I am so grateful for this forum. I've been diagnosed with Lupus since 2017 however it's still new and confusing to me especially the mental part of it. I have lost a whole year (2019) due to a flare up as I've been suffering from a memory loss. I now work with my rheumatologist and others plus my husband who's like my personal caregiver. I do worry about corona but I've been trusting God more n more . This lifestyle is very stressful especially when dealing with other issues of life. For those suffering my thoughts and prayers go out to u. This is when I can truly say I understand what ur going thru. Keep the faith and God bless u.?
Hang in there everyone. I've had Lupus since 2006. It has been a very tough battle. But at this writing I feel like I am on the other side. I am optimistic after feeling hopeless for years. What has helped me has been a GREAT doctor who provides great care, we have fostered a great doctor/ patient relationship. And I reduced stress in my life and changed my diet to 75% organics veggies.
My girlfriend has lupus, she is a mild patient tho, her immunosuppressants stopped last month, because her condition improved, she is still taking HCQ tho, I am so worried about her, will she be able to live a normal lifespan life?
Having suffered from ARDS in 2009 and being on a respirator, and almost losing my life, I am determined not to go through that again! Stay strong my fellow Lupus Warriors! Maybe being on Plaquenil will give us a bit of a protective shield. Continue fighting the good fight!
I was diagnosed with Lupus in 2017. All this is making me so nervous. I’m glad I’m on Plaquenil though but now I’m unsure if it’ll be in high demand, will I have troubles getting it? Hang in there fellow Lupus Warriors. 💜🦋💜
My drugstore told me that they didn't have my supply in yet, and they weren't sure when or if they would get it. I have an eight day supply left and I am hoping that I do get it either from my drugstore or my insurance mail order prescription service. I don't want to change my medications when this is working well for me.
@@carolyn4052 try calling around to other pharmacies in your area if you can. Different stores can have different suppliers and you might get lucky. I know a couple of people who were able to find their refill that way.
I'm glad you are able to get your medicine. I want to start it too. Stay safe and get a 90 day supply if possible. I read something yesterday that one of the drug companies was taking her off the drug. Not her doctor but the drug company. IDK how this can happen.
Cheetah1985 Hi, I also have Lupus. If you have a bottle of hydroxychloroquin you might save it for treatment for if and when you get Covid-19 because pharmacies across the USA are completely out because the government bought all of the supply and doctors wrote prescriptions for themselves and their families.
How you are managing for 27years . Whether it is possible for a peaceful life with lupus. Or any treatment and lifestyle pls suggest . I am suffering lot for 3 years
Red Ruby, My prayers are with you. I am fighting the good fight with you as well. I have SLE (Systemic Lupus) along with other major health complications. Don't give up! You are not alone.
I am an ICU RN recently have a positive LUPUS test last March of this year after having so many symptoms. My Doctor finally did the test when I developed redness that turned to bruises in my thigh with pain when I walk, it happened 2 x in 3 weeks with unknown cause. My hospital has this “ Special Accommodation Program” where nurses with chronic diseases will be exempted from taking care of Covid patients. My director, after knowing that I have positive Lupus test, gave me a form for my primary doctor to sign so that I will be exempted to work w/ covid patients. Unfortunately, my PMD refused to sign the form. My director was surprised by my PMD’s refusal to sign and assured me that she will not let me work in covid units. After watching this video and this great doctor, it really make sense that I should NOT come near Covid patients period. As a nurse knowing how I feel for few years now... I know now that I had lupus since few years back... Thanks to you doctor Ashira and this video, I can go to work in non Covid units guilt free. At first i felt guilty not working with Covid units while my co RNS are. Now I feel good and empowered. Thank you and God bless!
Thank you so so much for this great video, Dr. answered these highly relevant questions so well and clearly. She seems very intelligent, knowledgeable and sweet. New subscriber!
Hi I just got taken off work today until may 17 and work in a outpatient lab I’m doing everything I can take care of myself I hope it’s over soon god bless 💜😀
I’m on cellcept, plaquenil, a nsaid called diclofenac and 45mg of prednisolone as well for my lupus and have been on immunesuppressants for 2 years since I got diagnosed when I was 14 but I haven’t had any contact from my rheumatoligists I’ve been self isolating but I feel like my doctors don’t actually care what happens to me if they haven’t taken the time to make sure I’m taking precautions it’s really frustrating
I got diagnosed SLE Lupus in April 2019. I am agree with you Catrin Lloyd about Doctors don't really care about us with Lupus. My experience with Rheumatologists was very dissapointed because they just want to report medicine and order so many test for nothing. Rheumatologists just give you very strong medicine but that medicine affect others organs worst then lupus does. The key to be stable with this immune system condition is eating healthy, eat organic food, eat a lot of green vegetables as much as you can; try to do some fisical activities, try to eat fish often. Prednisolone has side effect about kidney so keep eye on, check your kidneys often. I send my prayers for you and God bless you! so I don't trust any doctor. my Doctor is Jesus Christ is the only one for me.
