Author Topic: Is there hope?  (Read 14288 times)

balor123

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Is there hope?
« 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?

Joe S.

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Re: Is there hope?
« Reply #1 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.
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anita

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Re: Is there hope?
« Reply #2 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.
« Last Edit: February 05, 2011, 10:31:51 AM by anita »
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Scottietottie

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Re: Is there hope?
« Reply #3 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  :)
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balor123

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Re: Is there hope?
« Reply #4 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.

Carolina

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Re: Is there hope?
« Reply #5 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.




« Last Edit: February 06, 2011, 06:08:20 AM by Carolina »
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One and only

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Re: Is there hope?
« Reply #6 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,

balor123

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Re: Is there hope?
« Reply #7 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.

DragonflyC

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Re: Is there hope?
« Reply #8 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.

« Last Edit: February 05, 2011, 07:47:25 PM by DragonflyC »

One and only

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Re: Is there hope?
« Reply #9 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

DragonflyC

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Re: Is there hope?
« Reply #10 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.

LizPetillo

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Re: Is there hope?
« Reply #11 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. 


Nathan

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Re: Is there hope?
« Reply #12 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.

CAT1962

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Re: Is there hope?
« Reply #13 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.

One and only

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Re: Is there hope?
« Reply #14 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,