE,, and see if it has any meaning,
Title: Re: Is there hope?
Post by: balor123 on February 05, 2011, 05:19:15 PM
Actually just hoping for a treatment. Something to keep it from getting worse. At least understanding so that I can better prepare my child(ren). No offense, but you're all a bunch of downers :) There is always hope, as long as smart interested people are getting resources. And genetics has produced a lot you may just not realize it. Diseases aren't cured overnight - I expect patience and tolerance will be needed. An explanation would be satisfying at the minimum even if nothing could be done with it.
Title: Re: Is there hope?
Post by: DragonflyC on February 05, 2011, 07:18:44 PM
Welcome, balor123!

Dr. Faustman is doing research with the potential to help Sjogren's: http://www.ncbi.nlm.nih.gov/pubmed/20601088 and http://www.faustmanlab.org/research/research_faq.html

Plaquenil (or the generic form) can slow the disease's progression.  It has minimal side effects.  The eye problems it can cause pretty much never happen at the low dose we tend to take and are rare even at high doses.

Evoxac also works well with minimal side effects.

Preservative-free eye drops help, too.  No side effects.

Fish oil supplements help.  No real side effects (esp. with the coated ones).

Prednisone is a "best of the worst," but taken at low doses for short periods of time, it can help keep AI disease in check without the serious, challenging, or long-term side effects experienced at higher doses or with longer term use.

So, it's tough, but there's hope and there are treatments.  Personally, I find a great deal of hope and promise in the grant-funded research reported in the Sjogren's Syndrome Foundation newsletters.

I also have to say that I don't think anyone here is being a downer.  When I read the responses on this thread, I saw lots of good information (much of it quite positive and uplifting).  You asked a question and received honest responses that reflected people's personal experiences and perspectives.  I think several of these responses are especially lovely and heartfelt, and all come from a desire to help.

Best wishes,
C.

Title: Re: Is there hope?
Post by: One and only on February 06, 2011, 08:39:24 AM
DNA,, well if it works, dont expect insurance to cover it, most of us are lucky if they cover generic aspirin
Title: Re: Is there hope?
Post by: DragonflyC on February 07, 2011, 09:46:37 AM
Dr. Robert Fox is another doctor worth following.  If you google his name and Sjogren's, you'll see a number of links. 

Here's the summary from his 2006 article "New Insights into the Pathogenesis and Treatment for SLE, Sjogren's Syndrome, and Related Disorders" (http://www.medscape.org/viewarticle/520057):

Compared with the dramatic successes for RA with biologic agents in the past decade, the results of new therapy for SLE and SS were somewhat disappointing. Available biologic therapies in trials have shown only modest success. It is likely that gene-array methods will help define subsets of patients with SS and SLE, leading to more individualized therapy and the ability to monitor therapeutic outcome. It is worth remembering in the ACR president's address in 1986 that the top 40 targets for RA therapy were listed and TNF was number 39. Thus, therapy for SLE and RA is likely to fall into several categories. Based on the complexity of genetic markers and gene-expression patterns, it is likely that each of these diseases (at a particular point in time) represents a series of subsets that will require a somewhat different therapy. The therapy may be a single agent or may require a combination of agents, such as those used in chemotherapy. However, at this year's ACR meeting, rheumatologists gained familiarity with the methods and terminology of gene arrays and genetic analysis.

Each year, we will be better able to discuss with molecular biologists (and with industry) our needs for improved diagnostic and prognostic monitoring. Also, we will be better able to define the pathways for drug uptake, mechanism of action, and metabolism. With these methods of gene arrays and genetic polymorphism, we will be able to analyze our successes and failures to either design new therapies or create combinations of existing agents.
Title: Re: Is there hope?
Post by: LizPetillo on February 07, 2011, 10:30:04 AM
No there is no hope.
There is no cure. 
The disease will just progress.
And there is no immediate sweet release of it by death.
We are the walking dead.  (if we are lucky enough to walk).

Sorry. 

