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Life With Lupus

Catching a virus/ w systemic Lupus


#1

I’ve been working my first viral illness since being diagnosed with Lupus. Normally I have mild nausea, joint pain, headaches and fatigue. When I came down with this virus my headaches became debilitating, my intestines felt as though they were about to explode, I had severe stomach pain, etc. Basically, I thought I was going to die. I take Plaquenil and Imuran (immunosuppressant ). Stopped the Imuran during the illness, because the last thing I needed was a compromised immune system at that time. Wow! That was an eye opener.


#2

all I can tell you if you've got organ involvement becareful with imuran, I don't know why but for me it gave me some really horrible infections even if it was just a bug to start with it always turned into a massive infections requiring hospitalization and transfusions, I don't take it anymore and haven't had a bad infection since, you have to keep in mind everybody's lupus is different, and everyone reacts differently to medications.


#3

quick question?? what Rx medicines can they perscribe for Lupus fatigue?? am on the Plaqunil--quit the predisone, while back--just wondered is there anything they can give you to help with fatigue...any thoughts??


#4

From what I’ve read, no medicine available now is able to treat the fatigue. FYI: I quit taking the Imuran. It’s beginning to dawn on me that I may have trouble taking immunosuppressants. Back to Plaquenil, and no other drug. Hope for the best, and hope I don’t develop organ involvement.


#5

The only drug I've tried for fatigue is NuVigil, its usually given to people who work the graveyard shift, which I did, it didn't help all that much for the fatigue, (it did raise my blood pressure and make my heart pound though), I have high blood pressure and heart valve damage. I know the times I was on prednisone I felt like I could do anything, but when I stopped it was a huge crash no energy that would last for days. Fatigue is just a normal part of having lupus, I've learned to pace myself, and do things on my timetable. The hardest thing for me still is accepting that I'm not the energizer bunny anymore, I can't do all the heavy cleaning in a day, its more like a week, also if I know I'm going out or doing something special I will rest up and nap like 3 or 4 days before the event, I can't count the number of times I've over estimated my ability and energy levels only to wind up in trouble. I've had lupus a very long time before they came up with a lot of the medications they have now, I think the biggest reason for the organ damage is first they didn't really know how to treat it it was discovered I had lupus cells in my liver by then I had been pretty sick for probably 5 years before they diagnosed me, and secondly the medications themselves can be dangerous to your overall health as I've had to learn over time, and almost all meds go through the liver, I no longer take any medications for my lupus or other problems, it works for me for now. I hope you continue to do well and never have to deal with multiple organ damage for me that and the fatigue are the worst part of the lupus for me.


#6

MM,

Ive been there! Yes, you feel like you’re going to die…but here we are. :slight_smile: Takes a while for bugs to pass having lupus.


#7

Also took nuvigil. Gave me more energy, but even on half couldn’t sleep. When I finally went off, slept for 24 hours with bathroom breaks, and most of the next day too.
Took me 8 years to get diagnosed in the late '80’s. Viruses are very hard to shake with lupus. I wash my hands a lot after being out of my house, try not to touch my eyes or mouth, and get vaccines. I had a stomach virus after flying this fall; I think it was eating the peanuts without washing my hands. I got very sick. But even as a child, I had horrible colds and was bedridden for a couple weeks, and my siblings ran around and played while sick. If you get a cold, take coldeze, it’s full of zinc and really helps.


#8

Hi again, Mtn Mama,

I've a flu and/or chest cold for the past week and it's finally starting to GO on second week. So, I haven't had it** for long BUT for 2 nights straight, I coughed non-stop, and I mean **non-stop.** I finally fell asleep in the mid-morning. The problem was (still is:) an intense itching in my throat that I can't get to go away. Which still wouldn't be a big deal if I hadn't coughed for just about every minute, for about 18 hrs straight. Brutal in it's own way, as I coughed so hard I lost control of the ability to stop, and would end up sounding like Henry the VIII, wheezing on a chicken bone. Was afraid I' cough so hard that one of my eyeballs would fall out, lol. Well, that' how it felt!

Chest was also so darned congested I feared it was pneumonia for 3-4 days. Had it last year too. Just like you said, everything felt worse, more intense. I honestly think you are right and auto-immune illnesses make normal illnesses into monsters. I don't know why, especially as I'm starting to shed it in the second week, so immune system can't be that bad??

I wish I could give you a definitive answer, Mtn Mom, as it shouldn't be asking too much to understand what's happening to us. I hope you are feeling a lot better by now.


#9

Got my first 2 weeks ago. I totally understand. I really thought I was going to die too. Really. Die. I think my husband thought I was just using the expression off-handed. I wasn’t… I was sure it was over. Now, I’m fine again. Weird, isn’t it?

Oh, and for fatigue, I take extended release adderrall. It is pricey, and not covered by insurance because it’s an off-label use of the drug. It’s great. I take a small dose, 10 mg/day. It’s a Godsend.