I have a quick question.

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not again
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Date Joined Jun 2008
Total Posts : 264
   Posted 8/12/2009 4:46 PM (GMT -7)   
Hi everyone. iam from the lyme fourm. i have a friend with Lupus, and was just wondering what meds most people take. I know they are just on one drug, I cant remember the full name its Hydro something. I also know that it is a anti maleria med. Guess iam  just wondering if anti maleria drugs are common treatment for lupus, or if they should be on something else. I dont know much about lupus and am trying to learn more. Thanks for the help 

Lynnwood
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Date Joined May 2005
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   Posted 8/12/2009 5:21 PM (GMT -7)   
You are probably thinking of Plaquenil (hydroxychloroquine), an anti-malarial. It helps combat joint pain, inflammation, and swelling. It may prevent relapse and relieve skin inflammation, hair loss, mouth sores, fatigue, and joint pain caused by systemic lupus erythematosus.

It is almost always used to control lupus, although they have no idea how or why it helps.
Lynnwood, Lupus & Sjogren's Moderator
Life is far too important to be taken seriously. - Oscar Wilde, 1882


not again
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Date Joined Jun 2008
Total Posts : 264
   Posted 8/12/2009 5:27 PM (GMT -7)   
Thankyou for your response. I did not realize it was plaquenil. so do you think one med is fine? or do you need more?

Ginny
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Date Joined Feb 2003
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   Posted 8/13/2009 4:02 PM (GMT -7)   
It all depends on the person, what symptoms they have, etc. It's different for each person.  She might do fine on just Plaquenil, or she might need Prednisone or something added to it.  She won't know until she sees how the Plaq is working.
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content.Phillipians4:11-13
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 Co-Moderator for the Lupus and Fibromyalgia forums


not again
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Date Joined Jun 2008
Total Posts : 264
   Posted 8/13/2009 6:27 PM (GMT -7)   
is it common for your hands and feet to turn a purple color?, she also has some type of tissue disorder. not sure if that is common either. sorry for all the questions, just trying to learn more.

cured4real?
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Date Joined Dec 2005
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   Posted 8/13/2009 7:26 PM (GMT -7)   
Yes it can be, you need to find out if the doc checked it out. It can be due to something called reynauds, though my son got it due to low blood pressure and poor circulation when he was young. She may also have a form of connective tissue disease, which is sort of a broad diagnosis.

Doctors don't really know why some people's immune systems go whacko and they get autoimmune diseases like lupus and connective tissue disease, and some doctors believe that the various autoimmune diseases are simply different expressions of the same problems. People with one autoimmune disease may get others. Most doctors agree it is a hereditary condition in many cases, but things like disease and exposure to chemicals may trigger it to become active or worse. Some research is being done to explore the use of special antibiotics and other meds.

There are three things that make plaquenil a great med:
1. It has an immunosuppressant component-- it calms the immune system
2. It has an antibiotic/antimicrobial component--that is how it is effective against malaria
3. It is a TNF (tumor necrosis factor) inhibitor--TNF is the stuff that tends to cause cancer
Oh and 4, it is easily tolerated by most people and usually doesn't cause adverse side effects like prednisione and other meds

I take plaquenil and also get prednisone ( a steroid) in pills when things get bad, or I may get shots in my joints or muscle of steroids, though I prefer the pills. The pills must be taken on a strict schedule to avoid possibly dangerous consequences. Generally, you start at the maximum dose, then "taper" down taking less pills every week, or few days, however the prescription is written, until you are down to taking one or even a half a pill a day, then none. If I get worse, Rituxin will be the next thing they wll try, if I can handle it.

In my experience, you may get a bunch of steroids in the beginning until the plaquenil starts working (it takes months to a year to fully work) but then once the doctors get the disease under control you may get them periodically throughout the year. Each year I seem to need more steroids than the last and I've accumulated more annoying health issues.