Title: Re: Is there hope?
Post by: Nathan on February 07, 2011, 10:31:26 AM
I believe there is absolutely hope, but it is unrealistic to think there will ever be a "cure."
The only real option is total systemic b-cell destruction... and this happens in the case of bone marrow transplants. This is an absolutely drastic procedure though, and should (and is) only be used in severe, life-threatening AI disease.
Is it possible that there may be a more targeted approach in the future, absolutely, especially now that the pathogenesis of SjS is better understood, even more so now that the autoantigen has been positively identified.

I am a huge fan of Dr. Robert Fox's work and writings.
Title: Re: Is there hope?
Post by: CAT1962 on February 07, 2011, 10:47:31 AM
It's so "new", I wouldn't count on any "cure" in the near future. Even though it's been around, I mean, not too many know how to DX (hard to DX), and no real knowledge. Sorry to say that I am NOT going to the clinic here for the free tests. So no DNA for them from me. I don't have the horrible dry mouth, and do have tears. I don't need an "inconclusive" DX with clinic testing, while my blood work screams SSB. Too many swollen, numb lip horror stories.
Title: Re: Is there hope?
Post by: One and only on February 07, 2011, 12:10:12 PM
They can swab your mouth for DNA,, they dont need to hack up your lip, and if you get the right guy, your lip wont be bad,, cant be any worse then the burning bodys a lot of us have,

and if you have SSB,, then I really dont think you need a biopsy,

Liz is right,, were the walking dead, and shes also right when she says,, if you can walk,
Title: Re: Is there hope?
Post by: warmwaters on February 07, 2011, 04:44:47 PM
Is there hope?

For a cure in the short term (next 5 years?) - I doubt it. Over a longer period, I have hope for either treatments that help relieve symptoms, or help address the underlying causes. But we are so early in on the research - we don't know what the triggering mechanism(s) are, we don't know why there is such a variety of symptomology, we don't know what the system and chemical mechanisms are (and so on). Each of these are important areas for research, and there's a need to get this research funded.

There are some real challenges with that - while many of the autoimmune diseases cause people to have a dramatically reduced quality of life, they are may not be seen as important or as urgent in priority as life-threating diseases such as cancer. (Note: I know autoimmune problems can be life threating, I'm talking about perception by others here). So we need to get political and make the case for why the research should be funded, and a priority.

Is there hope?
Ok, you characterized some folks as downers - we do have a lot of people on this board dealing with constant chronic pain. Which can make things look a bit gloomy. But that's one of the things that we cherish here, that it's a safe place to talk when you're having a bad time.

Is there hope?
To have a slow onset of the disease, with mimimal symptoms? Yes. If it's caught early, and you get treatment, it may be that you will not have any serious problems for a very long time (I hope NEVER!!).

Is there hope?
Every single day of my life I choose to hope that today will be a decent day. There is a weird duality for me about this disease - I have to be brutally realistic about what my health is, and what I have to do to get through this, and every day I get up, do the best I can, and look for a way to improve the limited abilities I've got.

So for me there's always hope, though it's not how I would have defined it five years ago. But I choose to hope. I am modelling myself on some people I've met here, and out in the blogosphere who decide to be as happy as they can, to connect with others as well as they can, and just try to keep living.

So :-) many answers to your questions. I hope the very best for you, as well.
Title: Re: Is there hope?
Post by: CAT1962 on February 07, 2011, 05:02:14 PM
One and Only: have you had the lip BX done? I have only heard horrible stories. Also, the clinic here will only biopsy, no swabbing.  :-\
Title: Re: Is there hope?
Post by: DragonflyC on February 07, 2011, 06:22:13 PM
Cat192, I'm not 100% sure, but this is what I think OneandOnly means:

1. A lip biopsy isn't necessary for DNA testing; that only requires a swab.  The DNA testing would be for research into a cure, not necessarily diagnostic purposes at this point.

and

2. A lip biopsy shouldn't be necessary with symptoms and SS-B antibodies, which are specific to Sjogren's.  There isn't really a need for something as invasive as a biopsy (which, as you noted, can go wrong) if the blood work points in the direction of Sjogren's. 
Title: Re: Is there hope?
Post by: shortstuff on February 07, 2011, 06:31:58 PM
Dragonfly, I love you.  You always make me feel more optimistic. I'm not giving up hope.  Yet.  But I definitely think we need more awareness and money.  And I'm really sick of people saying stupid sh** like, "At least you don't have cancer!"  Thanks for that.  Very helpful.
Title: Re: Is there hope?
Post by: irish on February 07, 2011, 08:49:52 PM
I think that given the fact that Sjogrens was listed in my nursing disease book back in the early 60's and hardly talked about
until the last 5 years--as in 2005--that we will be having some new treatments coming down the pike.

