I had lupus and wasn't diagnosed for over 9 years. It was when I became so ill I couldn't stand or function that they took an interest. By then I had kidney disease and now inflammation in my liver. I was diagnosed in 2011. They even thought it was all in my head and sent me to a therapist.
Long story short, you need to be your own healthcare advocate. If you think there is something wrong do your own research and bring it to your doctors. Don't let them think your crazy just because one test comes back negative. There are many tests and it is overall functions looked at together that can determine if you have lupus or active lupus.
If you have been on high doses of prednisone for awhile you might experience swelling, especially in your face. If this is not prednisone related it might be kidney related. I think you should contact your doctor. Some swelling is to be expected but if you have way more than usual something might be up.
You're right about the doctor wanting to try something stronger. That was her first suggestion but I vetoed it. I've always wanted to save my big guns for when I have fewer options. Although I've been told by my doctor that Arava and Benlysta are still pretty strong drugs. They are the next step up from plaquanil and prednisone combo. I guess low dose chemo is the last round of defense according to my doctor.
I did some research and both drugs suppress the immune system but just go about it differently. Arava is a immunosuppressive disease modifying antirheumatic drug, it interferes with the cell cycle progression of T-cells or rapidly dividing cells, hence the stomach upset and potential for hair loss. It does appear to be a milder form of a chemo type drug and the cost is reasonable on my health insurance.
Benlysta is a human monoclonal antibody that inhibits B-cell activation, think bone marrow cells. This drug has the potential for more allergic reaction probably due to the antibodies in the infusion. I remember my husband developing a rash and headache when he received platelet transfusions during his leukemia treatments. The antibodies in each batch were foreign so his body was rejecting them. I'm sure those infusions were much more severe, I'm assuming that Benlysta is more like a flu shot reaction as the antibodies aren't all human.
I do know that Benlysta is the first drug developed specifically for the treatment of SLE which might be a good thing. I've unfortunately heard that it can be very expensive but I do have decent insurance, out of pocket max is $4500 per calendar year.
I read that Arava usually has a "loading dose period." Did you do this, take a 100mg dose for 3 days then 20mg daily? I've heard that you can skip the loading dose to minimize stomach problems. I have IBS on top of all my other wonderful issues so anything that can cause stomach issues keeps me close to home in a bad way.
Knowing what you know about SLE which way would you go personally? I understand that you are on Arava and doing well so you might not be so apt to try a new drug. Are you also getting a Depo-Medrol shot each month?View Thread
Thanks so much for the info. How long have you been taking Arava? I've heard that a lot of people have super bad stomach problems and hair loss. The hair loss thing is hard to gauge because so many of us lose hair due to the lupus and if you're taking Methotrexate (a cancer drug) you are going to have thinning hair.
I'm worried about both because I have a real issue with my digestion. Doctor says I have IBS on top of all this and with oral drugs I never do well.
I was also wondering how much it cost for Arava? I don't want to pry but my health insurance has a high deductible and my drug plan doesn't cover some higher priced prescriptions. I know that Benlysta is an infusion so it would be covered differently than my prescriptions so more of the cost is covered but I've heard it can cost up to $35k a year, Yowza!
You've been really helpful and I appreciate it. You can't always trust what you read on those drug review internet sites because sometime you only see the bad. I try and talk to my friends and family but they usually let their emotions cloud their judgment and aren't much help with advice. You've been going through this so you know first hand what works and what doesn't and also what to expect.
I was wondering if anyone has taken either one of these drugs, Benlysta (Belimumab Infusion) or Leflunomide (Arava). I went to see my rheumatologist today and it has been confirmed that I now have liver involvement along with my kidney involvement.
She also suggested a Depo-Medrol shot which is a long acting form of cortisone. Not as opposed to this as I've had cortisone shots before for a knee problem when I was younger.
Both of the above drugs are used in some form for cancer treatment, (aren't they all, Methatrexate) so I'm naturally a bit wary. Has anyone had experience with these drugs and if so, how well did it work and how many and type of side effects did you experience?
Thanks for the reply. I would say it's my meds but I'm only on some blood pressure medication and plaquanil. I started taking colcrys about six months ago so I don't think it could be that so soon. Hope it isn't the blood pressure meds because I had several that I was allergic to and taken off one because of the lupus.
Appointment is today guess I'll see what the doctor says.
I was diagnosed with Lupus approximately 4 years ago and discovered I also had kidney involvement. I've struggled off and on over the years with good days and bad days. This seems to be the major definition of living life with lupus.
Recently my husband passed from Leukemia and I'm now alone. The stress has been incredible. I'm now having more bad days then good days. I contacted my rheumatologist about my symptoms, fever, fatigue, nausea and general weakness and pain so they ran some tests. I had a high level in B12 and ALT. From what I can figure out on WebMD this can be attributed to Fatty Liver.
Since I have lupus does this mean that I now also have liver involvement? I noticed that quite a few people have kidney issues with lupus but I haven't seen many with liver, does anyone have experience in this area with their own lupus? Would really appreciate some help as I've been stressing about my test results all week and don't have an appointment till Friday the 27th.
Is anyone familiar with cryoglobulinemic vasculitis? I was diagnosed with Lupus several years ago and have kidney issues. I've been experiencing weakness and when I put this symptom in with SLE I got this disease response on a search on the internet.
Yes I know I shouldn't put stock in self-diagnosis but I was miserable for years until I was diagnosed with SLE and I did a lot of the legwork myself. I like being able to point my doctor in the right direction if possible.
Has anyone had this diagnosis or does anyone know about this disease?
If you have a diagnosis of SLE you might be eligible for disability. Unfortunately, disability is a numbers game. If you are currently working you can apply for disability with the state and receive up to one year. For permanent disability you need to apply to the Federal Government, you can collect both for the one year period.
If you have not worked for the past ten years you can only receive disability if you have a very low income and usually very few assets.
I live in California so these rules are applicable to the US and California.