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roysbaby

lupus

Posted by @roysbaby in Bones, Joints & Muscles, Jul 12, 2011

Does anyone have lupus? Wanna talk

roysbaby

Posted by @roysbaby, Jul 12, 2011

I do just diagnosed no one to talk too

bri

Posted by @bri, Jul 18, 2011

I'' bite, have lupus, well actually MCTD, Raynauds, proximal muscle, and arthritis, I have had it 10 years this fall (I'm now 35) and now that I know what my limits are the only thing I don't do now that I did before was wear Mittens (and ice fish, but thats kinda boring anyway if you out grow the drinking) and take meds....

your turn how old, where do you live and what questions do you have....

ybnvus2000

Posted by @ybnvus2000, Jul 24, 2011

I have MCTD with interstital lung disease but lupus is muxed in there too. Also have the Raynauds and idiopatic pulmonary fibrois because of the mctd. I just turned 35 and was diagnosed in January and my health has been failing fast. I don't know how long I have been having it though I noticed my hair falling out 3 years ago.

doodlebugz

Posted by @doodlebugz, Dec 31, 2011

u be tough angel girl you'll preservere thru it., I'm talking to the man upstairs for all of ya'

roysbaby

Posted by @roysbaby, Jan 16, 2012

mine too last couple of years whole new world.

roysbaby

Posted by @roysbaby, Aug 2, 2011

Im 44 female in Kansas just married in may diagnosed sle and another lupus overlapping finally went to rumatologist ran test again now waiting.

doodlebugz

Posted by @doodlebugz, Dec 31, 2011

bri don't bit me lol. now shhh don't tell anyone but I'm the granny in here. I'll be 57 in Jan.

jlacek

Posted by @jlacek, Aug 1, 2011

I am recently diagnosed as well. If your still interested in talking about it let me know. I am also a member of some other great groups that I chat with.

roysbaby

Posted by @roysbaby, Aug 2, 2011

Rumatologist just took test so just waiting

doodlebugz

Posted by @doodlebugz, Dec 31, 2011

I don't like it either but after 26yrs I've learned we get no say in the matter. There is life after the diagnosis though. Don't look down the road at what can happen, look at the here and now and deal with each symptom you have when you have it. We all are individuals and not one of us will fit our lupus into anothers lupus's shoe. Each Lupus patient is different with there own unique disorders. Who says you will even have a bad case of it. Take it one day at a time. And I know alot of people get offended when I say it but I will pray for you. Jesus is what gets me thru it all.

roysbaby

Posted by @roysbaby, Jul 12, 2011

I don't like it

budlight

Posted by @budlight, Jul 12, 2011

Hi there, I was just browsing and thought this thread looked a little lonely, I don't have lupus but I thought I would look up some info that you may have not read. I'm sure you know from your doctor all the medical stuff so here is what mayo says about alternative remedies. http://www.mayoclinic.com/health/lupus/DS00115/DSECTION=lifestyle-and-home-remedies

doodlebugz

Posted by @doodlebugz, Dec 31, 2011

Thanks Bud your a doll :)

emtlisap

Posted by @emtlisap, Jul 18, 2011

My 25 year old daughter was diagnosed with what they think is lupus, high ANA tests, but they "can't be sure." They think it is some type of auto-immune disease. She is on high doses of steroids, and had tapered off to a low dose, then a week or so ago, she developed a full-body lesionar rash. Steroids aren't working for it, and doctors are not sure what to do. She has gone to a rheumatologist, dermatologist, etc. She is in Taiwan. I would be interested in hearing what type of symptoms you have, what medicine(s) they are using to treat it, and any other "strange" symptoms you have. Also, what tests they used to diagnose it. If you don't mind sharing, I would love to hear from you. Also, I wish you the best of luck. My sister gave my daughter a book about living with lupus titled, "You Don't Have to be Healthy to be Happy." Was encouraging to my daughter. 🙂

bri

Posted by @bri, Jul 18, 2011

Do you know what her CK is? I know that they had a hard time diagnosing me? Have they done and EMG and other test. As far as I know it is not a black and white thing, it is based on symptoms and and there is a wide variey in the range