I had known about the disease most of my adult life and never even had a clue that it was affecting me. Why?? Because all that was ever mentioned in the medical books for those many years was the dryness. I know a gal in town who was treated at the Mayo clinic for about 20 years or more for rheumatoid arthritis. In the past few years she found out that she was misdiagnosed and doesn't have RA-she has Sjogrens.

Science has solved the issues of many of the infectious diseases and now they are just getting started on the autoimmune. When I was in nurses training many of the people with autoimmune diseases died very soon. Now people are living longer after diagnosis and some are able to work.  Yes, they are not always comfortable all the time, but they are not dead. That in itself is a medical advance. Medicine has learned how to do some damage control with these diseases and they will continue to develop more ways to make life easier.

I don't think we are being downers either, we are just being realistic. The docs will find out more in the days to come. It may surprise you that some of the answers will come from research on other diseases that will cross over to the autoimmune disease. Cancer and allergy research provide a lot of knowledge that relates to the autoimmune system.

One of these days something will develop and life will be better, not for me but for my kids or grandchildren. From what I have read the recent interest in sjogrens is teaching us a lot about autoimmune diseases in general. I have even read that it is felt that sjogrens may be the beginning of all the autoimmune diseases.

It doesn't help to be angry about the situation as this is life and life holds no promises about anything. It is what it is. Irish
Title: Re: Is there hope?
Post by: season on February 07, 2011, 09:17:00 PM
I can only hope.

We all battle this every day and some of us are sicker than others, I can tell from reading their post. I sympathize with those that are hurting because I suffer too. I do hope there will be more to offer those with AI in the near future and I HOPE it is in the near future.

Someone correct me if I'm wrong-I heard on the news a few months back that someone with AIDS was completely cured and from listening to all the news reports from several years back, they reported there would never be a cure for AIDS.

I hope ........
Title: Re: Is there hope?
Post by: eyeamdry on February 07, 2011, 10:48:34 PM
Liz, I don't think I've ever disagreed with anyone as much as I do with you and your post here.  If I was brand new, I would cringe and probably go tuck the covers over my head and never come out.

I've only known I have SJS for four years or so, but likely many more years before diagnosis.  I don't think one thing you posted is the truth as I see it.  I realize that you are entitled to your own opinions.  But, death surely?  I had cancer diagnosis 6 months after my SJS diagnosis and I didn't even feel as dastardly with that diagnosis.  Am I the only one?
Title: Re: Is there hope?
Post by: harrigan on February 08, 2011, 12:21:33 AM
No Lucy  - you are not the only one!  I think you're spot on when you say that newly diagnosed people would be scared and depressed at reading that death was all there was to look forward to.

Realistically, we have to adjust our exectations and plans every day to how we feel, but if we always use our absolute bottom line, we will never feel or have hope.

Last yearI was diagnosed with RA.  In the space of 10 months I have tried 4 drugs and last week sarted anti-TNF treatment alongside MTX.  I am vey hopeful that this will slow the disease progress down.  I don't know why RA seems to get all the attention and range of treatments, but as time goes on, I expect these treatments will also develop and be used for other AI diseases too.

To anyone newly diagnosed, or struggling with a new aspect of their disease, I would say to give yourself time to accept what you have to, but still expect to lead as full a life as is possible.  I know I won't climb ay more mountains, but I intend walking along a lot more shores ad the view is still good from where I am.  XX Ailsa
Title: Re: Is there hope?
Post by: Meld256 on February 08, 2011, 12:43:45 AM
balor123,

Seems like you started an interesting thread!  ;)

As you can see, there are many different answers depending on what situation we are all in. Such as it is here, and I think it's great we have such diversity and everyone can feel comfortable giving their own opinion. That's why this forum is so wonderful.

