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View Full Version : Can Lupus be slowed or can we just manage symptoms?



nvsmom
09-19-2012, 09:12 AM
I'm new to this board and the world of Lupus. I'm in the process of pursuing a diagnosis for my symptoms so I am not yet sure if I have a rheumatic AI, although I have met 4 of the 11 diagnostic criteria. I have recently been diagnosed with celiac and Hashimoto's so there is a chance my symptoms are due to not fully managing those diseaes yet.... I guess I'm saying that I know I'm jumping the gun here, but would still love information and advice.

I was wondering if there are any treatments be it western, eastern, wholistic, natural, diet based, or exercise based that actually slows the progression of this disease? Are there ways to help prevent it from moving on to vital organs?

It seems to me that western medical treatment is more of a "management" thing. Treatment just seems to reduce the symptom severity, and possibly frequency. It appears as a very reactive thing rather than prevntative or proactive...

I'm wondering what approach is usually taken by doctors, what it does, and how satisfied you are with that approach? And if there is anything that slows the disease, or causes a big remission, without serious side effects?

If I do have Lupus it is "mild"; I've had it for well over a decade with minimal serious problems (beyond ITP and splenectomy) besides fatigue and pains. I don't know if I'd bother with treatments at this point because I am (relatively) young and don't want to have drug induced problems in anothe 20 or so years. But if there is something that would slow the disease so I'd be very functional and relatively healthy in my 50-60's I would go for it.

Thank you for any info or advice you care to offer. I really want to know more. :)

tgal
09-19-2012, 08:45 PM
Let'st start with the holistic/natural/eastern etc. Those do not work. Those are what kill us because too often we get tired of the meds and look for alternative methods to deal with the disease and snake oil salesmen talk us into these things (especially on the net) and we end up dying. Look for "How to get banned from WHL" under the New Members section I think. There is a story about that in that thread.

Yes, for most people AI diseases can be controlled, at least for awhile. Basically there are periods of flares, or high disease activity, and remission or at least stability. Each person is different and the intensity of a persons disease plays a huge factor. When in a flare the doctors do treat the symptoms. That really is all there is. The good news is that when they treat them hard enough it can often get the inflammation under control so that a person can go back on maintenance meds (most people tend to stay on plaquenil).

Although I am no doctor and I can't give you medical advice I will tell you that, from my personal experience, leaving the disease untreated because "it isn't that bad" is not a good option. Just because you are not seeing external damage being done doesn't mean that internally the disease is not attacking your body. The best course of action is to find out if Lupus is what you have and, if so, get on top of it before it gets on top of you

nvsmom
09-19-2012, 09:24 PM
Mari - I appreciate you pointing out that thread to me. I did not want to imply that i wanted a snakoil salesman type of cure, but I can see now that my post did come across that way. I'm sorry about that! I really didn't mean for it to have that sort of tone. I was looking more for ideas as to what to expect (like the plaquenil you mentioned) or tips for things that can help (like fish oils aiding with inflammation somewhat).

I hear what you are saying about leaving it untreated. I have a bit of fear that if it is Lupus, what sort of damage has it done while I was ignoring symptoms for the past decade. I'm almost afraid to know.

Thanks for your response. :)

rob
09-20-2012, 02:56 AM
Hello Nicole,

Welcome to WHL. The typical meds we take to manage Lupus basically accomplish the goal of "slowing down" the disease for most people. Without Plaquenil, my immune system will basically run rampant and start destroying healthy tissue. If left unchecked, that damage could be irreversible, and possibly fatal. With proper management through the use of proven meds, Lupus has a much tougher time gaining a foothold and is far less likely to cause significant or permanent damage.

The prospect of being on a bunch of meds for the rest of your life basically sucks, and it scared the heck out of me when I was first diagnosed with SLE in 2004. However, until a cure is found, management of our symptoms and of the disease process with immunosupressant drugs and anti-inflammatories is the only viable option. It would be a dream come true if there was something people could take to prevent Lupus. But before you can think about prevention, you first need to know the cause, and unfortunately, that has not been discovered yet.

