HOW ARE YOU FEELING

Replies:

• 
• by
  • lionsheartmojo
  on Apr. 13, 2007 at 10:19 PM
• I HAVE NO INSURANCE RIGHT NOW SO I AM NOT TAKING ANY MEDS OR REALLY EVEN GETTING TREATED FOR MY LUPUS, I TRY TO TAKE IT ONE DAY AT A TIME...
  
  I DO HAVE MY ADVAIR, BUT THATS IT, RIGHT NOW I AM NOT TAKING ANY OTHER MEDS. I WON'T TAKE ANY UNTIL ABSOLUTELY HAVE TO...
  WHEN I FEEL LIKE I JUST CAN'T DEAL WITHOUT THEM...
  
  MY WORST SYMPTOM, MY LUPUS HAS MANAGED TO WORK ON MY OPTIC MUSCLES,  THE BEST WAY TO DESCRIBE IT ARTHRITIS OF THE OPTIC  MUSCLES...CRAZY RIGHT, BUT WHEN  THIS HAPPENS I CAN HARDLY SEE AT ALL, EXAMPLE, THE SIGNS ON A BUS OR STREET SIGNS, CAN'T SEE THEM, AND GLASSES DON'T HELP, I HAVE TO HAVE EXTRA LIGHT ON MY COMPUTER KEYS ALL THE TIME OR I CAN'T SEE THEM HARDLY AT ALL...
  
  PEACE AND LUV 2 ALL
  MONICA

• 
• by
  • Starry_Morning
  on Apr. 14, 2007 at 5:24 AM
• Hubby was on prednisone, now he's on a different treatment (methotrexate?).  He also takes one to help him sleep at night (trazadone???).  Several for the pain, he's constantly searching for one that "works."  Right now he's on Hydrochloroquine.  Not sure if I'm spelling these right or if I even got the right drugs for the right symptoms!!  Without something, he is pretty much bedridden on bad days.  Even with pain pills, I have to open jars for him.  Lol.  He also takes Fluoxetine for depression, but that ain't doing much at this point.  He has a lot of side effects.  He has the shakes/tremors all the time, especially when sleeping.  He is moodier than ever, not sure if that's just depression kicking in.  Sometimes at night he has to get up several times to throw up, or just gag.  And of course he has lost a lot of hair.  Hopefully we will get this thing figured out one of these days and he won't have to take 10+ pills a day!!!

• 
• by
  • lionsheartmojo
  on Apr. 14, 2007 at 9:37 AM
• SOUNDS LIKE HE IS HAVING A HARD TIME OF THINGS...
  
  HOPEFULLY THEY WILL FIGURE THIS OUT IN THE NEAR FUTURE, AND THINGS WILL GET EASIER FOR EVERYONE...
  
  HE SHOULD BE GLAD HE HAS SOMEONE LIKE YOU IN HIS CORNER...
  
  PEACE AND LUV 2 ALL
  MONICA

• 
• by
  • Crystal07
  on Apr. 14, 2007 at 6:59 PM
• In reply to Starry Mornings reply:
  
  
  Sorry to hear that.. he sounds pretty bad off.. its been like 8 months til they got me living again normally if you call 15 drugs a day normal.. the methotrexate and plaquenil (hydroxycholorquine) are immune suppressants that are suppressing his immune system so they wont attack his joints as badly.  the steroids should help with the pain in the mean time.  Give me a shout.. I can totally empathize.. we are on many of the same things.. but it takes about 3-5 months for those immune suppressants to work so he may not feel great for awhile and most rhuematologists would keep him on some form of steroid until they started to work.. I would ask his dr about it. I know the side affects are horrible.. i know the methotrexate can cause hair loss and other liver probs.. but hang in there.. and send me any questions. I have done a lot of research on the drugs Im on and similar ones as well.  Hope the best for you and him. 
  Crystal

• 
• by
  • JeniLynn
  on Jun. 19, 2007 at 2:11 AM
• well today is not one of my good days.........
      My meds for the most part make me feel crappy but hey there medicine they work right? blah..
       I am finally off the mind altering drug lexapro that is an evil drug...i am still taking arava, plaquinel, atenenol, darvocet and when that doesnt do anything i take percocet i am also on an antibiotic right now try to and kill the infection in my mouth.. bastards!
    right now my chest is killing me of course the retarded people in california and washington state dont know how to help me, or what to do at all about it besides give me pain meds and send me on my way..
  
   sorry  for my rudeness im in pain and nothing is helping...but i wanted to share. thank you!

