I have a question, maybe one that doesn't have an answer.
Do you have Sjogren's because your immune system is so weak, or, do you have a weak immune system because you have Sjogren's?
I wonder if all the sickness I have been through in the past few years is because I had sjogren's and didnt know it. I eat pretty healthy, work out regularly and I have always been in good shape. No one can ever understand why (including me) I am ALWAYS sick with something. If there is a virus to be had, I will catch it. I would like to think that there is a reason I have been so sick, that I was doing everything right and there was an underlying cause for my weakened immunity. Though it could be that I was doing something wrong and my weakened immune system allowed me to come down with and AID in my 20's.
So...which came first??
Kinda like the chicken or the egg thing,, so many theorys out there,,, might be a virus that sets it off,, some say and I dont belive it, Stress,, I dont think they have a clue what sets it off,, why doesnt my mother brother and sister have it,,, they have some health problems,, (my sister get a sore finger),, SIGH,, but my brother has had two heart attacks,,, so naturally I wonder at what point this dreaded non Dx of SS and the SFN decides to start playing with my heart,, if it does I hope its huge and over with quick,, I dont want another thing to think about if its just a teaser
Some people claim there is a genetic link to AI diseases, I think that it is something we are born with and then something triggers it into activity. For many people it is exposure to virus like Eppstein-Barr (mono) or something similair. I may have gotten it from exposure to Parvo virus. I worked as a Vet tech for many years and treated numerous cases of Parvo. I saw Parvo listed as one of the disease that can be a possible trigger, however, I did have a past titer for Eppstein-Barr as well. I don't have a genetic family history since I was adopted at the age of 2 and my birth mother has ignored all attempts of contact even when it was just requests for medical info. For me I really didn't start getting very sick until the birth of my second child, so the big trigger for me was the massive doses of hormones form pregnancy.
Well there you have it,, more ways to get it,,,, I think by nightfall we;ll have at least two pages on how we get it,,
Hi Kimmie,
I think its not the fact that your immune system is weak but that is it overactive. I hope I can explain this ok, but when we have sjogrens...our immune systems go into overdrive but it does not attack the things a normal system is supposed to attack like a virus or bad bacteria and other things that make us sick.
Instead it attacks our own bodies (moisture producing organs/glands) and leaves the other things to go on without any challenge to stop it so that is why we may catch more illnesses etc and take longer to heal than others.
This is also why we should not take anything to boost our immune systems as it will only work against us instead of helping us!
I hope this makes sense...maybe someone else will come along to explain a little better.
Clear as mud, right? ;D
I don't know, but I NEVER get sick. I don't get colds, flu, nuthin. My ANA is thru the roof, and of course, it could be the IVIG, but even before that, I stopped getting sick around age 40....except for this garbage, whatever it is called.
Inga
I've been like you for the past few years - hardly ever got any infections. However, I've had shingles recentlu, and now I'm bothered with a sore throat. I'm wondering if the Plaquenil is working, as it's supposed to dampen down the immune system. Just hope it doesn't dampen it too much.
KAthyx
Quote from: Katybarstool on September 07, 2010, 12:48:48 PM
Inga
I've been like you for the past few years - hardly ever got any infections. However, I've had shingles recentlu, and now I'm bothered with a sore throat. I'm wondering if the Plaquenil is working, as it's supposed to dampen down the immune system. Just hope it doesn't dampen it too much.
KAthyx
dam if you do dam if you dont,,, it all sucks
As I understand it our immune system is like the army of our body. If the army kills the enemy, YAY! Victory! If the army turns on us. OOPS! If the army just turns on, say, the navy, maybe theirs enough army guys to kill the enemy too. It's not the army being too small or too large, it's what the army chooses to attack. You know when your army is attacking home ground because you have symptoms. That's when you got to fight back against your own army with drugs. It can make you more sucetible to other diseases, but whatcha gonna do?
I'm another with a super-strong immune system.
I'm a high school teacher, but even so, I never get the things that are "going around." My immune system is so strong that it attacks germs, viruses, my thyroid, my salivary glands, my tear glands . . . it never quits!