I keep asking but no one has answered… if I have Lupus (plus Sjogrens, multiple allergies {25+ common things}, hypoglycemia and non-alcoholic fatty liver disease) but am treating my diseases holistically (supplements, exercise, staying completely away from trigger foods while eating plenty of foods I should eat (like fresh fruits, salmon, etc), energy healers, blessings, etc., how should I be looking at Covid? My immune system isn’t compromised by all those drugs (benlystra, Hydroxychloroquine, prednisone) so how should I view Covid, my chances of getting it, and how it will affect me?
I need advice , I did master's In clinical microbiology but then during last internship period I got diagnosed with lupus. I just want to know is it a good career for me now as I became prone to infections
I was diagnosed with PPMS last April and Lupus 2 months ago. I am not on any treatment for my Lupus and want to start this medicine but I haven't even seen a Rhumatologist yet. I just started my first and only MS medication Ocrevous. My neurologist said that the Ocrevous can treat MS and Lupus together. I trust him but I feel like I should be doing more.
Doctors usually tell SLE patients to go off their meds, like hydroxychloroquine, when there is a risk of an infection such as the flu. Hydroxychloroquine actually quiets the immune system to the point it opens the user to catching the flu, a cold, etc.
My long covid has been diagnosed as reactive arthritis (a temporary autoimmune disease), rosacea or worsening of previous rosacea, and deficiencies in vitamin D, iron and B12. After prescription vitamin D, an iron infusion and B12 injections, most visible signs have gone away (bruising etc.) and so has all the different types of ache and pain except for my eyes but I always had some degree of autoimmunity in my eyes anyway, Covid reactive arthritis just added uveitis to that list of ocular issues. Anyway, good luck finding out what's happened to you. Please look into both functional, intracellular and absolute B12 deficiency and dysregulation, because those are very common it seems but hard to get diagnosed accurately. B12 injections help reduce the symptoms of the microclotting that's been proven in long covid even if you don't have an actual deficiency, because B12 reduces homocysteine levels and therefore overall blood viscosity. My covid-onset neurocognitive decline and mood disorder have not gone away though, possibly because B12 deficiency brain damage is permanent.
breezy MC hey I know this comment was from 4 weeks ago but I also have covid and lupus and have been extremely ill for 4 weeks and I’m still sick. How long were you sick for? Are you okay now?
Amanda Aguilar I’m still pretty sick unfortunately. I’ve been seeing my GI, my rheumatologist, my pcp and now I have to start seeing a cardiologist and my hematologist I haven’t seen in a long time. What’s your question??
People with Lupus are used to fighting battles. This is yet another hurdle that we'll get over. Hang in there! 💙💙💙
I am so grateful for this forum. I've been diagnosed with Lupus since 2017 however it's still new and confusing to me especially the mental part of it. I have lost a whole year (2019) due to a flare up as I've been suffering from a memory loss. I now work with my rheumatologist and others plus my husband who's like my personal caregiver. I do worry about corona but I've been trusting God more n more . This lifestyle is very stressful especially when dealing with other issues of life. For those suffering my thoughts and prayers go out to u. This is when I can truly say I understand what ur going thru. Keep the faith and God bless u.?
Very real talk. God bless u too
Hang in there everyone. I've had Lupus since 2006. It has been a very tough battle. But at this writing I feel like I am on the other side. I am optimistic after feeling hopeless for years. What has helped me has been a GREAT doctor who provides great care, we have fostered a great doctor/ patient relationship. And I reduced stress in my life and changed my diet to 75% organics veggies.
My girlfriend has lupus, she is a mild patient tho, her immunosuppressants stopped last month, because her condition improved, she is still taking HCQ tho, I am so worried about her, will she be able to live a normal lifespan life?
@@mayankrajanand5631 yes she will be .if she takes care of her with the help of her doctors.
