Been a while since I've been on blogger but in case you haven't been following me on twitter, I switched to WordPress 9 months ago....I know, really late making the announcement here.
Well you can now go to my official website at LissasWorld.com and click blog at the top of my page. I continue to talk all about my experience with Lupus and managing a family with 2 children. You can also learn about all my crafts, great recipes, and find super deals on everything. Sign up for our forums and share all your great ideas and experiences with others.
I'm looking forward to seeing you all there!
Sunday, August 22, 2010
Thursday, December 3, 2009
Lupus- Hair loss, swollen joints and rashes, oh my!
Hello there world! I had a follow up appointment with my rheumatologist today who treats my Lupus and Fibromyalgia. As you may recall in a previous blog, I have been having a very difficult time with the fibromyalgia for the past 7 months and have had to try several drugs such as a combination of Lyrica and Prozac, Soma, and now Cymbalta.
Good news: I am now on week 3 and the Cymbalta is now finally starting to help with my fibromyalgia pain and paresthesia. I am 30% better than I was before starting the Cymbalta. I still have depression and the Cymbalta hasn’t done a single thing to help that out. The doctor said to let it take a little more time to work its way into my system before we try an added medication to help with the depression.
Bad news: Lupus has been slowly making its way back in the forefront. My fingers are swollen to the point that they are shiny and red, my knuckles are bright red. I have traveling joint pain. My rashes from Tumid Lupus are out of control, covering my upper arms, cheeks and chest. And last but not least, my scalp is inflamed and forming new sores on a daily basis.
What does this mean? I am in a flare up, and its a bad one! I am on the generic version of Plaquenil called Hydroxochloroquine. This medication should be helping out my rashes and joint pain but it is not doing a single thing for my symptoms. It is time to start name brand Plaquenil to see if it helps me out any more than the generic version. He does not want to raise my Prednisone again, as we have been trying to lower it since September.
If the name brand of Plaquenil does not work then we will try Methotrexate weekly injections to try and control the skin and joint flare up. He does not want to jump into the Methotrexate, as I am already on another immunosuppressant called CellCept for my Lupus related kidney disease. The rheumatologist is testing my kidneys to see if they are going haywire again as well. I had 5 tubes of blood drawn today, which is not too bad seeing as though most of the time they draw anywhere from 5-10 vials.
My rheumatologist has informed me that I am not just sensitive to most forms of commercial lighting and sunlight anymore, it is making me extremely sick! Well, isn’t that lovely? He told me that I need to break down and buy a big hat to shade my face and wear long sleeves any time I am outside of my house on top of using the sunscreen. He said to buy sun protective clothing as well and to call my dermatologist for a visit. I looked online for some clothing, and Mr. Rheumatologist is out of his mind! These clothes are outrageously expensive!
I was so upset earlier today because of my news from my doctor that I called my husband to cry to him. I told him, “This whole Lupus business is way too expensive to keep up with.” He said that I was referring to the Lupus as if it’s the newest fad that I could choose to or not to follow. Okay, well, maybe the way I said it was a little bit ridiculous, as are many of the things that spit out of my mouth when I’m upset, but it is so true as well! Being sick is so expensive!
As far as my inflamed and sore covered scalp goes, I am a bit discouraged. Last December 2008 I began to develop the same symptoms of sores, inflammation, and itchiness which lead to hair loss by the end of the month. I had lost my hair for 3 months straight, and had a patch missing that was the size of my hand on my left side and on the back of my head. Oh goodness gracious, please don’t let me lose my hair again! I do have 2 wigs from the last time my hair fell out, but no matter how wonderful a wig looks, it is still not MY hair! And even if the wigs do look natural, they are itchy and make my head sweat. Big brimmed hat, you are my newest accessory!
Well, I guess it is time to get to researching sun protective clothing and preparing to sweat in long sleeves in the Sunshine State. I wonder if I am better off buying clothing or material to make my own clothing. Maybe there is a special type of detergent that will add the protection that I need. There has got to be a way to adjust more to my incredibly sensitive skin.
Good news: I am now on week 3 and the Cymbalta is now finally starting to help with my fibromyalgia pain and paresthesia. I am 30% better than I was before starting the Cymbalta. I still have depression and the Cymbalta hasn’t done a single thing to help that out. The doctor said to let it take a little more time to work its way into my system before we try an added medication to help with the depression.
Bad news: Lupus has been slowly making its way back in the forefront. My fingers are swollen to the point that they are shiny and red, my knuckles are bright red. I have traveling joint pain. My rashes from Tumid Lupus are out of control, covering my upper arms, cheeks and chest. And last but not least, my scalp is inflamed and forming new sores on a daily basis.
What does this mean? I am in a flare up, and its a bad one! I am on the generic version of Plaquenil called Hydroxochloroquine. This medication should be helping out my rashes and joint pain but it is not doing a single thing for my symptoms. It is time to start name brand Plaquenil to see if it helps me out any more than the generic version. He does not want to raise my Prednisone again, as we have been trying to lower it since September.
If the name brand of Plaquenil does not work then we will try Methotrexate weekly injections to try and control the skin and joint flare up. He does not want to jump into the Methotrexate, as I am already on another immunosuppressant called CellCept for my Lupus related kidney disease. The rheumatologist is testing my kidneys to see if they are going haywire again as well. I had 5 tubes of blood drawn today, which is not too bad seeing as though most of the time they draw anywhere from 5-10 vials.
My rheumatologist has informed me that I am not just sensitive to most forms of commercial lighting and sunlight anymore, it is making me extremely sick! Well, isn’t that lovely? He told me that I need to break down and buy a big hat to shade my face and wear long sleeves any time I am outside of my house on top of using the sunscreen. He said to buy sun protective clothing as well and to call my dermatologist for a visit. I looked online for some clothing, and Mr. Rheumatologist is out of his mind! These clothes are outrageously expensive!
I was so upset earlier today because of my news from my doctor that I called my husband to cry to him. I told him, “This whole Lupus business is way too expensive to keep up with.” He said that I was referring to the Lupus as if it’s the newest fad that I could choose to or not to follow. Okay, well, maybe the way I said it was a little bit ridiculous, as are many of the things that spit out of my mouth when I’m upset, but it is so true as well! Being sick is so expensive!
As far as my inflamed and sore covered scalp goes, I am a bit discouraged. Last December 2008 I began to develop the same symptoms of sores, inflammation, and itchiness which lead to hair loss by the end of the month. I had lost my hair for 3 months straight, and had a patch missing that was the size of my hand on my left side and on the back of my head. Oh goodness gracious, please don’t let me lose my hair again! I do have 2 wigs from the last time my hair fell out, but no matter how wonderful a wig looks, it is still not MY hair! And even if the wigs do look natural, they are itchy and make my head sweat. Big brimmed hat, you are my newest accessory!
Well, I guess it is time to get to researching sun protective clothing and preparing to sweat in long sleeves in the Sunshine State. I wonder if I am better off buying clothing or material to make my own clothing. Maybe there is a special type of detergent that will add the protection that I need. There has got to be a way to adjust more to my incredibly sensitive skin.
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