I think warmwaters, irish and others had some good responses. For myself, I would only add:
There is always hope. I see you are a young man, and the thought of always having this could be overwhelming to me if I were much younger. Who's to say what medical breakthrough may happen in 5, or 10 or 20 years? I don't know. You may see a cure in your lifetime.

I certainly don't mean to sound negative in any way, but for me, personally, I am working toward enjoying my life as well as I can and trying to keep my symptoms at bay. I honestly don't have the energy to check all the research and keep up with it; that may sound lame but that's all I can do.

However, you may be a great person to push toward research. You may be someone who gets people in medical communities more interested and raises awareness. If so, more power to you and I bless you in those efforts!

Take care and keep posting your thoughts, ok? We always need to keep hope alive!
Melinda
Title: Re: Is there hope?
Post by: DragonflyC on February 08, 2011, 04:02:26 AM
I agree with Irish that the answers may come from research into something other than SJS, maybe something unrelated altogether or another AI condition. 

I'm especially hopeful about the Autoimmunity Centers for Excellence that are starting to pop up mostly at university hospitals (e.g., Yale, Duke, Stanford) to allow doctors from different specialties to work together.  I think looking at why our immune systems are misfiring rather than at diabetes, Sjogren's, lupus, etc. has real promise.

P.S. Shortstuff, Thanks!  Sending love back at you!
Title: Re: Is there hope?
Post by: gurs on February 08, 2011, 04:36:58 AM
Yeah, maybe they would find that Sjogrens is very serious...seem more Sjogrens having alot of neuro (CNS) issues just like MS..alot of Lupus people dont have this? My doc
said Sjogrens just as bad as SLE, which I can concur. I have both...lovely!!!

I guess we can never give up hope, but I dont forsee any major Sjogrens treatments in my lifetime.

We have to try the RA/SLE meds I guess.....

Gursie
Title: Re: Is there hope?
Post by: LizPetillo on February 08, 2011, 04:45:49 AM
And I'm really sick of people saying stupid sh** like, "At least you don't have cancer!" 
Amen to that!
"you don't look sick"
"at least you don't have cancer"
"you are exaggerating .. you aren't THAT sick"
"you aren't dying"

... etc etc etc
Title: Re: Is there hope?
Post by: Joe S. on February 08, 2011, 06:49:42 AM
Back in the mid 80's when I had my first encounter with AI diseases, AIDS was the main topic of discussion. Until the Researchers, Doctors, Lawyers and Politicians started getting AIDS, no one did much for the patients. Most were told to die in their hospital beds. A few wanted to die a home. Their friends and families started to look for alternatives to modern medicine, and they started to live longer. They networked via email and support groups like this and and people started to find what worked and more people got help.

The were stories of cures. The doctors that came up with them lost their license to practice medicine. They ended up going to other countries and opening up clinics to provide the cures for the right price. Some of the processes were simple some were complex and dangerous. The thing to remember is that cures were found but were not made available in the US. In the US it is now a managed death with expensive drugs to treat the symptoms.

When I first got Fibromyalgia in the 80's, my neuro told me that it was a disease whose medical history and symptoms list dates back to at least 1000 AD. He did not have a name to call it at that time because the world health organization was in the process of renaming it. No good solutions were available but people were starting to live longer with alternative rather than modern medical treatment. He suggested that I study herbs, Vitamins, Minerals and other non-traditional things to find a way to manage it.

I brought this information back to the chronic pain support group. The nurses that started the group that had fibro said they did not believe it and modern medicine would provide the solution. They died form modern medicine (3) and medical mistakes (1). The side effects of the medicines are what killed them.

The auto immune diseases have been know about for centuries. It has been left to the patient to find what works in most cases.

 Yes there is hope. Hope depends on you taking sovereignty back of over your health.
Title: Re: Is there hope?
Post by: ohiolady on February 08, 2011, 07:29:06 AM
I would just like to say there is hope!!!!!!!!!!!!!!!  I was very sick 4 years ago when I first began to have symptoms of Sjogrens.  I got hit hard and fast and the first year was terrible.  Though I still have a myriad of symptoms and problems, I have improved immensely.  My eyes were 0 and 2 on the Schirmers test and I could barely get through the day with the pain.  With treatment, I manage much better and don't think about them every minute.  My mouth was so dry, I could not swallow food and was plagued with ulcers and sores.  My tongue burned terribly.  My tongue no longer burns and I seldom get a sore in my mouth.  I use Evoxac but I have also started producing more saliva than in the beginning.  I don't know why but this is true for me.  I had crushing fatigue in the beginning and just got through the day and now I manage my fatigue with lifestyle changes.  Also, most of the time, I just don't have the crushing fatigue I had in the beginning.