Having suffered from ARDS in 2009 and being on a respirator, and almost losing my life, I am determined not to go through that again! Stay strong my fellow Lupus Warriors! Maybe being on Plaquenil will give us a bit of a protective shield. Continue fighting the good fight!
I was diagnosed with Lupus in 2017. All this is making me so nervous. I’m glad I’m on Plaquenil though but now I’m unsure if it’ll be in high demand, will I have troubles getting it? Hang in there fellow Lupus Warriors. 💜🦋💜
My drugstore told me that they didn't have my supply in yet, and they weren't sure when or if they would get it. I have an eight day supply left and I am hoping that I do get it either from my drugstore or my insurance mail order prescription service. I don't want to change my medications when this is working well for me.
@@carolyn4052 try calling around to other pharmacies in your area if you can. Different stores can have different suppliers and you might get lucky. I know a couple of people who were able to find their refill that way.
Cheetah1985 me too but I was diagnosed 2015 with Lupus SLE
I'm glad you are able to get your medicine.
I want to start it too.
Stay safe and get a 90 day supply if possible.
I read something yesterday that one of the drug companies was taking her off the drug.
Not her doctor but the drug company.
IDK how this can happen.
Cheetah1985 Hi, I also have Lupus. If you have a bottle of hydroxychloroquin you might save it for treatment for if and when you get Covid-19 because pharmacies across the USA are completely out because the government bought all of the supply and doctors wrote prescriptions for themselves and their families.
I found this informative. I have had SLE Lupus since 1993. Blessings and stay healthy for everyone.
How you are managing for 27years . Whether it is possible for a peaceful life with lupus. Or any treatment and lifestyle pls suggest . I am suffering lot for 3 years
Red Ruby, My prayers are with you. I am fighting the good fight with you as well. I have SLE (Systemic Lupus) along with other major health complications. Don't give up! You are not alone.
My daughter also has SLE. Love to you all
Lupus alone makes it difficult to stay awake!
Sorry I was cured form my lupus by the help of herbal medicine.
Do you know, that there is cure?
Excellent advice by Dr. Ashira Blazer.
I am an ICU RN recently have a positive LUPUS test last March of this year after having so many symptoms. My Doctor finally did the test when I developed redness that turned to bruises in my thigh with pain when I walk, it happened 2 x in 3 weeks with unknown cause. My hospital has this “ Special Accommodation Program” where nurses with chronic diseases will be exempted from taking care of Covid patients. My director, after knowing that I have positive Lupus test, gave me a form for my primary doctor to sign so that I will be exempted to work w/ covid patients. Unfortunately, my PMD refused to sign the form. My director was surprised by my PMD’s refusal to sign and assured me that she will not let me work in covid units. After watching this video and this great doctor, it really make sense that I should NOT come near Covid patients period. As a nurse knowing how I feel for few years now... I know now that I had lupus since few years back... Thanks to you doctor Ashira and this video, I can go to work in non Covid units guilt free. At first i felt guilty not working with Covid units while my co RNS are. Now I feel good and empowered. Thank you and God bless!
Thanks for taking the time to provide the encouraging update.
Great. Video. Thank you. For. The. Education Problem. Breaking. In. Out. Other. Then. That. Was. Great. Thank. You
Thank you so so much for this great video, Dr. answered these highly relevant questions so well and clearly. She seems very intelligent, knowledgeable and sweet. New subscriber!
Hi I just got taken off work today until may 17 and work in a outpatient lab I’m doing everything I can take care of myself I hope it’s over soon god bless 💜😀
I also have lupus I just found out last year at 38
I have lupus to i am 14 yaers old i am so so so scared for Corona virus
Dr. Ashira Blazer is stunning! Very beautiful professional classy
I’m on cellcept, plaquenil, a nsaid called diclofenac and 45mg of prednisolone as well for my lupus and have been on immunesuppressants for 2 years since I got diagnosed when I was 14 but I haven’t had any contact from my rheumatoligists I’ve been self isolating but I feel like my doctors don’t actually care what happens to me if they haven’t taken the time to make sure I’m taking precautions it’s really frustrating
I got diagnosed SLE Lupus in April 2019. I am agree with you Catrin Lloyd about Doctors don't really care about us with Lupus. My experience with Rheumatologists was very dissapointed because they just want to report medicine and order so many test for nothing.
Rheumatologists just give you very strong medicine but that medicine affect others organs worst then lupus does.
The key to be stable with this immune system condition is eating healthy,
eat organic food, eat a lot of green vegetables as much as you can; try to do some fisical activities, try to eat fish often.
