I was just diagnosed with Lupus. Does anyone have any advice concerning treatment? I'm allergic to steroids, so that is not an option for me.
Hi dee,
Have you been to a Rheumatologist yet? My Rheumatologist started me on a generic Plaquenil, and it is helping me, but it took 3 months before I really felt any improvement. I rely on my doctor knowing what is best for the symptoms I have. Trisha
Plaquenil, if your eyes are OK to start .
Good Sunday Dee
I'll try not to be longwinded..I was diagnosed at the age 20 shortly after having my first born with discoid lupus (of the skin) now like you I had injections of cordisone in my left side of my face where the leision developed. I wasnt sure if you hand systemic or not. but like you even as you and uninformed about lupus as I was ..I new that injection that made me blow up could never and didn't happen again. now Im not sure where your stages are of you lupus. no 2 people have it the same and our flareups and systems are different.
the best advise I can give you for it sounds like you it's to find out where you are with your lupus are you experiencing joint pain if so ...i use raw shea butter from ghana i was fortunate to know someone from ghana. just google karite tree or raw yellow shea butter is the most effective..read about it and you will see ..it can not be found in the stores..if so it's mixed with other fragrance and oils..which diminishes the healing properties,
shea butter grew my hair where it was balding..the left side of my face looked similar to the singer Seal..it now from a friend of mine said to me the other they didn't even noticed it..that's how powerful this is..not all raw shea butter is the same. their are so many multiple purposes for this it would take to long..I don't mind sending you a 2 ounce jar of it I have plenty.
my mother has dementia and i take her to the senior care during the week the nurse that care's for her has rhumetoid arthiritis I gave her some shea butter the next day i came to drop my mom off for that and eczema on her face.. the next day when i brought mom in she hugged me with tear's ..i can give you countless stories.. but don't believe me..read for yourself about this tree call the tree of life..grows in east and west africa.
now Dee your diet is very important here remember our old antibodies attack our new antibodies and we need to guard against animal protein and dairy remember if your immune system is failing you don't want to put something like alot of protein that will tire you...eat or juice raw vegetables and fruit...eat high in fiber, and moderation on your fish..Praise God im in remission since 1990's .
we just can't rely on synthetic medicine and it's side effects to be a permanent way
we have to start my giving our bodies natural fuel to fight from within.
flaring joint pain at the knees arms legs calves ...raw shea butter is unbelievable..I been using it since 2002.
sorry to be longwinded..natural cures are endless if we can trust in God we can trust what comes from His Earth to cure Us. I'm a testimonial and many like me with discoid and systemic are living with lupus with minimum or no reocurrence.
remember no 2 people has lupus the same everyone is different some lupus is to advance and may need medical treatment ...but like i tell my grandchildren ..Nothing Beat's A Failure But A Try
What makes you think you are allergic to prednisone? There are many other drugs and the choice of medications depends on your symptoms and disease activity. Plaquenil is a standard but there are many other options as well- what does your rheumie say?
Hey 
The best and most important thing that you can do is research your lupus and find out everything you possibly can about it…and then find you a rheumatologist that you can trust and feel comfortable with…everybody reacts and responds differently to treatments so you want to do whats best and what works for you. good luck friend! Ur in my thoughts and daily prayers!
Thank you all so much for your time and advise. Yes, I have been to a Rheumetologist, waiting on updated blood tests to come back. His diagnosis was 96% that I have Lupus based on year old blood test, when I was diagnosed with migraines, my answers to the questionaire and exam. Could have floored me, I was certain I had Rheumatoid Arthritis. My allergy to steroids are horrific, have had steroid shots in my wrists and back with no problem, however when given prednisone by mouth i have hip and knee pain to the point I would gladly chop them off. I go back to the MD in a week, trying to get as much knowledge as possible before then.