I've had cancer and I have gastroparesis and life is not a bowl of cherries but I'm grateful for all the other areas I've improved.  I do hope new treatments will become available.  Personally, I choose to have HOPE.

Anna
Title: Re: Is there hope?
Post by: CAT1962 on February 08, 2011, 10:05:12 AM
Thanks, Dragonfly...it's hard to tell what someone is talking about when comments are everywhere. OMG..my nose itches today... 8)
Title: Re: Is there hope?
Post by: flutterfly on February 08, 2011, 11:48:45 AM
welcome sweets...

i hate ta be cynical here...but OH NOES here it cums...

my HOPE everyday is...
that i DON'T rage out on sum1 'cause i am just plain TIRED of actin'like everythin' my sh#t^storm throws @ me i CAN handle...'cause I CAN'T!   :o

now i respect the peeps that DO HAVE HOPE...but give it a few years! 

much luck on keepin' the hope alive!  but when u do feel like THE WALKIN DEAD...sumtimes yes ya end up HOPIN' 4 DEATH!

no offense just cynical me!

~*flutterfly...no filter ta use*~  :D
Title: Re: Is there hope?
Post by: One and only on February 08, 2011, 12:32:00 PM
Your not being cynical,, its how you feel,, mine came quick, waesnt caught in time, now i;m paying the price. its sad when you begin to thnk death is the only way out, No offense to anyone,, but like I said before,, if your getting by with the dry mouth and eyes,, feel blessed,, when you start to cough out stuff that looks like jello,, when your legs wont carry you,, your hands get purple and burn,, when you try to hide it all from your family,, you;ll see where me flutter and Liz are coming from
Title: Re: Is there hope?
Post by: Sha on February 08, 2011, 12:58:21 PM
My doc just gave me valium cuz hope is starting to go towards the darker corners of my brain ::)

Sha
Title: Re: Is there hope?
Post by: irish on February 08, 2011, 05:26:39 PM
sha, Be aware that valium can cause depression. I don't know if you are on an antidepressant, but if it was me I would want to take them instead of the valium. Valium will calm you down but the longer you take it the more it builds up in the blood stream and then you might get so that you don't even notice that the house is dirty, the dishes aren't washed, etc.

Just something to be aware of. Back in the 1960-70's many people got seriously addicted to valium and it is heck to get off of. There are other medications out there to help with mood. Irish
Title: Re: Is there hope?
Post by: Scottietottie on February 08, 2011, 05:37:20 PM
I was given Valium once and went and threw the bottle back at the doctor after about 3 days. It made me cry all the time and I have such a bad temper when I'm tearful!!  :)  x x
Title: Re: Is there hope?
Post by: Joe S. on February 08, 2011, 06:22:19 PM
I was put on 50mg Valium 5x per day. It did not slow me down. Just do not take too many of "mothers little helpers".
Title: Re: Is there hope?
Post by: Linda196 on February 08, 2011, 06:57:43 PM
You must have a fantastic tolerance to benzos, Joe, the maximun daily dose as far as most standard suppliers are concerned is 40 mg, although I have seen a total of 50 mg given as a one time dose as a substitute for general anaesthetic.
Title: Re: Is there hope?
Post by: Sha on February 08, 2011, 07:00:55 PM
Love that song joe! yeh, she said as needed (sparingly). Don't know what the prescription is or how many she gave me...i will just like knowing i have em in case i need to relax a bit when things start becoming overwhelming!

Those of you who know me, knows I have a lot on my plate right now, work in an active job, which I love, and have kiddos who have had their own health issues who usually come first!

