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Re: What med do you use for lupus?
Hello! I have been diagnosed with SLE two years ago. I have been taking 10mg of prednisolone (the French ''Solupred" by Sanofi) in the morning, after having breakfast and plaquenil as well. For a year now, my doctor advised me to take mycophenolate mofetil. I have to tell you that I have never in my life felt better than after discovering this drug. In my case, it's like it literally took the SLE out of me. I have seen improvements in my blood tests as well. I am not qualified to recommend it to anyone else against medical advice, but I'm happy I could share my experience and personal thoughts on the topic. Ask your doctor about it! Hope I was helpful! Best regards! 
andreea_valerie
1 ·
Re: Introduce myself, I’m new.
I am new also. My first name is Thomas but I go by, “TOM”. So I use it as an acronym for, “ToughOldMan”
I was diagnosed with lupus about a year ago. I’m in the midst of documenting the fact that it was drug induced lupus. I was taking MiraLAX®️, a brand name selling polyethylene glycol 3350. Perrigo®️ also sells polyethylene glycol 3350. I’ve been given both. It says on both types, “Do not take more than seven days, unless otherwise advised by your doctor”. My gerontologist had me take it for nine months and then had to double up on it but my ENT doctor told me that my dry eyes nose and mouth might be due to an autoimmune disease. He gave me an ANA blood test and sent me to an rheumatologist immunologist. (Spelling?) Anyway it was confirmed that I had lupus. I asked for a copy of my records and found comments, by about three doctors, that said the dry eyes, nose, and throat might’ve been caused by the polyethylene glycol 3350. I stopped taking polyethylene glycol 3350 and the symptoms aren’t quite as bad, but that could be because of the medicine, my immunologist is giving me. I don’t quite fit the picture of the kind of people that seem to get Lupus. Mostly younger, women, & not Caucasian. I’m, ”older than dirt”, 85 years old, a man, and a white Caucasian. nevertheless, I’m not your typical old man. My wife passed away while we had two toddlers that I raised. My Disabled daughter had children and I pretty much raise them too. A lot has happened to me. I got TBI and PTSD and have been exposed to a lot of radiation in the Air Force.
I tend to be a little wordy. Please forgive me. It’s called logorrhea. One of my heroes is my neurologist, who healed my badly severed nerves in my brain. After over 40 years of migraines, and an unbelievable, faith, healing, and regrown brain, nerves, I felt like Rip van Winkle, but he only slept 20 years. I was out of it for 40 years, and feared being put into a mental institution. Now I am so happy I can’t stop talking about it. Maybe I should write a book. Maybe I just started chapter 1.
Thank you if you read this far.
💕✝️TOM
I was diagnosed with lupus about a year ago. I’m in the midst of documenting the fact that it was drug induced lupus. I was taking MiraLAX®️, a brand name selling polyethylene glycol 3350. Perrigo®️ also sells polyethylene glycol 3350. I’ve been given both. It says on both types, “Do not take more than seven days, unless otherwise advised by your doctor”. My gerontologist had me take it for nine months and then had to double up on it but my ENT doctor told me that my dry eyes nose and mouth might be due to an autoimmune disease. He gave me an ANA blood test and sent me to an rheumatologist immunologist. (Spelling?) Anyway it was confirmed that I had lupus. I asked for a copy of my records and found comments, by about three doctors, that said the dry eyes, nose, and throat might’ve been caused by the polyethylene glycol 3350. I stopped taking polyethylene glycol 3350 and the symptoms aren’t quite as bad, but that could be because of the medicine, my immunologist is giving me. I don’t quite fit the picture of the kind of people that seem to get Lupus. Mostly younger, women, & not Caucasian. I’m, ”older than dirt”, 85 years old, a man, and a white Caucasian. nevertheless, I’m not your typical old man. My wife passed away while we had two toddlers that I raised. My Disabled daughter had children and I pretty much raise them too. A lot has happened to me. I got TBI and PTSD and have been exposed to a lot of radiation in the Air Force.
I tend to be a little wordy. Please forgive me. It’s called logorrhea. One of my heroes is my neurologist, who healed my badly severed nerves in my brain. After over 40 years of migraines, and an unbelievable, faith, healing, and regrown brain, nerves, I felt like Rip van Winkle, but he only slept 20 years. I was out of it for 40 years, and feared being put into a mental institution. Now I am so happy I can’t stop talking about it. Maybe I should write a book. Maybe I just started chapter 1.
Thank you if you read this far.