If it turns out that you do indeed have Lupus, with proper management and proven meds your goal of being functional and relatively healthy into your 50's and 60's (or even longer) is definitely an attainable goal. My mother was diagnosed with SLE 23 years ago. She is now 76 years old, and she leads a very active and fulfilling life. We have many members here who have successfully lived with SLE for even longer than that.

I certainly hope that you do not have Lupus, but I do hope you find some answers soon because not knowing can be more frightening than getting an actual diagnosis.

Rob

tgal
09-20-2012, 10:59 AM
Oh I am sorry I wasn't clear! I didn't think you were pushing them I pointed the thread out so you could read Susie's story! So often we want to be normal that we will try anything and often times that hurts us worse. You did nothing wrong and I am sorry I wasn't more clear!

steve.b
09-21-2012, 03:21 AM
the ideal situation is when our medication slows our immune system to a level where it stops attacking our healthy body parts...........
but still attacks our germs.

this is a delicate balance.
but it is possible with some people.


as the lupus changes we need to change our meds to compensate.

this balancing act is why it is so important to see your doctor regularly.

nvsmom
09-21-2012, 10:09 AM
Hello Nicole,

Welcome to WHL. The typical meds we take to manage Lupus basically accomplish the goal of "slowing down" the disease for most people. Without Plaquenil, my immune system will basically run rampant and start destroying healthy tissue. If left unchecked, that damage could be irreversible, and possibly fatal. With proper management through the use of proven meds, Lupus has a much tougher time gaining a foothold and is far less likely to cause significant or permanent damage.

The prospect of being on a bunch of meds for the rest of your life basically sucks, and it scared the heck out of me when I was first diagnosed with SLE in 2004. However, until a cure is found, management of our symptoms and of the disease process with immunosupressant drugs and anti-inflammatories is the only viable option. It would be a dream come true if there was something people could take to prevent Lupus. But before you can think about prevention, you first need to know the cause, and unfortunately, that has not been discovered yet.

If it turns out that you do indeed have Lupus, with proper management and proven meds your goal of being functional and relatively healthy into your 50's and 60's (or even longer) is definitely an attainable goal. My mother was diagnosed with SLE 23 years ago. She is now 76 years old, and she leads a very active and fulfilling life. We have many members here who have successfully lived with SLE for even longer than that.

I certainly hope that you do not have Lupus, but I do hope you find some answers soon because not knowing can be more frightening than getting an actual diagnosis.

Rob

Thanks Rob. :) I did some reading on Plaquenil so it's not quite as scary as I first thought. I hope I have guessed wrong that I have Lupus, but I have done the ANA, ENA, ESR, C3,C4, and Rf tests with my GP, and then he will refer me to a Rheumatologist... if needed, and we'll see what I need

And thanks for mentioning your mom. It's nice to hear that she is doing so well. :)


Oh I am sorry I wasn't clear! I didn't think you were pushing them I pointed the thread out so you could read Susie's story! So often we want to be normal that we will try anything and often times that hurts us worse. You did nothing wrong and I am sorry I wasn't more clear!

Mari - I think I'm a bit foggy lately. I'm just not typing my thoughts clearly enough. My fault. :) No worries. I can imagine how less scrupulous people could easily take advantage of those with chronic conditions... It's just a shame that they are out there.

Thanks.



the ideal situation is when our medication slows our immune system to a level where it stops attacking our healthy body parts...........
but still attacks our germs.

this is a delicate balance.
but it is possible with some people.


as the lupus changes we need to change our meds to compensate.

this balancing act is why it is so important to see your doctor regularly.

Thanks Steve. It sounds like Lupus patients have to check in with their doctors at least twice a year, is that about right? It will be hard to trust a doctor handling my care since they haven't done a good job yet. The only problem of mine they caught was ITP, and it would have been hard to miss since I was critical at the time. I self diagnosed and requested tests for my celiac and Hashimoto's. I've come to see my GP as someone to go to for antibiotics when a flu turns into bronchitis, pneumonia, or a sinus infection, so I only see him every year or so for that.

