Hi, I'm trying to understand this, hope someone out there can help me:
I understand that the the primary objective in treating Sjogren's is "managing the symptoms". However, if the disease is actually attacking our moisture glands shouldn't we target our efforts on stopping the attack?
If we only treat the appearing symptoms won't the disease just continue to wreak havoc on out system damaging our cells beyond repair?
You are quite correct but as to date there is no cure that is all you can do! Has your rheumatologist tried Pilocarpine? That might help to manage the oral and ocular symptoms.
Good thinking, Shira. But unfortunately no one has ever figured out how to do that! I know it might sound incredible in this day and age but the same goes for all auto-immune diseases. The immune system was one of the last systems medical science got to grips with, and its workings are still something of a mystery.
My personal belief is that scientists will only really understand this system, which is fundamental to all the workings of the human body, when they start to understand its nature as well as its functions. It all gets a bit mystical from that point, and the scientific community is well-known for its culture of ridicule. But then that didn't stop philosopher-physicists from branching into quantum theory a century ago - and they received a lot of put-downs from Newtonian physicists too. Those quantum theorists were the first to start realising that we don't actually understand the rules of the Universe at all, but we're often prevented from progressing further because we think we do. Unfortunately, most medical people are even more blinkered than those Newtonian physicists, so I don't think there'll be any major breakthrough on the immune system in our lifetime... well, certainly not in mine!
From what I understand the closest thing to stopping the attack is to take Prednisone to shut down the immune system. If so then shouldn't we all be on steroids as much as possible?
I tried Pilocarpine and had a very bad reaction to it: My right hand and arm swelled up and I had severe nausea, sweating and felt faint.
TBH no, shutting down the immune system to relieve the effects of something like Sjogrens opens up your whole body to a whole range of different infections, whether it's bacteria or viral (Prednisone side effects can cause immune system dysfunction similar to of AIDS and HIV, as well as a whole range of other side effects of taking steroids long term).
I'm suffering with this so badly I'm willing to trade it in for a whole other set of horrible symptoms at this point...besides, what are my my options? I'm unable to control my existing symptoms and I've been to 20 doctors to try and do so.
No. Steroids are only a very short-term response. Five or six days at most. The long-term side effects of steroids are terrible. Please believe me. I'm a former nurse and I have some knowledge of this.
Thank you for your warning Lily...I was told that if I receive steroids by injection the side effects are far more subdued and that the benefits can last me up to 4 months. Is this true?
Trust me, Shira - your Sjogrens symptoms are nothing compared to the life-long problems you'll suffer if you opt for long-term steroids. Short-term is fine, but don't let any doctors talk you into long-term steroid use. I've just buried a dear friend who got lured into long-term steroid use for RA. I can hardly begin to document the problems she suffered but they included amputation of one leg at at 60.
Please don't go there.
Lily
Probably, as the implication is that steroid use is short-term. Worth trying, but don't get hooked into a long-term cycle.
Thanks for all your advice Lily, just feeling desperate here and freaked out that there's nothing I can do to stop the daily attack on my body from this disease.
Shira has the sweating and fainting continued if so I might be caused by Sjögren's. Look up Hyperhydrosis and POTS with Sjögren's in POTSUK!
Shira, you need to see an endrocrinologist to make sure there's nothing else going on here. If the results of that are negative, then I'm afraid you just have to take charge. I realise that might sound harsh, but all auto-immune conditions are about the mind taking over the body. You need to show your immune system that you're in charge, even if that means suffering more in the short term. Once again, I'm sorry if that sounds very bleak, but it's the only way forward. Treat your symptoms as they arise, but accept them. Accept yourself as you are. That's what this is about.
Hi Pam, those specific symptoms only happened that one time I tried Piocarpine. The hand and arm swelling seemed to me an allergic reaction to it.
What would I have an endocrinologist test me for?
Well, you've described all kinds of symptoms, and that's the only constructive thing I can think of. Once again, harsh as this might seem, I think you're going to have to get yourself tested for all possibilities and if that doesn't turn anything up, then knuckle down and cope with your symptoms. There's no magic bullet for Sjogrens. Learning to live with it often offers the best solution - and I'm speaking as a fellow sufferer.
Lily- do you find stress plays a role in flare-ups and that relaxation can induce remissions?
Yes, totally. You're on the right tack there. Stay with it. I'm off to bed now - 1:40 am here. Good night!
Good night and thank you for all your help Lily!