Lupus
Questions + Answers
Cellcept Side Effect?
Hi, I started Cellcept this year after I had a reaction to my Benlysta infusions (was super depressing because it was actually helping). I have had some typical side effects so far with the cellcept (nausea, fatigue, tremor), but I have also had blistering on my face, hands and feet. It started around the same time that I started cellcept, so I am just trying to figure out if it could be related at all? Thanks for the feedback!
Cellcept took at least 3 months to work on me so I was experiencing the brunt of lupus flares in between my switch from methorexate to Cellcept for… read more
Gas!
Has anyone experience excessive gas especially on the chest area that you have a lil trouble breathing?
Ive been dealing with it for a week already. When i burp i feel a little better. Theres times i burp and a little food (vomit)comes out. I got some gas x pills and helps a bit.
This is exactly how my gall bladder inflammation started, when they finally removed it, it was huge! I was diagnosed with lupus not long after that.… read more
Anyone have chest pain? And can hardly talk
I've been having chest pain for three days now? And I have mild lupus still on plaquenil and it's hard for me to breath when I talk and I have a low voice when I talk? Any suggestions?
Go to a clinic or ER to make sure everything is ok. We have issues with breathing that can turn deadly.
Migraines/Tension Headaches
Lately I have been getting migraines or tension headaches that won't seem to go away could this be triggering my lupus and causing the migraines or tension to last longer? I have been under a lot of stress lately. I have tried to not stress but having kids around makes it impossible as I have to yell at the 7 year old everyday.
My main question is does anyone know how to relieve it is honestly causing me to become restless and my ears are beginning to feel stuffy mostly my left… read more
they have bed time hypnoses apps for your cell phone and they have helped me with headaches.
what helped you best?
what think you did or take made you feel a lot better, keeping off flares and pain, boosting mood, going into remission? like what was the best thing you did so far when it comes to this disease?
Wow , that's a loaded question. Speaking for myself , I guess my medical team had tried different combinations, not knowing if and when it may work.
I… read more
Oil Pulling for Dry Mouth
Hi everyone, I have seen this question was asked a couple of years ago but there were limited answers and I am genuinely interested in trying this. Currently I have had five fillings at the gum line since my Lupus started to become active and I really hate that my gums seem to recede a bit because of the dry mouth. I drink plenty of water and try to avoid caffeine if my energy levels allow me to.
Anyway my question is have any of you tried oil pulling since your diagnosis? What are your… read more
My rheum was the one that suggested I do oil pulling with virgin coconut oil. At first, i was doing it wrong. I thought all I had to do was swish it… read more
How does everyone deal with their exhaustion? Because I am having a very hard time being so tired all the time
I am retired , I have learned to listen to my body and dont push myself .
Just received a positive ANA test....
I was just tested positive for the ANA SCREEN, IFA, W/REFL TITER AND PATTERN and my ANA pattern is homogeneous but my ANA Titer is low. It is 1:40. RBC is low. Hemoglobin is low. Hematocrit is low. I have severe joint pain, headaches, dizzy spells, sensitivity to the light, fatigue etc. Has anyone ever had a low antibody count and still got a diagnosis? I am being referred to a rheumatologist. Thanks
In the beginning I was diagnosed with fibromyalgia until my ana crept up. Afterwards, Lupus diagnosis! Even though my symptoms hadn't changed, it was… read more
Does anyone experience episodes of psychosis during a flare?
My neuropsychiatrist tells me psychosis is side effect of CNS lupus.
I have CNS lupus and I get depression so bad that I have suicidal ideation of… read more
Hair Loss
Has anyone found anything that helps with the hair loss? Mines definitely thinning and I feel like I'll be bald in 6 months at this rate. I've been taking Biotin 5000 and follow the recommended Lupus diet, stay away from alcohol, and if I'm out during the day I'm covered with SPF and wear long sleeves and a hat... but my hair still falls out like crazy :(
Silica in drops in water and look on line. I found several answers there.