Me, too. I never get sick (hope I didn't just jinx myself!)
That's exactly what I was thinking...that you all are jinxing yourselves.....lol...hope not! ;)
Just hope it doesnt attack the CNS,, then you got problems like you never knew existed,,,
For me I feel its like our AI system works back to front upside down or the wrong way about some how AI systems is confussed what causes it to be confussed I don't think anybody knows Ive read they don't fully understand how the immune system works properly them self by that I mean 100% how normal immune systems knows when there is a bug/flu virus that should not be there it attacks it. With us it attacks things that are suppose to be doing there part in our body and minding there own darn business when the immune system seems to thing oh gee there is an enemy lets attack.
bit like a bully in the alley that see somebody that is just minding there own business and gets attacked for no reason. This is the way I see it.
Well, I used not get the bugs very often, that was before Methotrexate of course. I used to actually feel better when there was a bug in the house, because it gave my immune system some kind of direction and it was already fired up and ready to go. I think it must be made clear that Plaquenil doesn't really affect our immune system as I understand it. From what I understand about Plaquenil and I could be wrong, but it works as a disease quieter. It slows the progression of the disease and somehow has a diminshing effect on AI diseases and the Docs have no idea why, however it does nothing to supress your immune system at all. This is why it is so widely prescibed, it has very few side effects and will not make you more suceptible to disease.
Now, with MTX it's a totally different story. You have to be extremely careful with any and all contangion, no more super immunity. Once you get what may be a common cold, you now have little or no immune system to fight it off, or what you do have still isn't functioning the way it should, it can take a long time to get well once you get sick.
I kind of look at our bodies as large computers, each systems with integrated, programmed tasks to run on a scheduled basis. Think of the immune system as sort of anti-virus program, the only thing is that it regognizes things like Windows, or finaincial programs, or Adobe or Internet Explorer as viruses and keeps trying to clean them out of the computer. Well I guess my joints would be Windows, my GI would be Explorer, etc, etc. My Anti-virus needs to be reprogrammed, the only problem is that no one in the world knows how to reprogram our our immune systems. I think that's the kind of stuff their are trying to with stem cell transplants in severe Lupus patients, or Lukemia patients. They nuke the immune system completely and then implant stem cells and hope the new one grows. It's very dangerous and the rejection rate is high. There is a new Lupus drug coming out, Benlysta, maybe it will work for us, too. Who knows?
What if there was a virus or "Bacteria" embedded in your Windows, IE, or Adobe and your anti-virus saw that it was there but it had no method of getting into the program to correct the problem. Your immune system would appear to be attacking your body.
My experience as a programmer and one of the hackers that brought down the DARPA Net backbone in the mid 70's says that this is possible on any computer. If I were to engineer a "virus" to produce this effect in cell structures, I would consider "L-form bacteria" as a model. Yes as a programmer I modeled a lot of my software by studying brain and neuro functioning of the human body. It gave me good models for Artificial Intelligence (AI). I also used these models to develop Sign-weighted, Phase Proportional computer logic for AI computer hardware.
Joe, that would assume that AI disease are virus based. I don't believe there's any evidence to support that theory at this time, although it does seem to be virus triggered. So perhaps it may be the anti-virus may be in some kind of loop still trying to eliminate the long ago terminated virus. We still would need to find away to either re-boot the anti-virus (immune system) or replace it without destroying the integrated systems involved. I know my analogy may not be the best, but I'm rolling with it.
Gerty, that new Lupus drug (Benlysta) was mentioned at the Sjogren's Syndrome Foundation conference this past spring; they hope it will also help SjS patients since both illnesses are in the same 'family.' They said it would be available in 3 years, so this is a ways down the road.
I'm like some of the others, I don't get sick anymore, ever, not even a cold, weird huh? (yeah yeah I have the jinxing bells going off in my head now).
I think everyone has answered this well but I want to add that alot of AI diseases run in families too, does anyone in your family have an AI disease? In my family my brother and my niece both have juvenile diabetes, a bunch of my aunts and my mom have hashimoto's. Not sure about anyone else.
