Hi I am a 26 yr old female and I was diagnosed with SLE Lupus and FSGS a kidney disease at 18 in 2016. Recently diagnosed with Sjogren's... I took high doses of Prednisone and Plaquenil and it put me into remission for about 7 years. I recently was hospitalized for swollen legs and ankles again and it seems I am sick again and will be put back on high dose steroids and the Plaquenil. I am very scared to take these meds again and I am unsure what to do. I feel very alone as none of my friends or family has any clue what Lupus or any of these meds are. Doctors say I'm noncompliant but I am just scared of the side effects and just want to make sure I am doing the right thing for me and my health. I am also afraid that even if I attempt to try the drugs they may not work for me like they did last time or I'll get some weird or deadly side effect.. My Rheumatologist is suggesting adding Imuran (Azathioprine) but I am very hesitant to take an immunosuppressant/anti rejection drug... I feel very alone and would just like to hear other people's stories and see what everyone has to say and how they deal with and treat their Lupus or nephritis. Thanks all,,,, 😢
FSGS - feeling alone and needing support or... - Kidney Disease
FSGS - feeling alone and needing support or advice
Hi Amber,
I can understand your feelings of reluctance and fear of the fsgs coming back and repeating prior medication.
None of this is easy, your thoughts and concerns very normal.
Unfortunately, this is a process. First to identify the cause of your symptoms now and to come up with the best way to treat it.
Referring to you as " non-compliant" without extensive discussion must be harsh to your ears.
Just know that you are not alone as despite your families exact understanding of fsgs and what's behind it, they do love you as well as friends and all of us here.
Bear in mind that you are the patient and have the right to ask questions and have them answered.
First, what medical tests have you been given recently to confirm this exact diagnosis?
At this point, sit down with your medical team and ask questions; not leaving until all of them have been answered.
Ask a family member to join you at the appointment and scribe for you. This will allow you to better focus and also give your family a better understanding as to what is going on.
Have you discussed any other medications to treat your symptoms other than a repeat of the prior?
Ask why they feel that this is the best therapy for you at this time. Is there an alternative?
Have you considered getting a second opinion to confirm both diagnosis and treatment? You as the patient have the right to do so.
Alot to process, but another way to look at things.
I know that it is not simple, but try to stay calm and positive.
Feel free to reach out at any time as you will always have a friend here reaching back.
B...
I have a son with PsA, diagnosed in his 30s, and also knew a friend with Lupus. The autoimmune conditions you listed are significant disorders; none of them are your friends. FSGS, for example, attacks kidneys. Lupus can do that too; in fact it can attack any organ - the heart, the kidneys, brain, the digestive system, etc. (Sadly, my friend with Lupus recently passed away when it attacked her cardiac system.) Your autoimmune is clearly overactive and misguided - attacking healthy organs and tissue. All those anti rejection meds you fear are designed to subdue your angry and misdirected immune system in order to limit damage to your body and give you a nice life. My son, for example, takes a very expensive "biologic" med that also suppress his autoimmune condition. He feels much better on it; his joints in his body don't ache as much or lock up on him. Sometimes he has to "double it up" on that biologic when he has a flare. It's truly saved his life - without it, I'm sure he would be in a wheelchair today, unable to hold a job, and living a very painful, poor quality of life. If you're unsure of what to do, I encourage you to sit down with your favorite doctor and ask him/her how your particular immune conditions may harm you and how immunosuppressants/anti rejection drugs can limit those problems. You really don't want your healthy organs to be attacked. You're very fortunate to be seeing a rheumatologist; many don't have access to one. But, you can always look for another one if you don't trust his judgement. Thankfully, the medical world has come a long way in controlling these issues with those drugs. I hope some day autoimmune conditions can be completely eliminated. Sending hugs your way.
Thank you for your response, it is nice to not feel alone and know someone else out there understands as well. I am sorry about your son and friend but I am very happy for him that he is able to live a semi normal life and feel better... I know it seems silly to not take the immunosuppressant.. your response will definitely have me reconsidering... thank you again.
Appreciate your response. I deeply care about you. Sometimes denial is something we like to do - it's hard to accept or believe "bad" news or treatments. We all do that at times. However, I sense you're actually a proactive young lady, who after reviewing the situation, will seek and reach for methods to keep her body functioning well even as it is under attack. Indeed, it's good to love oneself by treating oneself well. Sending lots of encouragement your way. 
You have received some great advice here, I just want to add one thing to consider.
You should feel comfortable with your diagnosis and treatment so I agree with others that if you don't I hope you can find a doctor that can provide that assurance for you.
I want to mention that while I don't understand your specific condition, I have kidney disease that led to kidney failure and I had a kidney transplant two and a half years ago at the age of 35. For most of my life there was no treatment available for my disease. The FDA approved the first treatment to slow the progression of my disease after my kidneys were already too far gone for the benefits to outweigh the risk in my case. Now that I have a transplant I have to take medications that have serious side effects, but keep my body from rejecting the transplanted kidney. If it weren't for my transplant I would be on dialysis several times a week, which has its own set of complications. But when you need it to survive, you deal with the complications that come along with it and try to make the best of it.
Treatments are not easy and they do come with side effects, but the hope is that the benefits outweigh the side effects. Hopefully for you, you can prolong or avoid kidney failure. I am sorry you are dealing with this and I hope you get the assurance you need to feel comfortable with whatever treatment you and your doctor decide. I also do hope that you can get this flare under control and prevent organ damage.
Had a neighbor back in the 1960's-70's with lupus. This is way before all the meds of today.He was a sugar cane farmer and worked out in the sun just about every day.
All the doctors of the day said he should have been dead. Shows you what doctors know.
He drank 2+ gallons of water every day and lived till he was almost 70.
There are different forms of lupus - perhaps your neighbor had a mild form. The SLE version mentioned by by Amber is a riskier form. Lupus can be a very destructive disease and can significantly shorten life if no interventions are made. But the good news is if one monitors it closely and takes medical interventions as needed, one can indeed have a good lifespan. I have two children with autoimmune disorders - a son with crippling psoriatic arthritis and a daughter with areata alopecia. One requires intervention, there are no interventions for the other. Thankfully both are employed and living life and that is truly a blessing. I think Amber will too. I hope she updates us periodically.
Oh! And he tried to not let the sun hit his skin, wore a wide brim hat and long sleeves always when he was outside.
I have Graves Disease but luckily it's been in remission for years. I've been told once you have one autoimmune you can easily get others. Lupus runs in my aunt's family so it's possible I could get that. I found that keeping stress low helps, easier said than done some days.
FSGS and cyclosporin...
Bad test results, don't know if I can do this
lukesmum
Pre Dialysis and scared!!
New here and need a little advice!!
