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RUPUS

Hello...

Anyone ever hear of this? Rupus? Well, I'm a man and I've heard that women usually get lupus and it's rare that a man gets it.

I just got out of 3-day hospital stay getting i.v. steroids and pain medication today after having a hell of a flare up. It all started about 2 years ago after getting the flu really bad. My joints started becoming inflammed, one-by-one. Started in my thumbs of all places. Being a blues pianist who performed a great deal with various bands, this was troublesome. After a short while, all my joints became inflammed and I was referred to a rheumatologist. She put me on medrol and it magically disappeared. I had 2 years without any re-occurance so I thought that I was cured. Wrong.

This past December it came back. But this time, much worse. It not only affected my hands, but really nailed my knees. I couldn't walk, let alone get out of a chair. My doctor admitted me into the hospital to put the fire out with i.v. medrol. It worked and in 2 weeks, I was cured again. Wrong. 2 weeks ago, it came back once more and again ended up in the hospital. Following test after test, my doc gave me the diagnosis...Rupus. My ANA values were very high...I have a history of autoimmune disorders going back to my childhood. Had ITP. Also had a bout with pleuracy about 25 years ago. So with that, she made her diagnosis (it's the best she can do right now). I have just started taking Plaquinil and am weaning off of medrol.

So...anyone hear of Rupus?

Best regards to all.

Yes I have. It can be very common when you already have RA which is auto immune.  Then you can develop lupus and you end up with Rupus. 

I hope the plaquenil works for you and you start feeling better soon!!

I thought Rupus was a cute name people who have RA and lupus gave to
their condition. I didn't know it was an actual medical term!

Anyway, it sounds like it was caught quite early in it's progression so that's
one up in your favour. I hope you feel better soon.ElliotBear, I do not know much about Rupus, but welcome to the board.  Lots of good info here.

Hi Elliotbear,

I have Rhupus.  Actually, it's Mixed Connective Tissue Disease.  Lupus, Rheumatoid, Raynauds and Sjorgrens.  My doctor said it's fairly rare.  I guess you usually have one main Autoimmune like Lupus or RA and they can have some of the symptoms of another AI disease but rarely do people have more than one, like MCTD.

My ANA was 1/10240.  According to him that is extremely high.  I can tell you that I feel like crap, no energy with lots of hurting joints.  I'm on Prednisone and MTX, along with Nefedipin for the Raynauds.

I'm still in search of the right combo/amount of drugs.  I hope you find yours soon.  My doctor was going to add in Plequinil this time, but opted not to when he found out I have Sjorgrens.  He said Prednisone and MTX will be long term, and I have a lot going on in my body now.  If he uses up all of the drugs early on, I may be screwed later.  Who knows......this is all confusing/aggrivating/depressing....

yea i didnt know it was an actual medical term either... guess i havent gotten that far in transcription yet lol

Will this ever go away? I'm getting from the replies that I'm going to have this pain forever? What can anyone tell me about Plaquenil. Are there any bad side effects? I know what it says online...but those are all reports. Also, how long before I feel the effect?

Today wasn't that bad...knees hurt a little and my thumbs too. But now my wrists are starting to hurt a little as well. Considering the shape I was in when I entered the hospital on Wednesday, I'm doing okay. I'm just worried that the further I get from those i.v. steroids, it may come back.

Anyway, thanks for the welcome and thanks for all your posts. I'm a little bummed out about this...but that's life.

Best regards to all...

 

Hi Elliott,

From what I'm told, It doesn't go away and there is no cure.  The doctors treat the symptoms.  I guess once they find the right cocktail of drugs the pain may go away or at least you can tolerate it more.

Another reason the doctor was hesitant about Plequinil, my eye doctor doesn't want me going on it.  I have rather bad eyes already and he said it can effect your eyesight. 

Is there ever really good side effects from drugs, I think not.  It's a choice.  For me, I can't live without the drugs I take. 

Elliot, I know I was freaking out at first.  Not that I'm calm about it now, but they have upped my MTX and I'm getting a little relief.  I just want to be able to function.  I wish you luck.

Thanks for all the comments. One more question: does anyone know how long it takes for the Plaquenil to start working? I'm still taking medrol 8mg in the morning along with the Plaquenil. My doc doesn't want me to stop the steroids yet.

It's amazing how in the hospital, all the pain went away. I was getting i.v. medrol plus percocet. It's like I didn't have a problem at all. Big difference now. This really sucks. My left jaw is actually hurting now. What's up with that?

I have been taking plaquenil since Thanksgiving(about 5 months).  I didn't feel it was working til at least 8 weeks into it.  I feel it is working better now after 5 months too.  It does take time to kick so you have to be patient.  Something I am not! 

You really need to have your eyes checked every 6 months by an eye doctor.  I have had it done once.  Not a big deal but important.  I haven't noticed any side effects from taking it.

Good luck and keep us posted on your progress!

 

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