Best Of
Re: What med do you use for lupus?
I take plaquenil, cellcept,and Benlysta. I have both SLE & DLE. I take the cellcept for the DLE. I love Benlysta. It's really helped keep the flares down and I have a little more energy, not a lot but every little bit helps. As for them lowering your immune system, that's what they are designed to do as lupus puts your immune system into overdrive. Which is why you shouldn't take things to boost your immune system. Just try to eat right (stay away from mushrooms and alfalfa sprouts), get lots of rest (if you can with two kids) and listen to your body. I hope this helps.
cyndyv
1 ·
Does anyone taking plaquenil have any skin issues?
I have been on plaquenil for 5 years and I have been having face breakouts for a couple of years and they seem to be getting worse. They pop up under my skin red and inflamed. They have a clear fluid that comes out and sometimes have pus like acne. I have been to 4 dermatologist. The first 2 were not sure what it was thought it was lupus related and gave me a steroid cream, the 2nd was pretty sure it was lupus and started me on elidel, and the last one...I walked in and right away said it is rosacea gave me a rx and walked out. I have read that plaquenil can cause skin problems too. I am just frustrated bc I can't find any meds to help it and it getting bad on my face. I am really self conscious about it. Thanks
Castilloc
1 ·
Re: Could is be lupus?? Rash and chronic migraines
I had lupus symptoms for years, and mine were kind of just shrugged off. Now, I'm being told it was seronegative lupus or uctd undifferentiated connective tissue disease that developed into lupus. I had two positive ana tests that were about eight months apart and said the same thing. This was after things got progressively worse with the symptoms. You can also have a negative ana and still have seronegative lupus which is ana negative lupus. I have also been told that ana levels fluctuate and even go from positive to negative to positive in some lupus patients especially when early on, but the ana alone isn't the whole picture sometimes. There are a lot of other blood tests. Seronegative lupus could be possible, and it's worth looking into that. If you say you want it ruled out and tell them that you're very concerned, they should be able to run the tests for it. It has different blood tests and things they go by to determine if you would have that. There are also a lot of autoimmune diseases that are a lot like lupus symptoms too. I am so sorry you feel so awful. I have migraines chronically too, so I understand how hard it is. Lupus is just so hard to figure out you have it.
Angel9
1 ·
New here, and 1st time taking chemo for lupus. What should I expect?
My doctor recently prescribed methotrexate for my lupus flare-up. I'm not sure what to expect and kind of nervous. Anyone taken this or other chemotherapy drugs? Did it help?
ValTu
1 ·
Re: physical activity and leg tightness
100% here! My hamstrings especially have ALWAYS been extemely tight, and IT bands painful to palpate. I needed acupuncture to help release knots in my calves before a massage therapist could even look at them.
Massage and acupuncture did amazing things to help.
Yoga, swimming and Tai Chi as well.
If any of these stop, I definitely feel a difference. I feel my best when I keep up routine. I alternate acupuncture and massage at least once every 6 weeks, and do one form of exercise at least 3 days a week. I try for more but just don't always get there.
The pain doesn't go away, but keeping gently active helps. On days the pain is exceptionally high I use a CBD/THC hybrid cannabis oil and I work through the high. The trick on that one is to start just before the high kicks in, otherwise I have found I just want to binge watch Gilmore Girls on the couch with a bag of Cheetos. Lol
For ankle pain, I found just laying with my legs up the wall for 10 minutes helps, and "drawing the alphabet" with the feet a couple of times. It's a simple exercise from my physiotherapist that seems to help.
Massage and acupuncture did amazing things to help.
Yoga, swimming and Tai Chi as well.
If any of these stop, I definitely feel a difference. I feel my best when I keep up routine. I alternate acupuncture and massage at least once every 6 weeks, and do one form of exercise at least 3 days a week. I try for more but just don't always get there.