Hi dee
My first visit to my Rheumie, he diagnosed as RA then ordered more blood work, and when I came back for my follow up visit, he changed it to Lupus! I was floored. I've only read one book on lupus so far, and then I joined here right after. I haven't joined anywhere else. Please keep us updated on your upcoming visit. For me, the most important was improving my fatigue and swelling, which is better after 4 months, but now my knees are involved. So its always changing. Trisha
not to be too personal, but how do you work? I work 4 10 hour shifts at a very busy & stressful Oncologist office I am suffering everyday with the fatigue and pain and stiffness I'm not sure how much longer I can make it.
Dee
I manage 5 -8hrs days send I’m on my feet a lot I feel worse at the end of the day with pain and stiffness
Phelp,
I am very interested in the shea butter for regrowing hair. As you know between the Lupus itself and all the treatments themselves hair can be the first thing effected. I have lost about 2/3rds of my hair. My immunologist checked my vit D and it wasnt even registering on the test it was so low so he put me on supplements. That has slowed the hair loss down however it is not prompting regrowth. Please let me know whatever you can about how to use the shea butter for regrowth. Thank You Julie
PHELP said:
Good Sunday Dee
I'll try not to be longwinded..I was diagnosed at the age 20 shortly after having my first born with discoid lupus (of the skin) now like you I had injections of cordisone in my left side of my face where the leision developed. I wasnt sure if you hand systemic or not. but like you even as you and uninformed about lupus as I was ..I new that injection that made me blow up could never and didn't happen again. now Im not sure where your stages are of you lupus. no 2 people have it the same and our flareups and systems are different.
the best advise I can give you for it sounds like you it's to find out where you are with your lupus are you experiencing joint pain if so ...i use raw shea butter from ghana i was fortunate to know someone from ghana. just google karite tree or raw yellow shea butter is the most effective..read about it and you will see ..it can not be found in the stores..if so it's mixed with other fragrance and oils..which diminishes the healing properties,
shea butter grew my hair where it was balding..the left side of my face looked similar to the singer Seal..it now from a friend of mine said to me the other they didn't even noticed it..that's how powerful this is..not all raw shea butter is the same. their are so many multiple purposes for this it would take to long..I don't mind sending you a 2 ounce jar of it I have plenty.
my mother has dementia and i take her to the senior care during the week the nurse that care's for her has rhumetoid arthiritis I gave her some shea butter the next day i came to drop my mom off for that and eczema on her face.. the next day when i brought mom in she hugged me with tear's ..i can give you countless stories.. but don't believe me..read for yourself about this tree call the tree of life..grows in east and west africa.
now Dee your diet is very important here remember our old antibodies attack our new antibodies and we need to guard against animal protein and dairy remember if your immune system is failing you don't want to put something like alot of protein that will tire you...eat or juice raw vegetables and fruit...eat high in fiber, and moderation on your fish..Praise God im in remission since 1990's .
we just can't rely on synthetic medicine and it's side effects to be a permanent way
we have to start my giving our bodies natural fuel to fight from within.
flaring joint pain at the knees arms legs calves ...raw shea butter is unbelievable..I been using it since 2002.
sorry to be longwinded..natural cures are endless if we can trust in God we can trust what comes from His Earth to cure Us. I'm a testimonial and many like me with discoid and systemic are living with lupus with minimum or no reocurrence.
remember no 2 people has lupus the same everyone is different some lupus is to advance and may need medical treatment ...but like i tell my grandchildren ..Nothing Beat's A Failure But A Try
Dee,
I am in a similar boat to you. I have has tests galore run, and am waiting on my appointment with a Rheumy (scehduled for January right now), and am studying up big time so we can “hit the ground running”. My Primary, along with an in-named well known diagnostician I know from church whom I asked to look over everything, both strongly believe its Lupus. My Primary cant diagnose it because he is a family doctor, not an internist (and he is aware I have filed claim against my previous Primary for a major misdiagnosis that almost killed me), so understandably with no experience really with Lupus, he is sendings to a Rheumy. Since I’m waiting for the diagnosis, I have no treatment aside from Ostio-Biflex (so far not helping much).
