Lupus Awareness

Question for anyone with a head fog:

Okay so mine has been really bad these passed few weeks and I thought I’d ask you guys about this. You know how, sometimes, when you take narcotics, you get totally wired? Not sure if this is normal but that feeling can last a day for me after taking something really strong (like Demerol). It’s like I don’t even have a head fog. But I know I can’t just pop one of those when I need to go to school or do work or comprehend anything. 

Are any of you on a medication that can make this head fog go away? 

I’m curious as to if things like Ritalin have been prescribed to help…? If not, anything you do that really helps you focus (don’t say caffeine)?

My grandparents are the coolest grandparents in the universe.

Allow me to explain. I just received my Easter present from my Mamaw and Papaw; it was a bunch of little stuff they found on sale, but the one thing that really stuck out was this book. I’d seen it before and I was speechless when I remembered where. I hadn’t asked them for it. I hadn’t told them there were books on Lupus. 

Remember this book?

That’s the one they got me. I’m still freaking out right now. I can’t wait to read it; it’s going right on my to-read list on my Goodreads profile. But you know what else is awesome about it? My grandparents know the author.

My Aunt Sue and Uncle Max (Sue was my great grandmother’s younger sister) have a neighbor, and that neighbor’s daughter has Lupus. She wrote this.

When I go home for the summer I’ll have to get it autographed and get a picture with her for you guys.

Did I mention how excited I am?

Walk for Lupus

I’m joining a walk for lupus on May 14th, 2011 in Hollywood, FL. I was diagnosed with Lupus when I was 10, I’m 20 now, and it would really mean a lot to me if you guys could donate at least $1, walk with me, or reblog this to help me support the Lupus Foundation of America.
To donate

If you’re in the South Florida area

Thank you

Carrie :)

Since we’re talking about terrible diagnoses…

My first doctor told me that I didn’t wear high heeled shoes often enough. Yep, that’s right. All I had to do was go out and buy a pair of fancy shoes and all my problems would be solved. Needless to say, the shoes made no difference to my health.

Hello

Hi, I just wanted to say that I love your tumblr and it makes me feel like I am not alone. I’ve had Lupus for about 4 years now. I was disgnosed in my first year of boarding school and it’s been a tough couple of years but I’m trying my best to live life to the fullest.

I just wanted to say thanks and that I will keep supporting your Tumbr :)

Shivani

Benlysta Cure: Not Overnight But Over Time

Benlysta: Patience and Healing

by Tory Hartmann

Benlysta is a drug invented by Human Genome Sciences, a pharmaceutical company that has been in the forefront of autoimmune research. Their latest drug, Benlysta, which at this writing is on the verge of approval, has been in clinical trials for the past seven years. I know. I’ve been on it since February of 2004 under its first name, LymphostatB

When I was admitted to the Phase II study, I had no idea that in a few years I would feel totally normal again. The drug Belimumab inhibits the autoimmune patient’s runaway B cells. In normal immune systems, the B cells have a normal course of life, then they die. But in many lupus patient’s immune systems, the B cells run rampant, causing arthritis, bone aches, hives, and fatigue. Curb the B cells, and the body can get itself back to normal. This “normal” however, does not happen overnight.

Around the blogosphere, I’ve been disheartened to hear comments like, “It takes six months! No way I’m waiting.” These people don’t get it. Benlysta is not a steroid masking the symptoms. Benlysta is not a magic analgesic hiding the symptoms. Benlysta keeps the B cells from destroying your body and allows your body to heal itself.

This is a breakthrough! I know this for sure as it’s happened to me.