Irish, I doubt my anal hubby will let me forget if there's things piling up! He is a clean freak!LOL

Sha  :-* who's hoping that mother's little helpers keep the stress at bay when need be! :D
Title: Re: Is there hope?
Post by: eyeamdry on February 08, 2011, 07:17:51 PM
How does one determine if they are the having the disease(s) the worst, or worse than anyone else?  Is it because we come here and say so?
I would never be so arrogant as to put myself in the high part of the list of "how I believe I have it the worst, or almost the worst..as anyone else."
But, how does anyone else know that I am not the worst on the forum?  Does a person just assume they are almost as bad as most?

Am I making sense here?  There is no way to measure just how bad we are.  Most of us probably feel pretty bad at least most of the time.  I guess some of it may be as simple as to how we were brought up.  If we had a rugged childhood (can be read any way you like) perhaps one can handle more illness and difficult situations than others?  If someone was brought up with a proverbial silver spoon in their mouth, perhaps it is harder for them to adapt to illness.  I just see on here that most think they are ready to die.  No doubt someone will die as many people as there are on here and soon, but not necessarily of Sjogrens.
I'd say a car accident.  There have been a lot of people killed recently in icy road crashes. 

I do not have the answer, but I wonder how we measure illness. 
Title: Re: Is there hope?
Post by: shortstuff on February 08, 2011, 07:31:15 PM
Eye, I am with you on that.  How do you measure your pain relative to another's?  My OB told me I was being a wimp when I gave birth to my first and pushed with no pain relief 2 hours.....but did she just have a higher pain tolerance?  Did she have better meds?  No one knows what it feels like to be in another person's body and so it would be impossible to really understand where another sufferer is coming from.  We can only hope to be in the same ballpark and hope through that "understanding" we have support through each other......

All I know is I have two sweet little ones and they are my reason for getting up each day and my reason to have hope. 
Title: Re: Is there hope?
Post by: Joe S. on February 08, 2011, 07:56:43 PM
Sha, please find a better looking picture.
Title: Re: Is there hope?
Post by: Meld256 on February 09, 2011, 01:28:01 AM
Lucy,

I don't think any of us know exactly what each of us really goes through, or what anything feels like to that particular person.

I have a story about my Dad; please bear with me.
He was always sure that whatever he felt, everyone else did too. Meaning he was always right, and you did what he told you. We were also taught to never, ever challenge this.  For example, he was always telling me to put my shoes on, my feet would get cold.  It infuriated him (for some reason) for me to go barefoot in the house (which I still love to do!) And so, he started the same demand with my kids. One day when my daughter and I were at Grandpa and Grandma's house, he told her to put her shoes on because her feet would be cold. She was 3 years old and had heard this many times before.

She looked directly at him and in her tiny little-girl voice said "Papaw, you don't know what MY feet feel like to me."  :D I hid my face, my mother laughed out loud, and my Dad actually said, "You know what? I guess you're right." I was amazed! One of my most favorite memories, oddly enough...just shows that we can't tell what any other person's experience is for them.
Take care,
Melinda
Title: Re: Is there hope?
Post by: Joe S. on February 09, 2011, 04:40:32 AM
Linda196,  That was after I had a bad reaction to the drugs the USAF gave me. When I got home I threw them away. Yes it was far above the normal dosage. I think that it was an attempt to OD me. One of many death attempts after I left the USAF in 1972. A hazard from my enlistment. 1983 brought 5 more attempts before the auto accident that left me paralyzed on my left side. The most recent was in 2008. Drugs, Gas, knives, bullets and vehicles. May you not live in interesting times.
Title: Re: Is there hope?
Post by: One and only on February 09, 2011, 05:01:20 AM
I hear ya Joe
Title: Re: Is there hope?
Post by: Joe S. on February 09, 2011, 07:34:56 AM
Thanks One and Only. Looks like a nice yard in the pic. I can not make out anything else.
Title: Re: Is there hope?
Post by: Sha on February 09, 2011, 08:45:41 AM
Joe~I try to put up a pic, but no matter what, IT SQUISHES ME and makes me look like a troll with no neck!!LOl The pic doesn't start out that way!

one and only's pic didn't start out that way either...i could even see his face when it was in the normal form....not squished!

