Benlysta: what is it and how it works!

Some of you know from past blog posts, that I started a treatment called Benlysta about two and a half months ago.  I have been on this treatment before, but I had to stop due to side effects.  This treatment is given to people who have Systemic Lupus Erythematosus (SLE or just commonly called Lupus).  People that receive this are currently on other medicines to treat their Lupus, but this is just added to their current treatment regimen (for me I am also on a chemotherapy medicine called Methotrexate and an antimalarial medicine called Plaquenil).  Now, Benlysta is the first treatment approved for Lupus IN OVER 50 YEARS!  That is a long time if I do say so myself haha!  This treatment is given by way of intravenous (IV) infusion.  Benlysta cannot be given in pill form because of the complex proteins it is made of.  If these proteins were swallowed they would break down in the stomach before reaching the bloodstream and before being affective; therefore, Benlysta is given through an infusion right into the bloodstream.

Lupus is a chronic auto-immune disease as I have stated before.  Adding Benlysta to your treatment regimen will NOT get rid of Lupus.  In your body, certain white blood cells (WBC) produce antibodies.  Now normally regular antibodies help the body in protecting from foreign invaders.  The way Lupus works is when those cells stay in your body for too long, the cells become harmful.  These harmful cells react with your body in a negative way to cause the disease Lupus.  Also, the harmful cells produce a protein called an autoantibody.    These autoantibodies result by attacking your own body.  The attacking of your own body is what leads to inflamed and swollen body tissue.  In order for the growth of the harmful cells, a protein called B Lymphocyte Stimulator (LBys) is needed.  Benlysta binds to this protein to prevent the autoreactive B cells from forming.  Benlysta is not a steroid like Prednisone, it is a biologic therapy.  Benlysta helps by reducing certain cells in your immune system and by reducing abnormal immune system activity that make the disease active.

The dosing schedule for Benlysta goes as follows: for the first three infusions Benlysta is given every two weeks and then once every four weeks on a continuous basis.  Before each infusion you have to take a Benadryl and Tylenol to decrease your chances of having an allergic reaction.  Most people will take up to a year to see the full benefits of the medicine.  Some people can see improvements as soon as three months! I am close to my three month mark so hopefully I am going to turn a corner soon.

This disease is powerful, both in a positive and negative way.  Now most people are questioning how it affects me in a positive way? It affects me in so many ways but I am survivor!!!  In addition, I feel that I can be an advocate or voice for Lupus awareness so that I can help others with this daily struggle.  Some days may be harder than others and not all symptoms of Lupus can be helped with medicines, but a healthy attitude and being strong minded I believe is half the battle.  If this medicine will help out in the long run so that Lupus doesn’t affect any more of my organs or even helps my joint pain and swelling, then I will consider it a win.  I will take whatever it may give me and be gracious for whatever benefits I may see from this medicine so that I can continue to fight for awareness and eventually a cure for Lupus.

 

 

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Lupus And Hair Loss

Hi everyone!

I know a while back, around the time I went into the hospital, I mentioned that I was losing my hair. Well about a year ago, I did lose most of my hair. I even had some bald spots too.  I really didn’t have much hair and I didn’t feel that comfortable with what hair I had left. I always had extremely thick and wavy hair and all of a sudden it became thin to the point where you could see my scalp. I was raised that life is not about looks and I truly believe that because beauty is in your heart, but when you’re used to something for most of your life and all of a sudden it’s gone, it’s a shock. So after a discussion with my mom, I decided to get a wig. After some research, I found a place called “A Hair Boutique” in Shadyside. I went down, had a consultation and ordered a wig. I eventually got another wig too. I ordered both of those wigs in different shades of red because if you know me, I loved my red hair!!! I had red hair for about six years. Then, about a couple months ago my hair started to grow a little and it definitely got thicker again. So right now my wigs are on the back burner while I rock a purple pixie! I eventually hope my hair grows some more. However, I am more than thankful that my hair grew back at all! Going through this experience has really taught me a lot. It has taught me to be ready for anything, to be more understanding, and to be patient. This whole experience has been humbling and I feel sorry for those that aren’t as lucky as I am to have my hair grow back. I also feel very blessed that I was able to get two wigs in the interim. My wigs were awesome and if I ever need them again, I am so glad that I have them. I would like to say to everyone that there are many options out there if you are not comfortable with your situation. Certainly if you are comfortable, then good for you and I’m sure you’re rocking it! The only thing that matters is confidence and if you’re walking around like a rock star, then that’s all that matters. You should feel good in whatever you are wearing or whatever your style is.

