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Posted 1/27/2016 8:09 AM (GMT 0)
I don't understand why everyone always talks about "Flares" and remission periods! I have been sick for over eight months with no such thing as a remission.
I'm always in pain, always swollen and I can barely move or do anything everyday (expect maybe between the hours of 11am and 3pm and that also depends on if the fatigue doesn't get me first)

Most people with Lupus say they are worse in the mornings but my pain is way worse at night . It's actually excruciating at night and unbearable. Whereas my mornings are painful but less so.
Nothing seems to make it better and it's never ending.

So somebody please tell me how long these so called "flares" are suppose to last because I can't handle constantly feeling like this.
So maybe I don't really have Lupus?

Yes couchtater, I'm still in denial despite the overwhelming blood test results. Lol
Posted 1/27/2016 1:13 PM (GMT 0)
Are you taking Plaquenil? Have you tried a dose of prednisone? When I was going through the diagnosis period I took pred for 4 months and it was the only thing that calmed down the excruciating joint pains. I had relief for about 3 months after that. When the pains started again I went back to the pred and finally was diagnosed with SLE and started Plaquenil. I continued taking the pred as a "bridge" until the Plaquenil kicked in. Happy to report that I have been off the pred for 2 months and feel great, I hope I don't jinks myself with that statement! I will say that pred can cause other issues, for me it was insomnia, but it was the lesser of two evils. Best of luck to you in finding some type of relief.
Posted 1/28/2016 4:19 AM (GMT 0)
Lupus is so different among each and everyone of us. Some of us have worse cases versus others. Flares are affected by the medications you're taking and how long you've been on them. Remember, lupus is know as the disease with 1,000 faces cause no two patients will present the same.

I can totally relate to feeling as if you're never coming out of your flare. I've been flaring for year now. I'd say that during the past years my flares wax and wain with how sick I am. I've had lupus since I was 23 and I'll be 51 in February. It took my Dr's 13 years before the all agreed I had lupus and began to treat it. I truly believe this is why I'm so ill with my lupus. Of course, now I've added on many additional issues that are lupus related and non lupus related.

I truly believe that my days are very numbered now. My breathing and condition of my lungs have taken an EXTREME change that makes no sense at all. My family believes that the leukemia is now very active and it's killing me rather quickly. It doesn't matter what it is now, it's here and I'm rapidly declining.

I can say that keep fighting and pushing for the correct medications. You may find that once they get your combination correct your flares will stop and your lupus WILL BE QUIET. Don't give up, I know how frustrating it is. I truly do believe me, I've had good peaks and terrible valleys since 2004 and they were all worth. I learned many things as well as those who treat me and live with me.

Wishing you the best and less painful days and a remission really soon for you.

Hugs,
Barbara
Posted 1/28/2016 12:59 PM (GMT 0)
I used to feel the same way. I woke up in pain but as day went on, I could hardly walk and at night I could even pull up a bed sheet because of the widespread pain all over my body. Flares are different for everyone. My first one lasted 5 years with no relief. Finally we found the right meds for my body and it has caused my lupus to lay low. I still will flare that can last 1-2 weeks or occasionally a day or two but never more than that!

Please don't give up hope for this flare to end! Stay positive and listen to your body! That's one of the most important things!!
Posted 2/4/2016 8:26 AM (GMT 0)
I also took prednisone and it just made things wayyy worse! I woke up one day and my entire body had swelled up and I couldn't move so the relief for the 2 days just wasn't worth it.
I have been trying to stay positive but I have had a really hard time listening to all the "rest" and listen to your body stuff because I never was the "resting" type. I'm more of a go go go girl so this makes me feel completely useless, helpless and quite frankly "pathetic". I know that sounds horrible but I just hate being dependant on anyone and now I am. Yuk . I was quite mortified to hear that your "flare" lasted 5 years aimsgirl16! However, the fact that you are doing much better gives me some hope, so thank you for that.
And omg Barbara your story made me cry. Thank you for your kind words as well. Im also happy you seem to be surrounded by many friends and family who love you and I hope the surgery made things a bit better for you.
I'm hanging in there and fighting even though it's hard because I have 3 kids that NEED their Mom. 😪
Posted 2/4/2016 8:13 PM (GMT 0)
I was a go-go-go type person too. I rarely had a free moment. It took me getting laid-off to realize I'm not superwoman anymore. I couldn't keep up at work anymore.
Since I slowed down with my life I'm having less flares. There are some things that can take a backseat to your health.