Prednisolone has side effect about kidney so keep eye on, check your kidneys often.
I send my prayers for you and God bless you!
so I don't trust any doctor. my Doctor is Jesus Christ is the only one for me.
Thank you for this informative video! Please keep the updates coming!
Will you please explain risk factors with respect to infection control after taking IV Rituximab please?
I keep asking but no one has answered… if I have Lupus (plus Sjogrens, multiple allergies {25+ common things}, hypoglycemia and non-alcoholic fatty liver disease) but am treating my diseases holistically (supplements, exercise, staying completely away from trigger foods while eating plenty of foods I should eat (like fresh fruits, salmon, etc), energy healers, blessings, etc., how should I be looking at Covid? My immune system isn’t compromised by all those drugs (benlystra, Hydroxychloroquine, prednisone) so how should I view Covid, my chances of getting it, and how it will affect me?
Thank you so much for information 👏👏
Our pleasure!
hi Meseret Dehando?Stay strong,Stay safe.
Your. Such. A. Beautiful. Young. Lady. Your. Makeup. Looks. Perfect
Great, on cellcept, plenquil and work in ICU nurse. I wish l could transfer to a different position.
Thank you for the information. It is very helpful.
I was diagnosed with lupus in SLE june 2019 in chennai APPOLO HOSPITAL INDIA ......AND NOW I AM STAY HOME FOR A LONG TIME
I was too from chennai diagnosed on 2018 . To whom you are lookin for treatment . Pls suggest if your well and good
This is great but the audio quality is not. It keeps cutting.
We apologize for the audio issues. We learned a few lessons in making this update. We will do our best to improve the audio in the next update.
I need advice , I did master's In clinical microbiology but then during last internship period I got diagnosed with lupus. I just want to know is it a good career for me now as I became prone to infections
Thank you for caring guys🙂 we are not alone.
I was diagnosed with PPMS last April and Lupus 2 months ago.
I am not on any treatment for my Lupus and want to start this medicine but I haven't even seen a Rhumatologist yet.
I just started my first and only MS medication Ocrevous.
My neurologist said that the Ocrevous can treat MS and Lupus together.
I trust him but I feel like I should be doing more.
i am noor i have lupus sle in 2015 can i gat any help form
My wife take plaquenil for her lupus. I had the flu twice in 10 years. She never caught it.
Doctors usually tell SLE patients to go off their meds, like hydroxychloroquine, when there is a risk of an infection such as the flu. Hydroxychloroquine actually quiets the immune system to the point it opens the user to catching the flu, a cold, etc.
Anybody else being tested for possible lupus triggered by covid-19? The other possibilities I'm being tested for are sarcoidosis and vasculitis
Yes…I’m going through test right now.
My long covid has been diagnosed as reactive arthritis (a temporary autoimmune disease), rosacea or worsening of previous rosacea, and deficiencies in vitamin D, iron and B12. After prescription vitamin D, an iron infusion and B12 injections, most visible signs have gone away (bruising etc.) and so has all the different types of ache and pain except for my eyes but I always had some degree of autoimmunity in my eyes anyway, Covid reactive arthritis just added uveitis to that list of ocular issues. Anyway, good luck finding out what's happened to you. Please look into both functional, intracellular and absolute B12 deficiency and dysregulation, because those are very common it seems but hard to get diagnosed accurately. B12 injections help reduce the symptoms of the microclotting that's been proven in long covid even if you don't have an actual deficiency, because B12 reduces homocysteine levels and therefore overall blood viscosity. My covid-onset neurocognitive decline and mood disorder have not gone away though, possibly because B12 deficiency brain damage is permanent.
Good info. My thoughts were to stop taking Plaquenil after the Covid shot because I thought it would prevent the shot from working.
Plaquenil already shortage Shelby township MI 😞
Get a 90 day supply ASAP
I have lupus and Covid I’m still ok but can’t kick it
breezy MC Praying for you!🙏🏾🥰💞
breezy MC hey I know this comment was from 4 weeks ago but I also have covid and lupus and have been extremely ill for 4 weeks and I’m still sick. How long were you sick for? Are you okay now?
@@teresamarie710 how are you feeling ?? I have questions for you. I also have Lupus but no covid
@breezy MC how r u feeling
Amanda Aguilar I’m still pretty sick unfortunately. I’ve been seeing my GI, my rheumatologist, my pcp and now I have to start seeing a cardiologist and my hematologist I haven’t seen in a long time. What’s your question??
who came here after watching Trump?