 

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I’m Back!!!!

Hi everyone,

I know it has been a very long time since I wrote one of these. Almost a whole year. Let’s see, since my last post I was in the hospital and on 60 mg of Prednisone and going to be doing a medical withdrawal from Duquesne University. Well I can officially say the Lupus Enteritis that put me in the hospital last March is gone and I am off the 60mg of Prednisone. However, I am still on a medical withdrawal from school. I have been off for 3 semesters now. I miss seeing my friends. In a way it is like my life stopped and their lives moved on without me.

I have not been able to go back not due to the Lupus Enteritis anymore, but because my condition with my heart has gotten worse. If you don’t remember I have chronic pericarditis, which is constant inflammation of the lining of the heart. This inflammation causes me to have constant chest pain and shortness of breath with walking short distances. I have failed multiple treatments for this condition hence why I have not been able to go back to school. My new goal is to go back to school this coming fall! We are still trying to figure out a treatment plan for my heart and my fantastic doctor. Dr. Sokos will continue to help me. He is now putting me on 600mg of Ibuprofen three times a day for a month to see how that helps. I started a new treatment for my Lupus as well. It is an infusion called Benlysta. They tried it once before but had to stop it.  It is the first treatment approved for Lupus in more than 50 years! The doctors hope that the Benlysta will help with my Lupus symptoms and maybe even the heart if we are lucky. If not my pericardium could eventually harden and stiffen. This can make it impossible for my heart to expand when beating. If it comes to that case then the pericardium at that point has to be removed. Now I don’t know about you but when I first heard that I was like “YOU CAN DO THAT!!” and it is probably just as weird to hear for you. Now I am no where close to that point yet. However, if my condition stays at the point I am at right now that is a very likely scenario. For now it is just one day at a time and making the best of each day.

 

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Lupus Awareness Month

Hello family/friends/followers-
It is May which means that it is officially Lupus Awareness Month!!! I have a challenge for all of you out there to not only share this and spread the word but take a picture and post it with the Lupus L hand sign as follows with the hashtag #lupusawarenessmonth. You can post this to my Facebook page or twitter. My Facebook page is http://www.facebook.com/spreadyourwings4lupus and at twitter @Hope_For_Lupus. Purple is the official color for Lupus so if you are feeling it wear purple in your picture to really support all of the Lupus Warriors out there. I know we all would appreciate the support shown by all the pictures.

Follow my blog at http://www.spreadyourwings4lupus.wordpress.com to get alerts of new posts by putting in your email!
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Warmer Weather Means More Precautions

Since Lupus is a chronic auto-immune disease it means that my immune system is different than others. This disease will never go away and my immune system mistakes my body, tissues, and organs as foreign invaders and so therefore it attacks itself. As the weather warms up, that means more sun and with Lupus that causes more problems. Being affected by the sun is something called photosensitivity. Being in the sun for long or short periods of time causes things like: rashes, migraines, nausea, joint pain, pleurisy, chest pain, kidney disease, and central nervous symptom problems. Each person with Lupus is affected by the sun on different levels. For instance, when I am in the sun my symptoms can range from: a fever, migraine, joint pain and swelling, rashes, chest pain, and pleurisy. The one type of rash that may occur and that I get when I am in the sun is the Malar Rash or Butterfly Rash (a picture of this rash can be found in the blog post-Being The Best Version Of Yourself). The rash spans across the face, specifically from check to check bridging across the nose. However, around the folds of the nose the rash does not occur. Pleurisy is a diagnoses when the lining of your lungs is inflamed. This is very painful when breathing in and out. It is not only sunlight that can cause these things. If you have photosensitivity, fluorescent, halogen, and energy saving light/bulbs can cause the same damage. To help prevent or lessen these symptoms, you can wear special sunscreen, wear big hats, wear long sleeves and pants, and go out late day (it is better than mid-afternoon). To help with all most affectively you should wear all these things all year round and reapply the sunscreen multiple times a day. UV rays can penetrate through clouds on a cloudy day. Sun also reflects against the snow creating a just as dangerous season. UV light damages your skin. Your skin cells are called keratinocytes, causing the death of those cells. In people without Lupus, these cells clear quickly and if you were to damage these cells, creating for instance a sunburn, which clears relatively quickly. In Lupus patients the skin cells are more sensitive, and not cleared away efficiently, causing inflammation and other problems. With all of these precautions that need to be taken, and possible risks that I have each time I even get out of the car and walk to the door to go inside, I always make the best of it. I know I am very pale and that will never change. I cannot sun bathe like most people but I like to go to the pool in the late afternoon to read and enjoy the pool. I ask everybody whether you have Lupus or not to take sun protection very carefully and be aware that the sun is always out even if you can’t see it.

