Hi all -
So back in July I posted as a newbie when I was diagnosed. I have gone through and learned a lot since then and I feel maybe sharing would help. I am 25 and live in San Antonio, Texas and have found some of the best doctors in the San Antonio and Houston areas - just FYI.
1. The rheum started me on 400 MG daily Plaquenil towards the end of August, so I have been on it for 3 months now. I can tell a bit of a difference, my discoid rash flares have lessened and I have less flares and bad days. He also put me on Mobic 15 MG (non-steroidal anti-inflammatory)
2. The dermatologist would inject steroids into my actual discoid spots on my face (it hurts) but it works SO wonderfully. He also started giving me steroid shots once a month for 2 months and then had me on a prednisone taper for a month. I have been off of the prednisone for over a week now and I am feeling okay. Before I took the prednisone - when the steroid shot would wear off at the 3 week mark I would feel really crappy and want to stay in bed all day.
3. I stopped eating meat all together about a month ago and I feel a positive difference in my body. I did not gain much weight from the steroids and my lack of exercise (before my bad flares starting right before I was diagnosed I would exercise at least 3 days a week, now I don't exercise more than 2 days per week).
4. I also take the following medications and supplements, I have written what I take them for after each:
T3 Thyroid Hormone Slow Release Compounded, 3 - 12 MCG daily (low T3 levels, new problem since July)
Pristiq, 100 - 150 MG daily (I was not depressed before I started having Lupus flares but Lupus is depressing!!)
Biotin (a natural vitamin/mineral that helps with hair and skin growth - my hair was falling out!)
DHEA (a natural vitamin/mineral/supplement that helps with anti-aging and other benefits)
Vitamin D3 (because I have lessened my sun exposure)
Sub-lingual Vitamin B12 drops (because my B12 levels are low in my blood tests)
Adderall XR, 10 MG twice daily (because I have had ADHD my entire life)
5. Just as a side note - I did end up quitting my job completely and decided not to pursue the next job I was going to do so that I can focus on getting healthy. I know this is not always a choice for everyone but I have moved back in with my parents for now and am planning two weddings and bought a food truck like on the food truck race TV shows. All of these take energy but I have found that by removing stressful situations, jobs and people from my life it has become increasingly easier to deal with my lupus and feel optimistic about the future. God doesn't give us more than he thinks we can handle :)
Please feel free to direct message me if you have any questions!! I hope this helps.
I'm glad to see that you are finding a combination of things that work for you. The right meds, good nutrition and less stress seems to be a good combination.
I lived in San Antonio for 17 years, and I used to teach at Warren HS. The AF sent us to CA for three years, but we'll be moving back next fall. We own a house in Leon Valley.
You will have to keep me informed about your food truck business, and I'll look for it when I get back - I'm a foodie!
Thank you for sharing! I am also recently diagnosed and I think that sharing the good stuff/"success stories" is important, along with also being able to vent and get support for the bad stuff. We all definitely need some inspiration sometimes, and some light at the end of the tunnel.
So thanks, and I am so happy to hear you've made some positive changes to accommodate your "new you"....!
Very cool that you'll be back soon - do you mind if I ask that you tell me here or in private message who your doctors in town were? Where in CA did you have to relocate to? I will let you know the name/website of my truck once I have named it I also wanted to know if you'd maybe share you experience with tapering of prednisone/effects after you stopped taking it? As I mentioned earlier I recently stopped and I am curious how long it took for you to feel good again or if you were able to? I am going to go to my endocrinologist next week to have my adrenals checked out - hopefully they are working on their own again.
Marla, it's great that you have taken control of your body (and you life) and have a team of doctors who are actively treating your lupus. It's always good to hear what is working for people, and it's good for other newbies to see that lupus can bring about positive changes, too.
Just wanted to let you know that I was replying to Marla that commented on my original post but that my name is actually Sarah
Don't wait. The time will never be just right.
My husband is a military officer and worked at Lackland. He was sent out to Monterey, CA to get his PHD at The Naval Postgraduate School. After he finishes, he'll owe time back to the office at Lackland.
I did a bit of doc shopping in SA. Dr. Michelle Anson is the best PCP I have ever met. After messing around with an awful rheumy, she sent me to Dr. Emily Pineda. There is a long waiting list to see her, but she is worth it. I also saw the otolaryngologist Dr. Blake Simpson for my Spasmodic Dysphonia, and he is the greatest.
The only experience that I've ever had with any steroid was having some cortisone shots into my knees. Just a few shots caused my bones to begin eroding. It was found that I have Avascular Necrosis, so I am never allowed to have any kind of steroid again. I'm also terribly allergic to any opioid, so most heavy-duty pain meds are also out for me.
I'm taking Plaquenil daily, which seems to help my joints quite a bit. I also took MTX injections for about 18 months, which helped with my skin issues.
My major problem now is with spasming muscles. My otolaryngologist in San Francisco thinks that this is related to the dystonia in my vocal cords and thinks that I have Spastic Paraplegia. That is what I'm trying to get help with right now.