These were my lupus symptoms in 2004:

Rashes

A peculiar shawl shaped rash on my back

Hives

Yeast rashes on my face

Giant erdicadia popping up on my head and face

Extreme sun sensitivity – sun burn from florescent lights, sunburn from sitting near a window

Reynaud’s Syndrome – tingling fingers, swollen and painful fingertips

Miocitus in my arm muscles – unable to lift my arms past my chest, loss of arm strength

Arthritis in my joints

Aching bones

Fatigue Syndrome

Esophagal spasms

Difficulty swallowing

Sudden fevers

Uncontrollable muscle twitching in my legs and arms

Neuropathy on the bottom of my feet, making walking painful

Low white cell count

Low red cell count

It is now December, 2010 and I have none of these symptoms. Back in 2004, I noticed a slight improvement in two to three months. My skin rashes weren’t as troublesome and I had a little less fatigue.

At the beginning of the study, I took an infusion every two weeks for three months, then every month since. Every symptom slowly improved, then disappeared. After three years, even the sun sensitivity left, yet doctors told me the sun sensitivity would never go away. They had never heard of or seen anyone’s acute sun sensitivity get better. But Benlysta seems to have allowed my body to heal from the inside out and even this dibiltating malady melted away. Benlysta is not a steroid! Benlysta is not a pain pill!

So to those people who whine and say, “I have to wait for results?” I say, how long did it take your body to get in this condition? If you decide to take Benlysta, give your body some time so it can come back. Healing takes time.

I am not a doctor, but if you want to ask me any questions about my experiences taking Benlysta, I will do my best to respond.

The Other Diagnoses

The “other diagnoses” than lupus ranged from autoimmune hepatitis, drug-induced hepatitis, spondylomyelopathy, and synovitis.  I saw a gastroenterologist for about 2 months that seemed to only collect a co-pay from me and ignored my complaints of joint pain and a referral to a rheumatologist until I finally explained I am going to college soon and need something to treat the pain before I go.  (at the time I was working as a waitress as well and could barely work on the job—limping, etc.)  I was referred to two different rheumatologists— one in my home town, one in near my college, and both could not tell me what was wrong.  It was between lupus, autoimmune hepatitis, and rheumatoid arthritis.  All tests came out nonspecific until I could barely walk and had to drop out of college for a semester.  If doctors relied less on blood tests and more on symptoms—such as a greater dose on prednisone—I might’ve been able to have a freshman college experience like most other people.  Instead, I was diagnosed with lupus and was late in it getting treated.  I saw about five different doctors until it was finally diagnosed.  I urge others to never give up.  I played soccer for ten years beforehand, had enough energy to hold a job as a waitress during high school, and started feeling tired and joint pain and had no explanation why.  Do NOT ever have a doctor write you off because you are young/complaining/a woman/hormonal/whatever excuse you can think of.  Perseverance is the only way you have to a chance of a “normal” life again.  No matter how many “other” diagnoses you go through.

I’d like to submit a brief anecdote from my diagnostic process. It’s taken me awhile to find this truly funny, but I think almost seven years and relatively good health can go a long way. ;)

The first signs of my deteriorating health began the summer I was sixteen. I got the flu. I’d only had the flu once before and I was honestly unaccustomed to getting sick; it was awful. It came and went (along with about 5-7lbs which I did not want to lose) and then I went to summer camp the next week. I was exhausted. All day in the heat and sun— I was a wreck. And what I now know and recognize as the SIGNATURE physical sign of lupus popped up all over my face. When I get the rash now, it isn’t raised and it goes away when I calm down or begin to rest. This rash was THE RASH. Raised, mottled, and fierce. 

Initial diagnosis from my family doctor? An allergic reaction to strawberries. 

It did not matter to him that I do not have food allergies and had, regardless, not eaten any strawberries for more than a few months. He gave me some claritin and sent me on my way. I came back a bunch more times and all he ever had to say was that I had a virus and “it would go away on its own”. Three months later, after I’d been diagnosed with end-stage renal failure thanks to a rampant lupus flare, this guy had the nerve to comment on how he knows ALL ABOUT LUPUS. 

Really? Could have fooled me. Needless to say I do not have any connections whatsoever to this asshat any longer. I’m so grateful that I got an infection that led me to a compassionate orthopedic surgeon who did not dismiss me or my symptoms. I don’t know how much longer my body could have kept itself alive.