Good luck.
Posted 2/4/2016 8:30 PM (GMT 0)
ursg8243,

I sounds as though you had quite an unusual reaction to the prednisone. What dosage did they have you on?

There are many other drugs you can be using to help control Lupus - prednisone is really just for inflammation. I think of our medications as being in "tiers".

1) Plaquenil
2) Prednsione
3) Imuran, Cellcept, MTX
4) IVIG, Benylsta

Is your Dr not offering anything besides Prednisone?
Posted 2/13/2016 3:28 AM (GMT 0)
Hi Lynnwood,

My new specialist has just put me on doxycycline for the swelling but there's not much else he can do for now because I refuse to suppress my immune system and all the other drugs you mention will do exactly that. Which is obviously the point of these treatments but I won't suppress it.
I know I sound like a stubborn idiot but I am convinced that my immune system has not gone "awry" as they keep insisting but rather is fighting something that they just don't see or understand yet.
I have finally accepted that I have Lupus (kind of?lol), but what caused it? Possibly Lyme disease? Or another type of bacteria?
I'm still waiting on those results.
If Lyme is a "spirocette" bacteria and it digs into your own cells, is it not logical that your immune system is trying to get it out? Therefore, in it's attempts at seeking out this foreign bacteria it damages the tissues infected by this foreign bacteria because they are kind of in the way?
I know it sounds like I'm off my rocker and many People (including doctors) look at me as if I'm speaking Jibberish but I really think my theory is much more logical than the whole premise that all of the sudden our immune systems have all gotten "confused" or gone "awry" somehow!
To that I keep saying what is more likely?...,that our white blood cells that have had only ONE job for billions of years is "confused"? Or that modern medicine which has only been around for merely a couple hundred years is "confused"?
Posted 2/13/2016 3:32 AM (GMT 0)
And btw couchtater that throwing lemons back thing was funny.
I used to hate that cliche about the lemons and lemonade thing.
I always tell people " look I've been making lemonade and manure now for so many years I'm getting sick of it, so can't life just throw something different for a change?" I don't know maybe throw some rotten apples and I'll make cider or something? Lol

Post Edited (ursg8243) : 2/12/2016 8:42:07 PM (GMT-7)

Posted 2/13/2016 3:59 AM (GMT 0)
Well, we on this forum are familiar with Lupus -- where the autoimmune system is hyperactive and needs to be suppressed. We don't know much about Lyme, and aren't prepared to discuss it.

I'm not sure how we can help you.
Best wishes.
Posted 2/13/2016 5:21 AM (GMT 0)
I'm sorry Lynnwood, I didn't mean to be disrespectful. Maybe I'm still in denial but I do appreciate all the advise and since I have been diagnosed with Lupus and not Lyme I'm probably in the right place. I guess it's been really hard for me to accept this disease for what it is. Sucky is all that comes to mind. I think that if I keep thinking it's "Curable" due to an infection, then I don't have to accept it for what it, do I? I'm sorry if I offended anyone but this is the only way I know how to deal with this right now and perhaps come to terms with it. I do thank you all for the encouragement And positive energy.
Posted 2/13/2016 4:14 PM (GMT 0)
No offense taken, just wasn't sure how to help you.

Lupus isn't necessarily a "horrible, non-curable, will lead to a miserable life" diagnosis. There are a number of treatments, and many people reach a stable point. In fact, some of us even reach a type of remission (for Lupus, they say the disease is "quiet").

I am one example of a "quiet" disease. I used to have miserable joint & muscle pains, burning joints, and a significant cognitive disorder. Mental testing showed a 15 point drop in IQ points, I couldn't remember what I was talking about by the end of the sentence, couldn't watch a 20-minute sitcom, didn't drive at all for 2-3 years, nasty stuff...all that and more from Lupus.

But by following my Drs directions, learning to listen to my body and take care of stress, etc, I am now back to almost normal. It can get better!
Posted 2/14/2016 5:27 PM (GMT 0)
Amen to that, Lynnwood. Mine has gone mostly quiet since I started my new medications. I still have photosensitivity issues, but I can protect myself with special clothing.

I was depressed and in denial for awhile, but I've come to the point I'm going to fight it with everything I can.
Posted 2/14/2016 6:29 PM (GMT 0)
Thank you for the encouragement. Makes me feel a bit better about all this 😀
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