The pain doesn't go away, but keeping gently active helps. On days the pain is exceptionally high I use a CBD/THC hybrid cannabis oil and I work through the high. The trick on that one is to start just before the high kicks in, otherwise I have found I just want to binge watch Gilmore Girls on the couch with a bag of Cheetos. Lol
For ankle pain, I found just laying with my legs up the wall for 10 minutes helps, and "drawing the alphabet" with the feet a couple of times. It's a simple exercise from my physiotherapist that seems to help.
keldertron
1 ·
Re: Employment/Symptoms
it I can definitely relate to your symptoms as well. I am a registered nurse that as been living with SLE for the past 15 years . I continue to work, however, after completing my 12 hours shift , I need 2 days or more to recover. Definitely fighting fatigue and insomnia sometimes ., I just stay in bed on my days off. This seems to help.
Angelo
1 ·
Re: Young Adults Living With Lupus
Hi all! I'm 19, I was diagnosed at 14, but they had speculated I had it since the age of 5 and it took them a long time to diagnose. I was put on plaquenil and neurotin(gabapentin), but after major eye damage I got taken off of plaquenil and I took myself off neurotin after falling into remission because of major brain fog and loss of memory. Now my pain is bad, but there's not much anyone can do. I'm finishing up college, and it's hitting me that I have to start looking for jobs and I'm not really sure how to manage that yet with lupus. If anyone is in the same situation, feel free to reach out. Not sure how to manage adulthood and life with lupus quite yet.
briannawelborn
1 ·
Lupus shrinking lung disease activity and exercise difficulty
I am curious if anyone else has been diagnosed with Lupus shrinking lung disease? If so how do you stay positive when it’s difficult to breathe even being on oxygen 24/7? How do you work out when even riding a stationary bike is exhausting? I have back fractures from 18 years non stop steroid use and lots of immunosuppressants. Exercise is difficult!!
leanonme
1 ·
Re: Do I have Lupus
I was diagnosed with SLE in 1983. My biggest issue has always been fatigue, and I've learned to be kind to myself. I learned to say, "Sorry, but I can't" when necessary. I have had a problem with mouth and nose sores, but nothing within the past 5 years. I have never had the redness/rash. Yes, I do take a diuretic for swelling of my hands, but I live in a warm climate and get "normal swelling" on hot days. All I can recommend is finding a GOOD Physician - and "good" means someone who is educated, understanding, compassionate - and sticking with that person. I have been treated by the same Physician since I was diagnosed, and I am doing very, very well. I do have ups and downs, but I think "we" all do. The secret is the medical professionals who treat you. I found that I was not a classic case, my primary symptom being unending fatigue. I wish you well -
JudyTD
3 ·
Do I have Lupus
Hey All- I think I have Lupus but would really appreciate feedback on the beginning stages of experiencing this disease.
Since Oct 2019 I’ve gained nearly 20 lbs of which now providers tell me is more likely swelling retaining fluids. My hands and face are swollen and sore daily, some days I can barely get my rings off and visibly my face changes cause of the swelling. My joints ache daily, esp hips, hands, just over all sore joints. The fatigue I’m experiencing is beyond a normal “long” day. It’s like I’m terribly exhausted. Itchy scalp.
I’ve had gastro issues- dr did colonoscopy and found nothing but yet I get abdominal cramping, constipation, etc. I was just at a urologist for cystoscopy because every urine test I have blood in (not visible) however they found nothing wrong with my bladder and lightly mentioned might be my kidneys. I get mouth canker sores. Also I get dizzy all the time, feel like I’m gonna pass out. Lose feeling in my hands at night while sleeping (may be poor circulation?).
I have redness in my My face- however only appears at night or after a day in the sun. None of these things happened to me prior to Oct 2019. Does any of this sound familiar. Every time to look at symptoms online or ask friends that work in the medical field each of them says I need checked for lupus ASAP.
I’d love to hear anyone’s perspective and response. Thank you so very much.
lbsteins
1 ·