How can I  make it NOT SQUISH ME?

sha who HOPES  not to be squished in a picture, hurts my joints and neck....reminds me of one of the kids I worked with that had a kids screaming across the room saying "HE'S SQUISHING ME!" The teacher had no clue what was happening,  but, I looked at the kid i worked with and said "Are you squishing him with your fingers?" You know when ya hold  your thumb up and index finger, look through them, and close your fingers in a pinching motion....like you are squishing the person's head!!?? LOL the other kid should have had a 1-1 para also, but i still remember the teacher's face....she was shocked that was what it was over....it had been going on for an hour (i was only with the squisher for 4 hours out of the day, and this happened before i got there). Sorry for the long story, though it would make ya laugh!!
Title: Re: Is there hope?
Post by: Joe S. on February 09, 2011, 11:36:17 AM
The image of Jan and I is also squished a bit. Thy to use a square pic with a JPG format.
Title: Re: Is there hope?
Post by: One and only on February 09, 2011, 03:14:36 PM
Thanks One and Only. Looks like a nice yard in the pic. I can not make out anything else.
supposed to be me in my Steeler Stuff,, but its not good,, maybe change the format,, it is a big yard,, to much for me to mow anymore, and I used to love to get up on saturday mornings, spend the whole day out there and make it look like a golf course,, now I dont even care,,
Title: Re: Is there hope?
Post by: Joe S. on February 09, 2011, 03:31:15 PM
Sha, looks much better.

One and Only, I know what you mean. We moved to a house with a postage stamp yard and it is still too much to mow.

To get this back on track, Dr. Who says, "Where there is life and breath, there is hope". I like that concept because the other is not an option.
Title: Re: Is there hope?
Post by: One and only on February 10, 2011, 06:51:37 AM
Sha, looks much better.

One and Only, I know what you mean. We moved to a house with a postage stamp yard and it is still too much to mow.

To get this back on track, Dr. Who says, "Where there is life and breath, there is hope". I like that concept because the other is not an option.
Sometimes the other option seems like a release from everything Joe, life and breath almost mean nothing when thats all your doing, becasue your body wont let you do anything else,
Title: Re: Is there hope?
Post by: flutterfly on February 10, 2011, 08:12:48 AM
yups ta the max on that 1!!!   :D

Title: Re: Is there hope?
Post by: Joe S. on February 10, 2011, 10:57:44 AM
I know what you mean,, one and only. I try to keep positive attitude and out look. Some days it is difficult to get into a positive frame of mind.
Title: Re: Is there hope?
Post by: balor123 on February 18, 2011, 04:18:19 PM
I have finally found evidence that there is hope! Check out the patent Prevention of primary sjogren' s Syndrome by ICA69 deficiency (http://www.google.com/patents/about?id=v5moAAAAEBAJ&dq=Prevention+of+primary+sjogren'+s+Syndrome+by+ICA69+deficiency).
Title: Re: Is there hope?
Post by: Meld256 on February 18, 2011, 07:50:50 PM
balor,

Thanks for posting the link. I read the majority of the article; very interesting.  I wonder what's happened with that information since 2008? (more research...)

I believe this shows there are studies being done, and yes, there is hope.  There is always hope!  :)
Title: Re: Is there hope?
Post by: balor123 on February 18, 2011, 08:25:55 PM
A little more searching and I found this post (http://sjogrensworld.org/forums/index.php?topic=6133.60). Looks like there was lack of funding. Well, back to no hope :P
Title: Re: Is there hope?
Post by: Meld256 on February 20, 2011, 09:59:58 AM
balor,

Well, I read the entire earlier post from 2008. Rather frustrating...but thanks for passing it along anyway! I get the feeling this type of thing has happened more than this one time.

There still is always hope! Hope of more research, hope for a cause, hope of better quality of life for all of us.

Personally, (and again, everyone is different) I try to work on what a wise person here stated (I think it was Irish) that we need to "accept, adapt and persevere".  Those three small words encompass a huge amount of emotional work for me!

Accept: That's a big one! To accept that I have this annoying, frustrating condition that I may always have. That I am not the same person I was...my entire life has changed. To grieve over the person and I used to be and learn to like the new one. I've worked on this about 18 months and still may have a bit of work to do. It takes time...