💕✝️TOM
ToughOldManTOM
1 ·
Re: Depression
my name is Dee, I was recently told I have Lupus. I am still processing it and not sure if I feel one way or the other about it. I just have felt for a long time that something was wrong, I felt like I was going crazy, my depression has been a struggle and so has my health but now that I know I have Lupus a lot more is making sense and I feel glad it wasn't all in my head like I had been told it was. But I am still overwhelmed by all this, any advice and guidance would be greatly appreciated.
DeeReese
1 ·
Re: Depression
I’m so sorry you feel that way. I can understand how you feel, I felt the same way. Getting such a debilitating disease early in your life is hard. You are not lazy! Do not let foolish people make you feel less than, they do not understand at all. Try not to isolate yourself, go on walks, watch funny shows, listen to music, meditate, do yoga. Just try to put your body in an active and tranquil state. Practice positive affirmations. You have support here so please feel free to reach out. You will get through this
sino711
1 ·
My antids dna is 66 recently from one month i m in a lot of pain it started with my knee pain
My antids dna is 66 recently from one month i m in a lot of pain it started with my knee pain Which get worsen with time now my left leg n thigh feels like it is stretched , heavier while sitting and walking my foot seems bit different to me i can’t decide actually what happens to them swollen or shrink foot veins become prominent while walking i have been taking 6 steriod, NSAIDS but nothing improved i m too much in distress and can’t decide actually what is the problem nor any doctor is telling me
maha
1 ·
Re: How do you help hair loss?
I found using shampoos and conditioners with peppermint stimulated my scalp. I used oils such as jojoba, olive and babasu, as well as mango butter and kokum butter. I also took hair vitamins with biotin. Try not to touch the hair or style it too much and it should grow back.
sino711
1 ·
Am I having lupus related seizures?
Do I have seizures or something else related to Lupus?
I’m 20 and I was diagnosed almost a year ago with lupus, but I can’t figure out if these episodes I’ve been having are related to lupus.
For almost two years I’ve been having these episodes once or twice a month where my whole body stiffens especially my left side (I can’t squeeze my hands or move much), I’m extremely confused, I stare into space, I’m unable to understand other people like the words get confused in my head, my heart speeds up, my face twitches sometimes, I’m nauseous, I drool, and if I’m exerting even a moderate amount of energy I “collapse” or faint and I’m so exhausted I can’t move for an extended period of time but I’m awake like I can hear everything. Before these episodes I often have a headache in the back of my neck and head.
After these episodes I’m often nauseous and tingly on my left arm, hand, and back. Usually I can remember most parts of the episodes.
I have had a CT scan and MRI during one of my first episodes over a year ago and showed no signs of a stroke. I have been to the ER several times for them and they don’t seem to have a concrete reason. One suggestion was hemiplegic migraines but that didn’t seem like the full answer.
I was looking into seizures and that could seem to be an answer. I take 200 mg of hydroxychloroquine and 4 mg of prednisone and that doesn’t seem to affect these episodes at all.
Any answers are appreciated!
arpurce
1 ·
Re: Hair loss from lupus
If taking methotrexate, it is critical that a person take folate. If your doctor doesn’t order that, too, ask about it. That influences hair loss.
Also when I was losing my hair by the hands full, my dermatologist had me take Viviscal along with Biotin. I was to take it for six months. Viviscal is a vitamin supplement. Though I continue to take the Biotin and I have only repeated the Viviscal when myself losing hair excessively.
Viviscal is rather expensive and can be found at most drug stores but I found it to be cheapest at Amazon.
The combo helped me immensely. My hair ultimately grew back and I now have a full head of hair. Of course, I still have lupus so I still lose some hair and that’s why I still take Biotin. It seems to help me keep up with the loss.
I hope this helps
lartis
1 ·
Re: Hair loss from lupus
I have also dealt with hair loss so I can understand the feelings behind it. I found using shampoos and conditioners with peppermint and tea tree oil helped. I also used olive oil, jojoba oil, babassu oil, mango butter and kokoum butter and massaged it into my scalp. I took hair vitamins with extra biotin, as well as getting triamcinolone acetide from my dermatologist. It’ll take some time to take effect but I have a full head of hair again. Hope these things can help you as well 😁
sino711
1 ·
Does anyone know if olive leaf extract is beneficial for lupus?
I've read excellent research saying olive leaf extract is very beneficial for lupus, and seen on several lupus-information websites that it should be avoided! My take on this is that OLE is immunomodulatory and that this is different from immune-enhancing (which might be a concern for lupus sufferers). Does anyone have any knowledge or experience re OLE supplements?
suzanne
2 ·