• 
• by
  • kjhart
  on Jul. 27, 2007 at 10:30 PM
• My meds are doing nothing for me right now.. I was taking zonagram, zenaflex, immuran, plaqunil, clonopin and diauldid for pain.. oh yeah and the 60mg of prednisone.. that is making me oh so mean..
  
  I recently have been released from our local hospital and f/u at UNC.. My rhuemy there wanted to keep me to do an angiogram.. they decided to wait until monday.. so i can get my kids cared for..
  
  from what i understand if they find mild to moderate vasculitis (which is what they suspect) i'll have to stay in pt for a couple of days, due some high dose iv steroids and perhaps iv cellcept..  they think i've become resistant to the immuran..
  
  i also understand the optic issues.. the lupus has destroyed 80% of my optic nerve on the left and 20 on the right.. and my optic muscle is overflexed and when everything flares, i can't see anything.. the other systems that are involved are joints (RA), raynauds, migraines, cerebrites, and now a work up for heart and lungs.. kj

• 
• by
  • passionoflove93
  on Oct. 8, 2007 at 10:27 PM
• I know what you are going through!!! The doctors in Colorado keep giving meds and sending me a way.  The lupus I have is in the brain and causes strokes.  Recently, my mouth and skin broke out.  Each day is a battle to get out of the bed.  The pain wakes me up during the night.  I take so much meds I can't keep track of them!

• 
• by
  • luvbeinhermom
  on Oct. 25, 2007 at 1:10 AM
• WOW! 
  So none of you have been in remission? Ever?!

• 
• by
  • JoJo103
  on Oct. 29, 2007 at 10:51 PM
• I went to Lupus center of excellence in Pittsburgh, Pa. None of the doctors here has been able to find the right medications, its been 2 years i have been battling lupus. it has affected my skin and bone marrow. The medications he put me on is not covered under my insurance. Any ideas?????? We live right outside of Youngstown, Ohio. So it is a drive for us and gets expensive going back and forth.  I can't even remember right now what the name of the medication is.  Right now i am on predisone, plaqinel, and celexa for depression. The doctor wants to get me off of predisone, because i have been on such high doses for 2 years. any suggestions let me know. I am up for anything I am tierd of battling this alone.  methotrexate is one new med he gave me and folic acid, does that sound right?

• 
• by
  • TRICIEPOP
  on Nov. 2, 2007 at 6:27 PM

• Hello ladies
  
  I swear I feel tired all the time granite I work like a dog. Last few weeks Ive had the blue I think I may have been alittle depressed. The home life was giving me the blues Well its friday and I say Whatever I am dead set on enjoying this weekend and not stressing out I have a play date on Sat for my daughter and later a play date with my man and I plan on getting some good rest.
  
  As faras my meds I take two predisone and some other preventitive medication that helps withthe arthrisit and stuff. The stupid Dr keep putting me on medications i was up to 11 till I was like I dont think he knows what hes doing and stopped taking the unecessary ones. Im currently looking for a new one.

  
  

  I guess I hate this time of year cause I always get the butterfly mask and Have to wear makeup cause i feel self councious about my face. but Its the sweelling and cracking of my joints I cant stand and that rhenouds ammonia (sp) that are my worst symtoms. and just being tired all the time I have to force myself up every morning or i will stay in bed all day. My appetite has gone down but I happy about that cause i had put on 30 lbs and now Ive loss 10, and my hair was falling out due to the medications but its growing back and pretty thick and healthy again. My man and the kids all like to brush it agian.
  
  I think I get depressed cause I get scared and I feel all alone.

  
  
  
  PATRICE TAMICA COATES

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