Adapt: Also, a huge feat. Adapting to my limitations has been difficult, but not impossible.  I look at everything differently because I have no other choice. But I am learning to adapt in ways that I am proud of.  Adapting does not mean giving up; adapting means learning to live a happy and productive life in spite of the issues. To know that I'm still the same person really, I'm just a different version of that person and it's ok.

Persevere: Sometimes that means as we say here, to just "keep on keeping on". Days that we feel depressed and/or angry, we just keep going. We find intestinal fortitude to go on for today; we vent here on the forum, we reach out if needed or hide ourselves away for a day. For you, it may mean keep on looking for more research and to never stop. We are all different, and yet we deal with many of the same problems.
I've really rambled on...sorry. I pray that you are still able to see hope for the future. Keep posting and we will all be here if you need us! ;)
Melinda
Title: Re: Is there hope?
Post by: balor123 on February 20, 2011, 10:34:12 PM
I was looking at the TOC for Gene Therapy for Autoimmune and Inflammatory Diseases. Apparently Sjogren's is a target for gene therapy. There is a section of this book dedicated to it.
Title: Re: Is there hope?
Post by: LizPetillo on February 21, 2011, 03:46:55 AM
Liz, I don't think I've ever disagreed with anyone as much as I do with you and your post here.  If I was brand new, I would cringe and probably go tuck the covers over my head and never come out.
I posted reality. 
There is no hope for a cure anytime in the near future.
The disease is progressive.  It only gets worse.
For many of us - Life with the disease SUCKS.  And it's scary.
Those are the facts. You are, of course, free to disagree with facts if you wish.
its sad when you begin to thnk death is the only way out,
I look forward to the sweet release of death. 
Quote
  you;ll see where me flutter and Liz are coming from
Thank you.
I got enough so called 'friends' here (outside the internet) not understanding and/or disagreeing with how I 'handle myself' or not liking the fact that I don't play Pollyanna but instead deal with reality ...

Title: Re: Is there hope?
Post by: Linda196 on February 21, 2011, 10:39:36 AM
Just as a point of interest, and possibly a reality check for newbies.....not every one is as severely affected, and there are occasions of improvement for some people.

In 2003, I was bedridden, with severe cardiac arrhythmia, no use of my right arm and leg, recurrent deep lesions of the mouth, pharynx and esophagus, advancing renal failure, corneal abrasions, and pain I won't even begin to try to describe. While in ICU, I received the sacrament of the sick not once but 3 times. I was advised "to put my affairs in order" by more than one doctor.

Slowly, with high doses of Prednisone, Imuran, Methotrexate and Plaquenil, in various combinations; physiotherapy; occupational therapy;  and a drastic change in lifestyle; I was able to reclaim a lot of my life.....not the professional, contributing to society, productive parts, but I'm able to look after myself, my husband and our home (with his help) and I've learned manage or tolerate, although not control, any pain.

My most heartfelt wish is that anyone facing these dire circumstances could have the same supportive, caring, and knowledgable people around them that I had and continue to have.
Title: Re: Is there hope?
Post by: seren on February 21, 2011, 12:03:54 PM

Absolutely WELL SAID Linda.  Sounds like you have been through heck and I am so glad you are able to enjoy your life again to some extent! :)  I think the moral here (in my opinion) is that it depends on your point of reference.  Don't get me wrong living with constant pain etc can seriously grind you down and then some.  However, I am of the opinion that there is always someone worse off and when you think it cant get any worse....it seriously CAN.

Therefore,  we just have to try and find some joy from somewhere and literally count our blessings!!!!  :)
Title: Re: Is there hope?
Post by: Meld256 on February 23, 2011, 10:53:16 PM
Hi seren,

Just wanted to add, I agree. Linda stated things better than I was attempting to... ;) (thank you, Linda)

In my rambling, I was trying to make the point also that yes, this disease can really stink but I would pray that we all can find some hope somehow.
Some days, finding joy can be tough, but we must look for happiness in something and as you say, count our blessings! As I said, I look at adapting not as giving up hope of improving, but for the mean time, to work with the changes I have and make the best life I can.
I wish you a blessed day,
Melinda