Once I get the diagnosis it will become interesting though. 2 years ago I got a steroid shot and within about 45 minutes was pulled over to the side of the road waking down a cop because I couldn’t speak and could barely walk. Needless to say, I’m definitely allergic to injected steroids, so I am kinda sketchy on oral steroids. I am also allergic to Tylenol. :-/
But hang in there, I have seen so much stuff in my research that shows living with Lupus is getting easier by the year with better understanding (which is still very vague), treatments, and most importantly monitoring for Secondary Conditions. This site is very helpful, and is probably the best thing I have done to join this site.
I have tried many meds to no avail. I believe it was due to giving up to early
Believe it or not steroids didn’t kick out all my symptoms plus side effects stink
Of all the meds doc try to give, I think the safest is plaquenil, it just takes time for it
To become affective, also it has lactose in it, in case if an intolerance which I just discovered. I had issues when I took plaquenil, went off way too soon. I might try again, although I really believe what you eat and how u live has a full affect in keeping the symptoms in control. I also am new to this site and hoping to learn about others food and supplement information that mainstream doctors don’t know about. Best if luck!
Hello dee,
Thank you for updating we all on what's been happening with yourself and lets hope the bloods come back confirming something one way or the other so you know personally why your suffering.
I'm not working at all now my life stopped at 18 and i'm now 44 but with how we suffer working will put a strain on you mentally and physically and we've so many members who have totally stopped through this issue...your daily life should be paced slowly so your body does'nt get pressured.
Regarding steriods they don't suite me either and i refuse them...Plaquenil is a none steriod drug which is excellent for DLE/SLE which so many of us are on, i take 400mg daily, it's surposed to take upto 6mths to work but myself and other members have seen the difference at 3mths it's all down to the individual.
There is stronger drugs which are steriod based but you need to see what your rheumo says first and how bad you've got it and this link below mentions drugs for Lupus and which are steriods and which are'nt.
http://www.arthritisresearchuk.org/arthritis-information/conditions/lupus/treatments.aspx
Regarding home remedies and herbel medications which PHELP as mentioned...these always need to be checked first with your consultant and they're known for reaction with some Lupus suffers.
If i was you when you see your rheumo i'd push for Plaquenil.
Love Terri xxx
I had no idea plaquenil had lactose in it? That explains some of the intenstinal issues I've had. Thanks for the information! Trisha
Sue said:
I have tried many meds to no avail. I believe it was due to giving up to early
Believe it or not steroids didn't kick out all my symptoms plus side effects stink
Of all the meds doc try to give, I think the safest is plaquenil, it just takes time for it
To become affective, also it has lactose in it, in case if an intolerance which I just discovered. I had issues when I took plaquenil, went off way too soon. I might try again, although I really believe what you eat and how u live has a full affect in keeping the symptoms in control. I also am new to this site and hoping to learn about others food and supplement information that mainstream doctors don't know about. Best if luck!
Hello Mia,
I'd see your GP or someone if your putting that amount in your system and seeing no difference what so ever. :)
Mia said:
My vitamin D level was pretty much depleted. I was put on a prescription of 50,000 mg and I just had it re-checked and its still down ;( ...
I have taken Vit D tabs at different times and my blood tests still came back low, and were still dropping. My doc put me on Vit D drops, (I think quite a low dose) and maybe because it's liquid it worked differently and my next reading came back perfect. But it was more expensive. Still maybe worth trying.
Hello Mia,
That's worth trying what "AussieJen" as mentioned to get your level right. :)
Thank you AuusieJen for adding that for Mia besides other member's...as extra info helps we all in different ways.
Terri :)
AussieJen said:
I have taken Vit D tabs at different times and my blood tests still came back low, and were still dropping. My doc put me on Vit D drops, (I think quite a low dose) and maybe because it's liquid it worked differently and my next reading came back perfect. But it was more expensive. Still maybe worth trying.
Where do you get Vitamin D drops?
I would believe anything in a liquid form would be more readily absorbed by the body?
Good luck at your rheumy tomorrow Mia! : )
Trisha