LUPUS AWARENESS? Yeah, I’d say it’s a pretty big deal. <3

Benlysta Side Effects

What to expect with Benlysta

by Tory Hartmann

Benlysta, a new drug about to be approved by the FDA, is the first new drug for lupus in over five decades. The excitement over Benlysta is tempered by the study’s mixed reviews about side effects. There is also a question as to the efficacy of the drug compared to steroid use, the traditional treatment for lupus.

Personally, I find all of this rather amusing, as I have been on Benlysta for over six years. Over 80 months, actually. I’ll have my 7 year anniversary in February of 2011. I have had such a complete healing that either I’m one in a million, or the study was somehow cocked at a strange angle and “healing” has only one meaning: absence of symptoms.

Steroids mask symptoms. They also deplete the calcium in your bones. I have found that Benlysta (I take it under the name LymphostatB in a Phase II study) has allowed my body to heal. I mean, really heal! I am strong and healthy, not plied with prednazone so that symptoms go into the background. My lupus went away, albeit slowly, but from the inside out. This drug is nothing short of a revolution.

Do I have side effects from the drug? Only on the one to two days after I take it. The infusion causes me fatigue and aching bones. During this time, I head for bed early and might be seen taking a nap during the day. Small price to pay for keeping those B cells in their place. Runaway B cells have caused complete havoc in my system and given me lupus. Keep them down, and my body repaired itself.

This is where I was in 2004 when I took my first infusion: Rashes all over my body, a peculiar shawl shaped rash on my back, hives, yeast rashes on my face, giant erdicadia popping up on my head and face, extreme sun sensitivity–sun burn from florescent lights, sunburn from sitting near a window, Reynaud’s Syndrome–tingling fingers, swollen and painful fingertips, miocitus in my arm muscles–unable to lift my arms past my chest, arthritis in my joints, aching bones, fatigue syndrome, esophagal spasms, difficulty swallowing, sudden fevers, uncontrollable muscle twitching in my legs and arms, neuropathy on the bottom of my feet, low white cell count, low red cell count. Steroids helped the rashes, but didn’t touch the rest. I’m happy to report that everything, including my blood work, is back to normal. Imagine that.

It took about 3 months to know for sure I was on the real drug and not the placebo. First indication was the lessening of fatigue. The rashes melted away. My bone and joint aches seemed to be less. Holy smokes, was I excited. It took three years for my blood work to turn around, but even my sun sensitivity left. I simply got better and better. Then better yet.

I doubt you could say that about steroids. I have had no other side effects from Benlysta. No depression–hell, I feel so great, how could I be depressed?

I know there are many different kinds of lupus and no two lupus sufferers have the same version of the disease, but if your doctor tells you that you’ve got too many B cells, consider this drug!

When I started Benlysta (LumphostatB), they gave me an infusion every two weeks, then after three months had infusions once a month. When I entered the once a month phase, I was feeling better the week after I had the infusion, but then I would slowly get lower and lower as I approached that 4^th week. Then I’d get the infusion and I’d feel better again.

I would suggest doing it every two weeks for 3 months, then every 3 weeks for a couple of months, then graduate to every 4 weeks. If I weren’t still in the study, I’d only have to take an infusion every 7 or 8 weeks, but I can’t because the study makes me have it every 4 weeks. It’s really too much medication, but it doesn’t seem to be causing any harm.

How does it feel to be a guinea pig? Strange, but wonderful. If I hadn’t participated in the study, I would probably be in bed right now. I’m glad I let them study me. I now feel I owe it to the scientists who discovered Benlysta to stay in the study as long as they run it. I also owe it to the lupus community. We were all on a sinking ship. Now my boat’s riding high in the water! And I hope if you are a lupus sufferer, you’ll soon join me. What a party we’ll have!

Benlysta: How I Got Lucky

Benlysta: I’ve been on it (LymphoStatB) since 2004

by Tory Hartmann

In 2004, depressed and sickened with lupus, I felt myself spinning lower and lower. When I found out about a study concerning a new lupus drug, I wrote to an address provided in an advertisement and long story short, was offered a place in the study.