@Puccini - funny you mentioned the birth of your second child. Exactly the same for me, after my 2nd child was born all of this started up. I have thought all this time it was because I got some kind of flu and then strep a couple months after she was born. I have thought this is what started it but maybe it was hormones from being pregnant the second time. I guess I'll never know, but something definitely triggered it!
At first they told me I had post-partum hypothyroiditis which 5 years later turned into hashimoto's and they were right but were missing the SJS thing too!
Cindi
Cmclien: my mom actually has been diagnosed with sjogrens, though they think it is secondary to "probable MS". She is negative for all the MS diagnostics, but has lots of symptoms.
I also started this after the birth of my second child. Between 6 and 12 months postpartum I came down with the flu, shingles three times, a stomach virus and developed an anaphylactic allergy to all shellfish! Now I have a million symptoms I won't even begin to list, but the most persistent by far is this dry cough. I am tired of being out of breath! I wonder if it's the hormones or the stress of baby #2.
I definitely jinxed myself when reading the Cold topic the other day. I thought to myself, "Funny, that. Since this mess started 2 years ago, I haven't had my usual allergies or so much as a sniffle. I had pneumonia, but regular colds and coughs passed me by. Hmm, nice to think my auto-immune system is doing me some actual GOOD!"
Lo and behold. Woke up next day with the sniffles and now I have a sore throat and swollen glands.
JINXED!
But seriously, I have always been mystified - and delighted, in a superstitious and cautious way - about my kids' robust good health. They never catch ANYTHING (knock wood), not even colds.
With my oldest, I thought it must be from her gaining immunity from me though breastfeeding. My second only nursed for 3 weeks, so I'm not sure that theory holds true. But maybe that early stuff (colustrum) did the trick? I caught everything going as a kid, so it's great to think it served a wonderful purpose.
Now, though I'm wondering if their super-strong immune systems will go to work on them, and cause Auto Immune Disease down the line.
Sheesh. You worry when they're sick, and worry when theyr're NOT sick!
Suzie
Kimmie, that's so crazy!!! I too developed a CRAZY allergy to shellfish. I mean anaphylactic as well. I couldn't resist this incredible stuffed portobello mushroom with imported parmesean and fresh crabmeat and bread crumbs from fresh baked bread that a friend baked. I had the tinest little bite, I mean barely enough to even taste and immediately my throat started to close. Thank God for double doses of Benedryl or I would've been in the hospital that night. Last Christmas, at a party, my husband had been chowing down on mussels in white wine sauce and came over and kissed me. Just a kiss and my lips started to tingle like they were on fire and even my mouth started to itch. He's a great kisser, but this is ridiculous! I had to run and wash my mouth with soap and water and wash out my mouth and take a benedryl. I too started getting symptoms when my second child was born. I often worry that my 7 year old may out it together that Mommy didn't get sick until Joey born. His brother is such a handful to at 3 years old and really sucks up my energy I really hope he doesn't put to much blame on his little brother, he already finds him to be such a pest as it is.
Here's something else crazy, my docs been considering having me go for a spinal to screen for MS, just in case.
No one in my family has AI. I started having asthma early in my 20's. My menopause also came early. I think for me at least, Stress has a lot to do with it.
Stress cause blood vessels to constrict, leading to insufficient delivery of nutrients and blood to extremities, brain, eyes, mouth, heart, the whole body. It can change body chemistry.
I feel like I am fight a battle with this disorder. Taking meds is just not an answer. I am going to try practicing Yoga or Tai GE and see if it can help me heal. I know there is a machine called "Resperate" which help you breath slower, deeper, and reduce blood pressure. I think a similar exercise should help us heal from this disorder.
Anyone else willing to try it with me?
Pegasus
I know blood pressure can be lowered by just thinking about it. A couple of times my GP has taken my BP and said "It's a bit on tghe high side - will you just sit still and not talk for a while and I'll take it again."
If I sit still and breathe slowly - it always goes down.
We have Sjogren's because our bodies immune identification system is mixed up to think that some of our own body components in the cells are foreign and need to be attacked. So our immune systems are over active fighting off it's self. Lesley