stu

Posted by @stu, Jul 18, 2011

My oldest daughter was diagnosed with Systemic Lupus in 1988. She had symptoms that can match many of the auto immune diseases. Within her first week she could not turn a door knob or hold a hair dryer and couldn't hardly get out of bed. She also developed the tradional butterfly rash on her face. The
top of her head would hurt so bad she thought it was going to come off. She would get the welts and swelling in her face, that made it look like someone had hit hurt many, many times. Swelling over an eye that literally stuck out half to 3/4".
I took her to a MD in Washington State who also was combining Traditional medicine. We went through numerous tests and over the next months did a lot of MD controlled cleansing and nutrition. These didn't correct the issue, but was very evident it helped. She had to become very nutritional oriented which has had a lot of influence on whether she had flare-ups or not. She has recently been tested for Gluten Intolerance and very definitely Gluten is a problem. It has been suggested that 90% of Lupus patients have varying intolerances of Gluten. Many quite extreme.
Creating a lifestyle of less stress and getting a proper amount of rest are extremely important. We found out early in her Lupus experience that Alfalfa was a no-no, as you probably already know. She then got pregnant with twins, which was sort of a kick in the pants, as you are a high risk patient in pregnancy.
Numerous needs of more rest for her going through that. Babies were born early, which is expected in Lupus patients. Everything went fine and twin girls are now going to be Seniors in High School.
We went through all the initial testing for Lyme disease and many other things with auto-immune like symptoms, but ultimately the tests from UCLA Med. Ctr. determined it was Systemic Lupus.
To this day she has spent many hours researching and combining MD and traditional therapy's and treatments to help her Lupus.
When she was diagnosed in 1988, there wasn't a lot of helpful information, mostly all negative as far
as living very long with Systemic Lupus.
I, as her father, was not willing to accept that totally negative picture that was painted and set out to find whatever it was that would help. Even though there are no knows cause's that I know of.
Again, we found others that weren't willing to adjust their life style and have gone through way more trials with their Lupus, because of those decisions.
A person has to be as positive as possible and not give in and let this disease win. Most individuals are different in life styles and the history of their life. My daughter has never drank alcohol or smoked, even
though it was not strictly forbidden, that was just not something she ever did, and which was best for her and her future challenges.
She still has to take a small amount of Prednisone to help control some slight symptoms, but she is grateful that she has been able to control the hugh flare-ups she use to have. Good Luck & God Bless

doodlebugz and emtlisap like this
emtlisap

Posted by @emtlisap, Jul 19, 2011

Thank you so much for the encouragement and helpful information. I will pass it on to my daughter!

stu

Posted by @stu, Jul 19, 2011

You are welcome. Just for info, my daughter was 23 yrs old when diagnosed. Now 46. And yes she has Raynaud's Syndrome also, which is pretty normal with Systemic Lupus. She also took a Anti-Malaria drug leading into the Prednisone.
I have known people that went for months and years without a diagnosis. A Rheumatogist initially said, lets just wait and see what happens. We never went back to him. I immediately took my daughter to a friend who was in Internal Medicine and said we are not going to wait, we are going to do any and whatever tests necessary to find out what this is.
At that time, there were only 2 facilities testing for the Anti-bodies for Lupus, one at UCLA and one back east. Blood samples were sent from Montana to UCLA and we had the answer within the week, and then started pursueing any and all avenue's for
solutions.
Unfortunately, we are still looking for a cure to whatever the cause was.
My daughter had major knee surgery some weeks prior to this event along with our
family losing a 3 yr. old grandson of our son, to a rare form of cancer. At that time only 13 known cases in the U. S.
I only mention this to bring up the fact that stress is or can be a major factor, it appears,
in altering the chemical balances in the body that can protect us.
Perhaps her"s was an offshoot of some freak breakdown of the balance's in her body,
compounded by a huge amount of stress.
Again, important for everyone to link arms and pursue and fight.
Have a good day.

doodlebugz likes this
roysbaby

Posted by @roysbaby, Aug 2, 2011

Well Im diagnosed with sle and overlapping and just detested to be sure just waiting without president sore on lips comes right back. what about organs will I just wait

doodlebugz

Posted by @doodlebugz, Dec 31, 2011

Stu your daughter is one lucky girl to have a daddy like you :)

doodlebugz

Posted by @doodlebugz, Dec 31, 2011

stu i wished i could sleep thats one thing i can hardly do, I have so much chronic insomnia, but I'm learning things as I go and I think with the good Lord helping me I may make it thru.

