Quantcast

Life With Lupus

Lupies


#1

Just wanted to say that I’m glad I found this site. I’ve learned a lot in just a short time.
Some of us are newbies, others have dealt with it for a long time. It would be fun to know how long you have it and what would you attribute to your success with it.


#2

I WAs diagnosed with SLe 3 years ago. I have a great team of doctors that actually talk to each other. I am on plaquenil ( the fake one) and my mouth sores are gone and my hair loss is better. I guess that's what I would contributed my "success" HAHA to.

Cindy


#3

I was diagnosed less than 1 1/2 yrs. ago. (took decades to get diagnosed!) Started hydroxychloroquin 8 mos. ago. Miracle. Had “millions” of symptoms prior. Feeling like a normal person again…the best in YEARS!! Always leary though…wondering what “surprise” is lurking around the corner. When you’ve had days, months, years where you feel like you just want to die, feeling this good doesn’t make sense. Praying for those who feel lousy.


#4

Have had this illness since 1967 (almost half a century!) Its an anything goes illness with flares and remissions My success has been two fold- by accepting there is no cure and realizing that I am responsible for my own well being You can only lay so much at the feet of the doctors- it really is up to you how well you do. The second main thing is accepting you are only disabled as you allow yourself to be- again your success is up to you.


#5

Hi J, Although I had symptoms for years, my Dr didn't connect the dots until 2013. My first noticable symptom was needing to sit down and take breaks more frequently. Then started the skin changing and gastrointestinal problems. The pain became more unbearable, then finally, after many visits, and an arms length of complaints and much blood drawn, my Primary Dr had a specific blood test that confirmed Lupus.Since then it has been one specialist after another, one test after another, one medicine after another, more blood drawn than I can count, and for now I am on a mix of leflunomide, prednisone and Ibuprofin. Good news my heart is still good. Bad news my liver tests are high, and had to cut back on the leflunomide which causes the pain to increase. I live on Ibuprofin. That's my story so far. :)


#6

Hi J and welcome to the club!

I agree with you, J. People here have been fantastic in sharing information. I just want to say, "thank you," to all of you for your help and time.


#7



freightliner said:

I WAs diagnosed with SLe 3 years ago. I have a great team of doctors that actually talk to each other. I am on plaquenil ( the fake one) and my mouth sores are gone and my hair loss is better. I guess that's what I would contributed my "success" HAHA to.

Cindy


#8

freightliner just want to ask what is the fake hydroxycloroquine ? your talking about? wondering how many of us are on it and what the difference in the two are? have a great healthy day thanks again as always for your sound advice and your supportive replys too so many of us vegasgirl.............


#9

Hey J! This site is pretty amazing. I just turned 24 in January, and I was diagnosed with Lupus almost 11 years ago. I don't know if I would say I am "successful" with it yet believe it or not because I'm stubborn as hell. But I try to stay active between playing sports and going to the gym and I also try to recognize my limits with everything; such as sun light, when I need to rest, when or what I'm doing when I get joint pain, how much water I need to drink and what causes stress&what helps me most to reduce stress (I'm still working on the whole stress thing though-lol). I also tend to have an "out of sight, out of mind" mindset with it. I try not to bring it up too much with others and I honestly ignore minor aches and pains and just try to carry on with whatever it is I'm doing. So far, this is whats been working for me&what I am comfortable with.


#10

I want to know what the fake one is also. It looks like I’m starting plaquenil in a couple of weeks. Kind of scared.


#11

Lol. I swear your story sounds very close to mine


#12

The fake plaquenil is hydrozychloroquine . It's just the generic. Most insurances won't pay for plaquenil. I honestly don't know the difference. My rheumy prescribed it for me and I trust him. I'm assuming that there's no difference like Tylenol and equate.

I guess I use poor judgement on some of the wording I use. By successful I just mean it seem to be working for me. I have 7 or 8 specialists. and they all work together. I now have interstitial lung disease. I guess I am going to have some trouble in my future.

I do what I can when I can. I couldn't possibly work or exercise to any extent. In the AM I plan to do only what I know I can accomplish.

Cindy


#13

Thanks for letting me know the difference. I also take mine with breakfast and the other at dinner.

Cindy


#14

The difference between real and generic is the superior coating on the brand name, it is less likely to dissolve when you swallow it. This is true of many generics, but plaquenil is especially loathsome. I take meds with juice. It helps a lot, and food- breakfast.
I was first sick with lupus after I got the mumps in 1986, 29 years ago. It was 8 years before I was diagnosed. Plaquenil helped a lot, after the side effects wore off in 3 months. My most upsetting symptoms of lupus are still extreme tiredness, fever and pain. I had lupus pleurisy or costochondritis when I was diagnosed, very painful. Now, I am still very tired, it is not fixable in me. I’ve tried everything the doc can think of, and really nothing worked without side effects that were worse than tiredness. The only thing that really helps outside medicine is your attitude, and it’s something most long time lupies probably work on all the time. Learning to conserve your energy, getting enough rest, staying out of the sun- all of that is a lot of accepting that you’ll get sicker if you don’t pay attention. You can still have a life, but you’ll feel better more consistently if you take care of yourself. I didn’t believe I was sun sensitive, but I was and we all are. Sunscreen and long sleeves are great. I used to have long periods of normal health, but I never have that anymore. Oh, another thing we all get- lupus brain, fog, whatever you call it, it’s weird. Some days I can’t think straight, the next day is fine. You 're not crazy. :slight_smile: the people on this site are a great help, can’t say enough. I’m glad I found this community that actually understands the weird, complicated world of lupus people.


#15

I had my first flare at 17 and I am 51 so 34 years. Keeping impeccable records of what test have been done and the results. Records of symptoms and treatments that have worked on those symptoms. Getting all your doctors to work with you and each other. Not that they will always agree on the course of treatment. Listening to your body. If you are tired rest if you are in a flare say no when you can. Remember you are not defined by this disease and ask for help ( use medical equipment etc) when you need it. I hope that helps Be Well. God Bless Julie


#16

Hi!, u know funny that u asked the question, how long ?Well as of the 7th of Feb. , it is 4 healthy and happy years. And also having Breast cancer caught in the early stage, I do have to say , these 4years are Wonderful. Hope that you enjoy the sight and your time here as though I have in these 4years . This site has gave me n helped me to Live my LIFE HAPPY , I don’t know what I would have done with myself if it was not for the support that ca me from this online family in my 4years .Smile , again enjoy we are here for you ANYTIME 24/ 7 / 365 …Beverly L.


#17

Nice Beverly L. I do find it interesting how long people have had it and surprised by how young some were when diagnosed.
Loving the good info