new to lupus need advice about meds..

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New Member

Date Joined Apr 2010
Total Posts : 12
   Posted 4/1/2010 1:55 PM (GMT -6)   
hi i am new, got my results today. i been telling doc. for a long long time now. i cant sleep! i feel like hell all day long, dead, drained, headaches, oh my latest complaint my knees are killing me, and the one complaint i hid to myself was, i cant remember things of 2 weeks ago, but i can remember my childhood. i finally told him with all the tears comming, he looks at me and says how are your emotions? ah, well emotions are fine, im terrifed that i am losing my mind....would you not be scared.?ive had type 2 diabetes for over a yr. now. and now lupus. i cried and i cried today, theres nothing left in me. doc put me on meds. for my vitamin d defieceny. 50,000iu, 2x's a week fer 10 weeks...ok started that today. nothing for my lupus. im sick of the pain in my knees. any one know of anything i can do at home, to help with the pain...i cant take aleve it makes me sick as a dog. i can however take ibporphen but not for long periods. yes i have a bad stomach on top of all this, and i take nexium for that. can i go crazy now? this is all too much for me to take him, btw, im a 44 w fe. but oh the joint pain. btw, one other stupid question, a friend told me with lupus i can not be out in the sun.. well the doc told me today to sit out and get me some sun. for the low vita. d. so you tell me. reminds me of a song...should i stay or should i go thanks

Regular Member

Date Joined Dec 2006
Total Posts : 185
   Posted 4/1/2010 2:02 PM (GMT -6)   
one of the lupus meds that helped me with the joint pain was plaquenil..worked like a charm for me.. i have low vit d as well and really cant be out in the sun but i do go out there for like 10 minutes at a time goes on you having lupus will incorporate itself into your life.. its difficult at first and your emotions will be all over the careful on the ibuprofen i have GERD and it upsets my stomach..currently i am going through a bad bought of panic disorders from my lupus not that its attacking my brain but its scaring me.. i was diagnosed in 2003 and i di fine for the first few years i started freaking out since before i went on cellcept..

come here kick, cry scream, laugh were here for you..
Female: 38 yrs/old DX: Lupus (dx:'03) MCTD, Raynaud's, Anxiety./panic disorder, GERD, Antithyroid antibodies, Lupus Cebritis, Lupus CNS, Lupus Pneumonitis and Stage 3 & 5 Lupus Nephritis. PRES ,Seizures, Photosensitivity since childhood, vasculitis, left thumb and toe amputated from raynauds, Sjogren's
Meds: cellcept, Plaquenil,Prednisone 10,Miracle mouthwash,bactrim, actonel, caltrate, Xanax, Darvocet, Xopenex inhaler, Xopenex Nebulizer, Spiriva, prevacid, aspirin 325mg, pantaprozole and carafate

Veteran Member

Date Joined Jun 2008
Total Posts : 1470
   Posted 4/1/2010 2:13 PM (GMT -6)   
Hi there. Welcome to HW! Sorry you are having problems. Was a rhuematologist the one who diagnosed you? If not, you need to see one. They are trained in handleing Autoimmune diseases such as Lupus. What are the symptoms that led to a lupus diagnosis? Plaquenil is generally what is first prescribed to help treat lupus but it depends on what all is going on!

New Member

Date Joined Apr 2010
Total Posts : 12
   Posted 4/1/2010 2:31 PM (GMT -6)   
just my regular doc./ internal medicine doc. blood test determined this. what i have showing as lupus is....the red butterfly facial rash(which at first yrs ago he told me was roscia), tired all the time , no energy, no sleeping good at night, depression, axiety, aching all i went in there a threw a fit finally i got results lol

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 4/1/2010 4:21 PM (GMT -6)   
you need a rhuemy who specializes in lupus. not treating lupus is kind of like not treating cancer stupid thought not quite as deadly until it attacks your organs. Your doctor needs some lessons in dealing with patients. I would insist on a referral. take pictures of your rashes and document everything. not all rheumys are lupus specialists so make sure you get one who is.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence

Veteran Member

Date Joined May 2005
Total Posts : 7725
   Posted 4/1/2010 7:59 PM (GMT -6)   
I have to agree with some of the others -- you really need to see a rheumotolgist who is interested in lupus - those are the drs who really *know* how to treat these diseases. A GP treating lupus is like a GP putting a filling in your teeth -- they may think they know a few basics but definitely don't have the training or the experience to back up what they say. That's why the advice you're getting from the GP doesn't match what you are finding in your research.

One way to find a Rheumy (if in the USA) is to check and locate a local chapter. The drs they list as being part of their advisory council are the local people interested in treating lupus. The Lupus Org won't give you specific recommendations for a dr, but by going to one of the local support meetings you can talk to people one on one after the meeting and get a feel for what is going on in your area.

In general, you should be treated by a 3-pronged approach. 1st - something like plaquenil or it's generic, an anti-malarial med that inhibits the progression of lupus; 2ond - something to treat the inflammation -- inflammation is what causes the pain, you need to treat the cause! For most of us with lupus, the first thing is to use prednisone to get the initial flare under control, then decrease prednisone and use other meds to inhibit lupus activity. And then, 3rd, if you still have pain, treat it with the most minor med possible. If you can take ibuprofen, always eat something with it (peanut butter on a cracker works for me).

Please keep in touch and let us know how it's going,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

New Member

Date Joined Apr 2010
Total Posts : 12
   Posted 4/3/2010 8:49 PM (GMT -6)   
i cannot for the life of me feel good at all.....after finding out i have lupus, hubby took me to the great smokey mtns. which is only an hr. from us, but we stayed in a cabin, hot tub, fireplace next to a small lake and did some fishing and r and r. the bed was awfulllll...i know i been complaining about joint pain in my knees, oh lord my poor knees...i got up this morning, i didnt think i was gonna be able to cope, or even move. so no sleep last night for me. so as the story goes needless to say, i did not stay tonight and i am back home. the pain is too much. my trip, was ruined....hubby is not pleased with me, i can tell.after reading other peoples ailments with lupus. i was like holy smoke, i got that, or ive had that ... my acid reflux, has been for yrs. and yrs. red face, ummm 7-8 yrs. sleepless nights 7-8 yrs. feeling awful a very long time, and tired all the time...ect. i make myself clean house and cook supper and even do laundry. this isnt me.ive always been a high strung gal, anxiety ha hes been my best friend since childhood...depression, is off and on.. my short term memory loss, last 2-3 yrs. im mad...mad at the doc, for not testing me sooner. mad, that i had to really show my temper to get the job done. devastated to know the results! BUT , NOW I KNOW , I AM NOT CRAZY, nor am i losing my mind. do you understand how it feels to really think you are losing your mind>? i read some of the posts here and the diagnosis at the bottom and what meds people are on, and im scared. one person i read is on 3 diff. kinds of pain killers! im like, asking , how do they function?? there is no way my hubby will stay with me and me a vegetable doped up and spaced out on pills....theres no way....cant say id blame him.we are 44. yes, he loves me...will i have a life>? we camp , swim, fish, work on our 2 farms, have cattle and hay, a huge garden, and now im told to stay out of the sun,.WHAT!!! these are the things i love to do...this  sucks. the lupus..i feel like a death sentence has been laid on me....
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