I’ve been diagnosed with Lupus very recently. My doctor is very thorough and I trust him implicitly. He has put me on Plaquenil. My mother is freaking out! She is convinced that the doctor is wrong and the meds will be worse for my body than “toughing it out”. That’s crazy, right?
Yes....it is mush better to be treated and experience life without pain than trying to tough it out. Flares can last for very long periods and leave you disabled at times. Side effects of medications outweigh how you function. Find support by asking your Dr. to talk with your mother about long term if left untreated and quality of life.
Is your Mom a doctor or another medical professional? What do you think is best for you? Does your Mom have Lupus?
I'm sure that your mom has your best interest at heart but you have to do what is best for you regardless of the opinions of others. You are living with a chronic disease with very few treatment options, do what's best for you and remember the opinions of others will not cure or worsen your disease.
Get ready for everyone to throw thier two cents in on what and what not to do now that you are sick. People will tell you…oh you just need rest or this will pass (like your mom said) tough it out. You should defenitley get a good doctor and listen to him but never be scared to get a second opinion. When I first got diagnosed they had me on 16 meds. I was taking meds to treat the side effects of other meds. Needless to say I am only on a few daily and more when I’m in a bad flare. Plaquenil really helps a lot of lupus patients so I would defenitley suggest listening to your Dr. Then after a few months if it hasn’t helped discuss it with your Dr. I know it is hard dealing with being sick and also dealing with know it all family members but you have to make the choices that are best for you and tell everyone else you appreciate thier input but they don’t have to live in your body. Best wishes and gentle hugs
The answers you have received are very thorough and I can add nothing more except to say prayers and gentle hugs are coming your way.
I went through the family opinions about taking meds, too....they thought it was dope and it would do more harm than good. It has been over 10 years since my SLE diagnosis and they are finally seeing that the meds have done something to help.
My heart and prayers are with you!
Does this drug upset your stomach as much as mine?
Listen to your Dr Lupus can cause a lot of problems in some cases death if not treated.
Thanks Ann for the article- good info
How old are you?
I am 37. My mom has been a nurse for 42 years. It has upset my stomach a little, but not too bad. At this point, I’m just so tired all the time, I can barely get home from work and get dinner done before I fall into bed. I’m hoping that will get better with time. Does it?
Thanks y’all for the responses.
Hi n welcome to the family of Living with Lupus!, we are here at anytime , whenever !!! LOG IN-smile. Keep in your mind that “your Health BELONG to YOU!”. Make your own decisions , and ask questions , find out about Lupus and get a support group at home and keep us here very close, well best wishes and my prayers go out to and for you…Enjoy…Beverly L.
We all know how much toughing it out we can handle. Take care of yourself as best you can and be thankful for a good doctor.
Beka, even though your Mom is a nurse doesn't mean she knows all there is to know about lupus. I say this with all due respect to your Mom, believe me. The thing is there are lots and lots of doctors who know nothing about lupus and there are rheumatologists who know very little about lupus. Believe me, I have had 3 now that don't know and one doctor took me off of plaquenil and told me I didn't have it and a couple of years later I got very, very sick and was left untreated for another 2 years until finally a doctor did another series of tests and there it was again. Anyhow, I lost a lot of my life because of doctors not knowing. I have one now that once again wants to take me off plaquenil but it isn't going to happen. I simply won't go to her anymore and let my family doctor do the tests and prescribing and if something comes up then I will pick a different doctor. You will learn more here then from anyone probably. The Lupus Foundation is a wealth of info too and you can write them and they will write you back. I wrote to them a few months ago explaining to them everything my current rheumy told me and what was going on with me. The woman wrote me a lengthy letter back and assured me that I was right and in a nice way said that my rheumy doesn't know what she is doing. Funny thing is that two other doctors here that I go to told me not to listen to her that she is a terrible doctor and not nice either. They also told me that there isn't a good one in this town so that means I will probably go to Chicago if I have to someday.
Best of luck to you!
Hey, I opted for the first month to do my own research on the treatment my rheumy suggested. Let me just say it was possibly the worst decision I ever made. Three days after my rheumy appt I ended up in the hospital with a really bad flare. I soon realized that “toughing it out” was not the best choice. Since then I’ve had to switch treatment meds quite a few times. I’d suggest you do what is best for you. Hope you feel better soon.
It is only a few decades since the word 'lupus' was almost like a death sentence- your mom may just be scared Now with better treatment programs you can live a full life I look at it like a chronic illness like diabetes
Beak, it’s different for everyone, as is the disease. I can only tell you that for me the fatigue has improved a lot. I am one of the biggest proponents you will ever meet for minimal medication and healthy diet and exercise. I am not however anti-medication, and I have been on Plaquenil for about three years now. Wait… uhh, four actually. I went through a recent financial crisis, and having no ccorners to cut, I reduced one med and tapered off another - that would Plaquenil. Why… well, I am at the point where my inflammatory markers drop and symptoms subside - remission, essentially. I was anyway. This med does more than most realize, and it’s slowly cumulative. It’s not until you stop that you get a clear picture of what it’s doing. I now have very clear memory of how bad my pain was before treatment. I also went back on Plaquenil after getting some assistance for it. I won’t be doing that again. Ever. Eyesight damage would be the only reason. Seriously, you couldn’t pay me. lol I am on a fairly low dose, but it is clearly necessary. Of the choices available, it is the easiest med to get along with too. It’s possible that your mother is simply fearful and in some level of denial about you being sick. She may need more updated info about this disease to calm her emotions over it. In any case, do what you need to in order to take care of yourself. Everyone else will just have to catch up and accept it.
Oh for the love… autocorrect got me. BEKA, not beak. Sorry about that.
I have SLE...and right now I am on nothing, I think there are periods of time that you need your meds...I was put on a high dose of prednisone for 2 and half years.1985...then they removed my spleen went into remission and I really have not had to go on prednisone till recently, just for a while...but the pain is unbearable so talk to your Dr....with your mother...I was on Plaqunil for about 6 months and then went off started feeling better...but it takes awhile for plaqunil to start working...so do your home work and we are all here for you....
Good luck and God Bless...
Your mother is right...to a certain extent. These are powerful medications. However, I was diagnosed just over a year ago and at that time literally could not carry on a conversation. I had repeated TIA's and a stroke, severe kidney, lung, heart and brain damage including hallucinations and inability to remember my name, phone number, etc.
Today, after almost a year of treatment on most days I can have a conversation and best of all remember most of it. I fought medications as long as I could, but finally, with the insistence of my husband and doctors I have more good than bad days. For many of us that is a miracle in itself.
Don't expect a miracle overnight, but given time I feel strongly that you will have more good than bad days. I will keep my fingers crossed for you.
Wishing you health and happiness,