Posted by Anonymous-fbd49d24, Aug 21, 2011

Hi all, a little more positive story here; diagnosed with SLE in 1997, told it was serious enough that my lifespan would be much shorter. Had various treatments (methotrexate, prednisone, and was put on plaquenil). The plaquenil, once it kicked in (about 6 weeks) really has kept it under good control. Some flares, lots of various infections including MRSA, and some kidney and heart damage, and a blood clot once, but I am hanging in there. Everybody is different, and that is one of the hardest things about this disease: your symptoms will not be like anyone else's, and what works for someone else may not work for you and vice versa---a maddeningly individualized disease. All I can say is what has worked for me:
---to listen carefully to my rheumatologist, and to change rheumys when it was warranted. Second opinions are fine, but sticking with one good doctor and following her or his advice is the ideal
---to stay strictly out of the sun; if I am 5 minutes in the parking lot to the car unprotected, I will start a flare the next day. Some people are less sunsensitive than this, but a lot of lupus patients suffer because they aren't aware of how even little bits of sun exposure can hurt
---plaquenil, faithfully, never miss a dose; keep watch for retinal toxicity of the eye, a rare but serious complication of long term use (annual ophthalmology checkups are a must)
---aspirin, daily small dose, and as soon as I feel a flare coming on, I kick it up. Not NSAIDS, but real live aspirin. Once during an H Pylori infection, I had to stop taking aspirin and thought I was going to go nuts with the increased waves of pain and inflammation.
---a skin salve called Lupicare for the lesions and facial (and other) swelling--I have used it around my eyes when they swell up to the size of fists, and it helps, takes a few days but immediately feels better. YMMV, of course
---SLEEP is crucial: at least 10 hours a day for me, and preferably 12 as my doc suggests
---gentle exercise twice a day--yoga and indoor swimming are perfect, and a fellow sufferer I know prefers walking (sunprotected of course).. Some say to lift light weights for long reps, but my joints won't tolerate that. Slow calisthenics are good---sit ups, push ups, lots of stretching.
---my back ached a lot for a while so I got a gravity hanger, inversion boots, whatever you call it--this helped a great deal and I go back to it regularly
---did I mention SLEEP, and be willing to take a powernap as needed? Rest often during the day. lupus is an ada disease and a reasonable accommodation is that you have to take frequent rest during the day.
---keep stress under control in any way you can.
---I went dairy free and gluten free and not only lost excess flab but have fewer flares; I also backed off the wine in the evening. Obviously, don't smoke.
---attitude. Lupus is bad, no question about it. But your mindset can either make it worse for you or better for you; I choose to make it better by keeping in mind all the things I *can* do, and doing them, not denying the bad truth of this but also not giving it any more power over me than it has to take. When in flare I keep telling myself, "ok, this will not last forever, you can wait it out"---and when not in flare, "ok this won't last forever so you'd better enjoy the good times"! You can definitely have a happy and good life with lupus, and I intend to prove it. Good luck to all. --A.

MLew0731, Terri@Lupus, chel and 1 others like this
chel

Posted by @chel, Dec 16, 2011

i am a former plaquenil user (taken off due to retina toxicity) Dr wants me use methatrexate concerned about side effects anyone have any advice about the effects of methatrexate

chel likes this
ehansen99

Posted by @ehansen99, Jul 20, 2013

Methotrexate has been great for me. Have been taking it for 15 years in combo with Naproxen and Plaquenil. Just stopped Plaquenil about 6 months ago due to start of retinal toxicity...doing well without it

chel

Posted by @chel, Dec 16, 2011

i have lupus for about 22 years, have questions regarding methatrexate if any is taking this medication?

ehansen99

Posted by @ehansen99, Jul 20, 2013

I've been methotrexate for 12 years. Questions?

terrilupus

Posted by @terrilupus, Jan 13, 2012

I have had lupus for 5 years and diagnosed 3 years ago. I am still learning about it everyday. I have a great doctor and he really has helped me. I am on plaquenil and started feeling better within a few weeks. Sleep is the main thing needed when you have lupus.

ehansen99

Posted by @ehansen99, Jul 20, 2013

36. Have had lupus since 19. Happy to talk

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