Oh well, I'll have to work on changing my thinking a bit. :)

SleepyInSeattle
09-21-2012, 04:59 PM
Ha - I hear ya!

I was always one of those people who saw my doctor once a year (or less) for the yearly "oil change and lube" - very low-maintenance.

Then these diseases struck - HOLY COW. I have never spent so much time in hospitals, offices, waiting rooms, and labs in my life!!!!!

The beginning was the worst - at this point, it's quarterly blood draws and check-ins with my Rheum (unless something comes up), about the same with my audiologist (I lost hearing due to the Lupus), and an eye doc every 6 months because of the Plaquenil. PLUS, of course, the usual check-in with my GP and a mammogram once a year. Phew!

I am just trying to get used to it. I want to stay as healthy as I can, and now I really rely on these people to help me do it. They can't help me if they have no information, so I try to be good about keeping my schedule of appointments. It's a drag, but I have people and animals I love that rely on me, so it really is important that I take care of myself. I try to think about doing all of it for them, and that motivates me a little more. I would want them to do the same.

I have learned to bring a BOOK with me, though...there's a lot of pointless waiting around, and that drives me NUTS if I don't have something productive to do.

Best of luck with things - it is an adjustment, but it's worth it to stay on top of this stuff. If you let it get away from you, it can make you AWFULLY sick.

nvsmom
09-21-2012, 06:49 PM
Ha - I hear ya!

I was always one of those people who saw my doctor once a year (or less) for the yearly "oil change and lube" - very low-maintenance.

Then these diseases struck - HOLY COW. I have never spent so much time in hospitals, offices, waiting rooms, and labs in my life!!!!!

The beginning was the worst - at this point, it's quarterly blood draws and check-ins with my Rheum (unless something comes up), about the same with my audiologist (I lost hearing due to the Lupus), and an eye doc every 6 months because of the Plaquenil. PLUS, of course, the usual check-in with my GP and a mammogram once a year. Phew!

I am just trying to get used to it. I want to stay as healthy as I can, and now I really rely on these people to help me do it. They can't help me if they have no information, so I try to be good about keeping my schedule of appointments. It's a drag, but I have people and animals I love that rely on me, so it really is important that I take care of myself. I try to think about doing all of it for them, and that motivates me a little more. I would want them to do the same.

I have learned to bring a BOOK with me, though...there's a lot of pointless waiting around, and that drives me NUTS if I don't have something productive to do.

Best of luck with things - it is an adjustment, but it's worth it to stay on top of this stuff. If you let it get away from you, it can make you AWFULLY sick.

Yes!... I was low maintenance! LOL My kids are already asking if we have to go to the doctor or labs AGAIN?? You know the whiny tone young kids can use. LOL Thanks for the advice. I will do my best to be a patient patient and just accept that doctors are actually there to help... and not just to irritate me.

rob
09-21-2012, 08:59 PM
It's good to hear back from you Nicole,

I hope your guess is wrong too. However things turn out, please know that you can come here to talk whenever you need to. There are folks here who have been where you are now, and you can talk to us whenever you need.

I may sound like an old hand at all of this, but there was a time when I was plenty scared by all of the tests and the uncertainty of what's next.

Rob

nvsmom
09-22-2012, 09:57 AM
Thanks Rob. I appreciate it. :-)

I jokingly call myself a hypochondriac to my husband because over the last few years I seem to get so many flu-like illnesses that never develop into anything, but after reading around here, I think perhaps it's not just imagined...although I now wish it was! LOL

Thanks all. Now I just have to sit back and patiently wait for test results and appointments to come up. My problems took decades to get here, so waiting a few months to get the ball rolling is reasonable. Easier said than done though, eh? I'm surprised how difficult it is to not obsess on it; getting AI's off my mind is proving to be hard... I even dreamed about them last night! LOL