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09/21/2011 11:04 AM

Lupus without medication?!?!

NotCertain
Posts: 2
New Member

Hi!

I just joined. I was diagnosed with Lupus in February of this year. I was hospitalized because my eyes were swollen and I had very bad headaches. The eyes part was a new thing for me - but before I would get a fever for about 2-3 weeks every winter in the past 7 years - thinking it was the flu or some other virus.

Apparently those qualified as flares.

I am not in denial that I have Lupus, but I just wonder sometimes. Do I really have to take medication for the rest of my life. I never experience any pain - I only would get a rash from sitting in the sun too long, but other than that I was perfectly well.

In the hospital I was first put on prednisone (which I came off of almost 2 months ago)I am also coming off of Methrotraxate and I take 400mg of plaquenil every day. I just think that it's too much. I have never felt as tired as I have been since being on the meds - it's almost like the benefits don't outweigh the side effects.

My doctor doesn't support me coming off of all medication, since she thinks my symptoms could get worse and attack vital organs - but I am an optimist and think that if I watch out for the winters I should be fine...

Have any of you experienced a change in your symptoms - or are they pretty much the same, but just more or less severe?

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09/21/2011 11:31 AM
redhairali
redhairali  
Posts: 3751
Group Leader

Hi and welcome to the group. I am like you, I almost never have any real pain. At least not the long acting pain like many of the members here. If the only med you will be on is Plaqunil, I would agree with your doctor. It does even everything out and while we may need to bump up other meds once in a while the plaquinal helps to keep you steady. If you do go off, you could go in a major flare that is hard to recover from. (Been there, done that)

I just think it is hard to see how it helps you until you go off and feel like crap all the time. Of course this is me and you need to do what is right for you. I hope you visit us often.

Alison


09/21/2011 01:40 PM
mumeva
mumeva  
Posts: 6160
Group Leader
I'm an Advocate

Hi and welcome to this great support site. I do have quite a bit of pain in different areas......some days not as much. I went from having just discoid Lupus to Central Nervous System Vasculitis Lupus.....so mine did progress over the years so now I am taking heavy duty medications....I need these medications to keep me from having more brain hemorrhages...but not all of us are like that. I would say if yours is very mild than maybe just being on plaquenil is all you need....were all different in the severity of this illness. Anytime you feel like posting please feel free....hope to see you on here often.

Eva


09/21/2011 01:48 PM
Pandora74
Pandora74  
Posts: 1985
Senior Member
I'm an Advocate

Hi NotCertain, I think this is a question that many of us ask ourselves. When you read some of the serious side effects that the meds can cause you wonder if it is worse to take the meds and deal with the possible side effects or take your chances with the disease itself. When I was first diagnosed I struggled with it being a life long problem and something that would require lots of doctors appts. I was diagnosed with both Lupus and Sjogrens and I got several opinions and then I went to the Cleveland Clinic and they did the most thorough exam of all the Rheumys that I have seen. It is their opinion that I might be looking at more of a Primary Neuro-Sjogrens and possible no Lupus at all. He explained to me that doctors are to quick to suppress the patients immune system and use high doses of Prednisone when his opinion is that you save the drugs until the disease progresses and begins to effect vital organs. If your problem is more pain and musculoskeletal problems then you need to treat that and you can do that without immunosuppression. He gave me another way to look at all of this and it was new to me and I wasn't sure how to feel about it. So I haven't been immunosuppressed since about the first week of August and so I haven't felt well but my issues are mostly pain related and I haven't seen my pain specialist since late July and I see him next week so adjusting pain meds is going to be my biggest concern right now. I think this is an individual choice and as long as you make an educated choice and one you feel comfortable with then I think that will be what is best for you. Each of us is unique in our symptoms and also in the way that we tolerate illness. Good luck and post whenever you have questions or concerns.

April


09/22/2011 10:36 AM
NotCertain
Posts: 2
New Member

Thanks everyone!

I feel like crap more now that I am on medication. But as you said, I have to figure out some stuff for myself.

It's good to hear about other cases, because you can't help but compare yourself.

It is just sad that still so many things even doctors don't understand.

I will have to find a doctor who is willing to stay with me and monitor me even while off of Plaquenil - so far no support from any doctors. I was told that I am out of my mind!!!

Post edited by: NotCertain, at: 09/22/2011 10:42 AM


09/26/2011 11:25 AM
JamieFran
 
Posts: 1
New Member

Dear NotCertain: It's true you have to figure some stuff out for yourself and I am not saying don't dig deeper into what may be causing your lupus pains. It's also true that there are many things that doctors do not yet understand. I also have lupus (SLE). I was diagnosed in 2002 at the Mayo Clinic in Scottsdale, Arizona. Now, although I know that my doctor was trying his best to "treat" my illness, I think something doctors often forget is how to treat the patient as an individual. It is impossible for them to know all about us and how we lead our lives unless of course, we share that with them. After much, and I mean MUCH troubles with the pain, fatigue, rashes, etc of having lupus I moved to Pennsylvania to live with my mother. I live in a small town called Telford which is in the Philadelphia suburbs, I guess. (it's southeastern Pennsylvania). I have found that here, because many of the people around here are believers in Christ, that the atmosphere has suited me well. I have found a peaceful place on earth in other words. My lupus went into remission even though I was hospitalized, in a coma and on a respirator in 2009 in Florida. I wanted to write to you because based on your posts it seemed to me that you were trying to get off your medications. I want to give you HOPE that through Jesus Christ, who died for our sins and still heals us today, that is possible. I am writing you truly for this reason only. Get HOPE through Jesus. His words can be found in the Bible, namely the new testament, though I would encourage you to read the old testament too just to get a picture of some of the things he references in the New Testament. I don't know you and I don't know if you believe in God, but if you have any belief in your heart that there is a God, I beg you please consider Jesus Christ as He is the Savior of the World. With many prayers for your finding your path to health,

your friend,

Jamie

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