Frankly, it was pretty scary as it involved infusions of a mystery drug. As far as I’m concerned, putting anything directly into your veins is pretty creepy and the most cheerful news in 2004 was that no monkeys had died. I swallowed hard. Monkeys? The people at Stanford seemed to be quite pleased about this. In the Phase I study, they said seven people (this is the figure I remember) had taken it. One died, but his death wasn’t related to lupus. They said it was lymphoma. Gulp again. I read what I could on the Internet about the drug and was mystified, but intrigued. This was a protein I was missing? Hmmmm. New way to go about a cure. Well, I could stay sick or try this. I took a spin of the roulette wheel. And guess what? I won.

At that time, every day was a struggle to get up, get to work, and function intelligently. I had a persistent itching rash all over my body as well as hives. Giant urticaria would pop out on my face and head cartoon-like, making me look like I had been struck by a tire iron wielded by the Roadrunner. I was so sensitive to the sun that I sunburned under florescent light. I had Raynaud’s Syndrome, which made my fingers tingle, turn red, and swell. They became so painful that I had to use a pencil to search for things in my purse and then carefully sneak in and pull out what I needed. Arthritis ached in my joints and fatigue syndrome made daily life a challenge. It felt like I had weights tied to my feet and that I was slogging through knee-high water. Then came a frightening wasting of the muscles in my arms. Soon I couldn’t lift my hands to comb my hair. I’m not going to bore you with stories of my esophagal spasms, the spontaneous twitching of my leg muscles, the neuropathy on the bottom of my feet, or the way I had to drape myself in cloth and gloves to cross a sunny parking lot to get to the supermarket without burning. Hey—I was a mess and believe me, I knew it.

So I signed up for this study of LymphoStatB, which has now become the new drug Benlysta. From the first infusion, I knew I had the real thing, but everyone got the real thing after six months. We were given infusions every two weeks for three months, then once a month from then on. The tiredness left first. In about three months, I stopped falling on the couch after work. My hives and rashes went into the background, and my joints stopped complaining. In about nine months, my fingers stopped tingling and hurting. No more giant urticaria either. Roadrunner begone! Over a year and a half, I slowly got better and better, but then the study ended. I was panic-stricken, but Stanford set me up with the same study in San Jose and I’ve been there ever since.

I want every lupus patient to know about Benlysta. My lupus stems from runaway B-cells. Benlysta knocks them down. Tells them to behave. This has changed my life. Maybe even saved it.

No one would ever guess that I have this disease. Now I’m not even the least bit sun sensitive. I walk around like a normal person. No more fatigue, arthritis, aches, pains, or rash. Even my blood work is better. Before, I had such low red and white counts that it scared me. Now they are both normal. (I love that word.) The muscle strength has also come back to my arms and if you don’t watch out, I could even give you a great left hook.

I feel that Benlysta gave my body the tools to heal itself. My boat was over on its side and it slowly righted itself. Now I’m in my sixth year of this drug I’m sailing along. No side effects except for a tiredness and some aches right after I get the infusion, which gives me a reminder of the way it used to be. When this mini “infusion exhaustion” is over, I’m back to being the energetic, run-around, do-five-jobs-at-once person I have always been.

Once in a while, I skip my monthly dose of Benlysta and guess what? Between the seventh and eighth weeks, the tingling comes back to my fingers, aches creep back in my joints, and a certain tiredness begins again and I know that lupus, that sneaky wolf, is still lurking.

Benlysta is fabulous and I bless and thank the scientists who discovered it. You guys rock!

Before they diagnosed me with DLE, they went through a bunch of other ideas.

They seem ridiculous now that I look at them.

• Mosquito bites.
• Ant bites.
• Flea bites.
• Food allergies.
• Sun/grass/tree allergies.
• MRSA.
• Cancer.

In the end it came down to Cancer and DLE. That was when they finally took a biopsy of my skin.

If any of you have ridiculous stories concerning diagnoses or doctors, feel free to share them.