Proper diet and avoidance of places with lots of sick people (kids can carry lots of infection) are important to stay healthy. Through time, usually one finds out that certain foods and activities are best avoided. However, life needs to be lived and we can't avoid everything.

The best thing is to use common sense. Keeping things clean, hand washing, and taking care to keep germs down is the best thing you can do for someone with autoimmune disease aside from being a good friend. I stay in alot and don't go out a whole lot, and my friends just understand that. But I do go out regularly, I try to be careful.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


not again
Regular Member


Date Joined Jun 2008
Total Posts : 264
   Posted 8/13/2009 7:42 PM (GMT -7)   
She said that her doctor has tested her for everything. and that she does have a connective tissue disorder. Some times she is balled up on the floor in pain, and has to stay in bed all day. She is really pale, and says that she cant even get a tan anymore. Thanks for you response.

PattyLatty
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Date Joined Mar 2006
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   Posted 8/14/2009 7:27 AM (GMT -7)   
You're a good friend for wanting to more about her illness. You'd be surprised at how many people would rather not deal with a sick friend, and as a result, slowly disappear. The upside is that having a chronic illness tells you who your true friends are. And it sounds like you are one of those. Your friend is lucky to have you.
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


not again
Regular Member


Date Joined Jun 2008
Total Posts : 264
   Posted 8/14/2009 7:32 AM (GMT -7)   
Thankyou for your kind words. Since I have been dealing with Lyme for the past 10 years, I guess I understand what she is going through.

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 8/14/2009 7:30 PM (GMT -7)   
I hope I helped some. I'm sorry she is so sick and in so much pain, and I hope she feels better, and you too. You are a good friend.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


not again
Regular Member


Date Joined Jun 2008
Total Posts : 264
   Posted 8/14/2009 7:36 PM (GMT -7)   
Thank you!! you did help. she seems to be doing better now than she was on the first med she was taking.( not sure what that was) I am guessing as with lyme that she should not be drinking. That is something she still does. Will that make the lupus worse?

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 8/15/2009 5:50 PM (GMT -7)   
Alot of drugs affect the liver, or don't work right with alcohol. many people have liver complications with their autoimmune disease too. And kidney problems. I'm the wrong one to ask about drinking as I can't at all, my liver is toast and I can go into liver failure or simply progress on to terminal liver disease. Also, diabetes and high blood sugar from steroids can make drinking not so fun, since alcohol is sugar. My mother has autoimmune problems and drinks wine occasionally but she is old enough that she's not trying to get another 40 years out of life either.

Excessive drinking or regular drinking is not good for anyone, healthy or sick, and also drinking due to depression or "trying to speed up to the end of life" is not good. I got sick when I was 28 and that cut short my party days, as did having kids. But it got so even the occasional evening out with friends and a few drinks with dinner was not worth the after effects. It could actually contribute to her pain and weakness. Some meds are real bad when mixed with alcohol and I always felt more pain after drinking, especially the headaches!

The doc would be the one to ask. Maybe others will post with better info. Its good you look out for her. To the extent you can center time with her around non-drinking activities,it might be good, you know cooking something special and eating healthy dinner watching movies. I drink a lot of water. It seems to make me feel better in the long run, flushes the meds through.

Oh,and drinking to manage pain is not good. There are good non-narcotic pain killers, ultram, and then the other milder narcotic ones for worse pain, she needs to have her pain dealt with properly.

Take care and have fun!



Take care
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


not again
Regular Member


Date Joined Jun 2008
Total Posts : 264
   Posted 8/15/2009 6:03 PM (GMT -7)   
Thankyou I hope you feel better soon. Iam sorry that your liver is so bad. I understand drinking is not good for any one. I too use to drink. But with lyme and my son I tend not to any more. It makes me feel worse. I just know she will not give it up yet. I have tried to explain it. But I guess you can not mke people change, Thank you so much for taking the time to talk to me. I first got sick at about 24. Its hard but you do what you have to do.
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