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Hospitalization

I am sure most of you have heard by now or you may have heard through the grapevine that I was in the hospital. I was admitted to the hospital on Wednesday, March 11th, however, it all actually started that Monday, March 9th. I had severe pains in my stomach that mimicked a gallbladder attack and the pain didn’t go away for hours. When Wednesday came, I started vomiting and went to the emergency room. When I got there I started having diarrhea as well. They did a CT of my abdomen and found a narrowing or restriction in my small intestines and inflammation in my colon and small intestines. They admitted me that night and tried to get my symptoms under control. To get them under control they needed to place an NG tube. NG stands for nasogastric tube. The tube goes down your nose to your stomach and stays there. This controlled my vomiting so I could eventually start a liquid diet. The doctors then planned to do a colonoscopy and endoscopy on the following Monday. They would have liked to do a camera capsule endoscopy also which is where I swallow a pill that has a camera inside of it. The reason the colonoscopy and endoscopy is not the best test is because they both only reach so far and don’t reach the small intestine and especially where the narrowing is. The capsule takes pictures as it goes through the stomach and then through part of the small intestine. However, since I have a restriction, that means that capsule would have gotten stuck and they would have had to have done surgery to remove it. Since coming home I have been to multiple doctor appointments and have to have more testing done. This hospitalization was caused by a Lupus flare and something called Lupus Enteritis/Vasculitis. I just found out the results of my biopsies today from the colonoscopy and endoscopy. They showed no scaring which proves that this is a Lupus flare not a Crohn’s flare. Crohn’s scars whereas Lupus does not. Due to all the inflammation throughout my esophagus and intestines and this Lupus flare I am in, I am on a high dose of Prednisone. I started off at 60mg and now I am at 35mg and weaning down each week. My complement levels for Lupus were very low along with my platelets and white count and it affected my bone marrow. Due to all of this, my doctors and I have decided that a medical withdrawal from Duquesne University would be the best thing to do for the rest of the semester. To do a medical withdrawal is not my ideal thing to do. However, this has been the sickest I have ever been and I am going to have continuous testing so I know this is the best thing to do for myself. I have to worry about my health first and foremost. My advisor from school said that as long as I take a prerequisite class over the summer, I can continue with the rest of my class for next semester. Thankfully there is only one class that is a prerequisite for the following 2015 Fall semester!! I will be physically a semester behind, but I am happy I can continue with the friends that I have made after getting some rest and doing work over the summer. I will always have hope and I know that my health comes first and that I need to heal. You never notice how strong you are until you need to be. I know everyone has the strength to get through their hard times or to help someone else through them. This is the time for me to heal and for me to help others like me through hard times like this.

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My Malar Rash & IT Cosmetics

This past summer I was chosen to be part of a commercial for IT Cosmetics. This commercial just aired this weekend. Check your local listings on TV for the commercial, it is called “No more wrinkles! Say byebye now and look younger”. I feel so blessed to be a part of this commercial and to have been chosen. I was chosen because of my story with Lupus and because of my malar rash that I get with Lupus. It was a dream come true and such a life changing experience. This is a wonderful skin care/make-up line that has helped many women. I have used their products for years and so has my mom. IT Cosmetics has made me more comfortable in my own skin. Having a chronic illness like Lupus, there are many things you can’t control. Lupus attacks our joints, blood, organs, central nervous system, skin, etc. With IT Cosmetics, I can semi-control the skin portion of this disease. With Lupus I get rashes and being a teenager I still have breakouts. When I get my malar rash, (a rash on my face, that spans from cheek to cheek bridging over my nose, refer to the picture from “Being The Best Version Of Yourself”) IT Cosmetics helps me feel like I am just a normal person without being covered in make-up to the point where I don’t recognize myself. This make-up/skin care line has changed my life. I have never found anything that was so light and so easy but yet gives me the coverage that I need. Lupus is one of those diseases that I never know what is going to happen next; however, with IT Cosmetics I know that I can always have full coverage and feel as beautiful on the outside as I feel on the inside every day.

Follow my blog at http://www.spreadyourwings4lupus.wordpress.com to get alerts of new posts by putting in your email!
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